Close
Home
Collections
Login
USC Login
Register
0
Selected
Invert selection
Deselect all
Deselect all
Click here to refresh results
Click here to refresh results
USC
/
Digital Library
/
University of Southern California Dissertations and Theses
/
Getting to end-of-life discussions in advanced cancer care: barriers and attitudes that limit end-of-life communication for disadvantaged Latinos
(USC Thesis Other)
Getting to end-of-life discussions in advanced cancer care: barriers and attitudes that limit end-of-life communication for disadvantaged Latinos
PDF
Download
Share
Open document
Flip pages
Contact Us
Contact Us
Copy asset link
Request this asset
Transcript (if available)
Content
GETTING TO END-OF-LIFE DISCUSSIONS IN ADVANCED CANCER CARE:
BARRIERS AND ATTITUDES THAT LIMIT END OF LIFE COMMUNICATION
FOR DISADVANTAGED LATINOS
by
Frances Ruth Nedjat-Haiem
A Dissertation Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(SOCIAL WORK)
August 2010
Copyright 2010 Frances Ruth Nedjat-Haiem
ii
DEDICATION
This dissertation is dedicated to all of my family members who have supported
me throughout my educational journey. Without the support of my husband and my
family this dissertation would have never been part of my life. I am so grateful for
everyone who has made a contribution by supporting me through this process. To my
husband, Isaac Nedjat-Haiem, I love you and appreciate your dedication, kindness, and
enthusiasm about my growth and development. Thank you for being forever caring and
supportive. Your continual guidance has been an instrumental part of my life, freeing me
to think in new directions and attain my educational goals. To my children who have
watched their mother take on each educational step, from graduating with a Bachelors
degree in Psychology, a Masters degree in Social Welfare, and a PhD in Social work.
You have seen what it takes to build a career and I hope that this will inspire you to
follow your own dreams.
iii
ACKNOWLEDGEMENTS
I would like to thank the members of my dissertation committee for their support
and guidance throughout the development of my research program. Dr. Lawrence
Palinkas and Dr. Kathleen Ell have been instrumental in guiding me towards writing and
garnering a dissertation grant in oncology social work from the American Cancer Society
as well as supporting my research ideas through completion of this project. I am honored
to have been guided by such outstanding scholars. Thank you for believing in me and my
research ideas. In addition, I would like to especially thank the providers, the Latino
patients, and their family members in my study who allowed me to question them about
their experiences with cancer and course of dealing with a terminal condition. My hope
is that this research will demonstrate the need for change to improve the continuity of
your care and limit the amount of pain and suffering that can accompany the dying
process.
This study was support by the American Cancer Society (ACS) Doctoral Training Grant
in Oncology Social Work (DSW-06-220-03 SW).
iv
TABLE OF CONTENTS
Dedication ..............................................................................................................................ii
Acknowledgements ................................................................................................................iii
List of Tables .........................................................................................................................vi
List of Figures ........................................................................................................................vii
Abstract ..................................................................................................................................viii
CHAPTER 1: The Problem Statement ..................................................................................1
Background of the Problem ...................................................................................................1
Purpose of the Study ..............................................................................................................2
The Problem ..........................................................................................................................7
Specific Aims and Research Questions .................................................................................11
Research Questions ................................................................................................................12
Significance of the Problem ...................................................................................................12
Overview of the Study ...........................................................................................................13
Organization of the Study ......................................................................................................14
CHAPTER 2: Literature Review ...........................................................................................16
Social and Cultural Factors Influencing End of Life Communication ..................................16
Provider Factors Influencing Effective EOL Communication ..............................................19
Conceptual Framework ..........................................................................................................22
Conclusion .............................................................................................................................27
CHAPTER 3: Research Methods...........................................................................................29
Overview ................................................................................................................................29
Research Aims and Questions ...............................................................................................30
Research Site ..........................................................................................................................30
Population Characteristics within the Community ................................................................31
Research Design.....................................................................................................................32
Recruitment ............................................................................................................................32
Phase I: Provider Interviews and Observations .....................................................................32
Phase II: Triad Interviews and Observations .........................................................................34
Sampling ................................................................................................................................36
Procedures ..............................................................................................................................37
Data Analysis and Interpretation ...........................................................................................39
CHAPTER 4: Sample ............................................................................................................44
Demographics: Phase One .....................................................................................................44
Demographics: Phase Two ....................................................................................................46
Description of the triad subjects ............................................................................................48
v
CHAPTER 5: Results ............................................................................................................60
Overview of phase one: Provider interviews .........................................................................60
Phase one: A description of some providers ..........................................................................61
Role Descriptions ...................................................................................................................64
Who should initiate EOL discussions? ..................................................................................69
Some providers are hesitant to begin EOL discussions .........................................................71
Who is the one in charge when multiple primary care physicians exist? ..............................72
Collaborative efforts across provider types ...........................................................................73
Timing of EOL discussions and rapport building ..................................................................74
Multiple existing barriers make EOL discussions more difficult for Latinos .......................79
Patient-level barriers: Perceived passivity, education level, beliefs and fears ......................82
“We do generally find that our patients are very passive.” ....................................................82
Latino patients may be afraid to ask questions .................................................................................. 83
CHAPTER 6: Results ............................................................................................................86
Phase Two: Triad Interviews .................................................................................................86
Understanding illness severity & holding onto hope in the treatment and the doctor ...........88
Did patients and physicians have EOL discussions? .............................................................94
Armando’s case study: Prefers not to know the severity of his illness ..................................96
In Reyes’s case, it was too soon to have an EOL discussion: “We have more plans.” .........99
Roberta’s case: more gaps in EOL communication ...............................................................103
Maria’s case also demonstrates gaps in EOL communication ...............................................105
Helena’s case: EOL discussions get delayed until times of crisis .........................................107
Alma’s case: Misunderstanding about the severity influenced gaps in cancer care ..............109
Blanca’s case: The exception of where patients understand their illness severity ................113
Mario’s case: End of life discussions could start early ..........................................................114
CHAPTER 7: Discussion .......................................................................................................119
Phase I: Provider Interviews and Observations .....................................................................120
Phase II: Triad Interviews and Observations .........................................................................123
Consequences of delaying EOL discussions..........................................................................130
Recommendations and Implications for Practice ..................................................................134
Limitations .............................................................................................................................142
Implications for research........................................................................................................142
Conclusion .............................................................................................................................145
References ..............................................................................................................................146
Appendices .............................................................................................................................157
Appendix A. Informational Sheet ..........................................................................................157
Appendix B. Recruitment Flyer .............................................................................................160
Appendix C. Consent and HIPAA forms ...............................................................................161
vi
LIST OF TABLES
Table 1. Provider Interview Themes and Questions ..............................................................42
Table 2. Triad Interview Themes and Questions ...................................................................43
Table 3. Demographic Characteristics of Providers .............................................................45
Table 4. Demographic Characteristics of Triads ..................................................................47
Table 5. Demographic Characteristics of Patients in the Triads ............................................49
Table 6. Demographic Characteristics of Family Members in the Triads .............................50
Table 7. Demographic Characteristics of Providers in the Triads .........................................51
Table 8. Role Descriptions for Engaging in EOL Discussions by Provider Type .................66
Table 9. End of Life Discussions for Patients........................................................................90
Table 10. End of Life Discussions for Providers ...................................................................92
Table 11. Recommendations to Improve EOL Discussions by Provider Type .....................140
vii
LIST OF FIGURES
Figure 1. Melding an Illness Trajectory within a Socio-cultural Context .............................23
Figure 2. The Context of Developing EOL Goals of Care ....................................................69
viii
ABSTRACT
End-of-life (EOL) care communication involves dialogue among providers,
patients, and family members as early as possible after diagnosis of serious illness to
facilitate informed decisions about healthcare. Despite acknowledgement of EOL
communication as an important facet of terminal illness, research on this topic is sparse,
particularly with regard to underserved populations such as Latinos in the United States.
Problems with or gaps in EOL communication can contribute to mismanagement of
symptoms, over- or under-treatment, and increased psychological distress in patients and
families. Ethnic disparities complicate EOL communication and care because
underserved populations face additional barriers that further hinder effective
communication and symptom management.
The aim of this study was to explore perceptions of the barriers to engaging in
EOL decision-making discussions, specifically among low-income Latinos who are
living with an advanced life-threatening cancer condition. Perceptions were explored
with a purposive sample of participants who completed semi-structured, in-depth
interviews. The study was conducted in two data collection phases: first, with providers
(n=44; physicians, social workers, nurses, and chaplains) working in a public sector
health care setting; and second, with triads (n=9 triads) of a low-income Latino advanced
cancer patient, the patient’s family member, and the patient’s provider (physician or
nurse). Ethnographic observations in the clinic setting augmented the interview data.
Data were analyzed using a constant comparison method rooted in grounded theory and a
template matrix approach.
ix
Interviews and observations revealed a complex context of EOL decision-making
discussions that includes: 1) patients’ ability to cope with the physical, emotional, social,
and life-course changes, their beliefs about illness, and their prior experiences with the
healthcare system; 2) patients’ family members and their previous and current
involvement with their loved one, providers, and the medical system; 3) providers’ skills
and ability to educate patients and their family members about EOL care options, and
their attitudes about treatment appropriateness; and 4) the public healthcare system,
which contains several system-level barriers.
Interviews also revealed that EOL discussions are often not occurring when they
should occur (i.e., shortly after diagnosis of a terminal illness). Instead, these discussions
were delayed until times of acute crisis (e.g., emergency hospitalization), at which time
patients’ wishes could not be thoroughly explored, and physicians could not focus on
more existential, less immediately pressing issues. Overall, in this sample, both
physicians and patients tended to avoid focusing on EOL wishes, instead preferring to
focus on treatment and the possibility of cure. Unfortunately, the consequent lack of
patient-physician EOL communication contributed to problems such as missed
information about patients’ preferences for EOL care, and patients’ misunderstanding
about the purpose of treatment and likelihood of dying from cancer. Considering the
consequences of insufficient EOL communication—particularly for disadvantaged
populations such as low-income Latinos—further attention needs to be paid to the
development of clinical strategies and interventions that will improve the timing, quality,
and relevance of this important domain of communication for patients with terminal
illnesses.
CHAPTER 1: THE PROBLEM STATEMENT
Purpose of the Study
The objective of this study is to explore patients’, family members’, and health
care providers’ (physicians, nurses, social workers, and chaplains) perceptions of barriers
to engaging in EOL decision-making communication between physicians and low-
income Latinos who are living with an advanced life-threatening cancer condition. This
study identifies and examines the issues that hinder or support EOL discussions (e.g.,
medical system factors, socio-cultural factors, family involvement, and limited resources)
with this vulnerable population.
This study builds upon prior work in the areas of EOL decision-making, doctor-
patient communication, and cancer related issues among Latinos like lack of preventive
care and screening (Byock, Caplan, & Snyder, 2001; Colon, 2005; Dosanjh, Barnes, &
Bhandari, 2001; Field & Cassel, 1997; Green et al., 2003; Haffner, 1992; Kilbourne,
Switzer, Hyman, Crowley-Matoka, & Fine, 2006; Lorenz et al., 2004; Snyder & Quill,
2001; Stewart & Napoles-Springer, 2003; Suurmond & Seeleman, 2006; U.S.
Government Accountability Office, December 2007). These studies recognize the
barriers in shared decision-making among providers and their underserved patients,
limitations of language and translation for immigrants in health care interactions, barriers
to breaking bad news in general, and the issues that confront racial and ethnic disparities
in pain and symptom management. However, there is a lack of empirical evidence that
examines the multiple factors that contribute to barriers in EOL communication for
underserved Latinos with end stage cancer conditions.
2
Some studies have focused on poor decision-making among Latinas who may
prefer to speak Spanish and have limited health literacy; these issues impact poor breast
cancer outcomes, for example, and dissatisfaction in decision-making (Hawley et al.,
2008). This data suggests that Latinos with advanced cancers may be particularly
vulnerable when faced with EOL decision-making; however, there currently is
insufficient evidence that monolingual Spanish-speaking Latinos are at risk for poor EOL
decision-making. It is unclear what is happening or what is needed for Latinos when
EOL discussions recommend hospice or palliative care Latino patients. Consequently, a
gap remains in EOL care resources for this disadvantaged population (Givens, Tjia,
Zhou, Emanuel, & Ash, 2010). Accepting hospice care benefits is about making
informed choices, which is complicated for Latinos because of language and health
literacy barriers as well as possible prior negative experiences with getting into the health
care system.
The Setting
End of life decision-making communication involves provider-patient
communication to discuss the risks and benefits of continuing treatment, to consider
transitioning the focus from continued treatment to comfort care as well as quality of life,
and to identify patient preferences and goals for EOL care. Such discussions can occur in
advance as in advanced care planning; however, this is the exception. Instead, EOL
decision-making typically takes place when treatment is no longer working or when
hospitalization occurs due to an acute medical condition at which time such discussions
involve wishes for or against life supportive treatment measures (e.g., resuscitation,
mechanical ventilation, feeding tube, antibiotics, and hemodialysis) (Quill, 2000).
3
Palliative and hospice care guidelines advocate for beginning such discussions in the
early stages of a progressive, life-threatening or debilitating illness (ICSI - Institute for
Clinical Systems Improvement, November 2009).
In order to begin developing a relationship with their patients, providers speak
with their patients about their personal goals of care that are consistent with the patient’s
values in life and desire for treatment. It is important to begin discussions early enough
for patients to have meaningful and active participation in the decision-making process,
before they begin to experience much pain or suffer cognitive decline (Broadwell,
Boisaubin, Dunn, & Engelhardt, 1993; Emanuel, Barry, Stoeckle, Ettelson, & Emanuel,
1991). Patients’ goals of care can change over time as they begin to experience a
worsening of symptoms. Since patients may change their wishes about the treatment
course, it is important for providers to present opportunities for dialogue with their
patients for the duration of the treatment course.
A Spectrum of End-of-Life Issues
Provider-patient end of life communication involves a spectrum of issues. In this
communication, patients and providers could: discuss treatment options and preferences;
establish goals of care in order to honor patient wishes for treatment; document an
advance directive; consider ethical issues in decision-making; address pain and
symptoms; involve getting personal affairs in order; address family concerns; engage
spiritual and religious beliefs when voiced; an discuss options for palliative and hospice
care (Curtis, 2000; Emanuel, von Gunten, & Ferris, 1999; Larson & Tobin, 2000; Lo,
Quill, & Tulsky, 1999). The tone of this communication could vary (even within one
discussion) from slightly serious (e.g., documenting a living will for future needs) to very
4
serious discussions about EOL care wishes (e.g., desire for life-support, beliefs about
withholding or withdrawing therapy when the time comes, place of death, and funeral
plans). In other words, there is potential for patients and providers to discuss a gamut of
ideas about living while at the same time discuss the possibility of dying. While the
literature demonstrates that providers have a hard time engaging in discussions about bad
news, end of life care discussions can allow providers to begin talking about the
possibility of dying while continuing treatment (Buckman, 1992).
In patient-provider discussions, one of the goals is the development of a treatment
plan that is centered on the patient’s wishes, which can change over time. Establishing a
treatment plan involves exploring the treatment course and the possibility of curing the
disease, likelihood of premature death, desire to maintain or improve physical
functioning as much as possible, wish to prolong life and relieve suffering, ability to
optimize quality of life and maintain of control, desire for a good death, and wish to
protect and support family members and loved ones (Stone, 2001). The treatment plan
may also involve advance care planning. Such discussions allow people to record their
wishes for end of life care in an advance directive document which will take effect in the
event that a person can no longer participate in decision making and their condition is
terminal or irreversible requiring life-sustaining treatment. Such forms identify patient’s
wishes for aggressive types of medical treatment versus discontinuing all types of
treatment as well as appoint a health care proxy to assist with doctor-patient decision
making (Hoffmann, Zimmerman, & Tompkins, 1997).
5
In identifying a patient’s goals of care, providers need to focus on their values and
preferences which can be characterized as a patient-centered care approach. For
example, patient-centered care needs to:
identify, respect, and care about patient differences, values, preferences, and
expressed needs; relieve pain and suffering; coordinate continuous care; listen to,
clearly inform, communicate with, and educate patients; share decision making
and management; and continuously advocate disease prevention, wellness, and
promotion of healthy lifestyles, including focus on population health (Adler &
Page, 2008, p. 310).
Providers need not experience developing patient-centered goals of care in isolation.
Recommendations for such care identify the importance of having an interdisciplinary
team approach to patient care that involves interactions between providers that intend to
“cooperate, collaborate, communicate, and integrate care in teams to ensure that care is
continuous and reliable (Adler & Page, 2008, p. 310).”
When providers work together on interdisciplinary teams they have a better
chance of identifying EOL issues as they arise which helps to understand a patient’s
illness course. The concept of the course of illness or dying trajectory of an illness often
helps providers identify the likelihood of impending death, which in turn signals a need
to address EOL discussions to prepare patients and their family members for the course
of dying (Glaser & Strauss, 1968). Awareness of dying trajectories help physicians
recognize the likelihood that death is near. When impending death is not recognized
before the actually death, family members tend to lack preparation and can experience the
death as a sudden shock (Hallenbeck, 2003). Dying trajectories of a cancer condition
have a more predictable course that most illnesses. Research demonstrates the
connection between the drop in functional functioning and death in cancer patients. The
dying trajectory of an advance cancer condition is unique and appears differently than
6
other chronic conditions like heart disease and stroke (Teno, Weitzen, Fennell, & Mor,
2001). For example, depending upon the tumor type and location, cancer patients can
live some time before beginning to experience a decline in their health status, which
signals approaching death. With an advanced cancer condition (e.g., stage IV cancer
with liver, brain, or lung metastases), when the patient’s health status begins to decline,
for example, they begin to lack an ability to get up out of bed on their own, have
difficulty walking, and/or begin to have difficulty getting from a chair or bed to go to the
bathroom, then they are most likely approaching the final stage of their life (American
Cancer Society, 2009; Teno, et al., 2001).
The final stage can take a long or short course depending upon the multiple
factors that are associated with an illness course (Field & Cassel, 1997). In the final stage
of life patients health may rapidly decline and they may experience a dramatic drop in
their ability to function physically. A person is in the final stage of life when their illness
is no longer responding to treatment, at which time the person is more likely to die from
their illness (American Cancer Society, 2009). The final stage of life among patients
with metastatic cancers is more predictable than most illnesses (Hallenbeck, 2003).
When cancer patients enter the final stage of life they are likely to experience a sharp
decline in physical functioning which indicates they have approximately less than six
months to live (Costantini, Beccaro, & Higginson, 2008; Teno, et al., 2001), at which
time hospice and palliative care is offered.
Palliative care is defined by the World Health Organization and others as an
interdisciplinary or multidisciplinary approach to health care that is focused on
management of pain and other symptoms. Palliative care approaches death and dying as a
7
natural part of life and does not intend to hasten or postpone death. This approach to EOL
care is designed to improve:
the quality of life of patients and their families facing the problem associated with
life-threatening illness, through the prevention and relief of suffering by means of
early identification and impeccable assessment and treatment of pain and other
problems, physical, psychosocial and spiritual (World Health Organization, 1990)
[Palliative care] integrates the psychological can spiritual aspects of patient care;
offers a support system to help patients live as actively as possible until death;
offers a support system to help the family cope during the patients illness and in
their own bereavement; uses a team approach to address the needs of patients and
their families, including bereavement counselling, if indicated; will enhance quality
of life, and may also positively influence the course of illness; is applicable early in
the course of illness, in conjunction with other therapies that are intended to prolong
life, such as chemotherapy or radiation therapy, and includes those investigations
needed to better understand and manage distressing clinical complications (World
Health Organization, 1990)
Palliative and hospice care have some similarities and differences. While they both
address pain and symptom management, comfort care, and quality of life issues for
people with serious or life-limited conditions, palliative care addresses symptom burden
or goals of care regardless of the life expectancy. In contrast, hospice care specifies that
a doctor determine life-expectancy to be six months or less and then the goals of care
shift to primarily achieve and maintain physical comfort in the final stage of life (ICSI -
Institute for Clinical Systems Improvement, November 2009).
The Problem
The scientific base of end-of-life (EOL) care is characterized by numerous gaps
(Field & Cassel, 1997). The National Institutes of Health State-of-the-Science
Conference on Improving End of Life Care identified doctor-patient communication at
the end of life as a significant problem that is poorly understood and one which merits
exploration (Grady, 2005). While EOL communication is highly complex in general, it is
8
especially complicated for disadvantaged Latinos who experience language barriers and
health disparities (Institute of Medicine, 2003). Inadequate doctor-patient
communication can negatively impact the quality of the last stage of life and the dying
experience, leaving people to struggle with impending death without sufficient
information about symptom management and linkages to resources.
Most physicians prefer not to discuss EOL issues with terminally ill patients when
their patients are feeling well (Keating et al., 2010). Physicians tend to postpone these
difficult discussions until their terminally ill patients’ symptoms worsen and/or until there
are no more treatments left to offer (Keating, et al., 2010). Physicians are not the only
ones to postpone these discussions. Research suggests that patients and their family
members are also ambivalent about talking about death and dying and avoid such
conversations altogether (Baile, Lenzi, Parker, Buckman, & Cohen, 2002; E. J. Gordon &
Daugherty, 2003; Hagerty et al., 2004; Leydon et al., 2000; The, Hak, Koeter, & van der
Wal, 2001). Consequently, EOL discussions are not occurring soon enough to influence
the receipt of important information that could lower anxiety and fear about dying
(Hofmann et al., 1997; The SUPPORT Principal Investigators, 1995). This leaves
patients uninformed about the possibility of dying until the last few weeks of life, leaving
very little time for these important discussions to occur. When communication problems
exist or when communication does not occur, patients tend to encounter barriers to
symptom management such as pain and fatigue (Juarez, Ferrell, & Borneman, 1998;
Kimberlin, Brushwood, Allen, Radson, & Wilson, 2004), which can lead to increased
psychological distress (Lerman et al., 1993). Patients may also neglect to finalize
9
personal affairs and say goodbye. This can have devastating effects on the family
members who are grieving the loss of their loved ones.
Lack of doctor-patient communication at the end of life is pertinent to all patients
with terminal illnesses, but it may be particularly problematic among vulnerable
populations such as minorities who experience multiple barriers within the United Stated
healthcare system. When compared with Whites, racial and ethnic minorities are more
likely to receive lower quality and intensity of health care (Institute of Medicine, 2003).
Latino cancer patients are at risk for experiencing high levels of psychological distress
when accessing health care (Moadel, Morgan, & Dutcher, 2007; Spencer et al., 1999).
Regardless of age, gender, education, or insurance status, Spanish-speaking Latinos are
more likely than Whites to be dissatisfied with their healthcare communication (Morales,
Cunningham, Brown, Liu, & Hays, 1999). Of particular importance is the fact that when
Latinos are diagnosed with some common cancers (e.g., breast and lung) they are most
likely to be diagnosed in the advanced stages (American Cancer Society, 2007; Hewitt,
Greenfield, & Stovall, 2006). Latinos often lack health insurance and preventive health
care to discover and treat cancer in the early stages (Latino Coalition for a Healthy
California, January 2005). Very little is known, specifically about Latinos with advanced
cancers and their desire to engage in end of life communication, but it is well-
documented that these patients tend to experience poor symptom management,
significant pain, suffering, and psychological distress (Christakis, 2000; Cleeland, Gonin,
Baez, Loehrer, & Pandya, 1997; Green, et al., 2003; Institute of Medicine, 2003; Juarez,
et al., 1998; Zabora et al., 1997). Such negative experiences can impede the possibility of
10
building a proper doctor-patient relationship, and can contribute to distrust in physicians
(Buki, Borrayo, Feigal, & Carrillo, 2004; Salander, 2002).
Patients and their family members need adequate time to consider treatment
options that are consistent with their cultural values and preferences for EOL care (Field
& Cassel, 1997) which, for some, means stopping all treatment and accepting hospice
care, and for others, continuing treatment for as long as possible. EOL decision-making
communication is complicated by provider and patient factors that fail to address patient-
centered goals of care as well as the many psychosocial problems that are associated with
terminal illness (Adler & Page, 2008; American Society of Clinical Oncology, 1998;
Christakis, 2000; Daugherty, 2004; Snyder & Quill, 2001; Thompson, McClement, &
Daeninck, 2006). For example, some providers neglect to engage patients in
communication about the: 1) anxiety and depression often associated with advanced
cancers; 2) the impact of terminal illness on the family which often includes conflict; 3)
the financial burden of health care costs; and 4) the existential angst which can arise as
death approaches (Adler & Page, 2008).
For Latino patients, EOL discussions are complicated by multiple barriers that
hinder management of a cancer condition (e.g., language, age, education, and income)
(Lannin et al., 1998; Maly, Leake, & Silliman, 2003; Williams, 2004). Medical providers
(e.g., physicians and nurses) are influenced by their training in a medical model, which
maintains a focus on the treatment of medical problems and can limit attention towards
psychosocial, economic, cultural, and existential issues. Social workers and chaplains are
typically influenced by biopsychosocial and spiritual models, but may lack the skills to
address EOL communication (National Association of Social Workers, 2005). Although
11
agencies like the Institute of Medicine, the Agency for Healthcare Research and Quality,
and the United States Government Accountability Office have outlined guidelines for
patient-centered EOL discussions, providers are not making optimal use of these
guidelines (Betancourt, Green, Carrillo, & Ananeh-Firempong, 2003; Field & Cassel,
1997; Gregg & Saha, 2006; Lorenz, et al., 2004; U.S. Government Accountability Office,
December 2007; von Gunten, Ferris, & Emanuel, 2000).
Specific Aims and Research Questions
Underutilization of hospice and palliative care among minorities points to gaps in
EOL care for Latinos. Clearly, disparities exist for Latinos when accessing health care;
however, there is a lack of empirical evidence that would explain the limitations in
connecting Latinos to EOL care resources, especially after they have accessed health care
for their cancer condition. Why are Latinos not getting to hospice and palliative care? Is it
a problem in EOL care communication? Is it a lack of desire to talk about dying for both
Latino patients and their providers? Or, is it something else (e.g., cultural beliefs) that
influence patient-provider EOL communication? And, what is the impact on an already
disadvantaged population when they find out that their cancer treatment is no longer
working and no one has discussed the possibility that death is imminent? This study
attempts to fill the gaps in knowledge about the desire to engage in EOL care
communication for Latino patients, their family members, and their providers.
This exploratory study aimed to:
1) Explore providers’ perceptions of the need to engage in EOL decision-making
discussions specifically with Latinos living with advanced cancers
12
a. describe providers’ perceptions of their roles in engaging in EOL
discussions
b. examine barriers to EOL decision-making discussions
2) Explore perceptions of illness severity among triads (patient, family member,
provider) to identify gaps in decision-making communication about the course of
care (treatment expectations and desired outcomes)
Research Questions
The following questions guided this exploratory study: (1) What are providers’
perceptions about engaging in EOL discussions with low-income Latinos advanced
cancer? (2) What factors hinder providers and patients from engaging in EOL
discussions about the treatment course of an advance cancer condition? (3) What are the
consequences of miscommunication in EOL decisions-making discussions?
Significance of the Problem
While much research and education has focused on what providers should do to
improve EOL communication with their patients, there are relatively few studies that
address EOL care issues with underserved, Spanish-speaking Latinos (Born, Greiner,
Sylvia, Butler, & Ahluwalia, 2004; Taxis, Keller, & Cruz, 2008). A handful of studies
examine the perspectives of Latino patients regarding barriers to hospice care, but these
studies do not address patients’ views, desire, or ability to engage in EOL
communication, nor do these studies include provider perspectives on the barriers to and
facilitators of EOL communication for this disadvantaged group. In order to provide
patient-centered care that is consistent with patients’ personal values and preferences as
well as to improve overall patient care at the end of life for Latinos, we need to know
13
more about the factors that hinder or support effective EOL decision-making. This
dissertation addresses a gap in the literature by studying what patients, providers, and
family members experience around EOL communication. This exploration emphasizes
the need to improve EOL care for an underserved population that continues to experience
multiple barriers to care and that is particularly burdened by advanced cancers when
diagnosed with cancer.
Overview of the Study
This study explored perceptions of EOL decision-making communication in order
to examine various factors that hinder or support engaging in such discussions. Mixed
qualitative research methods were utilized (e.g., in-depth, semi-structured interviews,
ethnographic observations, and medical social work experience) in order to gather rich,
descriptive information about the factors that influence patient-provider EOL discussions
with low-income Latinos. As such, qualitative methods were used to explore perceptions
of EOL discussions in order to develop a grounded theory analysis about these issues.
Data collection involved two phases: 1) data collection with providers including
physicians, nurses, social workers, and chaplains; and 2) data collection with triads of a
patient, a family member, and a provider (most often their physician) together. The use
of data triangulation from a variety of data sources and theoretical triangulation from
multiple perspectives enabled a more meaningful examination and consequent
description of the findings related to the specific aims of the study (Denzin, 2009; Patton,
2002; Strauss & Corbin, 1998).
14
Organization of the Study
Chapter 1 presents the overview of the study, the significance of the problem, the
purpose of the study, the specific aim and research questions to be addressed, defines the
setting and a spectrum of end-of-life issues under study in this research.
Chapter 2 presents the literature review focusing on factors that might influence EOL
communication for underserved Latinos such as socio-cultural beliefs and values as well
as provider factors that influence the discussion. This chapter also presents a conceptual
framework that was developed and guided by existing theory on death and dying and
palliative care.
Chapter 3 presents a description of the process and procedures utilized in the
development and implementation of this study in terms of the: research design, research
questions, recruitment, sampling procedures, and data collection, analysis, and
interpretation.
Chapter 4 presents the overall description of the sample in phase one that describes
providers across providers types (e.g., physicians, nurses, social workers, and chaplains)
as well as phase two that includes descriptive information about providers, patients, and
their family members.
Chapter 5 presents the findings from phase one data collection with providers. In this
chapter, analysis of semi-structured interviews led to the identification of emergent
patterns that illustrated perceptions of providers and the processes involved in EOL
decision-making discussions, specifically with Latinos.
Chapter 6 presents the findings from phase two data collection with triads (provider,
patient, and family member). Analysis of the triad data explored: 1) the congruence of
15
understanding of the severity of the cancer condition (e.g., knowledge of the cancer and
severity, preferences about knowing the severity, beliefs about the course and issues of
concern) and 2) whether EOL discussions had verifiably occurred.
Chapter 7 presents a discussion of the findings in phase one and two that connects all the
findings. This chapter explored the multilayered issues that influenced EOL discussions
for providers, patients, and their family members and culminated with conclusions and
recommendations.
16
CHAPTER 2: LITERATURE REVIEW
Social and Cultural Factors Influencing End of Life Communication
An important area of cancer communication centers upon health disparities and
the multiple barriers that influence comprehension of an illness course for disadvantaged
groups. Research indicates that Latinos are more likely than non-Hispanic whites to be
diagnosed with late-stage cancers and they have poorer health outcomes and lower
survival rates (American Cancer Society, 2007). As a minority group, Latinos experience
health disparities and ineffective doctor-patient communication that contribute to distrust
in providers; lack of receipt of timely, accurate testing and treatment; late-stage
diagnosis; and higher rates of death than whites (Ashton et al., 2003; Caplan, Helzlsouer,
Shapiro, Wesley, & Edwards, 1996; H. S. Gordon, Street, Sharf, Kelly, & Souchek, 2006;
Institute of Medicine, 2003; Shavers & Brown, 2002). As such, Latinos are not receiving
needed information, nor are they accessing resources to understand the severity of their
illnesses (Bade, Murphy, & Sullivan, 1999; Colon, 2005; Taxis, Keller, & Cruz, 2008;
Tellez- Giron, 2007). Ineffective discussions and miscommunication increase the barriers
to needed resources and create confusion about the course of a life-threatening condition
(Gelfand, Balcazar, Parzuchowski, & Lenox, 2001; Taxis, et al., 2008). For reasons that
are unclear, providers are less likely to discuss the severity of a poor prognosis with non-
white patients (e.g., African Americans and Latinos) than their White counterparts
(Borum, Lynn, & Zhong, 2000; Curtis, Patrick, Caldwell, Greenlee, & Collier, 1999;
Haas et al., 1993; van Ryn & Fu, 2003). Furthermore, minority populations are less
likely to receive adequate pain control and symptom management when facing all types
of pain from various illnesses (Cleeland, et al., 1997; Green, et al., 2003; Lynn, 2005).
17
Ineffective communication can be worse for Latino cancer patients: for example, Juarez
and colleagues found poorer symptom management specifically for Latinos, who
experienced the worst, uncontrolled pain when compared to African Americans and
Whites (Juarez, Ferrell, & Borneman, 1999). Such experiences potentially cast a shadow
on the doctor-patient relationship and effective communication in that relationship (Buki,
et al., 2004; Salander, 2002).
Cultural factors influence healthcare communication for both patients and
providers whose views about life, illness, and death are shaped to a large extent by the
culture(s) they embrace (Ashing-Giwa, Padilla, Bohórquez, Tejero, & Garcia, 2006).
Providers may not know or acknowledge that patients’ sociocultural and emotional
factors contribute to their continual struggles in healthcare decision-making (Kagawa-
Singer & Kassim-Lakha, 2003; Royak-Schaler et al., 2006) and their intellectual and
emotional understanding of medical information (Ashing-Giwa, et al., 2006; Garces,
Scarinci, & Harrison, 2006; Larkey, Hecht, Miller, & Alatorre, 2001; Yeo, 2004).
Western medicine focuses on individual decision-making, disease management, and cure,
which emphasizes straightforward, candid discussions about poor prognosis in order to
ensure clear understanding of a treatment course regarding a life-threatening condition
(Field & Cassel, 1997; Kaufman, 2005; Lorenz, et al., 2004; Morris, 1998; U.S.
Government Accountability Office, December 2007). However, in practice, these
discussions may not be occurring with minority patients, and/or minority patients might
not find the discussions to be as straightforward as physicians intend.
Although guidelines exist and providers now receive training in cultural
competency, differing cultural views can complicate doctor-patient interactions (Kagawa-
18
Singer & Kassim-Lakha, 2003). Conflict can arise when patients and doctors differ in
their views on the necessity of engaging in EOL discussions. Cultural views and
expectations about disclosure of illness, treatment options, and the informed consent
process can vary tremendously (Hern, Koenig, Moore, & Marshall, 1998). Recent Latino
immigrants tend to retain cultural health beliefs and practices as well as their primary
Spanish language which could affect doctor-patient communication (Angel & Cleary,
1984; Larkey, et al., 2001). Moreover, Latino immigrants may not even seek the input of
doctors, relying instead on health information from family members and friends, their
local communities and traditional healers such as curanderos (e.g., folk healers or
spiritual leaders with healing powers) (Juarez, et al., 1998; Larkey, et al., 2001). The use
of curanderos among Latinos has been shown to limit use of health care resources like
hospice and palliative care (Haber, 1999). This community-based approach may be
appealing especially because of shared language and culture, whereas in the traditional
American healthcare system, Latinos often need to rely on others to be involved in
communication with their doctors, and even when providers use interpreters,
communication barriers remain (Haffner, 1992). For example, Spanish-speaking patients
are likely to make fewer comments than English-speaking patients who interact with their
providers directly; and Spanish-speaking patients were more likely than English-speaking
patients to have their comments ignored by their providers when they did speak up
(Rivadeneyra, Elderkin-Thompson, Silver, & Waitzkin, 2000). At times, Latinos are
reluctant to directly ask providers questions because of respeto, or respect for authority
(Anderson et al., 2002; Collins et al., 2002; Flores, 2000). They may also be reluctant
because they have experienced disrespect or discrimination, or they feel their concerns
19
have not been heard (Collins, et al., 2002). As an Institute of Medicine report notes, “For
many racial and ethnic minorities, preferences for treatment are often difficult to separate
from mistrust of health professionals that stems from racial discrimination and the history
of segregated and inferior care for minorities (Institute of Medicine, 2003, p. 131).”
Under such circumstances, patients may refuse providers’ recommendations, and
physicians may misinterpret patients’ attitudes towards medical intervention. Due to
communication barriers like these, providers can simply miss certain things about patient
care, including but not limited to patients’ wishes for care.
Provider Factors Influencing Effective EOL Communication
The National Consensus Project provided guidelines for effective doctor-patient
communication in palliative care. Discussions should “include developmentally
appropriate, culturally sensitive, and effective sharing of information, active listening,
determination of goals and preferences, assistance with medical decision making, and
effective communication with all individuals involved in the care of patients and their
families” (National Consensus Project: Clinical Practice Guidelines for Palliative Care.
2004, p. 6). Yet, such discussions occur infrequently (Hofmann, et al., 1997; The
SUPPORT Principal Investigators, 1995). The culture of medicine sometimes hinders
discussions of poor prognosis because the focus of medicine involves an orientation
towards life-prolonging and curative treatments (Christakis, 2000; Kaufman, 2005;
Snyder & Quill, 2001). At times, physicians continue to offer treatment even though it
has stopped working. As such, it is hard to shift the focus towards comfort care,
especially when physicians avoid or withhold such discussions because they fear that
patients and their family members will lose hope (Christakis, 2000; Daugherty, 2004). It
20
is also difficult to give accurate prognostic information because the disease process is
often uncertain. However, even when patients request prognostic estimates, many
physicians are likely to limit open discussions (Weeks et al., 1998). Research suggests
that when physicians do provide such information they are likely to give optimistic
estimates (Christakis, 2000). This contributes to the provision of invasive and ineffective
medical treatment up until the last stage of life without addressing the possibility of
dying.
Other provider barriers involve competency and personal preferences for
discussing bad news (Byock, et al., 2001; Colon, 2005; Dosanjh, et al., 2001; Haffner,
1992; Suurmond & Seeleman, 2006) as well as medical system factors like institutional
barriers, time constraints, lack of resources, and inadequate support from other providers
(e.g. colleagues, supervisors, and other health care professionals) (Byock, et al., 2001;
Dosanjh, et al., 2001). Providers can feel ashamed when asking for help with such
discussions. One study found that medical and surgical residents experience barriers
because they fear making mistakes, being misunderstood, and not being prepared
(Dosanjh, et al., 2001). Physicians may not like to confront patients with bad news
because, paradoxically, they are supposed to be able to cure. For these reasons, some
physicians may give bad news over the telephone, simply leave a message, or not give it
at all. Such factors contribute to problematic doctor-patient communication which
contribute to confusion about prognosis and medical treatments, and hinders the process
of treatment decision-making (Kass-Bartelmes, Hughes, & Rutherford, 2003). Instead of
engaging in unpleasant discussions, physicians may refer patients to other medical
providers (e.g., nurse case managers, social work staff, and/or palliative care team) for
21
discussions of bad news, discharge planning, and referral to palliative care resources
(Kaufman, 2005). Such providers can assist physicians who often lack adequate time or
capacity to explore existential, interpersonal issues, and questions about unfinished
business when dealing with a life-threatening illness. Even so, sometimes information is
lacking and coordination with the physician is needed. Nurses and social workers are
typically trained to facilitate such discussions, but may also have difficulty approaching
discussions of disease severity because the necessary medical information about
prognosis has not been given to the patient. When physicians limit or withhold prognostic
information or when medical information, decision-making and discharge planning is
delayed, patients can experience anxiety and distress. Doctor-patient communication
clearly needs to involve an interdisciplinary team of health care providers working
together to resolve these problems, which are likely more pronounced in circumstances
involving disadvantaged populations (Ryan, Carter, Lucas, & Berger, 2002).
While low income Latinos experience multiple barriers to health care access that
contributes to late stage cancer diagnoses among this population, Latinos also
underutilize EOL care resources such as hospice and palliative care (Givens, et al., 2010).
However, little is known about the factors that hinder or support patient-provider EOL
communication for underserved Latinos. Some literature suggests that as Latinas
navigate their way through the medical system, those who may prefer to speak Spanish
with their providers may also have limited health literacy that can influence cancer
treatment decision-making and contribute to poor breast cancer outcomes (Hawley, et al.,
2008). In addition, some Latinos might be hesitant to engage in EOL discussions with
their providers to discuss advanced care planning (Hauser, Kleefield, Brennan, &
22
Fischbach, 1997). While other research suggests that barriers to EOL decision-making
and advanced planning exist across ethnic groups (Bade, Murphy, & Sullivan, 1999;
Morrison, Zayas, Mulvihill, Baskin, & Meier, 1998), research in EOL communication
has not focused specifically on the beliefs and concerns of disadvantaged Latinos with
advanced stage cancers. This data suggests that Latinos with advanced cancers may be
particularly vulnerable when faced with EOL decision-making; however, there currently
is insufficient evidence that monolingual Spanish-speaking Latinos are at risk for poor
EOL decision-making. Additionally, it is unclear what factors influence EOL patient-
provider communication that would provide Latino patients with information about EOL
care such as advanced planning and connection to resources in the last stage of life.
What is happening or what is needed for this population when EOL discussions
recommend hospice or palliative care? A gap remains in the literature about patient-
provider EOL care discussions for underserved Latinos (Givens, et al., 2010); and this
study will address these gaps in the literature.
Conceptual Framework
This study was guided by a conceptual framework (see Figure 1) that draws upon
existing death and dying theory and other conceptual frameworks including:
1) Ecological Model (Bronfenbrenner, 1979; McLeroy, Bibeau, Steckler, &
Glanz, 1988)
2) Cultural Explanatory Model (Kleinman, 1980)
3) Awareness of Dying (Glaser & Strauss, 1965)
4) Dying Phase Model (Pattison, 1977)
5) Integration of Palliative Care (Ferris et al., 2002; Ferris & Librach, 2005)
23
Figure 1 represents the temporal elements of an illness course within a
multilayered contextual framework, bringing together an Illness Trajectory and
Ecological Model. This conceptual framework guides the development of this study and
demonstrates how time and context are interconnected, showing how the experience of
illness is within a contextual frame that takes into consideration the socio-cultural context
of the individual, in their social and cultural world. This model considers how and when
the individual interfaces with the medical system over time in seeking and using
treatment for their illness. It also takes into account the individual’s experiences and
perceptions of illness prior to being diagnosed with cancer, while also considering the
FIGURE 1. Melding an Illness Trajectory within a Socio-cultural Context
24
course of treatment and changes along the way through death. This model considers the
involvement with providers, family members, and the medical system, which is important
to the individual through the process of dying and beyond, as the palliative care model
demonstrates is an important part of living with the possibility of dying.
The Ecological Model was designed for health promotion programs which
emphasized the individual’s interpersonal behaviors within the context of their social
environment. An Ecological Model provides a broad view of contextual experiences that
involve the individual, interpersonal and social environment, organizational and
community, as well as public policy factors that interact to support and sustain unhealthy
behaviors (McLeroy, et al., 1988). However, in this study, the Ecological Model is
utilized to highlight the socio-cultural context of the seriously ill person accessing
medical treatment, which includes providers and the organization within which they
practice medicine and other factors associated with the medical system. This model also
allows for the inclusion of the social, interpersonal environment of family, friends, and
others like the social networks within the community and church.
Kleinman’s Cultural Explanatory Model (EM) was used to describe how
individuals make meaning from their experiences with illness and develop unique ways
of understanding and managing their healthcare (Kleinman, Eisenberg, & Good, 1978).
Kleinman’s Cultural EM proposes asking specific questions to elicit patients’ illness
experiences. Responses to these questions provide a foundation for understanding belief
systems associated with illness episodes (Kleinman, 1980; Kleinman, et al., 1978).
According to Kleinman (1980), the primary elements of EMs focus on the individual’s
story or narrative regarding the cause of illness, course of events, and consequences
25
related to illness. Kleinman’s (1980) framework contains five important domains for
exploring patients’ EMs: “(1) etiology; (2) time and mode of onset of symptoms; (3)
pathophysiology; (4) course of sickness [including both degree of severity and type of
sick role—acute, chronic, impaired, etc.]; and (5) treatment” (p. 105). It is important to
note that EMs draw upon existing beliefs; however, they are more than general beliefs
that exist prior to developing a sickness. Because EMs are elicited during the course of
illness, they are culturally constructed explanations, beliefs, or ideas that develop about
specific sickness episodes and treatment. They offer explanations regarding the episodes,
which guide choices about confronting, accepting, and managing various treatments and
outcomes (Kleinman, 1980; Kleinman, et al., 1978); therefore, this model is especially
useful for exploring the experiences of individuals who have life-threatening conditions
such as advanced cancer.
Most people diagnosed with advanced cancer fear the worst and have thoughts of
dying. Awareness of the possibility of dying unfolds through social interactions with
others (Glaser & Strauss, 1965); for example, the ways in which cancer patients engage
others about their illness, in the things they say about seeking a cure, and in talking about
the possibility of dying, all of which provide descriptions of their dying awareness
(Glaser & Strauss, 1965) Glaser and Strauss (1965) describe four styles of dying
awareness (i.e. closed, suspected, mutual pretense, and open awareness). Closed
awareness is seen in cancer patients who do not know that they are dying. For these
patients, talking about the possibility of dying is extremely difficult because dying is not
an option. Death is never going to happen. Some cancer patients maintain a closed
awareness, hope for a cure, and continue curative treatment until the last moments of
26
their life. Other cancer patients who imagine that death is possible have a suspected
awareness and may question their doctors about cancer progression, wanting to know
more but hesitant to ask because awareness of their impending death has not actually
been understood yet. Without an adequate explanation or full understanding, patients
may begin to distrust their doctors. For others, mutual pretense is where the patient, the
doctor, and/or family members know that something is wrong, for example the patient’s
health is getting worse as death approaches; however, they prefer not to discuss the
possibility of dying and seem to pretend as if death will never happen. Cancer patients
who are living with open awareness understand that they are living with the possibility of
dying in the near future. They talk about dying with others and wish to plan for the event.
Another approach to thinking about the possibility of dying deals with the
physical and emotional impact of cancer for those with a life threatening illness. Pattison
(1978) developed a model of dying trajectories that identifies an acute phase, a chronic,
living and dying phase, and a terminal phase all of which encompasses death awareness
(Pattison, 1977). Those with an advanced illness face the possibility of dying on some
level because illness taxes the body, impacts emotional resources to handle every day
problems, limits patients’ ability for forward thinking about the future, and creates an
overall tension that provokes thoughts of multiple unresolved problems. Death
trajectories describe how the terminally ill transition from continuing curative medical
treatment to understanding and accepting that dying is inevitable. Conceptually, with this
transition, cancer patients understand that a cure is no longer possible and a referral to
hospice care is made. However, those with closed awareness are limited in understanding
death discussions, lack awareness of comfort care as opposed to continuing curative
27
treatment, and subsequently may never discuss the possibility of dying or get referred to
hospice.
Ferris and colleagues developed standards for palliative and hospice care that
considered common issues that patients and family members face when experiencing a
serious illness such as advanced cancer (Ferris, et al., 2002; Ferris & Librach, 2005).
These guidelines highlight patterns of illness and functional decline within which
referrals to palliative and hospice care are needed. In this process, health care providers
need to be aware of the common issues that arise for patients and family members
including: disease management issues; physical, psychological, social, and spiritual
issues; grief, loss, and bereavement; as well as the practical daily living functions that are
affected by illness (Ferris & Librach, 2005). Ferris and Librach (2005) describe the
integration of palliative care within an illness trajectory in order to suggest that palliative
care should be made available to patients and family members at any time along the
illness course so that palliative care can be integrated with medical therapies to relieve
suffering and provide comfort all along the disease course, all of which are palliative and
hospice care concepts. In this way, death will not be a shock for the patient and their
family, for example when treatment stops working and no other means of medical
intervention is possible.
Conclusion
The evidence strongly describes the vulnerability of low-income Latinos with
advance cancers and suggests that they experience a disproportionate amount of problems
related to seeking and accessing treatment as well as receiving adequate symptom
management during their cancer care. Multiple other contextual factors related to social
28
and cultural issues may limit EOL patient-provider discussions; however, such factors
have been poorly studied. The evidence thus suggests that low-income and underserved
Latinos who are in the last stage of their life are at risk for experiencing problems related
to EOL provider-patient communication. The gaps in knowledge about such problems
for this underserved population also represent a complex situation for health care
providers because they have an ethical responsibility to help their patients understand
what is happening with their medical condition in order for them to make informed
decisions about their health care. The likelihood that providers are put in a position to
make decisions for their patients without their understanding the gravity of the decision is
a potentially dangerous situation. This study addresses the factors that impact such a
vulnerable population.
29
CHAPTER 3: RESEARCH METHODS
Overview
This chapter includes a description of the process and procedures utilized in the
development and implementation of this study. The following topics will be discussed:
research design, research questions, recruitment, sampling procedures, and data
collection, analysis, and interpretation.
The methodological strengths of this study include its use of mixed qualitative
methods and consequent data triangulation. These methods enhanced the overall rigor
and credibility of the findings. The use of mixed qualitative methods improved the data
quality through triangulation and cross-checking of concepts found in the data from many
points of view (Denzin, 2009; Patton, 2002; Strauss & Corbin, 1998). The utilization of
such techniques allowed for the verification of concepts related to EOL discussions from
multiple sources (e.g., patients, family members, key informants, medical providers and
other clinical professionals, ethnographic observations, and past medical social work
experience) (Patton, 2002). This study also utilized a grounded theoretical approach
(Glaser & Strauss, 1967) and was guided by sensitizing concepts from the literature and a
conceptual model developed from previous health sciences research including awareness
of dying and dying phase model, integration of palliative care, and an ecological model
(Bronfenbrenner, 1979; Ferris, et al., 2002; Ferris & Librach, 2005; Glaser & Strauss,
1965; McLeroy, et al., 1988; Pattison, 1977) (see Figure 1). Such theory guided the
conceptualization and analysis of this exploratory study toward the development of a new
conceptual framework about patient-provider communication in the context of advanced
30
cancer care with underserved Latinos, and potentially in the context of care for other
terminal illnesses with other disadvantaged populations.
Research Aims and Questions
This exploratory study aims to:
3) explore providers’ perceptions of the need to engage in EOL decision-making
discussions specifically with Latinos living with advanced cancers
a. describe providers’ perceived roles in engaging in EOL discussions
b. examine barriers to EOL decision-making discussions; and
4) explore perceptions of illness severity among triads (patient, family member,
provider) to identify gaps in decision-making communication about the course of
care (treatment expectations and desired outcomes)
The following research questions guide this exploratory study: (1) What are
providers’ perceptions about engaging in EOL discussions with Latinos who utilize a
public health care system for advanced cancer care?; (2) What factors hinder providers
and patients from engaging in EOL discussions about the treatment course of an
advanced cancer condition?; (3) What are the consequences of miscommunication and
other factors that limit provider-patient EOL decisions-making discussions?
Research Site
The Los Angeles County University of Southern California (LAC+USC;
http://www.lacusc.org) Healthcare Network is a large public-sector healthcare system
that served as the recruitment site for this study. LAC+USC Healthcare Network
provides health care services to an underserved patient population (many of whom are
Latinos) living in the central and surrounding regions of Los Angeles County.
31
LAC+USC employ a number of bilingual providers across all disciplines in order to meet
the needs of Spanish-speaking only patients. The Healthcare Network is a referral center
for all types of health care needs and emergency services for both the public and private
sectors. LAC+USC is affiliated with several schools of medicine which provide training
to physicians in all facets of medicine (e.g., with 714 full-time physicians and 890 interns
and residents from the USC Keck School of Medicine) and employs approximately 2600
nurses of all skill levels. LAC+USC also utilizes volunteers and collaborates with
community agencies in order to have connections with the patient population in the
community.
Population Characteristics within the Community
California has one of the largest Latino/Hispanic populations in the United States.
Of the 36,756,666 million people in California, approximately 36.6% are Latino (United
States Census Bureau, 2008). In Los Angeles County alone, approximately 4.5 million
Latinos live, which represents almost half (47.7%) of the County’s population (United
States Census Bureau, 2008). Many Latinos are low income and/or lack health insurance.
In California alone, approximately 6.3 million individuals are uninsured. Of the
uninsured, 54% are Latino (Latino Coalition for a Healthy California, January 2005).
The uninsured and underinsured must rely on a publicly funded safety net, comprised of
community clinics and hospitals throughout the Los Angeles County. Speaking with such
an underserved patient population within LAC+USC enabled us to explore the
perceptions of patient-provider EOL communication with low-income Latinos with
advanced cancers who have most likely experienced multiple barriers to accessing health
care as well as socio-economic issues that hinder patient-provider communication.
32
Research Design
The research design of this study employed both sequential and parallel use of
mixed qualitative methods to include two phases and ethnographic observations. The
first phase involved getting to know the providers working within in-patient, out-patient,
and administrative positions in the LAC+USC medical system in order to understand the
issues providers perceive as important to EOL provider-patient communication. Semi-
structured interviews were conducted with providers and observations were made in the
process of getting to know the setting, enrolling and interviewing subjects. The second
phase with patient-provider-family member triads was designed to explore the
perceptions and congruency of understanding about the severity of the advanced cancer
condition among triads. This exploration was added to complement the provider
interviews in order to better understand what patients and family members experience
and understand when being treated for advanced stage III and IV, metastatic cancers
which have a poor prognosis. The second phase of data collection began about half-way
into the first phase. Ethnographic observations were also recorded in the hematology and
oncology clinics (e.g., gynecology/oncology, gastrointestinology, and genito-urinary
clinics) where patients were being recruited. It is important to note that provider-patient
interactions were not part of the ethnographic observations in this study.
Recruitment
Phase I: Provider Interviews & Observations
The first phase of this study received Institutional Review Board approval from
the University of Southern California on April 17, 2009 to begin data collection with
ethnographic observations of the healthcare settings (in-patient and out-patient clinics)
33
and semi-structured interviews with a purposive and snowball sample of providers across
various clinical and administrative capacities within LAC+USC. The eligibility criteria
for providers set out to stratify by provider type across disciplines (e.g., physicians,
nurses, social workers, and chaplains) as well as across provider roles where they work.
Providers who were asked to participate were working as administrative officers of
operations in different departments, supervisors, supportive administrators and clinical
staff within out-patient and in-patient hospital and clinic settings. Additional criteria for
this study sought to recruit providers with some experience or expertise with cancer
patients (e.g., primary care, hematology, oncology, radiation oncology, pulmonology,
endocrinology, and palliative care).
Data collection for provider interviews began April 2009 and ended late March
2010. Project staff included the Principal Investigator (PI) and a two trained bilingual
research assistants, one male and one female Master’s level student who had a Latino
background. Initially, administrative officers of operations from different departments of
LAC+USC (medicine, nursing, social work, and chaplaincy) were contacted by email to
inform them about this study and to request a letter of support which was subsequently
supplied to the Institutional Review Board. All administrative staff (N=4) agreed to
support this study and they subsequently provided a list of names of their administrators
and clinical staff who might wish to participate in the study. Administrative officers of
operations and other providers were then contacted by phone or email and asked whether
they would like to voluntarily participate in an open-ended interview to be conducted
over the phone or in-person, whichever they preferred. Upon agreeing to participate,
arrangements were made to meet in a private office. Then providers were given an
34
informational sheet (see Appendix A) explaining the study’s purpose and procedures and
they had an opportunity to ask any questions they had about the project. Questions were
answered by the PI and verbal consent was obtained. At the end of each interview
providers were asked to give names of other providers in any department that they
thought might like to participate in this study. Recruitment flyers (see Appendix B) that
briefly described the study were also made available to all providers to hand out to any
other providers.
Phase II: Triad Interviews and Observations
The second phase of this study received Institutional Review Board approval on
August 20, 2009 to start data collection with semi-structured interviews with triads of an
advance cancer patient, a family member or friend, and their provider. The eligibility
criteria for the patients in this phase of the study were as follows: a diagnosis of advanced
cancer (stage III or IV with metastases and/or recurrence), Latino ethnicity, Spanish as
their primary language, and age 18 years or older. Referral to palliative care was not an
eligibility requirement, but patients must not have been enrolled in hospice care at the
time of the first interview. However, patients who had engaged in discussions about the
decision to accept hospice were eligible, and they could enroll in hospice at any time after
the first interview and continue to participate in the study. The inclusion and exclusion
criteria for patients specifically targeted advanced cancer patients who had not made a
decision to accept hospice care because this window of time is often a time of uncertainty
about the disease process. Both male and female patients were included in the triad
study. Eligible providers included either a nurse or a physician who stated to the PI that
he or she had one or more discussions with the patient regarding the serious nature of
35
their advanced cancer diagnosis and the severity of their illness. Providers interviewed in
the first phase different from the providers who were interviewed in the second phase.
Data collection with triad participants began in September 2009 and ended late
March 2010. Project staff included the Principal Investigator and bilingual research
assistants who helped collect interviews with subjects who primarily spoke Spanish. In
order to recruit subjects in the hematology and oncology clinics (e.g.,
gynecology/oncology, gastrointestinology, and genito-urinary clinics) access was
requested through the attending physicians who worked in the clinics. An email was sent
out to these physicians informing them about this study and providing them with a flyer.
Upon request of the physician, the PI provided eligibility criteria and answered questions
about the study. Attending physicians in all three clinics agreed to help with recruitment.
The PI and one of the research assistants met weekly with an attending physician in the
clinic during clinic hours. Ethnographic observations were made during the routine
clinic hours inside a private meeting area where only nursing staff worked and attending
physicians met with their medical students, interns, residents, and fellows.
For the triad patient participants, attending physicians or nursing staff identified
subjects who met criteria on the day that the subject was seen for their medical
appointment in the clinic. After the Latino advanced cancer patient signed in for his or
her appointment, their eligibility to participate in the study was confirmed, and their
clinic visit with the physician had finished, a flyer explaining the study’s purpose and
procedures was given to the patient by the physician or nursing staff to inform them of
the study. If the patient chose to participate, then project staff invited the subject and
their family member into an available private clinic interview room where further
36
information and details about the study were discussed. At that time, a written informed
consent and a Health Insurance Portability and Accountability Act of 1996 (HIPAA)
Privacy and Security Rules for access to the patient’s health information was obtained
(see Appendix C for Consent and HIPAA forms).
Sampling
In phase one, of the 68 individuals approached during the data collection period
44 (65%) agreed to participate in this study. In phase two, of the 34 individuals
approached during the data collection period 27 unique subjects (with two doctors who
were in two of the triads) (79%; 9 triads of patient, family, member, and provider, and
one patient-provider pair) agreed to participate. Some patients did not want to
participate because they either did not have time, did not feel well enough to participate,
and/or felt concerned that this study might be an experimental one. Although explanation
about this study was provided in Spanish and reassurance was given that this study only
involved an in-depth interview, some people (N=3) still did not want to participate. All
triads consisted of a Latino advance cancer patient, a family member, and a physician or
nurse; however, one triad did not include a family member because the person did not
respond to the request to participate after the patient already enrolled in the study.
Since this analysis involves no hypothesis testing using statistical procedures, the
number of subjects necessary to produce sufficiently valid and reliable results cannot be
calculated using standard formulas for statistical analysis. Nevertheless, previous studies
relying upon this methodology have typically found that information becomes repetitive
and little new information is gained after analysis of data collection from 20-30
participants (Miles & Huberman, 1994; Strauss & Corbin, 1998). Some authors suggest
37
that saturation can be achieved with as few as 12 respondents (Guest, Bunce, & Johnson,
2006; Patton, 2002)
Procedures
Semi-structured, in-depth interviews were conducted with providers (physicians,
nurses, social workers, and chaplains) either by phone or in-person: 39 out of 44
interviews were conducted in-person and 5 over the telephone. The semi-structured
interview guide was developed by the PI and covered: 1) barriers to EOL discussions, 2)
socio-cultural factors, 3) medical system factors, 4) providers roles, and 5) demographic
information (see Table 1. Provider Interview Themes and Questions). Interviews probed
for relevant data and concepts of this study; however, they also allowed subjects to add
information and observations that they considered relevant which may not have been
explicit in the interview guide. Interviews lasted between 20 and 70 minutes and were
tape recorded and transcribed.
In the second phase, each subject in the triad (provider, patient, and family
member) was interviewed separately so that they were not aware of what the other
subject had said during the interview. The patients were interviewed first and then a
family member or provider, whichever was able to be arranged next. Of the nine triads
and one patient-physician dyad interviews (N=27 and N=2 with the same physicians), 15
were conducted in-person and 14 over the telephone. One patient-physician dyad was not
completed as a triad because the family member did not respond after the patient was
interviewed. It is important to note that of the providers in the triads, two of the
physicians participated in two different triad interviews. More of the second phase
interviews were conducted over the telephone because subjects said they lacked time
38
during the day of the clinic visit or because they simply preferred to be interviewed over
the telephone. An in-depth interview guide was developed using Kleinman’s Cultural
Explanatory Framework (1980). Topics included: 1) Illness experiences, 2) Treatment
decisions and outcomes, 3) Patient and provider communication, 4) Understanding of
illness severity, 4) Advance planning and end of life care, and 5) demographic
information (see Table 2. Triad Interview Themes and Questions). Questions were
designed to focus on the patient’s experience about his or her cancer condition and
understanding of illness severity. Providers and family members were asked the same
questions; however, questions were tailored to focus the respondent on their perception of
the patient’s point of view. For example, a patient was asked, “When did you first find
out you had cancer?” and the family member was asked, “When did your family member
first find out they had cancer?” Interviews probed for relevant data and concepts of this
study and allowed subjects to add information about their experiences with cancer that
they considered relevant and which may not have been explored in the interview guide.
Interviews lasted between 40 and 60 minutes and were tape recorded and transcribed.
All subjects in both phases were informed before and during the interview that
their participation was completely voluntary, confidential, and that if they wished, they
could stop at any time during the interview. All identifying information was removed
from the transcripts, which were then coded with a number to identify the subjects
participating in the study. Subject codes were also used on all field notes. The codes
were used to help maximize subjects’ protection and privacy. All subjects, including
providers, in both phases of this study received a $20 gift card for participating in the
interview.
39
Data Analysis and Interpretation
Analysis involved exploration of the data collected from mixed qualitative
methods including interviews from both phases, field notes from ethnographic
observations and clinical experience. In order to evaluate perceptions of provider-patient
EOL decision-making discussions, the PI analyzed what subjects said about their
experiences with giving or receiving EOL care information and looked specifically for
statements about barriers and facilitators, socio-cultural and medical system factors, and
other issues which influenced communication in the last stage of life. Data analysis was
rooted in grounded theory to focus on detailed analysis of interview transcripts and
documents (e.g. ethnographic field notes, case summaries) to allow concepts, themes,
heuristics, and theory to emerge from the data (Strauss & Corbin, 1998). Interview
transcripts were analyzed using techniques described by Strauss and Corbin (1998) in
grounded theory and the systematic approach to qualitative methods of coding consensus,
co-occurrence, and comparison of data units (Strauss & Corbin, 1998; Willms et al.,
1990).
The PI analyzed the interview data in order to condense or group the data into
smaller units of text for further analysis. A priori themes from the interview guide and
developed out of an extensive literature review, guided the development of emergent
themes. Through an iterative process, code building identified new or previously
unrecognized concepts throughout the coding process and across all data sources
including transcripts, ethnographic field notes, memos, and network diagrams. Memos
about the data process and data content were written over the course of data collection
and analysis. Network diagrams were used to organize categories pictorially to help
40
develop ideas about the connections or relationships between concepts emerging from
both phases of the study. New concepts that emerged out of the data were considered as
important themes if the new concepts were repeated throughout the interviews and field
notes. Coding consensus was established by reviewing codes and transcripts with
research assistants. The PI compared coding schemes with research assistants’ coding
schemes in order to build one code list and to allow them to negotiate the coding system.
The final list of codes consisted of concepts, themes, behaviors, emotions, and opinions
related to personal, socio-cultural, professional, and system issues that influenced EOL
decision-making discussions. Code building ceased when the Principal Investigator and
the research assistants agreed that the full list of codes represented a complete picture of
the concepts specified in the aims of this study.
Based on the final code list, the PI used the ATLAS.ti (a qualitative data analysis
software package) to generate categories and subcategories arranged in a layered
structure in order to connect the codes to segments of transcripts. Typically, more than
one code was linked to one segment of text because concepts often co-occurred within
one narrative. Codes were organized using prefixes (words or symbols) to identify main
categories, which were linked to a second level of subcategories. Conceptually or
thematically similar codes were also grouped in “families,” for example, examining a
cluster of codes in relation to the different categories of respondents. This type of
analysis allowed for a constant comparison of similarities and differences across multiple
groups and concepts and intended to construct a “thick description” (Geertz, 1973) of
participant descriptions of their experiences with cancer and EOL communication.
41
A template matrix approach described by Crabtree and Miller (1992) was used to
compare themes identified by different types of providers as important (Crabtree &
Miller, 1992). For each category of participant (e.g., physician, nurse, social worker,
chaplain), a matrix of themes was developed to facilitate comparison of themes elicited
from different data sources (e.g., semi-structured interviews, ethnographic field notes,
case summaries). This technique was also utilized with the triad data. Using a template
matrix enabled identification of themes common or unique to each group in each
category of data.
42
TABLE 1. Provider Interview Themes and Questions
Theme Sample Questions
Barriers to EOL Discussions Considering the population at the County, which is primarily
Latino, tell me about your experiences with talking to
patients about their terminal cancer condition.
What are your thoughts about how low-income Latinos
experience life-threatening illnesses and discussing the
possibility of dying?
Describe some of the things that make such discussions
easier.
Describe some of the things that make such discussions more
difficult.
What about patient interactions with their providers?
Socio-cultural Factors Considering your experience working with the County
population, describe some of the issues specific to this
population that influence end of life discussions
In what ways do cultural beliefs influence end of life
discussions?
If not otherwise mentioned, towards the end of the interview
ask the following questions:
What about language?
What about education?
What about family involvement?
What about religious or spiritual beliefs?
Medical System Factors Considering the population at the County, which is primarily
Latino, how does the medical system influence end of life
care discussions?
What about the in-patient setting?
What about the out-patient setting?
What about resources and discharge planning?
Provider Roles Who do you think should be the one to initiate discussions
about the end of life? The physician, nurse, social worker,
chaplain, other provider? Anyone else? Why is that?
How much of a role do you have in discussing end of life
decision-making with terminally ill patients? Is it
completely your role, partially your role, not your role at
all, or something else? Why do you think that?
In one sentence please describe your role in discussing end of
life decision-making with terminally ill patients.
43
TABLE 2. Triad Interview Themes and Questions
Theme Sample Questions
Illness Experience When did you first find out you had cancer? Who told you
and how did you react?
Cause – What do you think caused your illness?
Course – How have you been feeling lately? What symptoms
do you have? How has this illness affected your life?
What are your greatest concerns or worries about having
cancer?
Treatment Decisions &
Outcomes
What decisions did you have to make to get treatment?
What has the doctor said about treatment?
What do you suspect is going to happen next? Do you think
your illness can be cured? Have you ever had thoughts
about stopping treatment? Have you talked with anyone
about this?
Patient & Provider
Communication
In the last meeting with your doctor what did you talk about?
What exactly has your doctor told you? How serious is your
illness?
Would you like to know everything about your illness or
would you prefer not to know?
What information would you like to know now?
Would you prefer your family to talk with the doctor instead
of you? Why? Are there times when you do not want your
family member to talk with your doctor? Why?
What about putting yourself in the hands of God and the
doctors?
Illness Severity Have you talked with anyone about the possibility of your
illness getting much worse? If so, what have you talked
about?
Have you had thoughts about dying?
What are your greatest concerns or fears about the future?
Have you shared your concerns with anyone?
Advance Planning & End of Life
Care
What have your providers said about hospice or palliative
care to you?
What does hospice or palliative care mean to you?
What do you know about advance directives or living wills?
44
CHAPTER 4: SAMPLE
Demographics: Phase One
The total sample of the first phase consisted of 44 providers (10 physicians, 12
nurses, 11 social workers, and 11 chaplains). As presented in Table 3, the majority of the
sample was female (61.4%, N=27). The sample described themselves as Caucasian/white
(36.4%), followed by Latino (34.1%), Asian (13.6%), African American (11.4%), and
other (4.5%). Most of the providers were born in the United States (75%), however, one-
quarter were immigrants (25%) (e.g., one from France, one from Guatemala, one from
India, one from Iran, two from Mexico, one from Peru, two from the Philippines, and
two from Vietnam). Over a third of the providers spoke both English and Spanish
fluently (38.6%), a quarter of providers only spoke English (25%), while some said they
spoke a little Spanish (18.2%), enough to converse with Spanish-speaking patients on a
basic level, and other providers spoke another language other than English or Spanish
(18.2%). In terms of work experience in the health care setting, the majority had five to
10 years of experience (34.1%), many had more than 20 years experience (29.5%), some
had 11 to 20 years experience (25%), and some had less than four years experience
(11.4%). In terms of experience working with cancer patients (e.g., hematology,
oncology, radiology), 27.3% of the providers had specialization in cancer care, 20.5%
had some experience, and 52.3% had occasional interactions with cancer patients.
45
TABLE 3. Demographic Characteristics of Providers
Total Sample Physician Nurse Social Worker Chaplain
Variable N = 44 % N = 10 N = 12 N = 11 N = 11
Gender
Male
17 36.6 6 1 3 7
Female
27 61.4 4 11 8 4
Ethnicity/Race
African American
5 11.4 0 5 0 0
Asian
6 13.6 2 2 2 0
Caucasian/White
16 36.4 6 1 3 6
Latino
15 34.1 0 4 6 5
Other
2 4.5 2 0 0 0
Nativity
United States
33 75 7 9 7 10
Immigrant
11 25 3 3 4 1
Language spoken
English only
11 25 2 4 3 1
Spanish & English
17 38.6 1 4 7 5
Some Spanish & English
8 18.2 3 2 0 3
Other
8 18.2 4 2 1 1
Religion
Buddhist
3 6.8 1 1 1 0
Christian
13 29.5 2 6 1 4
Catholic
19 43.3 1 3 8 7
Jewish
3 6.8 1 1 1 0
None
3 6.8 3 0 0 0
Other
3 6.8 2 1 0 0
Religious Attendance
Several times a week
14 31.8 0 3 2 9
Once a week
9 20.5 2 5 1 1
Several times a month
3 6.8 0 2 0 1
Occasionally
12 27.3 5 1 6 0
Never
6 13.6 3 1 2 0
Health Care Experience
More than 20 years
13 29.5 3 5 4 1
11 to 20 years
11 25 2 5 1 3
5 to 10 years
15 34.1 5 2 3 5
1 to 4 years
3 6.8 0 0 1 2
Less than 1 year
2 4.6 0 0 2 0
Cancer specialty
Hematology & Oncology
12 27.3 4 6 1 1
Some experience
9 20.5 2 2 3 2
Very little
23 52.3 4 4 7 8
46
In terms of providers’ religious beliefs and practices, the majority of the phase
one sample of providers considered themselves either Catholic (43.3%) or Christian
(29.5%), and others were Jewish (6.8%), Buddhist (6.8%), none (6.8%), or other (6.8%).
Almost a third attended church several times a week (31.8%). However, it is important to
exclude the chaplains to gauge how much other providers attended religious services
regularly. Of the 33 other providers, the majority occasionally attended church or temple
(36.4%), some attended once a week (24.3%), some never attended (18.2%), some
attended several times a week (15.1%), and some several times a month (6.0%).
Demographics: Phase Two
The total sample of the second phase consisted of nine triads (10 patients, 9
family members, 8 providers of which 2 were nurses and 6 were physicians). As
presented in Table 4, the majority of the sample was female (63%, N=17). The majority
of the sample described themselves as Latino (81.5%), followed by Caucasian (11.1%)
and Asian (7.4%). Of the triad subjects who were immigrants, subjects were from either
Mexico (48.1%), Guatemala (22.1%), or another country (11.1%). The majority of
patients (80%) recruited into the triads had recurrent cancers (ovarian, breast, cervical,
gastric, rectal), all with metastatic disease that had advanced either into abdomen, bones,
brain, liver, and/or lungs. Two patients (subject 7 and 8) did not have recurrent disease;
however, they were diagnosed with incurable, advanced stage cancers with poor
prognosis.
The majority of providers were born in the United States (see Table 4). Over half
spoke Spanish only (59.3%), and the others spoke Spanish and English (29.6%), English
only (7.4%), and languages other than English (3.7%). In terms of religious beliefs and
47
practices, the majority of the triads considered themselves either Catholic (55.7%) or
Christian (22.1%), and others were Jehovah’s Witness (14.8%), and none (7.4%). In
terms of religious practices, over half attended Church once a week (40.8%) or, several
times a week (18.5%), and others attended occasionally (18.5%), several times a month
(11.1%), and never (11.1%).
TABLE 4. Demographic Characteristics of Triads
Total Sample Patient Family Provider
Variable N = 27 % N = 10 N = 9 N = 8
Gender
Male
10 37.0 4 2 4
Female
17 63.0 6 7 4
Ethnicity/Race
African American
0 0 0 0 0
Asian
2 7.4 0 0 2
Caucasian/White
3 11.1 0 0 3
Latino
22 81.5 10 9 3
Nativity
United States
5 18.5 0 0 5
Mexico
13 48.1 7 5 1
Guatemala
6 22.1 3 3 0
Other Country
3 11.1 0 1 2
Language spoken
English only
2 7.4 0 0 2
Spanish Only
16 59.3 8 8 0
Spanish & English
8 29.6 2 1 5
Other
1 3.7 0 0 1
Religion
Christian
6 22.1 2 2 2
Catholic
15 55.7 7 5 3
Jehovah’s Witness
4 14.8 1 2 1
None
2 7.4 0 0 2
Religious Attendance
Several times a week
5 18.5 3 2 0
Once a week
11 40.8 4 5 2
Several times a month
3 11.1 1 1 1
Occasionally
5 18.5 2 1 2
Never
3 11.1 0 0 3
48
Description of the triad subjects
All the names of the subjects reported in this study are pseudonyms. The
following is a brief description of the cancer experiences of each triad (patient, family
member, and provider) (See Table 5, patients; Table 6, family members; Table 7,
providers)
49
TABLE 5. Demographic Characteristics of Patients in the Triads
Name Gender Age Language Nativity
Years
in US
Education
Level
Insurance Religion Attend Marital Diagnosis
1 Blanca F 53 Spanish Guatemala 27 9 ORSA Catholic Weekly
Married 29
years
Recurrent Ovarian,
Stage IV, abdominal
metastases
2 Alma F 35 Spanish/English Guatemala 33 12 ORSA Christian Occasionally Divorced
Recurrent Cervical,
Stage IV, bladder
metastases
3 Helena F 49 Spanish Mexico 5 6 ORSA Catholic
Twice
monthly
Widowed
22 years
Recurrent Breast,
Stage IV, brain
metastases
4 Lorena F 42 Spanish Mexico 3 0 ORSA Catholic
Three times
monthly
Living 17
years
Recurrent Breast,
Stage IV, lung
metastases
5 Maria F 57 Spanish Guatemala 34 6 ORSA Christian
As often as
possible
Married 26
years
Recurrent Ovarian,
Stage IV, rectal
metastases
6 Roberta F 69 Spanish Mexico 44 6 ORSA Catholic Twice a week
Married 44
years
Recurrent Ovarian,
Stage IV, abdominal
metastases
7 Mario M 42 Spanish Mexico 18 6 ORSA
Jehovah’s
Witness Weekly
Married 20
years
Glioblastoma brain
tumor, Stage IV
8 Reyes M 53 Spanish Mexico 27 6 ORSA Catholic Weekly Divorced
Head and neck, Stage
IV
9 Javier M 71 Spanish Mexico 23 0 ORSA Catholic Weekly
Married 42
years
Recurrent gastric,
Stage IV, liver
metastases
10 Armando M 39 Spanish/English Mexico 32 6 ORSA Catholic Occasionally Single
Recurrent rectal,
Stage IV, Lung and
bone metastases
ORSA - Outpatient Reduced-Cost Simplified Application Insurance, only covers outpatient care.
People who qualify for ORSA have a net income of less than or equal to 133 1/3% of the Federal Poverty Level
50
TABLE 6. Demographic Characteristics of Family Members in the Triads
Name Gender Age Language Nativity
Years
in US
Education
Level
Insurance Religion Attend
Relation
to Patient
1 Reyna F 42 Spanish Guatemala 27 12 None Christian Weekly Sister
2 Carmen F 45 Spanish Guatemala 10 10 None Christian Weekly Aunt
3 missing
4 Edwardo M 37 Spanish Mexico 5 5 None Catholic Weekly Husband
5 Jorge M 58 Spanish Mexico 33 5 None Catholic Weekly Husband
6 Marisa F 50 Spanish Mexico 28 12 ORSA
Jehovah’s
Witness
2 times a
week Niece
7 Sonora F 40 Spanish Mexico 20 6 ORSA
Jehovah’s
Witness
2 times a
week Wife
8 Juanita F 41
Spanish,
some
English Mexico 20 9 None Catholic
2 times a
week Sister
9 Norma F 63 Spanish Mexico 2 6 ORSA Catholic Weekly Wife
10 Dolores F 30 Spanish El Salvador 4 12 None Catholic Occasionally Girlfriend
ORSA - Outpatient Reduced-Cost Simplified Application Insurance, only covers outpatient care. People who qualify for ORSA have a net income of less than or equal to 133 1/3% of the Federal Poverty Level
51
TABLE 7. Demographic Characteristics of Providers in the Triads
Name Gender Language Nativity
Years
in US
Worked at the
County
Religion Attend
1 Nurse Nancy F
Spanish &
English
Mexico 37 14 years Catholic Once a year
2 Nurse Carmen F
Spanish &
English
United
States
Born 3 years Christian Weekly
3 Dr. Young M
English, some
Spanish
United
States
Born
6 years training,
third year fellow
None Never
4 Dr. Arafat M
English,
Arabic, French
Lebanon 4
4 years training,
first year fellow
Catholic Monthly
5 Dr. Wood F English only
United
States
Born
4 years training,
first year fellow
Muslim Sometimes
6 Dr. Wood Same as provider five
7 Dr. Herman M
English,
Italian,
Spanish
Italy 4
2 years training,
second year intern
Atheist Never
8 Dr. Arafat Same as provider four
9 Dr. Wong M English only
United
States
Born
1 year training, first
year intern
None Never
10 Dr. Ramirez M
Spanish &
English
United
States
Born
1 year training, first
year intern
Mormon Weekly
52
Subject one Blanca is a 53-year-old Latina who was diagnosed with ovarian
cancer in 2005, now recurrent stage IV and receiving chemotherapy in the County clinic.
She was born in Guatemala, entered the United States 27 year ago with a ninth grade
education. She is Spanish speaking only and currently has health insurance with the
Outpatient Reduced-Cost Simplified Application (ORSA) coverage, which only covers
outpatient medical costs. On the day of the interview, Blanca came to the clinic with her
sister who only speaks Spanish. Previously, Blanca would come to the clinic with her
daughter who would translate information for her because she speaks English; however,
her daughter can no longer come to the clinic because of her work schedule. Blanca’s
main concern is her pain and suffering, saying, “I have such strong pains now, but the
doctor says that she now thinks that there isn’t any chemotherapy that will help me
because they’ve already tried many and now none are working, so now it’s the pain.”
Blanca can no longer function without the help of her sister who has become her full-time
caregiver.
Subject two Alma is a 35-year-old Latino female who was diagnosed with stage
IV cervical cancer in July 2008. She primarily speaks Spanish, however, also speaks
English fairly well. She immigrated to the United States 33 years ago, finished high
school, was married and is now divorced with two young children ages eight and thirteen.
At the time she was diagnosed with cancer she refused surgical treatment that was
suggested by her physicians to take out her bladder and remove a portion of her bowel,
creating bags (colostomy and urostomy) for the bowel and urine to collect. She was
afraid that the surgery would change her life to an extreme, so she refused the treatment
and went with only chemotherapy and radiation instead. Alma felt better after the
53
treatment saying, “They did me those treatments so I felt better. Then I stopped coming.
I was like, ‘Oh, I’m okay now’…I had an interview with somebody that the last CT scan
they did, she told me that I didn’t have cancer, that the tumor was not there.” But Alma’s
cancer was not better and it has now progressed into her colon.
In terms of health care for her treatment, Alma uses the ORSA health insurance
benefits provided by the clinic and is currently only receiving chemotherapy. Alma’s
treatment regimen has been interrupted several times because she has not completely
complied with her appointments. She said that she has missed some appointments
because she has had problems with childcare and because she sometimes feels so bad
physically that she cannot get up out of bed. Alma lacks support from friends and family.
She is estranged from her parents who have not spoken with her since she was diagnosed
with cervical cancer that was most likely sexually transmitted. Alma mainly worries
about not getting her chemotherapy now because the doctors are holding the treatment
until her diabetes gets under control. She also wonders whether she made a mistake not
getting surgery when it could have been done. She can no longer have the surgical
procedure.
Subject three, Helena, is a 49-year-old Latina who was diagnosed with breast
cancer in June 2006, now recurrent stage IV with brain metastasis and possible lung
metastases. She was born in Mexico, entered the United States 5 years ago, and only
speaks Spanish. She has a sixth grade education and ORSA health insurance benefits
provided by the clinic. Alma was widowed 22 years ago and has several grown children.
Alma was hospitalized two months before the interview for brain surgery which reduced
the tumor but did not remove it entirely. Although breast cancer is treatable, her doctor
54
said that her cancer is very serious because the chemotherapy treatment cannot penetrate
her brain, meaning her cancer is incurable. However, Helena thinks otherwise saying, “I
try to…to be well myself, to not be thinking [pause], not be thinking about…like I say, ‘I
don’t have anything. I’m fine.’ And, well…positive things like that.” On the day of the
interview Helen’s daughter came to the appointment with her, but she did not speak
English either. Her daughter could not provide an interview because she was in a hurry
to get home to her one-year-old baby. Helena lives with her daughter, her husband, and
granddaughter in one small apartment. Helena reports that she has no worries. Her main
concern is that she needs to focus on the positive and getting better. She needs to do
what she can to move forward, endure the illness, and follow the doctors so that they can
do what they can to make her cancer disappear. Helena gets tired easily because she
continues to have fluid build up on her lungs, needing acute medical attention to remove
the fluid.
Subject four, Lorena, is a 42-year-old, Spanish-speaking Latina who was first
diagnosed with breast cancer in 2001 and now recurrent stage IV with lung and bone
metastases. Lorena was born in Mexico and entered United States three years ago. She
has never had any formal education and has been with her spouse, not formally married,
for the past 17 years. They have two young children, a girl ten-years-old and a boy eight.
Lorena has difficulty managing her daily activities of shopping and cooking; sometimes
she does not feel like doing anything because of her physical pains in her body and her
lungs. When asked what the doctor said about her cancer on the last visit Lorena said,
No, well the only…they had done a CT Scan and I asked how it came out. He
told me that the tumor was already reducing and the cancer too. Well I don’t
understand English but my [10-year-old] daughter translated a little and told me
that, well she told me that she understood that the doctor said, that when my
55
daughter, that how was the cancer and the only thing I understood was that he
said, “no well it’s okay, it’s okay.” And that was the only thing I understood, then
my daughter also said that it was going well, getting better.
Lorena is mainly worried about her cancer getting worse and that her children will not
know what is happening with her. Lorena has thoughts of dying and is worried that her
children are going to suffer. Lorena is also concerned with their finances because she has
not been able to work and they have bills from the treatment she received in Mexico that
they are trying to pay off.
Subject five, Maria, is a 57-year-old, monolingual, Spanish-speaking Latina who
was diagnosed with stage III ovarian cancer in July 2007. Her cancer is recurrent with
metastases in the rectum and colon. Maria immigrated to the United States from
Guatemala six years ago. She speaks very little English, has been married for 26 years
and has ORSA health insurance coverage to pay for her medical treatment. Maria’s
diagnosis was delayed because several doctors told her she was just having nausea.
Maria said, “They gave me medicine and a doctor said that I had an ulcer in my stomach,
and another said that I had, like, gastritis.” Her current doctor said that her cancer
condition is terminal; however, she believes that her cancer has disappeared and that she
is cured. Maria is not concerned about her condition because she has faith in God and the
doctors, that everything will be okay. She said, “Nothing is going to happen. This, this,
this is over.”
Subject six, Roberta, is a 69-year-old, Latina who was first diagnosed in 1996
with stage III ovarian cancer and recurrent with metastases in the colon. Roberta
immigrated to the United States from Mexico 25 years ago; she speaks mainly Spanish
and some English, and she has ORSA health insurance. Although she feels that having
56
cancer is difficult because she must tolerate the chemotherapy and she has been feeling
dizzy lately, she is determined to fight the cancer and be cured. She believes she can be
cured because there are very good doctors with very good treatment at the County. She
said, “I will get better….It can be cured, well there are many good doctors here…Yes,
[faith] in the doctor.” Roberta’s main concern is for her grown children who will be
saddened if something happens to her. She does not want them to worry about her.
Subject seven, Mario, is a 42-year-old Spanish-speaking only Latino who was
diagnosed with a brain tumor (stage 4 glioblastoma) around February 2009. Mario
immigrated to the United States from Mexico 18 years ago. He has been married for 20
years and has one 16-year-old daughter. He was diagnosed after he passed out and was
rushed to the County hospital where they found the brain tumor. After the surgery which
partially removed the tumor he was not able to return to normal functioning. He
experienced left-side paralysis and forgot many things about this life. Although he has
regained some strength and memory, his prognosis is poor; his cancer is very aggressive.
He uses a walker to ambulate and needs a full-time caregiver which his wife provides for
him. They lack family support because their family lives in Mexico. His main concern is
that he has been unable to work and make money to support the family. Although
Mario’s cancer is terminal, he believes that it can be cured. “Yes, of course. I think so.
There are many advanced things that have helped a lot…because the doctor told me that
it seems that it’s controlled already.” His main concern is that he will experience a
painful death.
Subject eight, Reyes, is a 53-year-old Spanish-speaking Latino who was
diagnosed with head and neck cancer, stage IV in 2006. Reyes immigrated to the United
57
States 27 years ago; he is divorced and has grown children who live close to him; he has
ORSA health insurance. Reyes waited one year with his tumor growing alongside his
neck, noticeably, getting bigger and bigger over time. He did not have health insurance
and worried that he could not be treated. So, he sought alternative, complementary
treatments which did not really help his cancerous tumor. The tumor grew so big that he
could not breathe, could not eat, and he became immobile. When he entered the County
system, the medical staff clearly thought he would die in a short time when they started
treating him. His tumor responded to treatment that shrunk the tumor, but it cannot be
surgically removed because the tumor has advanced into the tissues, locally around the
neck and head. His greatest concern was being able to be cured. Reyes said, “My
concern is that I want, I want to get better. I want, I want to be cured….And, for
example, now I see that I’m getting better, little by little. But, there is still danger, it is
dangerous…The doctor says it is [possible to be cured]. Yes, yes, with the treatment I
have.” Reyes wants to actively fight his cancer and maintain a positive attitude.
Subject nine, Javier, is a 71-year-old Spanish-speaking Latino who was diagnosed
with gastric cancer in 2009; currently his cancer has advanced into stage IV cancer into
the liver, with multiple tumors in the right upper part of the liver. When Javier was
diagnosed, he had surgery but refused to have chemotherapy. It is not clear what
happened; however, his wife said that they were told everything was fine. His cancer
recurred in 2010 and he decided to accept chemotherapy at that time. After starting the
first cycle of chemotherapy, he had a very bad reaction to it, which sent him to the
hospital for five days and he now has extreme neuropathy in his hands and feet which
make it difficult for him to walk and move. He also has experienced multiple sores in his
58
mouth and his teeth have fallen out. At this time, they are holding off giving him more
chemotherapy until his body heals a bit and then his physician plans to restart the
treatment. When asked what the doctor has told him Javier said, “I don’t know anything.
No. Only what they speak in Spanish.” And when asked about his understanding of his
illness, “Well, just to see…ask God to see, to see if I can [be cured] because ill, I wasn’t
ill anymore. I was fine. I was working. I didn’t feel anything.” Javier has been married
for 46 years and has four grown children. His main concern is to feel better. He is also
concerned about not being able to work. Javier had been active all his life and worked as
a truck driver. He misses the ability to function like he used to and feels extreme pain.
Subject 10, Armando, is a 39-year-old Latino who speaks both Spanish and
English and who was diagnosed with rectal cancer in 2004. He is not married, does not
have any children, is somewhat estranged from his family, and currently lives with his
girlfriend who helps him manage his disease. Armando has metastatic stage IV disease
which advanced to his lungs and bones. He had surgery multiple times in the past, once
to remove tumors which left him to use a colostomy bag to empty his bowels and another
time for back surgery to remove a tumor which was pressing on his spine rendering him
unable to walk. Since his back surgery he is feeling better and has recovered some
strength in his legs. Life has changed for Armando because he can no longer work or
financially support his life; but he is mainly concerned that he can no longer have
children because the chemotherapy has made him sterile. Armando does not want to
know everything about his illness. Although he knows it is serious he would prefer to
focus on the positive and the possibility of being cured from cancer, as he said, “whatever
59
God’s wants.” He fully believes in the possibility of being cured and prefers to focus
only on this possibility. In fact, he said that he sometimes forgets that he has cancer.
60
CHAPTER 5: RESULTS
Overview of phase one: Provider interviews
Analysis of semi-structured interviews led to the identification of emergent
patterns that illustrate perceptions of providers and the processes involved in EOL
decision-making discussions, specifically with Latinos. This section will first present a
brief description of four provider case examples to get a sense of some issues that
providers viewed as important to EOL discussions. Next, a summary of what providers
identified as their role(s) will be presented. Based on the discussion of the provider roles
for engaging in EOL decision-making discussions, a conceptual model was developed to
describe holding end of life discussions to develop goals of care that involved all aspects
of the patient’s intrapersonal and interpersonal behaviors within the context of their social
environment, along with their interactions with providers and the medical system. Role
descriptions included what providers said about: 1) who should initiate EOL discussions;
2) when providers were hesitant to begin EOL discussions; 3) the problems of having
multiple primary care physicians and; 4) the need to have a collaborative effort across
provider types.
The third section describes provider and system level factors that influence the
timing of EOL discussions and rapport building. Providers experienced difficulty
building rapport and engaging Latinos in EOL discussions because their patients entered
the system with advanced stage cancers which made the timing of discussions sudden. In
addition, the County Healthcare Network is a training institution where physicians rotate
and have limited time for building rapport with patients.
61
Finally, a section on patient-level factors will document the experience of Latino
patients with existing barriers that stem from being a disadvantaged and immigrant
population. Such factors influence interactions with providers and in turn impact EOL
discussions. Providers explore patient-level factors, including the perception that Latinos
assume a passive role in decision-making. Other factors such as education level, beliefs
and fears also influence EOL discussions making Latino patients afraid to ask questions
and engage their providers in dialogue.
Phase one: A description of some providers
Dr. Chen is a Chinese-American physician who has worked for the County
Healthcare Network for the past 10 years and currently works in Administration as a
training director of physicians. Although he was born in the United States, his father and
mother were born in Hong Kong and Taiwan. He mostly speaks English, with
knowledge of some medical Spanish and no other languages. He is Christian and attends
Church once a week. He has a pleasant demeanor and was enthusiastic about exploring
the barriers to EOL discussions for Latinos. During the interview, he expressed the
opinion that such discussions were,
…a good idea. These are issues that we deal with here a lot… you’re talking
about end of life discussions in sort of a population that we deal with a lot …low
income, Latinos, and I just thought it was very pertinent to what we do
Dr. Chen said that multiple barriers to holding EOL discussions exist for Latinos.
Although he uses interpreters during such discussions with Latino patients, he believed
that Latinos still may not understand him:
It’s sometimes when the education level is low…we discuss things but
understanding what’s going on is tough and unfortunately here and probably a lot
of places when there’s a language barrier…um whenever we go into this end of
life discussion you know my medical Spanish is not going to be good
62
enough…[We] try to get someone who actually speaks Spanish. But still there’s
something lost when you can’t do it yourself.
Ruth is a Caucasian nurse who has worked in the County Healthcare Network for
the past 31 years and specialized as a Hematology and Oncology nurse educator. She
was born in the United States, speaks mostly English and some Spanish, follows the
Jewish faith, and attends Temple about once a month. Ruth was somewhat upset at the
beginning of the interview because she is one of the nurses who provide continued
education for the clinical nurses who help patients onto clinical trials. Ruth struggled as
she talked about her work and believed there was a gap in the provision of education for
Latinos that impacts their EOL care. She commented that:
One of our barriers is…the fact that we’re a teaching institute and we are a
comprehensive cancer center. So, clinical trials are a huge part and…so
sometimes I don’t think that the physicians are as open-minded or as up front with
the patient’s about end of life issues when they are eligible to go on a
trial…There’s just some patients that would probably be more comfortable to go
home and get supportive care and end up on clinical trials or end up getting
treated to the bitter end, when in reality it did not extend their life at all. That
happens on occasion…[Providers are not] as upfront about end of life issues if the
patient’s eligible for a clinical trial. And then we have research nurses that work
with the patients and sometimes I wonder how upfront they are with the consent
on the clinical trial, especially when there’s a variety of languages, not only
Spanish…We are a teaching institution and clinical trials is a huge focus. We are
a certified Comprehensive Cancer Center and you know the National Cancer
Institute wants a variety of nationalities and ethnic background on clinical trials. I
don’t think the patients are coerced, but they’re encouraged to go on clinical trials
if they are eligible.
Gabriella is a Hispanic social worker who has worked for the County Healthcare
Network for the past six years in the Women’s In-patient Ward. She also has had some
experience working in the Gynecology and Oncology out-patient clinic. She was born in
Guatemala and immigrated to the United States with her parents when she was nine-
years-old, and is Catholic who attends Church occasionally. She speaks Spanish and
63
English fluently, and Spanish is her primary language. She stated that her ability to speak
Spanish helps her stay connected with her Latino patients and build rapport. She
emphasized having positive feelings about being a social worker who could speak with
her Latino patients saying, “I feel very strong about my profession and feel that my job is
here for the families, whatever they need or whatever issue they might have…[and]
because I’m Spanish speaking, I mostly get the Spanish speaking cases assigned to me.”
Although she believes that the physician should initiate EOL discussions, she actively
involves herself in EOL discussions with her patients in order to help them make plans.
She said,
Sometimes a lot of the women are alone or they have adult children that need
support, so they want help with getting their family members over from wherever
they may be…So, we help out with getting them like a visa letter, like a
recommendation letter…And then a lot of times the young, like let’s say late 20’s,
early 30’s,they have like younger children, so we have to plan…help them kind of
plan and organize their thoughts [about] the dying process. My experience with
that is that if a person is dying it can go either way, cause a lot of times people can
accept it and they’ll PLAN with you. Those are the STRONG ones; I mean I can
actually count the women that I’ve worked with that are dying that can plan for
their children, as opposed to the others that are like in denial.
Juanita is a Hispanic, Catholic Chaplain who has worked for the County
Healthcare Network for the past six years. She was born in Mexico and entered the
United States with her parents when she was five years old. She speaks both Spanish
and English. Juanita said that she felt “very committed” to working with the Latino
population because she had a close “connection” with them. One of the issues that
sometimes caused problems for providers is the fact that Latinos have large families.
Juanita said, “Latino families are very close to each other, they're very close. And when
someone dies, people have the tendency of surrounding that person.” So, many people
will come to the hospital and “many times in the waiting areas people have their luggage,
64
have food, have so many things, and they've been there waiting for days.” Some Latinos
have such,
Strong faith…[that] they kind of close themselves to just pray and just concentrate
on God. That God will save this person. That God will help this person. And not
be realistic to reality, to what truly could happen…They just want to focus on
God. That God will take care of everything….They don't want to see it or they
don't want to talk about it [dying]… It becomes a problem when the doctors
confirm…we cannot do anything else for this patient. That's when it becomes a
problem because at times, people still doubt and people still want a miracle.
Role Descriptions
Providers were asked to give a one-sentence description about their role(s) in
EOL discussions. They also described their role(s) throughout the interview as they
spoke about barriers and facilitators to EOL discussions (see Table 8, for some examples
of role descriptions by provider type). The majority of providers (89%) stated that they
should engage patients in EOL decision-making discussions, some said as early as
possible in the illness trajectory, to explore and educate patients as well as involve family
members to discuss EOL care options, develop goals of care, provide information, clarify
confusion, and explain aspects about the transition from discontinuing curative treatment
towards accepting EOL care resources such as palliative and hospice care. While
providers spoke about their role(s), they emphasized holding EOL discussions to develop
goals of care that involved all aspects of the individual’s intrapersonal and interpersonal
behaviors within the context of their social environment along with interactions with
providers and the medical system (see Figure 2, The Context of Developing EOL Goals
of Care).
Providers gave examples of EOL decision-making discussions that were placed in
the context of developing goals of care for patients and their family members which
65
involved: 1) patients ability to cope with the physical, emotional, social, and life course
changes; 2) the family members in their level of previous and current involvement with
their loved one, the providers, and the medical system; 3) providers’ skills and ability to
educate patients and their family members about EOL care options versus continuing to
adjust the patient’s treatment until treatment no longer worked; and 4) the medical system
which identified aspects of the public health care system that complicated navigation of
system barriers in order to access EOL care resources.
Providers said that EOL communication often focused on identifying the patients’
needs in order to relieve their suffering physically, emotionally, socially, and spiritually.
Since Latino patients were characterized by providers as passive in decision-making,
some providers identified an advocacy role where they would listen to the patient and
identify where miscommunication had occurred and elicit whether the patient had any
questions. This aspect of eliciting information from patients was emphasized as
important because of the barriers in EOL communication that providers identified (e.g.,
existing language and educational limitations, passivity about patients’ cancer condition
and giving it over to God and the doctor, the emotionality associated with holding EOL
discussions in terms of denial, frustration, difficulty with giving and hearing bad news, as
well as the multiple system factors that impact Latinos and their providers which will be
discussed in chapter 5 and 6). After the provider identified a patient’s specific needs,
then he/she would encourage the patient to express their feelings and concerns to their
physician. In addition, they felt it was important to involve patients and family members
in EOL discussions to help them make informed decisions that reflected the patient’s best
interest for EOL care.
66
TABLE 8. Role Descriptions for Engaging in EOL Discussions by Provider Type
Provider
Type
Role Descriptions
Physician
1
It’s important for the doctor to bring up the…[pause] if the patient didn’t bring it up, and give them all
their options…bring up the end of life discussion with the family or patient, whoever…and then give them
options and then make sure that they make the decision.
2
All along with the patient you need to be giving them feedback from the very beginning that you meet
them, feedback as to what their condition is, if they have any questions, to answer any questions they
might have. And then number two, if they are not asking the questions they need to, then to bring them up.
3
To be a guide. I feel like I’m often a guide to the path towards end of life, or sort of like…more than
anything I’m just sort of stating the obvious.
4
To understand the patients expectations and to [pause] educate them that we’re not giving up, we’re just
changing the focus of their care.
5
I initiate the discussion I ask for patients to go home and talk with their family about their wishes, and to
come back and tell me. When things are very advanced, I will make recommendations, such as: ‘I don’t
think it would be appropriate for you to have chest compressions, or intravenous medications to prolong
your life because we just don’t have control over your disease. And even if we were to prolong the time
your heart lived or your lungs lived because the disease is out of control, it would be futile.’ So, I make
recommendations when it seems appropriate.
Nurse
1
The word advocacy comes to mind for the patient. Sometimes I like to just be the ears for the patient and
make sure what they’re hearing from the physician or from the person that’s talking to them about the
possibility of them being at the end of life, that they truly understand what’s being said and then of
course…to tell them, ‘Then what will we do with you after this decision you’ve made. This is what we
will provide for you.’
2
To be there to give them the best support and to be able to offer any explanations or clarifications after
speaking with the physician about their illness that might be supportive to them or at least just to be there
mainly for comfort.
67
TABLE 8: Continued
3
I provide them the information, I am providing…connect the dots about doctors' orders, about hospice,
about provisions at home, at the bedside. I get it covered.
4
To help a terminally ill patient palliate their symptoms emotional, spiritual, physical…I’m really educating
them and sometimes act as a liaison with the primary team.
5
Just clarify what they think the treatment plan is and what will happen…telling [physicians] I think they
need to have the discussion if I don’t see it documented. And who needs to be involved in the discussion,
whether it’s us, palliative care, chaplain, social work, who needs to be there, because I don’t think they
should ever have those discussions alone.
Social
worker
1
[I] weigh out the options, discuss and [provide] education...and to evaluate with the patient…the
consequences of [their choices].
2
To be present for the client, to answer any questions they may have, to provide relevant information, and to
not force my beliefs or my things about end of life and just be with the client where he’s at or she’s at.
3
Be supportive, whatever the patient decides to choose, it’s their decision and whatever it is, we’re here to
support. For example, if you decide that you don’t want any more treatment, you want to go home, then I
make sure you get all the [resources]…and help dealing with whatever unfinished business the patient has.
Or if the patient wants more treatment, then I make sure I convey that to the team.
4
To prepare the family emotionally, to face the loss of a loved one…to assess what their needs are [and]
know what kind of support they would need to help them through this process whether it be grief
counseling, support from other people in organizations, families, friends.
5
Be available with the doctor to discuss EOL care, emotional support, to address discharge planning and to
connect with community resources.
Chaplain
1
To try and deal with the questions that come…I do not try to direct people or tell people what to do. I try
to explain and maybe find out alternatives, then…trying to answer that question, that, ‘Why?’ Then of
course from our particular specialty is to uphold them before God, to pray with them, and give them
whatever kind of spiritual help and support that we can
68
TABLE 8: Continued
2
Helping people move toward peace in their end of life decision-making…Help them work out within their
hearts and with their family what’s going on and what they want.
3
Just trying to have a peaceful resolution for both the patient, his family, and the staff, always in the
patient’s best interest.
4
It’s listening to either the patient if they’re able to communicate or their loved one, what would be their
questions and issues, and based on that then I would take direction. So that direction could be a simple
presence visit, it could be overtly religious by a prayer or a ritual or it could be a referral role, where my
role is really to bring in the Jehovah witness minister or the rabbi or someone else to meet their spiritual
need.
5
To be an advocate, not just to talk just about spiritual matters or the relationship with God or whatever.
But, in order for them to have a little bit of trust and confidence in me, I have to see myself…I have to see
myself as an advocate.
69
Who should initiate EOL discussions?
When asked who should initiate an EOL discussion, the majority of providers
(85%) said that the “primary care physician” is the one provider who should begin EOL
discussions with patients and their family members because he/she was responsible for
knowing and departing information regarding the overall picture of the patient’s
prognosis and disease process. The primary care physician is the provider “who initially
diagnoses the problem…it’s their responsibility, just like in any setting with any patients
FIGURE 2. The Context of Developing EOL Goals of Care
70
(e.g., in the hospital with the primary medicine team or the oncologist in the outpatient,
oncology clinic).” The primary care physician should have the role of initiating EOL
discussions when they become aware that their patient is in need of an EOL discussion
“because they’re the ones who can best discuss the patient’s prognosis [and] the different
options.” According to one of the primary care physician interviewed:
The primary team has to keep up with the prognosis. I think that has to come from
the [primary care physician], the prognosis, the disease--because that’s who’s
taking care of the patient. And you can’t really have an EOL discussion without
having a clear understanding of prognosis.
One of the nurse informants emphasized that it was the primary care physician’s
responsibility to inform the patient about the terminal medical condition before he or she
gets involved saying,
What should happen by the time I’m called in is that the physician or whoever is
actually in charge of managing the disease process of the patient’s medical care,
should have made clear to the patient that in their opinion they have no more
medical options that they can offer them.
A social worker expressed that the primary care physician is the one who should lead
EOL discussions and dialogue with patients and their family members about their
medical condition. After the primary care physician has held an EOL discussion, the
physician is then responsible for also coordinating their patient’s care with other
providers:
I would want the primary doctor to lead everything…The primary, he’ll have to
carry out orders for whatever, you know, if it’s DNR/DNI, he’ll have to walk
through that…The primary doctor in my view needs to be spearheading all of this
in collaboration with palliative care and should feel comfortable in collaborating
and being present and not deferring [EOL discussions] if you will.
71
Some providers are hesitant to begin EOL discussions
Some social workers said that, at times, they hesitated to engage patients in EOL
discussions because they could not tell whether the primary physician (the physician in
charge of the patient’s medical case) had presented the information to the patient or not.
The lack of clarity about what the patient knows about their condition presented problems
for social workers because, as one social worker said, it was not their role to give out
medical information to patients, but it was their role to engage in EOL discussions. Social
workers preferred that the patients demonstrated that they knew something about their
terminal condition before beginning a discussion. Some social workers preferred to wait
until the patient openly talked about dying or showed that they wanted to talk about it by
asking questions about the possibility of dying. For chaplains, like social workers,
although they said it was important that patients and family members engaged in EOL
discussions, they did not believe that it was their role to initiate EOL discussions unless
they were invited by another provider, a patient, or their family member to begin talking
about dying. According to one of the chaplains, he would not “come from the top”
outright with the EOL information or talk about end of life issues unless he was invited to
do so:
The important thing is what’s happening with the patient and what the patient
chooses to tell me. I agree that if the patient has already been told for example,
[that] they are going to die and they have not much longer to live…uh and if I
know that, that gives me some added information and in my mind is ‘Why aren’t
they talking about this?’ But it’s not my job to pull it out of them…Usually I’m
hearing from the family or the patient has told me that they don’t have long to
live. I don’t come from the top with [the information], no matter how I got the
knowledge. If the person doesn’t know that they’re quite sick and getting worse, I
wouldn’t say anything.
72
As this chaplain expressed, chaplains would primarily talk with patients about death and
dying only if the patient began the discussion. This could be why 28 percent of chaplains
and 18 percent of social workers did not emphasize the importance of engaging in EOL
dialogue. Some were hesitant to provide education and information, to clarify goals of
care, to elicit options, and explain things about EOL in detail because the patient had not
engaged in conversation with their physician.
Who is the one in charge when multiple primary care physicians exist?
There was a problem with identifying one primary care physician to be
responsible for holding EOL discussions because there are many different primary care
physicians across services within the medical system. Any one primary care physician
could identify that an EOL discussion was needed and it could happen anywhere the
patient was being treated (e.g., inpatient or outpatient settings). Explanations about this
were very confusing. One nurse case manager said, “For hematology, they serve as
primary. For gynecology, they do serve as primary. But, for oncology patients, if you’re
medicine [in the hospital setting], if you’re breast cancer or prostate, no. You’re followed
by general medicine, and oncology only writes the chemo [orders]; they are not involved
in the actual care.” So, when cancer patients are hospitalized the patient’s primary care
physician changes from the oncologist to a general medicine physician on the inpatient
medical team. There is not just one primary care physician because primary physicians
are located in several different services across the medical system, including oncology,
the intensive care unit, the acute medical care ward, and the palliative care specialty
service.
73
A barrier to EOL discussions existed because each primary care physician on the
different services could provide a patient with different information or they could defer
the EOL discussion to another primary physician on another service. One social worker
said, “It’s not just one primary team, you have other set of teams on board too. So they
can give different prognosis.” And, another provider said, “Everybody waits for the
[primary] physician to say something [first]” before talking with patients about death and
dying issues.
Collaborative efforts across provider types
Providers said that EOL discussions also involved teamwork as ninety-three
percent stated that EOL discussions should be collaborative and involve a joint effort
with other providers across disciplines in order to develop an EOL care plan. All (100%)
physicians, nurses, and social workers expressed that collaboration was important, while
only above half of the chaplains (55%) said that it was important. One nurse said:
I think the communication needs to…we need to make sure that whatever the
nurse is picking up as issues, need to be communicated to the physician and
always to involve the physician because they’re really the primary team member
that manages the care, they’re over all the one who is the primary person in
charge of the medical care of the patient, when they’re hospitalized. But the nurse
is the coordinator of the care and you’re there 24 hours, you’re there at the
bedside, you’re closely observing the patient, assessing the patient… The nurse
can assess. And I think that the nurse can have a discussion with the physician
and say, ‘Okay, this is what the patient is saying’ and maybe be there with the
physician when they discuss these issues. I don’t think the nurse should be
removing herself. She should be there because she will be the one coordinating
the care.
Social workers said that collaboration did not always occur because they were
sometimes excluded from the team by other providers.. For example, one social worker
said:
74
Doctors talk. I mean they do their rounds every day, so they discuss their cases
every day. But sometimes social workers get left out. We do…And I think
sometimes they leave us out on purpose, so that they can make their decisions
without us.
Some social workers perceived that collaboration between physicians and social workers
was limited because physicians did not want to have EOL discussions at all, preferring
instead to direct the discussion to other providers like the palliative care team. Chaplains
said they understood the importance of collaborating with other providers, but for them,
they limited EOL discussions unless the patient, family member, and/or other provider
requested the involvement of chaplain. It seemed that chaplain involvement was not
perceived to be as critical as clarification of medical concerns, which involved providers
other than chaplains.
Provider and system level factors
Timing of EOL discussions and rapport building
Providers (N=44) were asked to describe their experiences of talking with patients
about their terminal cancer conditions and the possibility of dying (i.e., end-of-life (EOL)
discussions). Timing and rapport-building were critical components of EOL discussions.
Most providers (90% physicians, 75% nurses, 73%, social workers, and 73% chaplains)
said that a time for rapport-building between providers and their patients was needed for
patients to begin to make informed decisions about care. However, rapport-building was
difficult to achieve in their service delivery context. Specifically, in the County
Healthcare Network, rapport-building was challenging due to three main factors: 1)
Latino patients tend to enter the health care system with advanced stage cancers which
made the timing of EOL discussions sudden; 2) the public system is a training institution
where doctors tend to change often, leaving little time for the patient to build rapport with
75
one physician before changing to another; and 3) Latino patients have fears that stem
from being a disadvantaged and immigrant population. These three factors will be
described below.
Half of the participating providers (50%) said that patient-provider EOL
discussions were particularly complicated for low-income Latinos because they tended to
enter the public health care system with more advanced cancers. In these initial
encounters with the system, patients were hearing “cancer” for the first time, while also
learning that they had a more serious condition than expected. One physician referred to
having no “pre-exposure” to the patient under these circumstances:
Particularly in the hospital setting…they present to us acutely sick and towards
the end. So I don’t have necessarily that pre-exposure [time]…um as much.
That’s kind of the challenge that I was talking about (Primary Care Physician in
the Geriatric Out-patient Clinic).
Having an EOL discussion in the first meeting between a physician and a patient
was highly problematic for physicians, who felt that holding discussions about death and
dying and advanced EOL planning on the first visit could cause fear. Several physicians
commented about this:
My role as a physician is you need to do it at the right time which means telling
them about their disease while they are not in the process of arrest [or in crisis].
The doctor should promptly initiate the discussion as early as possible but not on
the first visit because, it’s like…“I’m your new doctor” and [you’re] beginning to
know the person (Administrative Physician in Quality Assurance, 30 years in the
County Healthcare Network).
Other providers agreed that having EOL discussions during times of crisis was
problematic. One nurse said,
[You mentioned not in a crisis. Is that the time to talk about end of life?] Oh
absolutely not! You should talk about these things when you’re not sick, when
you’re healthy and have this done WAY ahead of time and do that and rather than
waiting in crisis mode. No one is thinking straight, they’re all in crisis, patients,
76
family everyone is, nurses, everybody’s in crisis. And the energy that people feed
off of each other, it’s very difficult to make a really good decision. So, no! That’s
really a bad time to talk about these things. These things should be done prior to
anyone being ill (Thirteen years working in the County System, with five years
experience on the palliative care team)
One social worker who had worked for the County for 22 years said, “Some of it is hard
because they’re currently sick and you don’t want to freak them out worse…When
people are sick, they are scared. It’s all in how you approach it, obviously.”
More than half of the providers (55%) were concerned that EOL information was
not communicated to patients. Some providers said that although EOL discussions
should be done earlier along the disease course, they nearly never happened before
patients entered the intensive care unit (ICU). EOL discussions usually happened in the
ICU when patients were dying. A second-year oncology fellow said,
We should do it in the clinic before they’re [pause] in the hospital. These
conversations with the patients…we don’t. And I’m not exactly sure why it’s like
that…Here we tend to wait a little bit longer to have these conversations and also
here I found that, [pauses] DNR DNI tends to sort of go hand in hand with
hospice and comfort ideas.
Rapport-building was also limited because the County Healthcare Network is a
training institution where physicians learn their skills and specialize in different areas of
medicine. Doctors rotate through different assignments each month and each year.
Providers (50%) said that patients had too many different physicians, which limited
patients’ ability to build trust in their physicians and complicated their understanding of
the severity of their illness. It is important to note that the uninsured and underinsured
must rely on a publicly sector health care system as their safety-net when they become ill
and often lack one primary care physician to guide them through their medical care. In a
77
public sector, teaching institution patients can have many different physicians which can
limit patient-provider EOL communication:
It could be that [the patients] were told…and now they have a new doctor and so
this doctor assumes that they’ve been told. And so some of that is just our system.
It’s just a teaching institution and sometimes there isn’t one doctor who’s gonna
continue to follow you throughout your care, you know a year or two years,
there’s gonna be several doctors… now you’ve got some other doctors…so that
might be an issue in terms of being able to relate and having trust with that doctor.
So you’re having to continue to reestablish relationships with different doctors
(Social worker).
So in terms of the Latino setting, usually my discussions with them are at the
public hospital…it’s somewhat difficult because we meet them for a brief period
of time and often times there isn’t a pre-morbid history of patient - physician
relationship. So when they come in sometimes they are acutely sick, and even
bordering on death. So we immediately have to jump into that a light discussion
which is kind of harder when you don’t have that long-term rapport (Primary,
geriatric care physician).
Assumptions were often made about whether or not a patient had an EOL discussion with
their physician. It was hard to tell who had held an EOL discussion because patients
lacked a consistent relationship with one physician. As one social work supervisor said,
“The doctors don’t have a relationship with these patients or they don’t know them. And
so we will see doctors, maybe one doctor told them or didn’t tell them” information about
their terminal cancer condition.
Another issue about rapport building and continuity of care involves the
LAC+USC public sector health care system as a training institution where physicians
rotate through different units, having little time to build rapport with patients as well as
with other providers who are more stable to the medical system (e.g., nurses, social
workers, and chaplains). For these providers, the fact of being a training institution
affects their ability to work collaboratively with physicians in training because they rotate
through the system so quickly. Providers emphasized that EOL discussions needed to be
78
collaborative and involve providers from multiple disciplines (e.g., doctors, specialists,
nurses, social workers, chaplains); however, this was a problem in the training institution.
Mainly, non-training, non-physician providers (e.g., nurses, social workers, and
chaplains) talked about the consequences of being in a training institution and that
training physicians might delay initiating or following through with EOL discussions
when they rotated to another training position. While these physicians transferred
information about their patients to the incoming group of training physicians, rapport
building started all over again with the patients. Social workers commented on the lack
of continuity of care, that the new group of training physicians did not know what type of
EOL information had been discussed or what had been offered to patients. When
physicians signed-out of patient care during medical rotations, some information about
the EOL discussions was lost because some discussions about EOL care were not
documented (e.g., information about patient’s relational style or desire for talking about
dying). Some nursing staff felt responsible for filling in the gaps of information
regarding patients and their family members for those training physicians entering into a
different rotation and inheriting a new group of patients. Unlike physicians, nursing staff
were often at the bedside for 24 hours and had learned a great deal about patients and
their concerns about EOL care. Not only was this a problem for non-training providers, it
was a problem for patients too because they both were “having to continually reestablish
relationships with different doctors.”
79
Patient-level factors and existing barriers
Multiple existing barriers make EOL discussions more difficult for Latinos
While many of the Latino patients were very sick the first time that they entered
the public medical system, this was not the only barrier that complicated EOL
discussions. Language barriers and knowledge deficits were also highlighted as barriers.
A primary, geriatric care physician stated:
Sometimes with our recent immigrant population there is sort of a knowledge
deficit in terms of medical terminology and understanding, as well as the
language barrier. It requires getting a translator…Sometimes communication is
touch and go.
Similarly, a social worker stated, “Not having somebody who speaks the language
becomes a barrier to communicating and establishing that relationship.” A Latino nurse
said that many patients simply do not understand their providers because they are hesitant
to openly talk with their physicians:
I think a lot of times the patients are not as open with the doctors…[and] We do
have a lot that don’t understand…Some patients are like you know they’re very
slow, you have to repeat things many times and they still don’t get it. They’ll still
come back and ask you after you’ve gone over things with them many times.
One physician explained how the combination of the lack of rapport and limitations in
language and education were problematic and led to miscommunication about the
severity of illness:
When we’re working in a hospital and I’ve never met this person before. I know
them now for a day and I’ve got to tell you that “Look this…cancer or whatever it
is…is probably really bad and going to lead to a bad prognosis and you might
die.” It’s hard to really gauge…if they understand. And the shock of it-what I’m
saying and everything…as we get further along they’ve been here [hospitalized]
for maybe a week; you can start to sense some people don’t understand because of
an education barrier and unfortunately for the first week I might not know that
they’re not understanding, for quite a period of time because I don’t know them
that well. And then a week later, unfortunately a lot of things have changed and
much might get worse. And now I haven’t explained it appropriately over that
80
course of that time because I think they’ve understood. (Director of Physicians’
Training Program).
Multiple barriers compounded EOL decision-making discussions for Latinos as
they entered the health care system with advanced cancers. While Latinos tend to enter
the health care system late in their disease course and sometimes in times of crisis
through the emergency room, they can also experienced such problems like lack of health
insurance, limited knowledge and understanding of the medical system, limited ability to
speak English, low education, and general lack of finances and resources. The limitations
that exist prior to entering the medical system, therefore, influenced how providers
communicated with their patients (e.g., begin to build rapport, engage their patients in
EOL discussions, and talk with them about the severity of their illness). The majority of
providers said (95%) that such barriers often complicated EOL discussions for their
Latino patients. One social worker said that for Latinos, “It’s an issue for them because
they’re struggling more financially because they’re just getting here and getting settled.
And they have more struggles than the person who’s been here forever.” An experienced
physician administrator stated:
[At the County Hospital] We probably have more advanced disease than other
hospitals…There is difficulty in getting heath care and getting through the
insurance process, and difficulty due to [issues] like…moving around the country,
not living in one place for long, or living on skid row, they’re not going to see
their doctor regularly…They might be pushed back trying to navigate a public
system…They may need to go the county clinic, they need to find it, but they
don’t know where it is and then they go to emergency room, they get an
appointment to a clinic, and then find out about the costs and restrictions to doing
this. These are the problems. Well, they can’t get in quickly if they are totally
unaware of the system, then this gets delayed…. this is why we are seeing them
[with more advanced cancers]. Once we get them into the system, in one of our
different clinics…all need assistance…Our patients may have to take three buses
to our clinic and if they’re not feeling good they are not going to come…because
it is so hard to get here.
81
In addition, EOL discussions were complicated for Latinos because of past
experiences with discrimination which could influence the patient-provider relationship.
More than half of providers (55%) said that some Latinos perceived that they get less
attention than other patients; and less than half of providers (41%) talked about the
vulnerability and possibility of discrimination for underserved Latinos. Providers said
that some Latino patients wrongly assumed they were being discriminated against. It
could appear that a provider was limiting treatment if they had an EOL discussion with a
Latino patient to enroll them in hospice care when treatment was no longer working. One
social worker wondered whether some Latinos in a public hospital thought that “being in
a public facility if we were limiting care or if they’re being guinea pigs on the opposite
end or trying everything…from experimenting to limiting because of the fact that it’s a
public hospital.” In addition, some patients may want more treatment without
understanding that continuing it could cause harm and impact the quality of the end of
life. One social worker mentioned that when doctors’ shifted to palliative and hospice
care discussions with underserved Latino patients, that the discussion could be perceived
as though the doctor “‘doesn’t care about the patients or he doesn’t want to or she doesn’t
want to help me because I’m low income…’ But it’s not that. That’s not the case.” One
physician explained that some non-acculturated Latinos utilizing healthcare in a training
institution could become suspicious and believe they are getting less attention than other
patients:
I see enough non-acculturated patients where it’s end of life, you may sometimes
feel that they have suspicion or concern that they haven’t gotten all the chances
that you, [pause] you know. But usually that is not the case. Usually when you
really have tried with a patient, that’s how we’re educated, we’re educated to keep
going and going. So it’s pretty rare that there’s somebody we’re going to stop
short on in an academic setting...because we have these clinical trials. We have a
82
lot more that we can offer somebody all the way down to the end. You don’t see
that in the community (Attending physician specialized in Hematology and
Oncology).
This physician disagreed that patients were getting less attention because, in the academic
setting, they have multiple interventions like clinical trials that provided patients with
different options “all the way down to the end” of life. This will be discussed in the next
section with the triad data which supports that patients were generally satisfied with their
medical care and treatment options as subjects said things like, “I’m grateful to God right,
and with all of the hospital personnel because they have treated me very well. And, I
have received a good treatment (Maria, subject 5).”
Patient-level barriers: Perceived passivity, education level, beliefs and fears
“We do generally find that our patients are very passive.”
Providers identified factors that limited end of life decision-making
communication with their Latino patients. More than a third (33%) of providers said that
their Latino patients were passive in decision-making and over half stated (55%) that they
seemed to prefer to follow their physician’s suggestions. An experienced physician
administrator stated that, “patients are very passive to what the doctor wants to say or do”
and that the “almost uniformly accept our recommendations without really pushing back
at all and asking further questions.” Another physician administrator stated that,
Many Latino patients are timid, quiet, and not asking a lot of questions, or maybe
it may be that they are putting faith in the doctor…but, it may also be that they are
here on tenuous grounds and they don’t want to make trouble in clinic.
Some of the doctors expressed frustration with their patients’ lack of engagement because
passivity limited interactions between them which led to missed opportunities to clarify
miscommunication and verify patient’s wishes for care. For example,
83
We don’t tend to make paternalistic or maternalistic decisions for our patients.
We want it to be more…we make recommendations. We want it to be much more
of a partnership. And so it is disquieting when patients just sit there and don’t ask
any questions and say ‘Yes doctors, whatever you want.’ We don’t want that. We
want them to talk about it with us (Chief Physician, Administration).
Eighty percent of providers said Latino patients tend not to ask questions and
simply agree with their physician’s treatment recommendations, which limits patient
understanding about care. Providers gave four reasons why their Latino patients do not
ask questions saying it was because of their: 1) lack of knowledge and education, 2)
fears, 3) beliefs in God, and 4) respect for doctors and other authority figures. Providers
talked about these four issues in a way that was hard to tell which one reason was more
likely to hinder communication. Some social workers suggested that disadvantaged
Latino patients may not question their providers because of a disparity in education:
[They are] Humble. A lot of them lack education. And they feel like they
shouldn’t question. How can they question? They don’t have an education. [The
doctor] is the person who is educated. Some of [the patients], they don’t read,
they don’t write.” (Latino Social Worker, six years in the County setting).
Another Latino social worker said that it could also be that Latino patients are “too
intimidated to ask questions…they don't understand their options…because they're
intimidated, they don't even know what to do, they don't even know how to ask, [or] even
know who to approach.”
Latino patients may be afraid to ask questions
Many reasons were given as to why patients were afraid to speak up and ask
questions: 1) they feel intimidated by their physician who has more knowledge than
them; 2) they are afraid to make a mistake or show that they do not understand; 3) they
fear that the doctor will get angry with them for not understanding; and 4) they are
84
undocumented and do not want to call attention to themselves for fear of being deported
if they speak up. As one social worker explained:
Undocumented [patients] here, they don’t know much…they just kind of go with
what is being said to them….you’ll listen to your authority and you just learn to
accept, that submissiveness, to submit to what they say…patients perceive doctors
to be authority and they just accept whatever the doctor says on top of their lack
of education too or lack of communication skills.
One attending physician noted that some Latino patients accept what the doctor says
because the doctor is the authority:
They don’t have any questions and they really don’t want to challenge you…they
don’t like it. It’s almost a sign of weakness if you say, ‘Well, you could do this or
you could do that.’ They don’t like that… ‘You’re the doctor. What are you
giving me the choice for?
This doctor expressed that this attitude of doctor-knows-best is “dangerous,” and that it
requires him to be more emphatic in his directions because “they’re not gonna accept
anything unless it’s coming out of my mouth.” Although some physicians did not like the
idea that they would be seen as the ultimate (and only) authority, three doctors said that it
was easier when they made decisions for their Latino patients because they believe in
their doctor and accept what they say. One doctor said that when patients let the doctor
decide on their treatment course he can then do whatever he thinks is best and that was
easier. He preferred it that way saying,
[Would they say, ‘Whatever the doctor wants and God’s will?’] Yeah. That comes
up. Unfortunately, I think sometimes [pause] we all think that’s easier because if
you put it all in my hands. I’m just like, ‘Oh great, I can do whatever I want here.’
I’ll do whatever I think is best. But, again this sounds cold, but like not having to
[pause], to so much agree on everything because you’re just going to agree with
what I say, is sometimes easier. (Director of Physicians’ Training Program).
Similarly, another physician stated that he preferred to make the decisions because it gave
him the authority to explain that it was time for the patient and family to change their
85
focus towards improving the quality of life instead of focusing on curative treatment. For
example,
That’s what they often say to me, ‘You’re the doctor, you make the decision.’
Well, I actually prefer it sometimes, because it’s easier than to say, that this is it.
It’s easier to say, if they say, ‘I don’t know doctor, you’re the doctor, what do you
think?’ It’s easier for me to then say, “I think that you’ve already tried a lot of
different chemotherapies and it hasn’t worked. I think that you’ve already been,
you know, put up a good fight against it. And that you know now it’s time to go
live out whatever time you have left with your family instead of in the clinic."
You know? (Physician, second year oncology fellow).
Latino patients are particularly vulnerable when they simply follow their
physicians’ treatment suggestions, especially if the physician makes decisions for them
without their understanding. One nurse spoke about how chemotherapy had been giving
to end stage cancer patients and that these patients experienced a great symptom burden
from their treatment. The nurse expressed her concern about the focus on the research as
in phase one clinical trials rather than focusing on the quality of the experience for the
patient. For example,
Why are we giving chemo to somebody who is SO end stage that the
symptoms…the symptom burden is so great! Why are we doing this?! You get
[physicians saying] “It’s not going to kill them. It can’t hurt them.” But think
about it…it’s the mindset, it can maybe do. But c’mon…that’s how research is
done. That’s why I’m not a research nurse (Nurse, specialized palliative care).
86
CHAPTER 6: RESULTS
Phase Two: Triad Interviews
As illustrated in Chapter 5, treatment decisions are not made in isolation, but are
part of a complex process that involves information exchange, viewpoints, and values of
the cancer patients, their family members, and providers. It became clear in this study
that having only the providers’ perspectives on end of life (EOL) treatment planning
would be insufficient. Patients’ and family members’ were critical to a more thorough
understanding of the dynamics involved during this inevitable time in the last stage of life
where a person is dealing with a terminal cancer condition. Accordingly, triads
(comprised of a patient, his/her family member, and his/her provider) were interviewed,
as described in Chapter 3. Each member of the triad reported on their level of
understanding about the circumstances surrounding the cancer condition and the ongoing,
evolving treatment decisions that occurred over the illness course. Triad members
reflected upon different points in time along the illness course including initial diagnosis,
recurrence, and continued treatment changes, for example, when treatment stopped
working or caused extreme physical side-effects to the point where treatment needed to
be withheld for awhile. Analysis of the triad data focused on 1) the congruence of
understanding of the severity of the cancer condition (e.g., knowledge of the cancer and
severity, preferences about knowing the severity, beliefs about the course and issues of
concern) and 2) whether EOL discussions had verifiably occurred.
This section presents triad case studies from the oncology clinic that highlight
what was said about the severity of advanced cancer and what participants suspected
would happen in the future. Despite the attending physician’s assurance that each
87
patient had been informed about the severity of his/her terminal cancer condition,
determining the exact provider who had held an EOL discussion—and the nature of that
discussion—was problematic. As foreshadowed by the providers’ descriptions in
Chapter 4, EOL discussions were often delayed until a patient was hospitalized, at which
time the responsibility for holding an EOL conversation was deferred to the palliative
care team. Gaps in patient-physician communication contributed to problems such as
missed information about patients’ preferences for EOL care as well as
misunderstandings about the purpose of treatment and likelihood of dying from cancer.
EOL discussions were problematic for physicians and their patients and reasons
were given by both samples for not focusing on EOL issues. Physicians limited EOL
discussions because they did not want to begin an EOL discussion too soon and they did
not feel they possessed the rapport necessary for beginning this type of discussion with
their patients. Patients also reported not wanting to focus on EOL issues, preferring
instead to talk about continuing treatment and getting better. EOL discussions were
difficult for some providers because they felt that they were healers who provide patients
with medical treatment (supposedly to prevent or forestall death); while discussions were
difficult for patients because they did not want to think about having a terminal cancer
condition and preferred to focus on living instead of dying.
In this chapter, case studies will be presented in order to provide examples of the
gaps in EOL discussions that impact how patients understand the severity of their illness.
Findings will describe what patients know about their cancer, while some hold onto hope
for a cure without understanding their terminal cancer condition. This section will
connect the patient’s story with their physician’s and their family member’s story about
88
what was said regarding the patient’s cancer condition and what they suspect will happen
in the future. This section will also describe the difficulty of determining which physician
had held an EOL discussion and how some providers believed that it was too soon to
begin talking about the possibility of dying until patients entered the hospital.
Understanding illness severity and holding onto hope in the treatment and the doctor
Although patients may not have had EOL discussions in the oncology clinic, the
attending physicians were certain that the patient’s illness severity had been explained to
them and that they had discussed EOL issues with someone in the medical system.
However, patients in the triads seemed to lack understanding about the severity of their
advanced cancer conditions, all of which had no cures (see Tables 9 and 10). Sixty
percent of patients said that they were certain that their cancer could be cured. Another
20% said that their cancer might have a chance for a cure if the treatment worked. Only
20% of the patients said they understood that there was no cure for their cancer.
Although many patients talked about their cancer as being a serious medical condition,
there was a strong belief that with the doctor’s help, God’s help, and treatment, their
cancer could be cured. Those who believed in a cure said things such as the following:
I will get better. That is my thought…It can be cured. Well there are many good
doctors here. I like it here because there are very good doctors…If he can’t, he
sends me with another doctor, higher than him. (Subject 6, Roberta, recurrent
ovarian cancer, stage IV with metastases to the abdomen)
Well, the doctors tell me, they give me good results. And also, well sometimes
they also would like to cure me faster, but everything is slow…Well, the cancer is
a very dangerous illness…Well it is dangerous because of the area where it is.
But the doctor says that they are going to cure it. Firstly, God. Yeah….[The
doctor] hasn’t told me another thing aside from that what he can cure and what
can affect me. But they haven’t told me another thing. They haven’t told me
something too negative. They have told me everything is for my health…It is
reducing [the cancer]. (Subject 8, Reyes, head and neck cancer, stage IV with
metastases to the surrounding tissues)
89
It’s aggressive…but if the chemo does its job, it will, it will cure, it will go away.
(Subject 10, Armando, recurrent rectal cancer, stage IV with lung and bone
metastases)
90
TABLE 9. End-of-Life Discussions for Patients
Name Talked EOL Discuss Cure Thoughts & Concerns
1 Blanca
Doctor
Family
Told she has 6 months to live & Yes, I have talked with
[family] and well they tell me that not to worry No cure
My greatest fear is leaving my family...I just have a
young one that’s eighteen years old…She is the one
that cries the most...When I have the pain so strong I
don’t want anything, I want to die.
2 Alma Family
[Talked with your Aunt?] Yeah, like I told you, I just feel
scared ‘cause I don’t want to leave my kids. I hope to God (crying)
I feel scared…I don't want to leave my
children...[Prefer to know?] Yeah…But usually when I
come they tell me, “Well, it’s okay,” or, “Everything
looks fine,”[Family to know?] No, I prefer myself.
3 Helena None Oh no, no…I don’t want to.
Everything is going to
come out fine...The doctor
says the treatment is
working.
[Prefer to know everything?] Well, I already know
it….My daughter talks with the doctor...I don’t like to
talk about that, I like to talk instead about that I can,
that everything is fine.
4 Lorena Family
My daughter…the older one, I told her that if one day I
pass away, she needs to take care of her brother and to
try to live well.
No, They already told me
that I could not be cured
I get desperate I wouldn’t even want to talk…
sometimes I say well maybe nobody understands
what I’m feeling...I don’t know if I will be saved or
get worse. That’s what concerns me. [Prefer to
know?] Whatever they are going to tell them they
can tell me. [Family?] Well yes, but sometimes no,
they don’t go with me.
5 Maria Family
No, I just tell my daughters that if that happens, to take
care of their father. [giggles] Yeah. This is over.
I always thought that I will be fine. I have much
faith...I don’t have concerns with the future, no. I
lived this day thanks to God. Tomorrow, who knows.
..[Would you prefer to know?] Yes. [What about
family?] I tell them that everything is fine…No, [not
to know everything, only] what I tell them… I always
go in alone and always don’t, I don’t like them going
in with me.
6 Roberta None
[Have you talked about this with your family?] No,
nobody. I haven’t talked…No, I never talk about death.
I will get better...It can be
cured.
We must have in our mind that we are not going to
die, always live...When they are going to give me the
diagnosis…[my son] speaks with the doctor… I’m
happy that he speaks with the doctor. [Would you
prefer to know everything?] I want to know about
my illness, yes.
91
TABLE 9: Continued
Name Talked EOL Discuss Cure Thoughts & Concerns
7 Mario Family
Only with my wife, she’s the only one that I talk to
about everything.
Yes, of course. I think so.
[can be cured]
There are many advanced things that have helped a
lot…We're gonna fight until we can...[Would you
prefer to know?] I prefer that they tell me directly,
yes…[And] I want [my family] to also be informed of
everything.
8 Reyes Family
I always talk with friends, with family, we know death is
a step in life.
Doctor says that they are
going to cure it. [But]
firstly, God.
Now I have more desire to battle, live every day, eat
better…like that not, not, not agitate myself. [But]
We have a funeral home paid and everything. You
don’t know when you are going to die...I do want to
know. [But] If the doctor sees that things are too
serious, he needs to call my sister…for a decision.
9 Javier None
[Any thoughts about death?] No…Whatever God
wants. [Talked with anyone?] No
God willing, I won’t have
anything. That I’ll get
better. Won’t need
treatment anymore.
I’m not afraid of death. I would like them to tell me
what will happen to me, if I’m going to die or if I’m
going to live. [Thoughts about death?] Just my
family, that they’ll be alone. They will suffer, only
[pause] They will miss me.
10
Armand
o Doctor
Doctors said, "You've got a year to live." [Any thoughts
about dying at all?] No. [Ever talked with anyone
about that?] No. [Any prepare for, concerns about it?]
Not really. [Would you wanna talk to if you needed
to?] No. Well I, it doesn’t help, it doesn’t to those
terms it, they are not in my thinking.
Doctor says it’s
aggressive…but if the
chemo does its job…it will
cure, it will go away.
I prefer not to know everything and just follow the,
the treatment...I say, “I’m not sick, I just come for
checkup,” you know. You know, I’m not sick, I don’t
got, I don’t have no cancer.
Talked refers to with whom patient had EOL discussion
EOL Discussion refers to what was discussed in EOL discussion or reference to the possibility of dying
Cure refers to beliefs about a cure for their cancer
92
TABLE 10. End-of-Life Discussions for Providers
Name Talked EOL Discuss Cure Thoughts & Concerns
1
Nurse
Nancy
Patient
Doctor
Family
[Doctors have] informed her that she would probably
not live for over six months…because it was very late
stage cancer and she was very, very sick.
She knows that whatever
we offer her its probably
not gonna help her Her concern is pain
2
Nurse
Carmen
Patient
Doctor
[Has anybody talked with her?] I’m sure the doctors
have. I have not.
[Can it be cured?] At one
point, initially, it could have
been.
[Would she prefer not to know?] With her, I think
she’d rather not know. [Does she understand?] It’s
hard to say with her because there, there are days
where she’s very emotional.
3
Dr.
Young
Family
[What about family?] [What did you tell her?] It’s not
curable, I mean, and she’s eventually gonna die from
breast cancer. I told the daughter that.
Unclear if she knows. [A
doctor talked] with the
family…while she was in
the hospital, ‘cause at that
time she was really sick.
[Has she talked to you about her concerns?] No, not
really. [Does she want to know?] Some people do
some people don’t. Some people just wanna continue
with treatment as much as possible. [Where does she
fit?] She wishes to continue treatment.
4
Dr.
Arafat
None
[Has anyone ever talked with her about the possibility
of dying?] Not to me. She was seen by other doctors
before I came over so I’m not sure if she did to them, but
not with me. [How about family members?]I never met
any family, except her kids that was there last time.
They are very young to be involved in any decision
making there, with any of the information.
I assume she does
[understand], but I’m not
very sure.
[Would she prefer to know?] My experience with
cancer patients, some of them do, some of them don’t.
And part of my policy is that I answer when they ask
me questions. If they don’t ask I don’t go, won’t give a
lot of information.
5
Dr.
Wood
None
I have not personally had a conversation with her
regarding her severity of her illness. Right now she has a
good performance status and she’s responding to
chemotherapy…I told her the chemo’s working.
I’m not…I would not tell
her at this point that you
know, “you should get your
affairs in order” because
she’s responding to chemo.
[What about family?] The last time I saw her, she may
have had family that were sitting outside but she
didn’t have anybody in the room.
6
Dr.
Wood
None
I don’t remember it off the top of my head. Unclear
[Does she understand what type of cancer she has?]I
don’t know. That’s a good question. I don’t know if
she understands what type of cancer she has, ‘cause I
inherited her as an ovarian cancer. I never asked her
again, “Do you know that you have ovarian cancer?”
93
TABLE 10. Continued
Name Talked EOL Discuss Cure Thoughts & Concerns
7
Dr.
Herman
Doctor
Family
I explained him again that his tumor has a very bad
prognosis which he said he didn’t know about, but then
daughter actually confirmed that this has been explained
to him many times. So, this going to prove what I just
told you before that of course like they somehow don't
retain the information. They don't want to know too
much.
He knows that of course
his disease cannot be
cured.
[Any concern about the possibility of dying?]Well, it
was not brought up yesterday, but it looks like the
daughter knows that he is going to die from his
disease. [His concerns?] I don’t think we know them…I
don’t think that this kind of patient…or it’s like not, he
didn’t express them yesterday…’cause if the patient
wanted to ask me questions…to discuss the situation, I
would have been more than happy to give him all the
time that he needs.
8
Dr.
Arafat
None
[Talked about the possibility of dying?] We have not
talked about that…I don’t think he’s there yet...It’s too
early to talk about that in his case, especially after he
responded to our treatment. [What about family?] I met
the sister first day, six months ago, and that was it. He's
alone since then.
He had an excellent
response to
treatment…[But] It’s most
likely…it’s probably not
curable.
I'm not sure exactly how much [he knows or wants to
know]…He would have asked. I don’t think so because
otherwise he would have asked.
9
Dr.
Wong
Doctor
[Have you talked about his condition getting worse?] I
did not specifically talk to him about it. [Any other
physician?] I can’t speak on behalf of the physicians.
[Any thoughts about dying?] Well again I, these are
questions that are, should be geared to him…[But] it
sounds like maybe the primary team was concerned
[about hospice] when he was hospitalized.
[What about cure?] I defer
this answer I’m not the
oncologist.
[Would he prefer to know?] Honestly. I don’t know if I
think he doesn’t prefer to know, but you know, that’s
something again I would just ask him directly.[What
about his wife?] I don’t know how the family
dynamic…I mean she may be more invested in his
health care than he is, but she was definitely the more
outspoken of the two.
10
Dr.
Ramirez
None
I would make sure that he understands the difference
between those two [cure versus palliative] because I
don’t think that he really does. But at the same time I
didn’t feel that it was appropriate to talk about the
difference when I had only talked with him for ten
minutes.
The chemo we’re giving
him now is not for a cure,
it’s just for palliation.
[Does he prefer to know?] I don’t know ‘cause it’s
hard to say what he does know and doesn’t know you
know.
94
Did patients and physicians have EOL discussions?
As noted in Chapter 3, patients in this study were recruited specifically to include
seriously ill, advanced cancer patients who, for the most part, had recurrent and/or
advanced metastatic diseases that had gone beyond the original tumor site. The premise
for interviewing this specific population was the likelihood that an EOL discussion had
occurred because the cancer was so advanced and the prognosis was poor. In fact, for the
patient to be eligible, the patient’s physician had to agree that the patient had an advanced
cancer with poor prognosis and the patient’s physician or another physician had engaged
in an EOL discussion with the patient about the severity of their illness, informing the
patient of the serious nature of their cancer condition. The caveat that the physician
could indicate that another physician had held an EOL conversation resulted in
interesting findings.
It is important to note that all of the physicians seeing patients in the oncology
clinic were training physicians (i.e., fellows or residents) who presented each patient’s
case to an attending physician, who, in turn, would review the patient’s case in detail.
During recruitment for this phase, training physicians were asked whether a patient met
criteria and whether an EOL discussion had occurred. In response to the questions, most
of the training physicians said that “someone must have told the patient” because the
patient’s illness was already so severe. Because these answers lacked certainty, the
questions were then readdressed with the attending physician in order to clarify whether
an EOL discussion had occurred before enrollment. The attending physician confirmed
that an EOL conversation had occurred: 1) when a patient entered the oncology clinic for
the first time with late stage cancer that had a very poor prognosis; 2) when the patient’s
95
cancer had returned with metastasis, at which time a physician had held a discussion
about treatment options that included a discussion about EOL care; or 3) when a patient
was seen by the palliative care team during a hospitalization.
Despite the confirmation by the attending physicians, determination of the exact
person who had held an EOL discussion with the patient continued to be problematic.
Patient-provider EOL discussions did not seem to happen in the oncology clinic:
physicians in training clearly deferred these discussions to other providers. For example,
the physician who saw Armando (subject 10, recurrent rectal cancer, stage IV with lung
and bone metastases) remarked that, as a first-year resident, he was uncomfortable with
disclosing diagnostic information to the patient regarding their poor cancer prognosis.
Instead, he waited until the patient was hospitalized and then deferred the responsibility
for holding an EOL conversation to the palliative care team:
I’m a, an internal medicine intern, not an oncologist by any means… I’m an intern
which means first year resident…. I have little, very little experience with patients
with, with, with cancer to be honest... I’ve only been an MD for eight months
now, so I only had direct responsibility for that so, so that goes into you know
what I think about in terms of prognosis for these patients and versus somebody
who’s been a fellow or an attending in, in oncology where they’ve had you know
years and years and years of experience….To be honest, people who I’ve, who
I’ve had the initial conversation with have always been inpatients and, and I’ve
always, whenever I’ve had somebody with poor prognosis, I always just call
palliative care. And then, I really leave it to palliative care who are the
doctors…They’re very good and they’re very good at consulting the appropriate
services and leaving appropriate recommendations for me.
Providers in the first phase said that the most appropriate time to have an EOL
discussion was early in the disease course or when the disease was stabilized, and when
the patient was being seen in the clinic (not the emergency room). While this early
engagement in EOL discussions might have been ideal, it was not occurring, according to
providers in the triads. Instead, physicians were holding off on having these discussions
96
until the patient’s disease had advanced and/or the patient had entered the hospital, at
which time palliative care physicians got involved. This is not to say that physicians
believed EOL discussions were unimportant. Instead, it suggests that physicians face a
dilemma in the timing of these discussions, because they were perceived to require
rapport, which was hard to achieve. Armando’s physician expressed this dilemma as
follows:
This is the first and only time I’ve seen this patient. So, I have no relationship
really with him. So all, all the information I’m gathering is just from notes to be
honest. I did not have that discussion with him about in terms of you know what
goal of care he would like. I, I mean I assume from talking with him and his
girlfriend that they wanted, obviously that they wanted to continue chemo. [If you
were to know this patient a little bit more and were able to develop a rapport,
what type of conversation would you have?] I would talk to him about, I mean
so, what’s it seem like, in my mind I’m thinking, okay so I’m inheriting this
patient, so the patient’s now gonna be mine and lets say like a year from now,
something like that if he’s alive or, and that I feel confident because he’s been
seen by oncology since 2004. So if I just inherited him now and I develop a
rapport with him in the future, what my conversations would be, I first wanna
make sure that he understands that the chemo we’re giving him now is not for a
cure, it’s just for palliation. And I would make sure that he understands the
difference between those two because I don’t think that he really does
[understand]. But at the same time I didn’t feel that it was appropriate to talk
about the difference when I was, when I only talked with him for ten minutes.
Armando’s case study: Prefers not to know the severity of his illness
Armando (subject 10) had been dealing with colon cancer for the past six years
that had progressed into the lungs and bones. He was hospitalized a few months before
this interview for back surgery because his cancer had advanced. A tumor had grown and
was pressing on his spine, which made him unable to walk. During his hospitalization, it
did not appear that he had a conversation with the palliative care team. In fact, Armando
said that no one had mentioned palliative or hospice care to him before and that he did
not know what that meant. However, his surgeon, when he spoke to Armando about the
97
possibility of removing the tumor, had an EOL discussion and talked to him about the last
stage of his life. During that discussion, Armando understood that his cancer was
aggressive and that he needed to ask his oncologist how long he had to live:
[How serious is your cancer? What did the doctor say?] Well the doctor says
it’s, it’s, it’s aggressive. It’s aggressive, but if the chemo…does its job, it will
cure, it will go away. [Which doctor said, told you about being aggressive?]
The doctor, not one of these doctors. The doctor is on the, as matter of fact the
doctor who, operate, operated me when I was in the hospital. She told me that
my, my cancer was aggressive. So she asked me to ask my doctor here [in the
oncology clinic] to see, to find out how long I was gonna live. And, the next
appointment I was here, when I came here, I asked my doctor. I said, ‘I need to
ask you a few questions. The other doctor asked me to, to ask you how long I had
to live. How long I’m gonna live. If there is six months, it’s not worth to, it was
not worth operating. If there is a year chance to, chance to live a year, it’s worth
it to operate.’ And then the doctor said, ‘Well, you got a year to live.’ So I went
back to the doctor and tell her, ‘I got a year to live.’ And then she said, ‘Okay,
let’s operate.’ So, that’s when she decide to operate me.
Asking his doctor about the last stage of life was frustrating and difficult for Armando.
He did not like to think about having cancer and did not want to hear bad news or talk
about dying because he wanted to focus on living and continuing the treatment course
instead:
In my experience having cancer…it’s been a little bit difficult on understanding
that I had cancer…[and] When I come here to the hospital, to the clinic, I’m
thinking I’m just coming for a checkup. I’m not thinking if I have cancer and not
try to be depressed, you know. [Would you prefer to know everything about
your cancer or would you prefer not to know?] I prefer not to know everything
and just follow the, the treatment you know…I’m not thinking about it, not really,
just…just follow the road, not think about it’s gonna get worse or it’s, it’s, like the
news I got that it was only a year to live you know. I’m not focused on that. I’m
not gonna believe, I’m gonna be out of here in a year you know.
Armando informed his mother about his cancer condition; however, they have not
been involved with supporting him, especially after his cancer diagnosis. Armando
commented when asked whether he has informed his family about his condition, he said:
“Not really, because [pauses for a short time] pretty much my family knows what’s going
98
on with me.” Armando hesitated to talk about his family, which upset him during the
interview as he started to cry when asked about his family. His girlfriend, who has been
by his side and to every appointment with him for the past two years, explained that
Since being diagnosed with cancer, Armando was estranged from his family. Armando
was silent when asked about how his family felt and how involved they were with his
care; however, his girlfriend explained that Armando’s family members were distant
because they thought his cancer was contagious:
When he told him, three appointments back, a doctor told him that supposedly he
only has one year of life. And when he told him that, he did, how do I say, he did
get depressed. More because the point in which the cancer came well we
haven’t, he hasn’t had support from his family. Like the family distanced
themselves, and like his mother also isn’t here [in the United States]. Then he did
feel like a little bad. But not anymore. He already continues his life, his routine.
Well he says he just live day to day… Well, before when they told us that he was
ill, well his family was very close, we coexisted with his family more. Now, I
feel like his family are…like wanting to say, “No, well he’s going to be
contagious, better let’s not even visit him, let’s not.” They distanced themselves
from us. He doesn’t, they don’t even know if he is getting better, if he is getting
worse. When he is hospitalized, I call them, they never have time, they’re always
busy.
In Armando’s case, he was not thinking about the possibility of dying. In
addition, Armando’s family did not want to know what has been happening with his
condition. Armando did not want to focus on EOL issues but preferred to pray that God
would handle his circumstances:
[Have you ever had any thoughts about dying at all?] No. [Ever talked with
anyone about that?] No. [Do you have any concerns, or, is there anything
that you need to prepare for?] Not really.[Anybody you would wanna talk to
if something were to happen?] No…[People] say to me to put my hands into
God. So you know, and it’s that what I’m trying to do, to be with God. So every
time I come here, I pray to God, eventually it will, it will stop you know. It will
go away so, [pauses] what else could I say.
Furthermore, if Armando were to be admitted to the hospital and unable to speak for
99
himself (e.g., be put on life-support), his girlfriend would have limited ability to make
EOL healthcare decisions for him. Providers spoke about cases like this where they had
difficulty with EOL discussions because no one could make decisions in the last stage of
life, especially when family members were estranged and the patient was not married or
did not have any grown children to help with EOL decision-making.
In Reyes’s case, it was too soon to have an EOL discussion: “We have more plans.”
Although an attending physician confirmed that some physician had already
spoken with Reyes (subject 8 with metastatic head and neck cancer) about the severity of
his illness, it was unclear who this physician was. The first year fellow who saw Reyes,
believed that it was too soon to talk with the patient about EOL issues because he was
focused on managing the medical treatment and he felt that having an EOL conversation
could negatively influence Reyes’s treatment compliance:
I don’t talk about it right now [because]…[pauses] It’s not an…I don’t think it’s
an issue…And I don’t think he should stress about it from now…It’s too early to
talk about “that” in his case, especially after he responded to our treatment. It’s
definitely something I would have done if he did not respond and the tumor kept
growing…it’s not time now to talk about end of life. [In terms of advanced
planning], I think in him it would be counterproductive to talk about that.
There’s…it’s a sense you have as a physician of when is the best time to do it.
And for him, since he’s responding, we have more plans. We’re planning
radiation. I do not feel the need to discuss with him the end of life plans from
now. And when I start feeling that we’re not going anywhere, then I will start
getting him ready… And when you’re going in a good way, patients, it’s good to
keep hope, to keep the optimism of the patient. And we always have time later on
when your treatment stops working.
In the past, Reyes had experienced problems when he first sought help for his
symptoms, which was in part due to limited patient-physician communication. Although
Reyes had cancer symptoms for several years, since 2007, he experienced delays in
getting diagnosed with cancer, and then after he found out, he discontinued his treatment
100
because he did not want to return to the clinic where they diagnosed him with cancer.
Reyes said that he waited a very long time before he came to the LAC+USC oncology
clinic because, “I got scared. I let time pass and my, my tumor grew.” In fact, his tumor
was so large when he came to the LAC+USC clinic that the oncologists thought that he
would die from his cancer in a very short time.
His sister said that he first went to “local clinic” where he lived. He was given
pain medications because he was not explicit about his symptoms when he spoke to the
physicians, “Because he didn’t describe for them all the symptoms he was feeling.”
Then, Reyes was hospitalized in 2007 at another hospital where, as his sister said that the
physician:
…took his tonsils out…and did a biopsy and they said he had cancer…And he
still, he came out of the hospital and he said, ‘Oh, I’m gonna be okay. They gave
me medicine.’ And after they removed the tonsils he thought he’s gonna be okay.
At that time, Reyes did not understand the severity of his diagnosis and did not continue
with treatment because, as his sister said, “He didn’t want to go back to the hospital, even
after they removed the tonsils and they give the diagnosis he has cancer, still he didn’t
want to go to the hospital, until last year…Christmas of 2008”, and even then he did not
follow the treatment course. Reyes said that he finally went to the LAC+USC oncology
clinic, “On June 25 I came here, in 2009. And there they helped me. They started to do
studies. And they started to give me chemo…because they wanted to cure me.” Reyes
finally understood that treatment was important and he began to focus on maintaining the
course of treatment in order to cure his cancer. He believed that his cancer could be
cured, and he was willing to continue treatment because:
Many things have been improving, yes. That’s why I don’t miss appointments
with the doctor, nor with the hospital… My concern is that I want to get better. I
101
want to be cured. That is my greatest concern. And, for example, now I see that
I’m getting better little by little…I know that I’m going forward with the help of
God, I’m going forward, the doctors and the hospital.
According to Reyes, his physician told him that the treatment course was going well:
[In the last meeting with your doctor what, what, what did you talk
about?]Oh, right now, we talked about how I am and I tell you that I’m fine, I
feel fine. And that next week I’m going to come with him to see when we start
the radiation and a little chemo. [And exactly what has the doctor told you
about your illness?] Well, the doctors tell me, they give me good results. And
also, well sometimes they also would like to cure me faster, but everything is slow
…He has said that, well that everything is good. That we are going well. Yes…I
like it. I’m happy.
It is important to remember that Reyes’s physician was not thinking that his
cancer could be cured; in fact, he believed that Reyes would die shortly after coming into
LAC+USC clinic. In this case, Reyes’s physician had explained the severity of his
illness when he first came to the oncology clinic. However, EOL discussions stopped
when his cancer began to respond to treatment:
I’m sure when I saw him I told him…we were pretty much hopeless when I saw
him first. And we didn’t, we did not expect such a good outcome with treatment.
We told him it was very advanced probably going to kill him. But then he
responded great to chemotherapy and he’s very happy with the results right now.
At that time, discussions about EOL issues ceased because his physician thought such a
discussion could negatively influence Reyes’s treatment compliance. However,
important information about Reyes’s preferences for EOL care seemed to have become
lost because now he and his physicians were focused on continuing the treatment course
without clarifying his wishes for EOL care in advance.
In the interview, Reyes actually talked about his preferences for EOL care. When
asked, “Do you want to know everything about your illness?” Reyes, said, “Yes”, he
would prefer to know whether his illness was getting worse. He said that in the event his
102
illness worsened, he would want his sister make decisions for him, “My sister is the one
that has all the ability for a decision. If the doctor sees that things are too serious, he
needs to call my sister.” It was important that Reyes had spoken with his sister about the
possibility of his illness getting worse; however, his physicians were unaware of his
preferences. His sister also mentioned that Reyes would like to plan to return to Mexico
to see his family for the last time if his cancer worsened:
If things get bad, and if he’s getting in the point he’s gonna get like his terminal
days, he wants to go back [to Mexico]. Yeah, he for sure he wants to go
back…and live in peace over there. We already told him if something happens
we want to support him over there. You know like we stay here and keep
working and send him at least a little money…We’re going to support him.
That’s the promise we made to him.
This is the type of information about the patient’s wishes for the last stage of life
that could be discussed earlier in the treatment course and documented in the chart or in
an advance directive if the physician were asking questions about the EOL. Important
information about Reyes was not documented or discussed by the providers in the
oncology clinic. Only his sister knew that he wanted to return to Mexico when the time
came. There was a possibility, while maintaining the course of treatment, Reyes could at
some point become too sick to travel back home. Reyes’s physician was waiting to hold
an EOL advanced planning discussion until his treatment stopped working and his cancer
worsened:
[What about providing him with information regarding advanced planning?]
I agree. It’s all about knowing the patient and the disease. It comes with the
experience. You need to know what patients to talk about and when. As I told
you like for him if, when he starts failing our treatment, then we will know maybe
he will need to start talking to him of advance directives. For now I think it’s
very early. [But, what about if he has a medical crisis, is it the right time to do
this planning?] It will not happen as a crisis when he progresses. Cancer is a
slow growing disease. When it starts growing again it will take many months,
maybe years, to kill him. So it’s not a crisis, it’s not waiting to the last second.
103
Another reason given for not discussing EOL issues with Reyes was because, as
his physician said, holding an EOL discussion for advanced planning was “difficult” for
physicians because “We as doctors are trained to fight for life. We don’t like to talk
about death.”
Roberta’s case: more gaps in EOL communication
As noted in the provider interviews (Chapter 5), treatment failure and recurrence
was identified as an ideal time to hold an EOL discussion; however, physicians in the
triads did not appear to be holding EOL discussions with their patients at this time.
Although the attending physician in the oncology clinic confirmed that a physician had
informed Roberta (subject 6) about the severity of her illness, her physician (a first year
fellow) was not certain if she had addressed these issues with Roberta herself:
Usually, for recurrences I’ll always give them an option…do they not want any
further treatment…because I feel they should always have that option and I don’t
want them to think that if I don’t give them that option…that they always have to
have chemo. And that’s not necessarily the case. I always…I explain to them,
“You can tell me that you’re tired of this. You don’t want any more treatment.
You just wanna spend time with your family and you don’t wanna any more
chemo, that’s actually fine.” [And how about Roberta, what does she say about
that?]. I didn’t, I didn’t, when I…when I started treating her she was being
treated for a recurrence and she was very stable with her disease, so I never
addressed…like that never came up…[Does she understand what type of
cancer she has?] I, I don’t know. That’s a good question. I don’t know if she
understands what type of cancer she has, ‘cause I, I inherited her as an ovarian
cancer. I never asked her again, ‘Do you know that you have ovarian cancer?’
Roberta has had ovarian cancer off and on for the past 24 years. Her cancer had
returned and progressed into the rectum and the colon which had made her cancer
inoperable. Roberta’s physician said in her interview that she explained to Roberta that
she was not going to have an operation because of the risks of surgery and that had she
given her information about the treatment plan:
104
And the plan was, because she already had bowel dissections before, not to
operate because it would be more risk than benefit and at that point since she
wasn’t symptomatic. And so we…I remember explaining that to her when I first
saw her, that the decision is to continue the chemotherapy, and the chemo seems
to be holding her disease steady.
Roberta had a different and incongruous understanding about her treatment course and
the severity of her illness. She said that her physician did not talk to her directly because
she had explained things to her son in English, who then had translated the information
for her. She understood that she was waiting for her cancer treatment to shrink the tumor
so that she could have the surgery to remove her ovarian cancer. The chemotherapy was
supposed to:
…make the tumor smaller...then they will operate me…Right now they can’t
operate because in the [previous] operation that they did for the ovary, they
removed guts, they cut many things, and right now, that’s why right now they
can’t operate, until it gets small.
Roberta did not understand that her cancer was inoperable. However, she was focused on
following the course of treatment. Her physician was also focused on continuing the
course of treatment and had not held an EOL discussion because she said that she had
“inherited her” when her cancer had recurred; someone else had explained the severity of
her cancer condition, and they were currently focused on treatment, which had stabilized
her cancer: “I remember her because she’s one of the first people I started…inherited,
and she was on chemotherapy before I started seeing her. So, all we did was continue
whatever treatment plan she was already started.” While Roberta was satisfied with her
physicians, she had a misconception about her cancer that seemed to stem from a gap in
patient-physician communication. She did not think that her cancer was serious and
believed that it could be cured:
105
I will get better. That is my thought…It can be cured, well there are many good
doctors here. I like it here because there are very good doctors…[How serious is
your illness?] I don’t think it’s very serious. I don’t think so because if it were
very serious…the doctor would have told me already, “I can’t do anything else for
you anymore.”
Maria’s case also demonstrates gaps in EOL communication
As identified in previous case examples, communication gaps between patients
and their physicians can exist prior to developing cancer. Just like Reyes, Maria (subject
5) experienced patient-provider interactions that delayed her cancer diagnosis. For a
period of four months Maria (subject 5) "went to the doctor in March, April, June, and
July" because she was having symptoms of nausea with her stomach feeling "a bit
inflamed, nothing else." During these months of seeking a solution for her pain and
before being diagnosed with cancer, she said that the doctors could not understand what
was causing her symptoms. "They gave me medicine and a doctor said that I had an
ulcer in my stomach, and another said that I had...like gastritis.” The doctors did not
seem to know what was happening with her which led her to seek further help. She said,
"Then, I asked for another doctor. They finally did an ultrasound and the doctor said that
I had a cyst in the ovaries but that there was no problem…that if it grew, they would
operate me." This was back in April 2007.
Maria tried to stay calm and focus on what her physician had said to her, “That it
was a cyst, that there was no problem. But like I wasn't fine, I didn't feel fine. Then I
started to feel dizziness and I returned to the doctor and asked for another consultation
with a doctor." She finally found a doctor that examined her and even without doing any
tests he said, “You have cancer.” Although Maria knew something was wrong with her
body and the doctors had not been able to find the problem earlier, she put her trust in
106
God and her doctors to do what is best for her. She was not angry about the delays to
finding her cancer. Instead, she was grateful for her cancer treatment:
I did not get scared and say, ‘oh I’m going to die,’ I was not afraid of anything. I
just trusted in God first right, and in the doctor. The doctor inspired much
confidence in me…I told the doctor, ‘do what you have to do, I’m here’…I have
much faith… And I’m grateful to God…and with all of the hospital personnel
because they have treated me very well.
Having an EOL discussion was unlikely because they continued to focus on
treatment without talking about the possibility of dying. Providers said that although
some advanced cancers could be stabilized and controlled for awhile with treatment,
when cancer was recurrent and advanced, it was much more difficult to treat and control.
Instead of beginning an EOL discussion, the focus was on maintaining the course of
treatment. Maria’s physician had not held a discussion about the severity of her ovarian
cancer that had already metastasized to her rectum because she was responding to the
treatment: “Ovarian cancer is usually a terminal condition, yes…[but] I have not
personally had a conversation with her regarding her severity of her illness.”
At Maria’s recent medical appointment in January 2010 the doctors “did another
CT scan…and the doctor told me, ‘Everything is fine.’ But I’m in chemotherapy
treatment, I don’t know how many more, but everything is fine…I’m almost done with
chemotherapy. And I’m fine…Yeah. This is over.” Despite a recurrence of her ovarian
cancer in June 2009 which showed progression of her tumor extending into her colon,
Maria believed that her cancer has been cured. She said,
The doctor says about the cancer treatment…he’s going to give me more
[chemo]…to be sure that everything is fine when they stop the treatment…The
doctor says that…he says that everything is fine right…I had a study and
everything had a very good result, the whole study they did. And the doctors says
that everything, everything, everything is marching well. The tumor disappeared
and that is…and well I believe it because I feel the difference…I feel fine.
107
Maria’s husband was also happy about the course of treatment and said that her cancer
had been cured:
Well right now we are fine. I’m happy, so is too, well we are positive. Well all
the, the treatment that they did, and then we know that, the cancer disappeared
already but yes, yes we got a good result.
The gap in patient-physician communication was persistent because they were not
talking about the possibility of dying, nor having EOL discussions. They were focused
on continuing the treatment course. Maria had a terminal cancer condition that would
ultimately end her life; however, Maria’s physician could not explain or understand why
she had thought her cancer had disappeared:
[Would you consider this person to have a terminal condition?] Ovarian
cancer is usually a terminal condition, yes. [Have you had a conversation with
her regarding the severity of her illness?] No, I have not personally had a
conversation with her regarding her severity of her illness. Right now she has a
good performance status and she’s responding to chemotherapy. So at this point
right now she’s doing well… So I’m not…you know, I would not tell her at this
point that you know, “You should get your affairs in order” because she’s
responding to chemo. [But, she seemed to have a misunderstanding because
she said that the cancer had disappeared] Yeah, I don’t know why she would
say that because on my last note I still felt the mass and her CT scan still showed
a mass in her colon. So I don’t know where she got that idea from…I saw her in
the end of January and she still had a pelvic mass. So I did not tell her that she
has no evidence of cancer ‘cause we’re still continuing chemotherapy. I told her
the chemo’s working, that’s why we would continue it, but I never told her that
she has no evidence of cancer…because I wrote in my note, “pelvic mass.”
Helena’s case: EOL discussions get delayed until times of crisis
EOL discussions were often delayed until some medical event sent a patient into
the hospital. In Helena’s case (subject 3), her physician (a third year fellow) said that,
“There are options, even though her cancer’s bad. [But] once you have…cancer in your
brain, then generally the prognosis is worse.” Although an attending physician had
confirmed that a physician had discussed the severity of her illness, Helena’s physician
108
was unclear about who had held an EOL discussion with her. He said that he deferred the
discussion to another physician on the palliative care team.
Helena had recurrent, stage IV breast cancer, with brain metastases that had
required hospitalization for palliative brain surgery to remove tumors pressing on her
brain. Helena’s physician focused on continuing the course of treatment though he knew
that she would die soon from her disease. The treatment was,
…controlling the cancer outside the brain, but it’s the brain that’s the problem at
this point… the treatment that she’s getting is affecting the rest of her body, it’s
controlling everything…but as far as the brain, the cancer in the brain, it’s not
really helping…The hormone therapy does seem to be working to some
extent…But as far as the breast cancer in the brain, like I said before…it doesn’t
seem to be working, or it’s not helping any way. So that’s why we need to switch
her therapy a little bit. [What do you suspect is gonna happen for her?] Well, I
mean she’s gonna die of the cancer eventually. It’s not easy to treat, once breast
cancer’s gone to the brain it’s not easy to treat, so eventually she’s probably
gonna die from that.
When Helena (subject 3) was interviewed for the study she had recently been
hospitalized (six weeks prior to her interview) for palliative brain surgery to remove
tumors pressing on her brain. Her physician said that she needed the “surgery to remove
two of the lesions because there was a pending brain herniation which essentially she
would have died from.” When asked about whether he had talked with her about the
option of discontinuing treatment in order to transition to EOL care, her physician could
not remember a conversation that had occurred in the hospital. He was certain that some
physician had spoken with her about changing her code status to Do Not Resuscitate/Do
Not Intubate (DNR/DNI), but, he could not recall a specific conversation:
I mean, I, we’ve brought it up before. Once when she was in the hospital… I
can’t remember what we talked about when she was in the hospital, ’cause at that
point when she looked her sickest, I can’t recall the conversation off the top of my
head… The other physicians that brought up the fact that you know DNR/DNI
status, hospice care, I mean that was all brought up…with the family…while she
109
was in the hospital, cause at that time she was sick, I mean really sick…[What
was said about hospice?] Well, I mean…I can’t remember the exact
conversation, it was like you know over a month ago.
In Helena’s case, the focus had been on maintaining the course of treatment in
order to control her cancer and for this reason it appeared that EOL issues had not been
clearly addressed. Helena had a serious progression of her illness; however, her
physician had not really had an EOL discussion with her because they were continuing
the course of treatment even though, per her physician, the treatment for her brain tumors
had stopped working. Helena said her physician informed her about her illness: “That it
is getting better, that it’s, I told you that already, it’s getting better...just that the cancer
still exists…Well, I think it’s not so serious.”
Helena was under the impression that her cancer would get better and she
preferred to think about positive things, that her illness would improve. She did not want
to talk about the possibility of her illness getting worse:
[The doctor] says it’s fine, that everything is getting better…who can cure more
than the doctor? [What do you suspect is going to happen now?] That
everything is going to come out fine. [What about the possibility that your
illness worsens?] I don’t like to talk about that, I like to talk instead about that I
can, that everything is fine.
Helena’s daughter could not provide an interview because when she was contacted by
telephone shortly after the interview with her mother, she said that her mother was
hospitalized again. Obviously, Helena was not fine.
Alma’s case: Misunderstanding about the severity influenced gaps in cancer care
Alma (subject 2) also lacked understanding about the course of her cancer
treatment and experienced gaps in care partially because of some misunderstanding about
the need for treatment. Upon diagnosis, and at the beginning of treatment after
110
chemotherapy and radiation, Alma’s doctors suggested that she have surgery which, they
explained to her would involve making an artificial opening in the abdominal wall for the
waste from the bowel and urinary tract to collect outside the body into two bags. Alma
said, “They wanna put me some bags like for pee pee,” but she did not want to do this
and “told them well I had to think about it.” Then, Alma had a bad experience when she
went to the hospital for a biopsy: “They kept me…all day, all night in the hospital and
they didn’t do nothing. The doctor left. So I didn’t wanna come back again. So I just
ignored it…I just didn’t wanna come back again.” However, she continued with most of
her doctor’s treatment suggestions except for the surgical procedure, which she refused to
do.
After completing six cycles of chemotherapy and radiation, Alma said she “felt
better. I didn’t felt no pain, no nothing, no bleeding, no nothing. So I thought I was better
so I said, ‘Oh I’m just not gonna go back to the hospital [outpatient oncology clinic].’”
Another reason why Alma discontinued her treatment was because she understood that
she did not have cancer. She said that after “the last CT scan they did, [the doctor] told
me that I didn’t have cancer, that the tumor was there, but it shrunk.” To Alma, this
information meant that her illness was not serious anymore and although she heard that
the tumor had shrunk, she mainly heard that she no longer had cancer. Alma begun to
feel better and did not want to continue with treatment.
Alma’s cancer returned. Although she sought treatment from the same doctors in
the oncology clinic, she continued to have a difficult time with her treatment course and
problems with keeping appointments, which created conflict with her providers. She
111
knew that they are angry with her because she said, “I could feel it…on the face, you
could tell when somebody’s upset or something…”
…after a year I started with my headaches, a lot of headaches, I couldn’t stand it.
And I was bleeding a little so I came back and they told me that why did I stop
coming to the hospital…after a year, this past July, it came again. I was bleeding
a lot, so I, and I was having a lot of headaches. So I went to Emergency and they
told me…they sent me back in here [to the oncology clinic]. They…the doctor
like…she was angry. She said, “Why didn’t I show up to my regular
appointments?” I said, “Because I felt better,” so she said, ”They never told you
that, that your cancer was over.”
Alma said that she understood her cancer was serious because “[on the] last CT
scan that they did, they told me that my tumor was getting bigger. It’s not shrunk, it’s
getting bigger!” However, she still continued to miss appointments because of pain,
which caused her to feel anxious; and yet, she had not talked with her providers about
these issues. Alma appeared to have a hard time believing her doctors, maybe because of
the tense relationship between them. Instead she put her faith in God:
When I came… back again, I told the doctor that I was having the headaches and
she responded bad. But I didn’t say, I just didn’t say nothing because I said, ‘well
maybe it’s not her day.’ Then…she said, “Oh well, you have to check that.
Maybe you have a tumor in your head.”…I said, “Oh my God, maybe I do…but I
didn’t take it like serious ‘cause I said, ‘Well, who is she anyway? She doesn’t
know, only God knows what I have.’
Alma’s nurse was interviewed in this triad. Nurses may have a different level of
understanding than physicians about the complexity of real life issues that influence their
patients’ lives while they are dealing with an advanced cancer condition. Nurses
oftentimes develop an in depth relationship with their patients over time because of their
sustained work in the oncology clinics. Alma’s nurse had worked in the oncology clinic
for the past two years and had learned a great deal about Alma’s problems and why she
112
had not followed the treatment course. Alma had been lost to follow up off and on for the
past two years because,
She has a lot of social issues, lack of family support…And she is a single parent,
and she has two children… Well, she would just miss appointments. I know that
there was a time when she didn’t have a car so she could not…and I know that
she had other issues with her children being picked up from school. And they
didn’t, by the time they’re done here, by the time she gets chemo and if no other
underlying issues happen, it would be really late. So then she wouldn’t have
anybody to pick up her children. And I think at that point you know I guess she
got harassed by the people at school… I know there’s been a lot of instances
where…our clinic runs really late, but if she needs to pick up her kids at three
o’clock, she’s like, “I have to go, I can’t stay.” I know that really plays a big
factor into most of her decisions… But lately, what she’s been doing, the kids
have to miss school and she’ll bring them…It’s a challenge for her just to be here
sometimes.
Alma commented on her relationship with her physician and how he was angry with her
because she had not shown up for her appointments:
And she’s kind of angry because I had an appointment on the, on the fourth and I
didn’t come because I, I had a fever. And I just didn’t wanna go out of the bed.
But I’m trying my best, but sometimes I just can’t
While her nurse understood Alma’s problems with following the treatment course, she
had spoken sternly with Alma because she had not been able to follow the treatment
course. Alma was right about her providers. They were interacting with her in an angry
way for being noncompliant:
I just kind of, I give her a hard time you know, “You need to be a little bit more
compliant; you need to be here on time!” I give her a hard time about that, I go,
“Alma,” you know, “You need to be here on time,” and, “You can’t continue to
miss appointments.” She goes, “Well, you have my number,” and I’m like,
“okay, I’m gonna be calling you, so you better be here.” [Giving her a hard
time…what’s the reason to do that?] So that she kind of stays compliant….just
to encourage her. Kind of to be her, try to be kind of like some support. Like,
“okay,” you know, “She’s bugging me, I should do this,” you know. Just, kind of,
I guess for me to encourage her to continue and move forward with her treatment,
see, you know see how much it will help her.
113
Although Alma lacked family support, she occasionally spoke with her Aunt
about her condition. Her aunt said that Alma believed she was dying and that she had a
“tremendous depression” which affected her daily life. Her aunt said that Alma had pain,
could not sleep, and that she laid in bed a lot and did not “feel like doing anything.”
Alma did not talk with her Aunt very much about EOL issues. Just like her nurse, her
Aunt focused on encouraging Alma, praying for her to get better and to follow the
treatment course, to do what her physicians had asked her to do. It seemed no one had
spoken with Alma about her wishes for EOL care. Her aunt said, “She’s practically
alone. She never goes with anybody. [They family] don’t even ask, “What happened?
How did it go?” No. Nobody knows anything.”
Blanca’s case: The exception of where patients understand their illness severity
Blanca, was one of the only two subjects who understood that her cancer was
serious enough to end her life; and she was the only subject who could recount her EOL
discussion with her physician. On day of her interview, the first week in December 2009,
the doctor had introduced hospice care to her. In her interview, Blanca said, because of
her pain and suffering, she had begun to think about accepting hospice care. The first
thing that Blanca said in the interview was, “I have like three months that I cannot do
anything anymore…It’s three months that I cannot do things, because I started three
months ago, I have a strong pain, very strong.” When asked what she thought treatment
could do for her she said,
I do not think it will be like the treatments they have already given me, that have
not…that they have given me all the treatment but it has not helped me, always
when we finish and I go to CT Scan, the result is always that the cancer has
advanced, it’s advancing, and it keeps advancing, it is not helping me with
anything.
114
When asked what her doctors told her about the transition for continued treatment to EOL
care she said,
They explained already and if there isn’t any chemotherapy that will work, I
prefer that that the people from hospice come to my home, because I tried many
chemotherapies and treatments already, and then what I need now is pain
relief…[But] I did not respond to the doctor today because she told me that I can
talk about it with my family, my kids all, so that on Monday I can respond about
what I want to do, but for me to consult with all my family, if what I want is to
completely stop the chemotherapy or if…and if I just [pause] [go with] the
hospice so that they can try to relieve me of the pain, which is what I need most.
Four days after the interview, Blanca called me to ask about signing up for hospice care.
Even though she had a clinic appointment on that day, instead of going to the clinic, she
went to the emergency room because of her severe pain. She was hospitalized. After
experiencing three months of severe pain and discomfort, her physician finally had an
EOL discussion with her; and she enrolled in hospice care.
A few months later, I ran into Blanca’s nurse who had also participated in this
study, and the nurse stated that Blanca had enrolled in hospice care and that she had
passed away within ten weeks after the interview, in early February 2010.
Mario’s case: End of life discussions could start early
On the day I interviewed Mario (subject 7) in the clinic, I asked his physician
about the severity of his cancer. Mario had a terminal cancer with a very poor prognosis
but he could not say how long Mario had to live. When asked if he could speculate on
his length of survival, he said, “I think about 3 months, definitely less than 6 months, or a
year.” Mario has had a hard time walking. Since the surgery which removed some of the
tumor, he was left with partial paralysis on the left side and since then he has regained
some of his functioning. His physical impairment was noticeable. He has had difficulty
walking which made him dependent on a walker to ambulate, and his hands seemed to
115
shake somewhat when he talked, “I became [like] a child again. I had to learn to do
many things again. I still haven’t accomplished it, but we’re getting there.”
Mario was shocked about his cancer diagnosis because it was so sudden, “Let’s
say it was shocking…one is accustomed to going from one place to another and in a
moment, well it was cut off…my youth went right there.” On the day that he was
hospitalized, his wife said that he fainted and was taken to the hospital where they found
the tumor and performed brain surgery. Mario’s wife had made all the decisions for him
during his hospitalization because he lost consciousness:
When we went he was already in an advanced stage because he was no longer
conscious. When we arrived at the hospital he lost consciousness and could not,
he didn’t know what was happening because it was in his head where he has the
tumor…They hospitalized him there in emergency.
Mario knew that his cancer was serious, “Yes, it’s serious, it’s very
aggressive….Almost since the first exams they did…more or less that’s what they
wanted to tell me but no, they didn’t say it like that, openly. [I] prefer that they tell me
directly, yes…[to share] the ideas or to think what one needs to do…mentally, I’m
preparing myself for what will come.” He was concerned about his treatment course and
worried “that things don’t get complicated.” It would be better for him to know what was
happening to him “…if in case that I was going to die, no, for the doctor not to hide that
from me. [Say] ‘You have such days left or such time more or less…directly.’”
However, for now, Mario said, the doctor had explained to him that treatment was
working, “Well…that until now it’s working fine…we hope it will continue like that.”
Mario’s physician said that his cancer was not curable and that all of his treatment
was palliative:
116
A glioblastoma is one of the most aggressive brain tumors that exist and it has an
overall poor prognosis, despite whatever you can offer the patient. So, it's not a
curable cancer, basically… We cannot cure this cancer with the medical
knowledge that we have at this point. So from the beginning everything that you
do is palliative. There is no cure for this cancer.
However, his physician had not thought that Mario understood the severity of his cancer,
“I don’t think that he has complete insight on this. I’m not sure if this is because of his
personality, his level of education, or because of the nervous impairment the following
the surgery and the radiation, and chemotherapy.” Just like many other patients in this
study, the physician was following the course of treatment without engaging in an EOL
discussion: “We’re just treating him as it was decided, [to] continue the chemotherapy as
was planned before.”
Mario wondered whether there would be any more surgery. He asked his doctor
about this,
I make the question that if they were going to…maybe another surgery was
possible. But he told me that until now, for the moment, how it is going…it
doesn’t seem like it…that doctor told me that it seems that it’s controlled already
and for the moment surgery, no. But there is always still the possibility.
Mario’s response demonstrated that the doctor had talked with him about the likelihood
of more surgery but that he had not given Mario a straight answer about it, which left him
questioning whether it will be needed or not. The response that treatment was going fine
for now is a common one.
Most of the patients in this study reported that the doctor told them everything
was fine for now, that the treatment was continuing to work. Several oncologists said
that the cancer was stable for now. And the only time they would begin a new
conversation or readdress the issue of the possibility of dying would be if the patient
began to have increased symptoms of the cancer progression like worsening diarrhea,
117
vomiting, dizziness, or if the treatment stopped working altogether without any other
available treatment options. Mario preferred to fight his cancer; however, he appeared to
have a misunderstanding about the possibility of that his cancer could be cured:
Yes, of course. I think so. There are many advanced things that have helped a
lot…I always have the idea that I’m going to get better. That won’t be taken away
from me until they tell me, ‘no more’…I’m not going to stop [fighting]” because
“the other [alternative] is that, the most possible is that I’ll die…I don’t want to sit
to wait for what’s coming. Instead, I want to fight, I want to give it artillery, war
to cancer. No, I don’t want to let myself be defeated.
Part of the problem with continuing to focus on treatment without discussing EOL
issues is that patients may not share their EOL care preferences with anyone or, like
Reyes, they may only share their preferences with one person who may not be available
at a critical moment. No one would know what the patient preferred in the event that
he/she was hospitalized and unable to speak. A problem exists when a provider perceives
that patients do not want to know or have a limited ability to understand what is
happening with their medical condition. Mario’s physician said that Hispanics often
defer medical decisions to their physicians:
The Hispanic population they tend to not to want to know too much and to not to
want to take responsibilities about their own health care…like they’ll let more like
the doctor do that for them. So even if we always offer them and try to explain
them, it doesn’t look like they’re that interested in knowing too much or taking
responsibility for their decisions. They prefer their doctor to do that,
unfortunately if I may say.
Other physicians commented about how Latinos might defer medical decisions to their
physicians because they prefer to follow what the doctor recommends, instead of asking a
lot of questions. Those physicians who believed that Latinos follow the doctor said
things like:
And she does whatever we ask her to do, she doesn’t ask a lot of questions. She
just, what we recommend and do it….She’s the type of patient that does what we
118
ask her to do and goes with the flow. Not, not,..she doesn’t question a lot. Not
sure if she’s not thinking about that or she doesn’t express her fears or she’s afraid
to communicate her fears or her concerns (Physician in triad four).
I find it with the Hispanic culture [follow whatever the doctor says]…like when I
offer patients options, like I given them the diagnosis whether it’s recurrence of
their disease or whether this is their initial diagnosis…and we have multiple
options about whether giving this chemotherapy versus giving that chemotherapy
versus giving a protocol. And they basically say, “Whatever you think would be
best for me doctor” instead of some people do have like an active role in picking
their treatment. Some patients leave it up to the doctor (Physician in triad six).
For Mario, it is possible that his physician had made an assumption about him
from his cultural background. For now, they planned to follow the treatment course,
while Mario and his wife continued to think that, “his situation was not worsening but
had improved and it was stable. And that he was fine. For the moment he was fine.”
The gap in EOL communication for patients like Mario will eventually need to be
addressed, most likely in a medical crisis where the patient enters the hospital. In
addition, when physicians wait to hold EOL discussions or defer the responsibility for
beginning them earlier in the illness course, information about patients’ wishes for EOL
care gets lost.
119
CHAPTER 7: DISCUSSION
Latino cancer patients experience multiple barriers and disparities in cancer care,
including systemic barriers, socio-economic factors, and cultural beliefs and behaviors
that affect access to treatment (Shavers & Brown, 2002). These issues contribute to late-
stage cancer diagnosis among this population, and underutilization of end-of-life (EOL)
care resources such as hospice and palliative care (Givens, et al., 2010). Although some
literature suggests that barriers to EOL decision-making and advanced planning exist
across ethnic groups (Bade, et al., 1999; Morrison, et al., 1998), research in EOL
communication has not focused specifically on disadvantaged Latinos with advanced
stage cancers. Some studies have suggested that Latinos are hesitant to discuss EOL
advanced care planning (Hauser, et al., 1997). However, a thorough understanding of the
factors that hinder or support patient-provider EOL communication for underserved
Latino cancer patients has been lacking. This dissertation addresses this gap by
examining two aims: 1) to explore providers’ and low-income Latino patients’
perceptions of barriers to engaging in EOL discussions; and 2) to explore perceptions of
illness severity among triads (patient, family member, provider) to identify gaps in EOL
decision-making communication about the course of care (treatment expectations and
desired outcomes).
This chapter summarizes the findings from chapter 5 regarding providers and
chapter 6 regarding the triads. Findings are put into the context of prior research, and
recommendations are made for optimal EOL discussions. Lastly, this chapter will
address the study limitations.
120
Phase I: Provider Interviews and Observations
With regard to the aims of the study, providers (n=44) discussed their perceptions
of the barriers to engaging in EOL discussions with low-income Latino advanced cancer
patients utilizing the public sector healthcare system. As discussed in chapter 5,
providers identified their roles for initiating EOL discussions and had varying perceptions
about how to actively engage patients and their family members to talk about EOL issues.
Providers, in general, saw the need to talk with patients regarding EOL issues in order to
relieve physical, emotional, social, and spiritual suffering. Providers believed it was
important, ideally, to begin EOL discussions as soon as possible to: 1) identify
miscommunication, 2) elicit questions and concerns, 3) encourage patients to speak up
about their needs, and 4) help patients and their family members make informed
decisions about EOL care. Providers’ idealized descriptions of their roles are consistent
with the training literature that outlines patient-centered guidelines for practice in EOL
care (Betancourt, et al., 2003; Field & Cassel, 1997; Gregg & Saha, 2006; Lorenz, et al.,
2004; National Association of Social Workers, 2004; U.S. Government Accountability
Office, December 2007; von Gunten, et al., 2000).
Providers in Phase I expressed that primary care physicians should be responsible
for initiating EOL discussions and collaborating with other providers on the different
medical teams. Although it was difficult for providers to identify which primary care
physician should be responsible for initiating discussions, providers said that physicians,
generally speaking, should initiate EOL discussions as soon as possible (but not on the
first meeting with the patient) in order to build trust and develop a relationship with the
patient and understand his/her wishes for EOL care. Discussions should be held in
121
outpatient settings where patients can have time to address their beliefs about the EOL
care wishes with their physicians and make an EOL care plan for the future. While
providers in Phase I mentioned that EOL discussions were complicated by patient factors
such as late cancer diagnosis and language and education barriers, these factors did not
emerge in idealized versions of EOL discussions. Providers gave suggestions for holding
EOL discussions that emphasized the “right way” of doing things, and did not mention
the delays in EOL discussions that oncology physicians described (Phase II data), such as
purposeful delay and deferral of EOL decision-making discussions until some future,
nebulous time.
Providers in Phase I did not mention that oncologists in Phase II might defer EOL
discussions until their patients became inpatients in the hospital, most often during a
medical crisis. They were unaware that EOL discussions in the outpatient oncology
clinics were being deferred. Providers in Phase II believed that deferring EOL
discussions until a later date was best for patients because initiating EOL discussions too
soon could complicate the relationship between patients and their providers as well as
complicate the management of the treatment process. Providers in Phase I were most
concerned about how difficult it was for them to build rapport when a Latino advanced
cancer patient entered the healthcare system under times of crisis. Most physicians in
both Phases said that the first time they met a patient was not the most appropriate time to
hold an EOL discussion; in fact, some physicians said they would definitely not hold the
EOL discussion until the second meeting with a patient, no matter how warranted such a
discussion might be. They advocated for delaying EOL discussions because these
discussions were perceived to be especially challenging under dire circumstances, e.g.,
122
when patients entered the inpatient setting late in their advanced cancer condition.
Physicians considered the risks of causing harm by introducing EOL discussions too soon
in the patient-physician relationship because holding EOL discussions under such
circumstances could increase distress and anxiety for patients and their family members.
This finding is important because it helps to explain why physicians working in the
public sector health care system might delay the timing of EOL discussions.
Most physicians in the LAC+USC public sector healthcare training institution
discussed the potential for causing emotional harm by beginning EOL discussions too
soon or without good rapport with the patient. EOL care discussions were complicated
by lack of rapport as well as the gaps in communication that existed because of being a
training institution. Mostly non-training, non-physician providers (nurses, social workers,
and chaplains) talked about the gaps in communication that arose when physicians
signed-out of patient care during medical rotations. As providers noted, when physicians
in training rotated to another medical service, information about their patient’s medical
condition and decisions about EOL goals of care were often documented in the patient’s
chart; however, some discussions about EOL care were not documented (e.g.,
information about patient’s relational style or desire for talking about dying). As
discussed in chapter 5, when one group of physicians signed-off on a particular medical
service, they transferred information about their patients to the incoming group of
training physicians. At that time, rapport building started all over again with the patients
and new set of physicians. Non-training providers may or may not have had all the
information that was discussed between patients and their physicians. Social workers and
chaplains recognized a lack of continuity of care, for example, that the new group of
123
training physicians did not know what type of EOL information had been discussed or
what had been offered to patients. Not only was this a problem for providers working in
in-patient, hospital settings, but it was also a problem for patients because they were, as
one social work administrator stated, “having to continually reestablish relationships with
different doctors.”
The processes involved in transferring information during shift rotations of
training physicians are often not standardized and are handled haphazardly, resulting in
communication breakdown (Horwitz, Krumholz, Green, & Huot, 2006; Horwitz, Moin,
Krumholz, Wang, & Bradley, 2008). Such gaps in patient care communication also
influence EOL decision-making communication—a point which has not been
acknowledged in the literature, especially in the way this problem can affect underserved
populations utilizing the public sector medical system. It is important to note that
patients in training institutions who were already vulnerable prior to entering the medical
system may experience additional gaps in patient care during sign-off and transfer of
physicians. Hospitalized patients can be particularly vulnerable to the consequences of
communication failure during times of transfer, as previous research has documented
adverse affects of delayed or inefficient medical care, which can lead to uncertainty about
decisions in patient care (Arora, Johnson, Lovinger, Humphrey, & Meltzer, 2005;
Horwitz, et al., 2008).
Phase II: Triad Interviews and Observations
In most cases, for physicians in the oncology clinic, maintaining the treatment
course and talking about dying were mutually exclusive. Providers were not willing to
talk about preparing for the EOL, but they were more than willing to talk about
124
continuing to focus on treatment. Previous studies suggest that both patients and
providers do not recognize the need to engage in EOL discussions early in a patient’s
disease trajectory, and physicians routinely fail to identify those patients who might
benefit from EOL care planning in advance (ICSI - Institute for Clinical Systems
Improvement, November 2009). The cancer literature adds to these ideas about EOL
discussions, as oncologists often delay EOL discussions until times of medical crisis,
when treatment stops working or when the cancer condition and symptoms progress to an
extreme (Keating, et al., 2010). This is consistent with theory on death and dying in
terms of the context of awareness of dying that suggests people can experience mutual
pretence where the patient, provider, and/or family members prefer not to discuss the
possibility of dying and pretend as if death will never happen (Glaser & Strauss, 1965).
Gaining or maintaining control seems to be the main reason behind continuing the
treatment course and maintaining a focus on fighting cancer instead of talking about or
preparing for the possibility of dying.
A large national survey conducted with physicians who cared for advanced cancer
patients looked at factors associated with EOL discussions (Keating, et al., 2010) and
found similar beliefs to what some of the Phase II oncologists expressed about deferring
and/or delaying EOL discussions. In the Keating study, most physicians preferred not to
discuss EOL options with their terminally ill patients unless there were no other treatment
options available to offer them or until patients had an onset of severe cancer symptoms.
Physicians tended to aggressively treat metastatic diseases, which influenced the timing
and mode of EOL discussions. The same was true for oncologists in this study who
believed that they could wait until later—that they had time for EOL discussions while
125
they focused on continuing the treatment course. Some physicians believed that it was
best to delay EOL discussions and defer them to other providers; for example, some
suggested that when the patient was admitted to the hospital, he/she would encounter the
palliative care team, which would initiate an EOL discussion. Some physicians believed
that introducing the possibility of dying by holding an EOL discussion could negatively
influence the patient’s treatment regimen, with the premise that initiation of an EOL
discussion would seem like giving up and losing hope, which would make the patient
non-compliant.
This study substantiated that providers were focused on maintaining the treatment
course and their patients were holding onto the hope for an unlikely cure, which
contributed to misunderstanding about the severity of the patient’s illness. Such gaps in
understanding remained unknown to physicians because they were not talking about the
possibility of treatment failure or the likelihood of poor prognosis. Physicians said
positive things to patients about their disease course, such as, “You’re doing fine,” or,
“The treatment is working.” This could be why some patients believed that a cure for
their cancer was possible. Some patients preferred to maintain denial that anything bad
could happen to them.
Patients interviewed in Phase II seemed to embrace the notion of following the
treatment course and not focusing on dying. While some patients had spoken with their
family members about their EOL care plans, most had not. Those patients who had made
EOL care plans were not engaged in communication with their providers; therefore, the
patient’s wishes for EOL care were unknown to their providers. Simply stated, patients
and providers were not talking about the possibility of dying, even though the possibility
126
was imminent due to the advanced stage of these patients’ cancer conditions. Most of the
patients followed their physicians’ instructions about their cancer care without asking too
many questions, and they generally felt satisfied with their care. Notably, providers in
both phases reported that Latino patients were passive in decision-making and tended not
to ask questions but to follow their physician’s treatment recommendations without
pushing back or asking for clarification. This finding of Latino patients’ passivity is
consistent with some research on immigrant Latina health which described how Latinas
navigate through the Los Angeles County Hospital system by adopting a passive role in
decision-making (Derose, 2000). Latinos are sometimes reluctant to approach physicians
directly because of respeto, or respect for authority (Anderson, et al., 2002; Flores, 2000).
However, such passivity places Latino patients at risk for missing information because
they may not clarify what they did or did not hear from their physician. As a nurse in this
study pointed out, if providers are not “intuitive,” they “are not going to give the patient
the information that they need” because patients are “afraid to ask questions.”
It is important to recognize the vulnerability of such an underserved Latino
population when they are faced with late-stage cancers. These patients may have
experienced previous, negative interactions with providers. Not only have they
experienced multiple barriers to accessing care, but when they finally enter the medical
system, they are in their most vulnerable state, needing help from their physicians to
survive. Such predisposing circumstances can influence patient-provider interactions
before Latino patients get diagnosed with cancer. As one physician described, low-
income patients such as many Latinos have been “knocking on the door trying to get into
127
healthcare systems,” so it is inappropriate to ask them upon their admission to the
hospital, “How much care do you not want?”
In this study, many of the Latino patients had trouble getting diagnosed because
they lacked health insurance and/or the funds to pay for health care and had other issues
that limited their preventive care and access to services in the first place. Similar to
patients in this study, in a study by Derose (2000), Latina immigrants experienced
challenges (low literacy, language barriers, and limited formal education) and relied on
their social networks to guide them when they attempted to seek treatment. Their prior
negative experiences with the medical system influenced feelings of inadequacy and
embarrassment. Women said they felt helpless and were sometimes scolded and
discouraged from accessing care. While only one patient in this study reported being
scolded by her providers for not adhering to the appointment schedule, other patients
reported prior negative experiences which delayed their diagnosis and subsequent
treatment. Once they were finally diagnosed with cancer and began receiving treatment,
they were happy about getting treatment, they were grateful for their providers,
respectful, and glad about the medical attention they received, i.e., they were grateful the
door was opened when they knocked this time. For those disadvantaged Latino patients
who had trouble accessing treatment in the first place, it seems appropriate for physicians
to want to only focus on the treatment course.
Latino patients’ attitude of being grateful for treatment is important to consider in
the context of the health disparities that low-income Latinos experienced prior to their
cancer diagnosis (e.g., lack of access, limited insurance coverage, and language and
literacy barriers). In this study, Latino patients initially lacked health insurance prior to
128
their diagnosis, but they were provided with Medicaid-type health insurance (ORSA -
Outpatient Reduced-Cost Simplified Application Insurance) which provides medical
coverage for outpatient care as needed for people who have a net income of less than or
equal to 133 1/3% of the Federal Poverty Level. For disadvantaged Latinos in this study,
accessing the LAC+USC health care system and health insurance allowed them to finally
understand their health care problem and begin to get the treatment they needed for their
cancer condition.
However, as most providers reported in this study, Latino patients were diagnosed
very late with advanced cancers, so these cancers were more difficult to treat and had a
high likelihood of a poor outcome such as imminent death. Under these circumstances, it
would, ostensibly, be important for providers, especially physicians, to acknowledge the
vulnerability of their patients and their difficult journey into the medical system.
Physicians who continued to treat without addressing the possibility of dying may think
that they are finally providing disadvantaged Latino patients with a chance to get good
health coverage for their cancer condition—and this is, arguably, true. Physicians
focused on stabilizing their patients’ cancer. They were not ready or willing to discuss
EOL issues unless their patients were no longer responding to treatment.
Physicians in the oncology clinic were genuinely concerned about patients who
lacked insurance, especially for patients whose treatment was delayed in some way. The
extra efforts that oncologists (e.g., getting patients enrolled in ORSA insurance,
scheduling multiple tests, enrolling patients in clinical trials, educating patient about
treatment compliance) make to help their patients may seem worthless to them if their
patient has a very short time to live; therefore, oncologists fight for patients under the
129
premise that treatment is the “right thing” to do, no matter how advanced their disease,
and they avoid EOL discussions.
Providers can influence their patients when they strongly believe what they are
doing is the “right thing” for the patient. While Latino patients were clearly
disadvantaged prior to entering the medical system, their physicians in this study cared
strongly about providing them with treatment. Even when patients entered the system
with such advanced diseases, the focus was on treatment and the potential for curing the
cancer. Physicians felt pressured to do something for their advanced cancer patients, to
give them a chance at cancer survival, which mostly meant extending their patients’ lives
for some time instead of actually curing the cancer. This pressure felt by physicians to
aggressively treat their patients’ advanced cancer conditions influenced patients to see the
importance of treatment, for example, in Reyes’s case (subject 8), the patient with head
and neck cancer, stage IV with metastases to the surrounding tissues. At first when he
was diagnosed, he did not follow the treatment regimen for about two years because, as
his sister said, he lacked health insurance. Not until after he experienced a physical
decline that rendered him helpless did he begin to ask for help, and then he strictly
followed his physician’s treatment recommendations. They had helped him in the
oncology clinic to receive ORSA health insurance and they began to focus on treatment
without the patient clearly understanding the severity of his illness. These actions helped
Reyes follow the physician’s recommendations for cancer treatment. From the provider’s
perspective, following treatment was the “right thing” for Reyes; however, with this plan
in place for treatment, his providers overlooked the importance of exploring his
preferences for EOL care.
130
The limited dialogue about the severity of the illness and the physician’s
preference to delay or defer EOL discussions is what multiplies problems for Latino
patients, making them more vulnerable to accepting whatever the provider says and
possibly not being able to make informed decisions. Along with a tendency for Latino
patients to not ask questions of their physicians, they become more susceptible to
misunderstanding, which can lead to gaps in providers’ knowledge about patients’ wishes
for EOL care. While Reyes focused on an unlikely cure for his cancer and his physician
made sure to tell him that treatment was going as planned, Reyes also had EOL care plans
that were not known by his physician because they were both focusing on the treatment
course. Although Reyes had wanted to know everything about the severity of his cancer,
Reyes’s physician believed it was not time to talk about the end of life.
Consequences of the Gaps in EOL Discussions
The findings in this study demonstrate that EOL discussions were often delayed
by physicians as well as patients while they focused on continuing the treatment course
without talking about the possibility of dying. Providers identified that EOL discussions
were delayed until patients entered the hospital during a medical crisis and were not
discussed at a previous outpatient, oncology clinic appointment. Such delays impacted
patients as well as providers in the medical system because they lacked rapport with their
patients prior to the EOL discussion and such discussions were inherently difficult when
patients entered the hospital with advanced stage disease. Providers said that EOL
discussions were deferred to the palliative care team after patients entered the hospital.
Delaying the EOL discussion was the typical course of communication between patients
and their physicians, waiting until treatment stopped working and suffering was
131
intolerable. Providers in both phases indicated that instead of holding EOL discussions in
advance, EOL decision-making took place in the hospital setting when hospitalization
occurred due to an acute medical condition, at which time EOL discussions typically
involved wishes for or against life supportive treatment measures (e.g., resuscitation,
mechanical ventilation, feeding tube, antibiotics, and hemodialysis) (Quill, 2000).
Patients and providers in this study infrequently mentioned in the interviews how
pain and suffering is associated with advanced disease. For one patient in this study,
physicians continued to focus on treatment until the pain was unbearable: Blanca (subject
one) tolerated her pain for three months before her physician held an EOL discussion and
educated her about hospice care, which finally provided her access to EOL care six
weeks before she died. Some studies suggest that limitations to patient-provider
communication contribute to inadequate pain and symptom management for Latinos
(Green, Anderson, Baker, Campbell, Decker, Fillingim et al., 2003; Juarez, Ferrell, &
Borneman, 1999) and influence inadequate assessment of psychological distress, which is
more significant for Latino patients at the EOL because it appears that providers are
delaying EOL discussions.
Assessing distress is especially important for terminally ill, advanced cancer
patients because physical pain, fatigue, and psychological distress are the most common
symptoms in these patients (Portenoy, Thaler, Kornblith, Lepore, Friedlander-Klar, Coyle
et al., 1994). It is important to be aware that holding EOL discussions during times of
medical crisis can cause distress, especially when physicians begin to recommend
discontinuing treatment (e.g., as in writing a do-not-resuscitate (DNR) order) for those
Latino patients who had not understood the severity of their illness prior to being
132
hospitalized. Disadvantaged Latino patients in this study experienced high levels of
distress when hospitalized because of gaps in patient-physician EOL communication.
When physicians hold sudden EOL discussions, patients and their family members could
be more focused on attending to the changes in the course of treatment and miss the
opportunity to say goodbye or to discuss the patient’s last wishes in a way that would be
meaningful to them because of the anxiety and distress caused by a sudden EOL
discussion.
Other issues arise when EOL discussions are delayed. In this study, providers
said that they lacked rapport and began EOL care discussions during times of medical
crisis, which they said was not best time to educate patients and/or their family members;
however, these were the circumstances physicians and patients face at LAC+USC. In the
event of a medical crisis, advanced cancer patients could very likely need someone, such
as a family member, to make an EOL decision for them about their medical care.
Holding an EOL discussion in this way could create conflict, especially when EOL
discussions are sudden. People can get angry and frustrated with the sudden bad news
because they lacked preparation about the possibility of dying and impending death.
Armando (subject 10) experienced lack of preparation for the EOL and was frustrated
after being hospitalized for progression of his disease. His colon cancer had progressed
into the spinal cord, lungs, and bones. When he was hospitalized, he was suddenly
informed by his surgeon to ask his oncologist EOL questions about how long he had to
live in order for the surgeon to justify doing spine surgery, so that Armando could have a
chance to walk again. Armando was also told that if he had less than six months to live,
“It was not worth operating.” While Armando had the surgery which effectively helped
133
him be able to walk again, he will have another decline in physical functioning in the
future because his physicians gave him a prognosis of less than a year. Furthermore, if
Armando were to be admitted to the hospital and unable to speak for himself (e.g., be put
on life-support), he would not have family to make EOL decisions for him because his
family has distanced themselves from him. Armando will inevitably have another
problem when he is hospitalized again because his providers are not actively engaged
him in EOL discussions.
Patients and providers are not having EOL discussions to be prepared for the
possibility of dying. In fact, the literature suggests that minority patients are less likely to
have documented their EOL care wishes in an advance directive, which leaves family
members and providers in the dark about their patients’ preferences for EOL care
(Hauser, et al., 1997; Krakauer, Crenner, & Fox, 2002). Without engaging in EOL
discussions and asking questions about EOL care prior to a medical health crisis, no one
really knows what type of EOL care a patient would want. In such cases, family
members may not be comfortable with making such EOL decisions for their loved one
and may rely on their physician’s opinions without fully understanding the circumstances
surrounding the hospitalization of their loved ones. And, when providers assume they
know what is best for the patient, they could make an error in judgment. The lack of
early EOL discussions places everyone in an ethical dilemma to seek out what patients
would have truly wanted for their medical treatment at the end of life.
Gaps, delays, and deferment of EOL discussions clearly influence the course of
treatment at the end of life for patients and their family members. Some research
associates poor health outcomes for family members who experience inadequate
134
interactions with their loved one’s healthcare providers during the last stage of life
(McNamara & Rosenwax, 2010). In looking at caregivers who reported getting a bit
worse versus those who got a lot worse after the death of a loved one, caregivers who
perceived that they did not get enough support from health care services were likely to
have poor health and got a lot worse after the death (McNamara & Rosenwax, 2010).
While this study did not interview patients and family members over time, through death,
family members could likely have negative perceptions about providers that would affect
their health.
Recommendations and Implications for practice
Providers expressed that they should take responsibility for beginning discussions
with their patients and had recommendations for improving EOL discussions (see Table
11. Recommendations to improve EOL Discussions by Provider Type). While providers
did not specifically discuss how to make improvements for training physicians, it is
important to focus on what can be done in academic healthcare institutions to improve
EOL care discussions. Many physicians in the LAC+USC County Medical Setting are in
training and tend to rotate through different medical services, limiting their ability to
build rapport with patients. All providers in the first phase mentioned the importance of
working collaboratively with other team members. While training physicians alternate
throughout the medical setting, other providers are more constant to the setting over time,
such as attending physicians, nurses, social worker, and chaplains. These providers are
more stable and have the ability to establish rapport over time. Because they have
worked in one setting for a long period of time, they know their patients, often better than
training physicians. Other providers can improve the problems that training physicians
135
experience by working collaboratively with the primary care team, to educate them about
initiating EOL care discussions and to involve other providers in the discussion (e.g.,
palliative care, social work, chaplain services) because many medical disciplines are
available to assist the patient with EOL care discussions. It would be beneficial to have
social workers and/or nurses provide physicians in training with a description of their
patients’ needs, especially regarding EOL care issues. Providers who have more stability
in their work setting can also be responsible for helping patients to document their wishes
in an advance directive document. In addition, these providers need to make sure that
EOL care wishes are documented in the patient’s chart so that other providers across the
medical setting and across time can benefit from the EOL care dialogue held with other
providers. Documentation in the medical chart improves continuity of care, making
patient information about EOL care discussions available to everyone who might provide
medical care to patients.
Physicians recommended initiating EOL discussions as early as possible and
preferably in an outpatient setting because patients could be afraid to talk about dying and
this fear could increase when they enter the hospital. EOL discussions take time and
cannot be rushed. Physicians emphasized that holding EOL discussions in outpatient
settings would be more comfortable for patients because of the familiarity with the
environment and with providers in the setting, which puts patients at ease. In out-patient
oncology settings, physicians have more flexibility in the timing of EOL discussions and
can walk patients through EOL discussions over time and not rush them. Since there is
more time, providers do not have to emphasize making a decision about EOL care right
136
away. In outpatient settings, patients have time to come back and ask questions before
they make any decisions.
Providers believed that more education was needed to understand the importance
of holding a multi-level EOL discussion about maintaining hope and continuing to focus
on the benefits of treatment while beginning to discuss the possibility of dying in order to
make preparations for the future event. Several providers referred to helping patients
comprehend how to have a shift in the conceptualization of hope, from maintaining hope
for a cure when treatment is working towards maintaining hope to relieve suffering (e.g.,
not have nausea and vomiting all the time) when treatment stops working. While having
an EOL discussions, providers can explore other ways to preserve hope: “There’s still
the hope you don’t have to suffer. There’s hope that you could be home...[to] smell the
food cooking, be in your own pajamas…with your own pillow and not in a hospital
gown.”
In talking with patients about the possibility of dying, providers can become
aware that some patients do not want to talk about dying and, in fact, are in denial about
the possibility of dying. When beginning EOL discussions, physicians need to honor
their patient’s wishes to maintain denial if this is what their patients want to do.
Physicians and other providers need to assess their patient’s wishes by asking them direct
questions about their desire to engage in EOL discussions. Providers said that these
questions should be objective, honest, and open to what happens when initiating EOL
discussions and then “listen” to what patients say is important to them. Providers need to
understand that denial is used as a coping mechanism and is sometimes necessary to
preserve the patient’s well-being during times of crisis (Stephenson, 2004). This is why
137
providers said that it would be better to initiate EOL discussion early as possible and to
make them routine for all providers so that ever patient would have an opportunity to
explore their EOL goals of care if they wanted to, before a medical crisis, regardless of
whether dying is imminent. It would be like “a scheduled visit for an end of life
discussion and everybody has it.”
Glaser and Strauss (1965) described how closed awareness affects patients and
their providers. Some cancer patients prefer to maintain a closed awareness, hope for a
cure, and desire to continue curative treatment until the last moments of their life. Many
Latino cancer patients in this study believed in a cure and had misunderstanding about the
likelihood of a cure, either because of denial, closed awareness, or lack of understanding
due to low education and language barriers. However, it was unclear which factors
influenced awareness about the severity of their illness. Asking patients to talk about
dying when they have a limited understanding or are unwilling to do so for whatever
reason could cause harm and increase emotional distress, especially for disadvantaged
populations who have had difficulty with accessing health care. Many underserved
Latinos are already vulnerable when they enter the healthcare system seeking treatment.
Providers suggest that they need to acknowledge how socio-cultural issues (e.g., limited
education and language barriers) influence the awareness of dying for Latino cancer
patients because they may not be able to follow directions or understand the information
given to them. Several providers recommend home visits for low-income Latinos with
multiple barriers in order to stay in touch with them directly, go to their house, go to their
community, evaluate their situations, meet their family members, and provide guidance in
EOL care discussions over time.
138
In addition, instead of deferring EOL discussions until some later date, physicians
and other providers need to involve family members or significant others who know the
personal preferences of the patient and can talk about the patient’s wishes for EOL care
(Rabow, Hauser, & Adams, 2004). Providers in the first-phase recommended being
aware that, most of time, Latinos preferred to keep their family members informed and
“up to date with what’s going on” about their loved-one’s medical condition, as opposed
to other cultures where they do not tell their family members anything. The triad data
demonstrated that most family members were involved in helping patients adapt to their
medical condition; however, family members and patients were, for the most part, not
engaged in EOL care discussions. As noted, Latino patients followed their physician’s
recommendations, without asking questions. It is important to be aware that while
Latinos prefer family involvement, they may not have spoken with their family members
about EOL care issues and/or their concerns or preferences for EOL goals of care. EOL
care discussions need to be initiated by providers because Latino patients may not begin
talking about the possibility of dying with their provider or their family members.
When involving family members, providers need to first question the patient
about their wishes for family involvement and identify one or two people as a healthcare
proxy to help them in the event that the patient can no longer speak at the EOL. In this
way, providers would know which family member to talk with about the transition from
continuing curative treatment towards accepting comfort care when needed. Providers
should also encourage patients to talk with family members about their EOL care wishes
and educate them about documenting these wishes in an advance directive to be placed in
the patient’s medical chart for other providers to follow. In any case, the patient’s
139
preference for EOL discussions need to be documented in the patient’s chart in order to
assist with continuity of care across different medical settings.
140
TABLE 11. Recommendations to improve EOL Discussions by Provider Type
Provider
Type
Recommendations
Physician
1 Initiate EOL discussions as early as possible, even before the person develops any type of disease
2 Hold EOL care discussions preferably in outpatient settings
3 Work collaboratively, with nurses, social workers, chaplains, and the palliative care team.
4 If possible, build rapport before initiating EOL discussions; and acknowledge the issue of the lack of rapport.
5 Take as much time needed to hold effective EOL discussions.
6 Evaluate pain and symptom management.
7
Utilize the patient’s medical chart to document EOL care discussions, wishes, and if possible include an advance
directive (AD). The AD document can change over time. If so, include the new AD in the patient’s chart.
8 Provide patient-centered care, be transparent, be honest, and give patients the facts.
9 Physicians could implement EOL discussions routinely, with every patient.
Nurse
1 Maintain hope while being clear about the goals of EOL care: “There’s still the hope you don’t have to suffer.”
2 Utilize assessment to evaluate the “different domains of care…physical, emotional, psychological and spiritual.”
3 Recognize the needs of family members and involve family members in providing patient-centered care.
4 Collaborate with the primary care team and other providers.
5 Help patients to talk with their physicians about their need for pain and symptom management.
6 Utilize the medical chart and document EOL care discussions.
7 Spend quality time with the patient and slow down when engaging in EOL discussions.
8 Be objective, honest, and listen to patients’ needs.
141
TABLE 11: Continued
Social
worker 1
Coordinate EOL care family meetings or EOL care conferences with the physician, other providers, patient, and
family members.
2 Provide patient-centered care and “start where the patient is.” Listen and be supportive.
3 Be a patient advocate. Learn leadership skills and advocate for EOL discussions.
4
Explore EOL issues with patients and their family members, assisting them to clarify information with their
providers.
5 Collaborate with the primary care team and other providers.
6 Help patients to talk with their physicians about their need for pain and symptom management.
7
Follow up with patients and family members emotional reactions to the bad news and provide supportive
counseling.
8 Provide resource information and connect patients to EOL care programs.
9 Talk openly about EOL care issues and be honest about “worst case scenario, situations.”
Chaplain
1
Collaborate with the primary care team and other providers during medical care rounds and be available to patients
when spiritual issues arise.
2 Involve family members in EOL care discussions
3 Encourage patients to express their feelings openly, while being respectful of their concerns.
4 Be a patient advocate, assisting patients to clarify their needs with their providers.
5 Listen and be supportive
142
Limitations
While this study provides important insights into the barriers to engaging in EOL
decision-making discussions for Latino patients, their providers and family members, this
study acknowledges several limitations. The findings cannot be generalized to other
populations because participants were not randomly selected. Recruitment of subjects
was purposeful to identify perspectives about EOL discussions from providers working in
the LAC+USC public sector healthcare setting and from Latino patients utilizing these
services. While this study presents perspectives of various provider types, patients, and
their family members, the findings are not representative of all patients within the
LAC+USC public medical setting because advanced cancer patients were recruited only
from the oncology clinic setting. Patients were not sampled from the emergency room,
the intensive care units, and other in-patient hospital settings, thus preventing the
exploration of barriers within these settings. All patients were foreign-born, Latinos
diagnosed with advanced cancers and not representative of all Latinos born in the United
States. The study involved mostly a homogeneous sample of patients; therefore, the
findings may have overestimated the importance of certain concepts within the data. In
addition, subjects in this study were interviewed only once and not followed over time to
ascertain how and when EOL discussions were needed as the subject declined physically,
in the last stage of life; therefore, EOL discussion may have occurred sometime after the
interview.
Implications for research
Despite these limitations, this study provided the opportunity to explore barriers
to EOL discussions among underserved Latinos with advanced cancers. Several areas of
143
future research can build upon the findings of this research study to improve the
limitations to engaging in EOL discussions for patients and their providers.
In this study, providers identified that EOL discussions were complicated by
Latino patients’ prior experiences with health disparities (i.e., limited preventive care)
which led to Latinos entering the medical system for the first time during a medical crisis
with advanced cancers. Under such circumstances, providers experienced a lack of
rapport needed for engaging in effective patient-provider communication, which was
complicated by being a training institution because providers quickly rotated through
different medical units. In academic medical institutions, previous research demonstrated
that patients can experience gaps in patient-provider communication and adverse events
because of loss of information during times of physician transfer and patient handoff
during medical shift rotations. As such, problems with EOL care discussions for
disadvantaged population in academic settings have not been raised in the literature.
More research is needed to evaluate and improve the ways in which medical rotations
affect disadvantaged populations and patients who are most vulnerable at the end of life.
Attending physicians, who influence the training of young physicians in academic
medical settings, need to be aware of the potential risk for adverse events to occur,
especially for disadvantaged Latinos who tend to believe in respecting their physicians by
not asking questions and/or not challenging their physicians in regards to their treatment
course.
Providers have a responsibility to engage their patients in EOL discussions;
however, they have different skills and personal preferences that influence what patients
learn about the severity of their condition and understand about the possibility of dying.
144
An evaluation of the congruency of preferences to engage in EOL discussions (e.g.,
document an advance directive and generally make EOL plans before they are needed)
between patients, their providers, and family members is needed. Without evaluating the
provider’s views, skills, and preferences to engage in EOL discussions, patients may lack
understanding what their providers are trying to tell them.
Another area of research that is needed would address a limitation in this study,
which is to evaluate the impact of delayed or deferred EOL discussions on the LAC+USC
public sector healthcare system in the emergency department and intensive care units.
Further research is needed to understand the effects of postponing EOL discussions for
advanced cancer patients, especially those patients who have experienced health
disparities. In addition, such gaps in EOL discussions also impact providers, placing
pressure on them to make quick assessments, develop rapport, and engage in EOL
discussions where none or very little existed previously. Such gaps can heighten anxiety,
frustration, and conflict for everyone involved in EOL discussions (patients, family
members, physicians, other medical staff, as well as the general medical system as a
whole). As such, it makes sense that delays and deferred EOL discussions affect
physicians’ ability to be effective in gaining trust and imparting important information to
help patients understand their health condition and make informed decisions about the
last stage of life. A longitudinal study is needed to follow disadvantaged advanced
cancer patients and their providers over time in order to better evaluate how these gaps
influence the problems that arise in EOL decision-making (e.g., distress levels,
hospitalizations, preferred place of death) in the last stage of life, especially in the last
few months of life.
145
Conclusion
Many factors contribute to delays in EOL discussions that in turn impact how
Latino advanced cancer patients understand the need to prepare for the last stage of life.
This dissertation calls attention to the vast problems and ethical concerns that exist for
disadvantaged Latinos who finally gain access to medical care for their cancer condition.
We need to improve these conditions for underserved Latinos first by providing
education about cancer prevention and then by educating everyone about the need to
begin EOL discussions before patients are unable to make plans for the end of life.
146
REFERENCES
Adler, N. E., & Page, A. (2008). Cancer care for the whole patient : meeting
psychosocial health needs: Washington, D.C. : National Academies Press.
American Cancer Society. (2007). Cancer facts and figures for Hispanics/Latinos 2006-
2008 Retrieved on August 9, 2007, from
www.cancer.org/downloads/STT/CAFF2006HispPWSecured.pdf
American Cancer Society. (2009). Facing the Final Stage of Life Retrieved on February
10, 2010 from
http://www.cancer.org/docroot/MBC/content/MBC_4_1x_facing_the_final_stage.
asp
American Society of Clinical Oncology. (1998). Cancer care during the last phase of life.
Journal of Clinical Oncology, 16(5), 1986-1996.
Anderson, K. O., Richman, S. P., Hurley, J., Palos, G., Valero, V., Mendoza, T. R., et al.
(2002). Cancer pain management among underserved minority outpatients:
perceived needs and barriers to optimal control. Cancer, 94(8), 2295-2304.
Angel, R. J., & Cleary, P. D. (1984). The Effects of Social Structure and Culture on
Reported Health. Social Science Quarterly 65 (3), 814-828.
Arora, V., Johnson, J., Lovinger, D., Humphrey, H. J., & Meltzer, D. O. (2005).
Communication failures in patient sign-out and suggestions for improvement: a
critical incident analysis. Quality and Safety in Health Care, 14(6), 401-407.
Ashing-Giwa, K. T., Padilla, G. V., Bohórquez, D. E., Tejero, J. S., & Garcia, M. (2006).
Understanding the breast cancer experience of Latina women. Journal of
Psychosocial Oncology, 24(3), 19-52.
Ashton, C. M., Haidet, P., Paterniti, D. A., Collins, T. C., Gordon, H. S., O'Malley, K., et
al. (2003). Racial and ethnic disparities in the use of health services: bias,
preferences, or poor communication? Journal of General Internal Medicine,
18(2), 146-152.
Bade, K. R., Murphy, J., & Sullivan, M. C. (1999). Lessons from the field--health care
experiences and preferences in a Latino community. Bioethics Forum, 15(4), 33-
42.
Baile, W. F., Lenzi, R., Parker, P. A., Buckman, R., & Cohen, L. (2002). Oncologists'
attitudes toward and practices in giving bad news: an exploratory study. Journal
of Clinical Oncology, 20(8), 2189-2196.
147
Betancourt, J. R., Green, A. R., Carrillo, J. E., & Ananeh-Firempong, O. (2003). Defining
cultural competence: a practical framework for addressing racial/ethnic disparities
in health and health care. Public Health Reports, 118(4), 293-302.
Born, W., Greiner, K. A., Sylvia, E., Butler, J., & Ahluwalia, J. S. (2004). Knowledge,
Attitudes, and Beliefs about End-of-life Care among Inner-City African
Americans and Latinos. Journal of Palliative Medicine, 7(2), 247-256.
Borum, M. L., Lynn, J., & Zhong, Z. (2000). The effects of patient race on outcomes in
seriously ill patients in SUPPORT: an overview of economic impact, medical
intervention, and end-of-life decisions. Study to Understand Prognoses and
Preferences for Outcomes and Risks of Treatments. Journal of the American
Geriatrics Society, 48(5 Suppl), S194-198.
Broadwell, A. W., Boisaubin, E. V., Dunn, J. K., & Engelhardt, H. T., Jr. (1993).
Advance directives on hospital admission: a survey of patient attitudes. Southern
Medical Journal, 86(2), 165-168.
Bronfenbrenner, U. (1979). The ecology of human development: Experiments by nature
and design. Cambridge, Mass: Harvard University Press.
Buckman, R. (1992). How to Break Bad News: A Guide for Health Care Professionals.
Baltimore, MD: Johns Hopkins University Press.
Buki, L. P., Borrayo, E. A., Feigal, B. M., & Carrillo, I. Y. (2004). Are All Latinas the
Same? Perceived Breast Cancer Screening Barriers and Facilitative Conditions.
Psychology of Women Quarterly, 28(4), 400-411.
Byock, I. R., Caplan, A., & Snyder, L. (2001). Beyond symptom management: Physician
roles and responsibility in palliative care. In L. Synder & T. E. Quill (Eds.),
Physician's Guide to End-of-Life Care (pp. 56-71). Philadelphia: American
College of Physicians.
Caplan, L. S., Helzlsouer, K. J., Shapiro, S., Wesley, M. N., & Edwards, B. K. (1996).
Reasons for delay in breast cancer diagnosis. Preventive Medicine, 25(2), 218-
224.
Christakis, N. (2000). Death foretold: Prophecy and prognosis in medical care. Chicago,
IL: University Press.
Cleeland, C. S., Gonin, R., Baez, L., Loehrer, P., & Pandya, K. J. (1997). Pain and
treatment of pain in minority patients with cancer: the eastern cooperative
oncology group minority outpatient pain study. Annals of Internal Medicine,
127(9), 813-816.
148
Collins, K. S., Hughes, D. L., Doty, M. M., Ives, B. L., Edwards, J. N., & Tenney, K.
(2002). Diverse Communities, Common Concerns: Assessing Health Care Quality
for Minority Americans. Findings from The Commonwealth Fund 2001 Health
Care Quality Survey. New York: The Commonwealth Fund.
Colon, M. (2005). Hospice and Latinos: a review of the literature. Journal of Social Work
in End-Of-Life & Palliative Care, 1(2), 27-43.
Costantini, M., Beccaro, M., & Higginson, I. J. (2008). Cancer trajectories at the end of
life: is there an effect of age and gender? Biomed Central Cancer, 8, 127.
Crabtree, B. F., & Miller, W. L. (1992). A template approach to text analysis: Developing
and using codebooks. In B. F. Crabtree & W. L. Miller (Eds.), Doing Qualitative
Research (Vol. 3, pp. 93-109). Thousand Oaks, C.A.: Sage Press.
Curtis, J. R. (2000). Communicating with patients and their families about advance care
planning and end-of-life care. Respiratory Care, 45(11), 1385-1394; discussion
1394-1388.
Curtis, J. R., Patrick, D. L., Caldwell, E., Greenlee, H., & Collier, A. C. (1999). The
quality of patient-doctor communication about end-of-life care: a study of patients
with advanced AIDS and their primary care clinicians. AIDS, 13(9), 1123-1131.
Daugherty, C. K. (2004). Examining ethical dilemmas as obstacles to hospice and
palliative care for advanced cancer patients. Cancer Investigation, 22(1), 123-131.
Denzin, N. K. (2009). The research act: A theoretical introduction to sociological
methods. Englewood cliffs, NJ: Prentice Hall.
Derose, K. P. (2000). Networks of care: how Latina immigrants find their way to and
through a county hospital. Journal of Immigrant Health, 2(2), 79-87. doi:
10.1023/A:1009533901752 [doi]
Dosanjh, S., Barnes, J., & Bhandari, M. (2001). Barriers to breaking bad news among
medical and surgical residents. Medical Education, 35(3), 197-205.
Emanuel, L. L., Barry, M. J., Stoeckle, J. D., Ettelson, L. M., & Emanuel, E. J. (1991).
Advance directives for medical care--a case for greater use. New England Journal
of Medicine, 324(13), 889-895.
Emanuel, L. L., von Gunten, C. F., & Ferris, F. D. (1999). The Education for Physicians
on End-of-Life Care (EPEC) Curriculum. Chicago, Ill: American Medical
Association.
149
Ferris, F. D., Balfour, H. M., Bowen, K., Farley, J., Hardwick, M., Lamontagne, C., et al.
(2002). A model to guide patient and family care: based on nationally accepted
principles and norms of practice. Journal of Pain and Symptom Management,
24(2), 106-123.
Ferris, F. D., & Librach, S. L. (2005). Models, standards, guidelines. Clinics in Geriatric
Medicine, 21(1), 17-44, vii.
Field, M. J., & Cassel, C. K. (Eds.). (1997). Approaching death : improving care at the
end of life. Washington, D.C.: National Academy Press.
Flores, G. (2000). Culture and the patient-physician relationship: achieving cultural
competency in health care. Journal of Pediatrics, 136(1), 14-23.
Garces, I. C., Scarinci, I. C., & Harrison, L. (2006). An examination of sociocultural
factors associated with health and health care seeking among Latina immigrants.
Journal of Immigrant Minority Health, 8(4), 377-385.
Geertz, C. (1973). The interpretation of cultures. New York, NY: Basic Books.
Gelfand, D. E., Balcazar, H., Parzuchowski, J., & Lenox, S. (2001). Mexicans and care
for the terminally ill: family, hospice, and the church. American Journal of
Hospice and Palliative Care, 18(6), 391-396.
Givens, J. L., Tjia, J., Zhou, C., Emanuel, E., & Ash, A. S. (2010). Racial and ethnic
differences in hospice use among patients with heart failure. Archives of Internal
Medicine, 170(5), 427-432.
Glaser, B. G., & Strauss, A. (1965). Awareness of dying. Chicago: Aldine Pub. Co.
Glaser, B. G., & Strauss, A. (1968). Time for Dying. Chicago, IL: Aldine Publishing
Company.
Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for
qualitative research. Chicago: Aldine Pub. Co.
Gordon, E. J., & Daugherty, C. K. (2003). 'Hitting you over the head': oncologists'
disclosure of prognosis to advanced cancer patients. Bioethics, 17(2), 142-168.
Gordon, H. S., Street, R. L., Jr., Sharf, B. F., Kelly, P. A., & Souchek, J. (2006). Racial
differences in trust and lung cancer patients' perceptions of physician
communication. Journal of Clinical Oncology, 24(6), 904-909.
Grady, P. A. (2005). Introduction: papers from the National Institutes of Health State-of-
the-Science Conference on Improving End-of-Life Care. Journal of Palliative
Medicine, 8 Suppl 1, S1-3.
150
Green, C. R., Anderson, K. O., Baker, T. A., Campbell, L. C., Decker, S., Fillingim, R.
B., et al. (2003). The unequal burden of pain: confronting racial and ethnic
disparities in pain. Pain Med, 4(3), 277-294.
Gregg, J., & Saha, S. (2006). Losing culture on the way to competence: the use and
misuse of culture in medical education Academic Medicine, 81(6), 542-547.
Guest, G., Bunce, A., & Johnson, L. (2006). How Many Interviews Are Enough? Field
Methods, 18(1), 59-82.
Haas, J. S., Weissman, J. S., Cleary, P. D., Goldberg, J., Gatsonis, C., Seage, G. R., 3rd,
et al. (1993). Discussion of preferences for life-sustaining care by persons with
AIDS. Predictors of failure in patient-physician communication. Archives of
Internal Medicine, 153(10), 1241-1248.
Haber, D. (1999). Minority access to hospice. American Journal of Hospice and
Palliative Care, 16(1), 386-389.
Haffner, L. (1992). Translation is not enough. Interpreting in a medical setting. Western
Journal of Medicine, 157(3), 255-259.
Hagerty, R. G., Butow, P. N., Ellis, P. A., Lobb, E. A., Pendlebury, S., Leighl, N., et al.
(2004). Cancer patient preferences for communication of prognosis in the
metastatic setting. Journal of Clinical Oncology, 22(9), 1721-1730.
Hallenbeck, J. L. (2003). Palliative Care Perspectives. New York: Oxford University
Press.
Hauser, J. M., Kleefield, S. F., Brennan, T. A., & Fischbach, R. L. (1997). Minority
populations and advance directives: insights from a focus group methodology.
Cambridge Quarterly of Healthcare Ethics, 6(1), 58-71.
Hawley, S. T., Janz, N. K., Hamilton, A., Griggs, J. J., Alderman, A. K., Mujahid, M., et
al. (2008). Latina patient perspectives about informed treatment decision making
for breast cancer. Patient Education and Counseling, 73(2), 363-370.
Hern, H. E., Jr., Koenig, B. A., Moore, L. J., & Marshall, P. A. (1998). The difference
that culture can make in end-of-life decisionmaking. Cambridge Quarterly of
Healthcare Ethics, 7(1), 27-40.
Hewitt, M. E., Greenfield, S., & Stovall, E. (2006). From cancer patient to cancer
survivor : lost in transition. Washington, D.C.: National Academies Press.
Hoffmann, D. E., Zimmerman, S. I., & Tompkins, C. (1997). How close is enough?
Family relationships and attitudes toward advance directives and life-sustaining
treatments. J Ethics Law Aging, 3(1), 5-24.
151
Hofmann, J. C., Wenger, N. S., Davis, R. B., Teno, J., Connors, A. F., Desbiens, N., et al.
(1997). Patient preferences for communication with physicians about end-of-life
decisions. . Annals of Internal Medicine, 127(1), 1-12.
Horwitz, L. I., Krumholz, H. M., Green, M. L., & Huot, S. J. (2006). Transfers of patient
care between house staff on internal medicine wards: a national survey. Archives
of Internal Medicine, 166(11), 1173-1177.
Horwitz, L. I., Moin, T., Krumholz, H. M., Wang, L., & Bradley, E. H. (2008).
Consequences of inadequate sign-out for patient care. Archives of Internal
Medicine, 168(16), 1755-1760.
ICSI - Institute for Clinical Systems Improvement. (November 2009). Health Care
Guidelines: Palliative Care Third Edition. Retrieved on February 15, 2010 from
http://www.icsi.org/palliative_care/palliative_care_11918.html
Institute of Medicine. (2003). Unequal Treatment: Confronting Racial and Ethnic
Disparities in Healthcare. Washington, D.C.: The National Academies Press.
Juarez, G., Ferrell, B., & Borneman, T. (1998). Influence of culture on cancer pain
management in Hispanic patients. Cancer Practice, 6(5), 262-269.
Juarez, G., Ferrell, B., & Borneman, T. (1999). Cultural considerations in education for
cancer pain management. Journal of Cancer Education, 14(3), 168-173.
Kagawa-Singer, M., & Kassim-Lakha, S. (2003). A strategy to reduce cross-cultural
miscommunication and increase the likelihood of improving health outcomes.
Academic Medicine, 78(6), 577-587.
Kass-Bartelmes, B. L., Hughes, R., & Rutherford, M. K. (2003). Advance care planning:
preferences for care at the end of life, Rockville, MD: Agency for Healthcare
Research and Quality; Research in Action Issue #12. AHRQ Pub No. 03-0018.
Retrieved June 16, 2008 from http://www.ahrq.gov/research/endliferia/endria.pdf
Kaufman, S. (2005). And a Time to Die: How American Hospitals Shape the End of Life.
New York: Scribner.
Keating, N. L., Landrum, M. B., Rogers, S. O., Jr., Baum, S. K., Virnig, B. A., Huskamp,
H. A., et al. (2010). Physician factors associated with discussions about end-of-
life care. Cancer, 116(4), 998-1006.
Kilbourne, A. M., Switzer, G., Hyman, K., Crowley-Matoka, M., & Fine, M. J. (2006).
Advancing health disparities research within the health care system: a conceptual
framework. American Journal of Public Health, 96(12), 2113-2121.
152
Kimberlin, C., Brushwood, D., Allen, W., Radson, E., & Wilson, D. (2004). Cancer
patient and caregiver experiences: communication and pain management issues.
Journal of Pain and Symptom Management, 28(6), 566-579.
Kleinman, A. (1980). Patients and Healers in the Context of Culture. Berkeley:
University of California Press.
Kleinman, A., Eisenberg, L., & Good, B. (1978). Culture, illness, and care: clinical
lessons from anthropologic and cross-cultural research. Annals of Internal
Medicine, 88(2), 251-258.
Krakauer, E. L., Crenner, C., & Fox, K. (2002). Barriers to Optimum end-of-life care for
minority patients. Journal of the American Geriatrics Society, 50, 182-190.
Lannin, D. R., Mathews, H. F., Mitchell, J., Swanson, M. S., Swanson, F. H., & Edwards,
M. S. (1998). Influence of socioeconomic and cultural factors on racial
differences in late-stage presentation of breast cancer. Journal of the American
Medical Association, 279(22), 1801-1807.
Larkey, L. K., Hecht, M. L., Miller, K., & Alatorre, C. (2001). Hispanic cultural norms
for health-seeking behaviors in the face of symptoms. Health Education and
Behavior, 28(1), 65-80.
Larson, D. G., & Tobin, D. R. (2000). End-of-life conversations: evolving practice and
theory. JAMA-Journal of The American Medical Association, 284(12), 1573-
1578.
Latino Coalition for a Healthy California. (January 2005). Latino Health in California
Fact Sheet Retrieved on Februrary 24, 2010 from
http://www.lchc.org/documents/LatinoHealthinCA.pdf
Lerman, C., Daly, M., Walsh, W. P., Resch, N., Seay, J., Barsevick, A., et al. (1993).
Communication between patients with breast cancer and health care providers.
Determinants and implications. Cancer, 72(9), 2612-2620.
Leydon, G. M., Boulton, M., Moynihan, C., Jones, A., Mossman, J., Boudioni, M., et al.
(2000). Cancer patients' information needs and information seeking behaviour: in
depth interview study. BMJ, 320(7239), 909-913.
Lo, B., Quill, T., & Tulsky, J. (1999). Discussing Palliative Care with Patients. Annals of
Internal Medicine, 130(9), 744-749.
153
Lorenz, K., Lynn, J., Morton, S. C., Dy, S., Mularski, R., Shugarman, L., et al. (2004).
End-of-Life Care and Outcomes. Evidence Report/Technology Assessment No.
110. (Prepared by the Southern California Evidence-based Practice Center,
under Contract No. 290-02-0003.) AHRQ Publication No. 05-E004-2.: Rockville,
MD: Agency for Healthcare Research and Quality Retrieved from
http://www.ahrq.gov/downloads/pub/evidence/pdf/eolcare/eolcare.pdf.
Lynn, J. (2005). Sick to death: reforming health care for the last years of life. London,
England: University California Press, Inc.
Maly, R. C., Leake, B., & Silliman, R. A. (2003). Health care disparities in older patients
with breast carcinoma: informational support from physicians. Cancer, 97(6),
1517-1527.
McLeroy, K. R., Bibeau, D., Steckler, A., & Glanz, K. (1988). An ecological perspective
on health promotion programs. Health Education Quarterly, 15(4), 351-377.
McNamara, B., & Rosenwax, L. (2010). Which carers of family members at the end of
life need more support from health services and why? Social Science and
Medicine, 70(7), 1035-1041.
Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis: A sourcebook of
new methods (2nd edition). Thousand Oaks: Sage Publications.
Moadel, A. B., Morgan, C., & Dutcher, J. (2007). Psychosocial needs assessment among
an underserved, ethnically diverse cancer patient population. Cancer, 109(2
Suppl), 446-454.
Morales, L. S., Cunningham, W. E., Brown, J. A., Liu, H., & Hays, R. D. (1999). Are
Latinos less satisfied with communication by health care providers? Journal of
General Internal Medicine, 14(7), 409-417.
Morris, D. B. (1998). Illness and culture in the postmodern age. Berkeley, CA:
University of California Press.
Morrison, R. S., Zayas, L. H., Mulvihill, M., Baskin, S. A., & Meier, D. E. (1998).
Barriers to completion of health care proxies: an examination of ethnic
differences. Archives of Internal Medicine, 158(22), 2493-2497.
National Association of Social Workers. (2004). Palliative & end of life care Retrieved
December 24, 2009 from
http://www.socialworkers.org/practice/bereavement/standards/standards0504New
.pdf
National Association of Social Workers. (2005). NASW standards for social work
practice in health care settings Retrieved August 12, 2008 from
http://www.socialworkers.org/practice/standards/NASWHealthCareStandards.pdf
154
National Consensus Project: Clinical Practice Guidelines for Palliative Care. 2004.
Retrieved on June 30, 2008 from
http://www.nationalconsensusproject.org/Guideline.pdf
Pattison, E. M. (1977). The experience of dying. New York: Simon and Schuster.
Patton, M. Q. (2002). Qualitative research & evaluation methods (3rd ed.). Thousand
Oaks: C.A.: Sage.
Quill, T. E. (2000). Initiating end-of-life discussions with seriously ill patients:
addressing the "elephant in the room". JAMA-Journal of The American Medical
Association, 284(19), 2502-2507.
Rabow, M. W., Hauser, J. M., & Adams, J. (2004). Supporting family caregivers at the
end of life: "they don't know what they don't know". JAMA-Journal of The
American Medical Association, 291(4), 483-491. doi: 10.1001/jama.291.4.483
[doi]
291/4/483 [pii]
Rivadeneyra, R., Elderkin-Thompson, V., Silver, R. C., & Waitzkin, H. (2000). Patient
centeredness in medical encounters requiring an interpreter. American Journal of
Medicine, 108(6), 470-474.
Royak-Schaler, R., Gadalla, S., Lemkau, J., Ross, D., Alexander, C., & Scott, D. (2006).
Family perspectives on communication with healthcare providers during end-of-
life cancer care. Oncology Nursing Forum, 33(4), 753-760.
Ryan, A., Carter, J., Lucas, J., & Berger, J. (2002). You need not make the journey alone:
Overcoming impediments to providing palliative care in a public urban teaching
hospital. American Journal of Hospice & Palliative Medicine, 19(3), 171-180.
Salander, P. (2002). Bad news from the patient's perspective: an analysis of the written
narratives of newly diagnosed cancer patients. Social Science and Medicine,
55(5), 721-732.
Shavers, V. L., & Brown, M. L. (2002). Racial and ethnic disparities in the receipt of
cancer treatment. Journal of the National Cancer Institute, 94(5), 334-357.
Snyder, L., & Quill, T. E. (Eds.). (2001). Physician's guide to end-of-life care.
Philadelphia: American College of Physicians.
Spencer, S. M., Lehman, J. M., Wynings, C., Arena, P., Carver, C. S., Antoni, M. H., et
al. (1999). Concerns about breast cancer and relations to psychosocial well-being
in a multiethnic sample of early-stage patients. Health Psychology, 18(2), 159-
168.
155
Stephenson, P. S. (2004). Understanding denial. Oncology Nursing Forum, 31(5), 985-
988. doi: 10.1188/04.ONF.985-988 [doi]
Stewart, A. L., & Napoles-Springer, A. M. (2003). Advancing health disparities research:
can we afford to ignore measurement issues? Medical Care, 41(11), 1207-1220.
Stone, M. J. (2001). Goals of care at the end of life. Proceedings (Baylor University
Medical Center), 14(2), 134-137.
Strauss, A., & Corbin, J. (1998). Basics of qualitative research: techniques and
procedures for developing grounded theory. Thousand Oaks, CA: Sage
Publications.
Suurmond, J., & Seeleman, C. (2006). Shared decision-making in an intercultural
context. Barriers in the interaction between physicians and immigrant patients.
Patient Education and Counseling, 60(2), 253-259.
Taxis, J. C., Keller, T., & Cruz, V. (2008). Mexican Americans and hospice care:
Culture, control, and communication. Journal of Hospice and Palliative Nursing,
10(3), 133-141.
Teno, J. M., Weitzen, S., Fennell, M. L., & Mor, V. (2001). Dying trajectory in the last
year of life: does cancer trajectory fit other diseases? Journal of Palliative
Medicine, 4(4), 457-464.
The, A. M., Hak, T., Koeter, G., & van der Wal, G. (2001). Collusion in doctor-patient
communication about imminent death: an ethnographic study. Western Journal of
Medicine, 174(4), 247-253.
The SUPPORT Principal Investigators. (1995). A controlled trial to improve care for
seriously ill hospitalized patients. The study to understand prognoses and
preferences for outcomes and risks of treatments (SUPPORT). JAMA-Journal of
The American Medical Association, 274(20), 1591-1598.
Thompson, G. N., McClement, S. E., & Daeninck, P. J. (2006). "Changing lanes":
facilitating the transition from curative to palliative care. Journal of Palliative
Care, 22(2), 91-98.
U.S. Government Accountability Office. (December 2007). End-of-Life Care: Key
Components Provided by Programs in Four States Retrieved on June 15, 2008
from http://www.gao.gov/new.items/d0866.pdf
United States Census Bureau. (2008). State & County QuickFacts Retrieved on February
24, 2010 from http://quickfacts.census.gov/qfd/states/06/06037.html
156
van Ryn, M., & Fu, S. S. (2003). Paved with good intentions: do public health and human
service providers contribute to racial/ethnic disparities in health? American
Journal of Public Health, 93(2), 248-255.
von Gunten, C. F., Ferris, F. D., & Emanuel, L. L. (2000). Ensuring competency in end-
of-life care: communication and relational skills. JAMA-Journal of The American
Medical Association, 284(23), 3051-3057.
Weeks, J. C., Cook, E. F., O'Day, S. J., Peterson, L. M., Wenger, N., Reding, D., et al.
(1998). Relationship Between Cancer Patients' Predictions of Prognosis and Their
Treatment Preferences. JAMA-Journal of The American Medical Association,
279(21), 1709-1714. doi: 10.1001/jama.279.21.1709
Williams, B. R. (2004). Dying young, dying poor: a sociological examination of
existential suffering among low-socioeconomic status patients. Journal of
Palliative Medicine, 7(1), 27-37.
Willms, D. G., Best, J. A., Taylor, D. W., Gilbert, J. R., Wilson, D. M. C., Lindsay, E. A.,
et al. (1990). A systematic approach for using qualitative methods in primary
prevention research. Medical Anthropology Quarterly, 4(4), 391-409.
World Health Organization. (1990). WHO Definition of Palliative Care Retrieved on
December 29, 2009 from http://www.who.int/cancer/palliative/definition/en/
Yeo, S. (2004). Language barriers and access to care. Annual Review of Nursing
Research, 22, 59-73.
Zabora, J. R., Blanchard, C. G., Smith, E. D., Roberts, C. S., Glajchen, M., Sharp, J. W.,
et al. (1997). Prevalence of psychological distress among cancer patients across
the disease continuum. Journal of Psychosocial Oncology, 15(2), 73-87.
157
APPENDICES
APPENDIX A. Informational Sheet
RESEARCH INFORMATION SHEET
TITLE: EXPLORING PATIENT-PROVIDER
COMMUNICATION
PRINCIPAL INVESTIGATOR: FRANCES NEDJAT-HAIEM, MSW
DEPARTMENT: SCHOOL OF SOCIAL WORK
University Park Campus, 0411
Los Angeles, CA 90089
24-HOUR TELEPHONE NUMBER: 310-948-0045
You are invited to take part in a research study. Please take as much time as you
need to read the consent form. Feel free to ask any questions. Before you
decide whether you want to participate in this study, we will you some information
to help you decide whether you want to be in the study. If you decide to
participate, you will be asked to sign this form.
WHY IS THIS STUDY BEING DONE?
The goal of the study is to understand experiences with discussing end-of-life
care decisions with low-income Latinos who have life-threatening, advanced-
stage cancers.
WHAT IS INVOLVED IN THE STUDY?
If you decide to be in the study, this is what will happen. You will be asked
questions about your experiences and feelings with discussing bad news and
health care decision-making with one of your Latino patients who has a stage IV,
metastatic cancer. We can do this in person or on the telephone. It should take
about 30 to 40 minutes.
During the discussion, you will be asked questions about patient-provider
communication regarding: 1) end-of-life decision-making discussions you have
had with your patient and their family members, 2) their concerns about the
course of their illness and their understanding about the possibility of dying, 3)
things that make it easier or harder to discuss bad news with your patient and
their family members, and 4) resource information that you think they might need
including palliative and hospice care referral. We will take notes and tape-record
the discussion to help collect the information that you share. If you agree, we will
follow up with one or two more interviews in the following weeks after the first
158
interview to see if you have any new thoughts about our discussion and to
conduct an additional interview.
WHAT ARE THE POSSIBLE RISKS AND DISCOMFORTS?
During the discussion you may become upset when you talk about end of life
care. Please be aware that you may take a break at any time. You may skip or
stop answering any question that may make you feel uncomfortable. The
interviewers will do all they can do to make sure that the information you share
remains private and confidential. There may also be other risks that we do not
know about.
WHAT ARE THE POSSIBLE BENEFITS OF TAKING PART IN THIS STUDY?
You may enjoy talking and sharing your thoughts with us. What we learn from this study
will be used to help patients and providers understand the need to improve end-of-life
communication. You may receive no benefit from your participation in this study.
WHAT OTHER OPTIONS ARE THERE?
You may choose not to take part in this study. If you have questions, the
interviewer can answer them for you.
WILL YOUR INFORMATION BE KEPT PRIVATE?
The study staff and the Institutional Review Board (IRB) will keep the information
that you share private and confidential. The IRB is a research review board that
is made up of professionals and community members who review and monitor
research studies to protect the rights and welfare of research participants. The
results of this study may be presented at meetings. It may also be printed in
journals. In these cases, your identity will be kept confidential.
All study information that might identify you will be kept in a locked file. The
locked file is at the USC School of Social Work. Only study staff will be able to
look at the information. Nothing that identifies you will be shared without your
written permission. All efforts will be taken to keep information confidential,
however, there are legal requirements if you inform us of the possibility of hurting
yourself or others. This could be abuse or neglect to a child or older person.
WHAT ARE THE COSTS?
Neither you nor your insurance company will be billed for your participation in this
study.
ARE THERE ANY PAYMENTS TO YOU FOR TAKING PART IN THE STUDY?
We will give you a $20 gift certificate at the end of the interview for taking part in
this study. If you agree to a second or third interview from this study, we will give
you an additional $20 gift certificate at the end of each interview. If we ask you to
stop the interview for any reason or if you prefer to stop the interview at any time
during the discussion, we will still give you the $20 gift certificate.
159
WHAT HAPPENS IF YOU GET INJURED OR NEED EMERGENCY CARE?
If you get hurt from taking part in this study, you will have to pay for your medical
treatment. We will not pay for any injury that you may suffer.
WILL YOU RECEIVE NEW INFORMATION ABOUT THIS STUDY?
During the study, we will tell you if we find out new information that might cause
you to change your mind about continuing in the study. After we give you the
new information, we will ask you again if you still want to take part in the study.
UNDER WHAT CIRCUMSTANCES CAN YOUR PARTICIPATION BE TERMINATED?
The researchers can say at any time that you cannot take part in this study.
They will tell you if you cannot continue. They will do this if your health and safety
are in danger or if you have a condition that does not fit the plan of the study.
WHAT ARE YOUR RIGHTS AS A PARTICIPANT, AND WHAT WILL HAPPEN
IF YOU DECIDE NOT TO PARTICIPATE?
Your participation in this study is voluntary. You are not giving up any legal
claims or rights if you take part in this study. If you do decide to take part, you
can change your mind and stop taking part at any time.
WHOM DO YOU CALL IF YOU HAVE QUESTIONS OR CONCERNS?
You may contact Frances Nedjat-Haiem, MSW 310-948-0045 with any
questions, concerns or complaints about the research or your participation in this
study. You may also call if you feel you have been hurt by taking part in this
study. If you have any questions, concerns or complaints about the research and
are unable to contact the research team, or if you want to talk to someone
independent of the research team, please contact the Institutional Review Board
(IRB) Office at 323-223-2340 between the hours of 8:00 AM and 4:00 PM. (Fax:
323-224-8389 or email at irb@usc.edu). If you have any questions about your
rights as a research participant, please also contact the Institutional Review
Board Office at the numbers above or write to the Institutional Review Board at
the LAC+USC Medical Center, IRD Building, 2020 Zonal Avenue, Suite 425, Los
Angeles, CA 90033.
160
APPENDIX B. Recruitment Flyer
Research Study
Exploring Patient-Provider Communication in Advanced Cancer Care
(IRB #HS- 09-00378)
Who:
I am recruiting Hispanic, advanced cancer patients receiving medical care at the LAC + USC
public sector health care system to participate in a research study. We hope to include cancer
patients, one of their family members, and a provider, either a physician, nurse, social worker, or
chaplain together in this study. Participants will have already had one or more discussions
regarding diagnosis and illness severity with advanced cancer.
Why:
In my 10-year experience with hospital social work I have noticed that socio-cultural & economic
issues seem to influence patient-provider communication for minorities. I am conducting a study
to explore patient/family member/provider perceptions of advanced cancer treatment experiences,
specifically with Hispanic advanced cancer patients. I am exploring participants’ understanding
of illness severity, treatment preferences and concerns, involvement of family members,
relationship with clinician, satisfaction with care, and desired outcomes.
Benefits & Risks:
There is unlikely to be any direct benefit or significant risk to you from being in this study. The
primary benefit is to gain knowledge. If you take part in this study, you may help others in the
future.
When & What:
This research involves a single in-person or telephone interview, which should take 30 minutes
more or less and will give you $20.00 gift certificate for your participation. If interested, you may
wish to participate in an additional interview.
How:
If you or anyone you know might be interested in participating, please contact Frances Nedjat-
Haiem, MSW for more information!
Frances Nedjat-Haiem, MSW, PhD Candidate
Principal Investigator
USC, School of Social Work
nedjatha@usc.edu
161
APPENDIX C. Consent and HIPAA forms
RESEARCH INFORMED CONSENT
TITLE: EXPLORING PATIENT-PROVIDER
COMMUNICATION IN ADVANCED
CANCER CARE
PRINCIPAL INVESTIGATOR: FRANCES NEDJAT-HAIEM, MSW
DEPARTMENT: SCHOOL OF SOCIAL WORK
University Park Campus, 0411
Los Angeles, CA 90089
24-HOUR TELEPHONE NUMBER: 310-948-0045
You are invited to take part in a research study. Please take as much time as you
need to read the consent form. Feel free to ask any questions. Before you
decide whether you want to participate in this study, we will you some information
to help you decide whether you want to be in the study. If you decide to
participate, you will be asked to sign this form.
WHY IS THIS STUDY BEING DONE?
The goal of the study is to understand Hispanic patients, family members, and
providers’ perceptions of advanced cancer treatment experiences in discussing
illness severity, treatment preferences and concerns, involvement of family
members, relationship with clinicians, satisfaction with care, and desired
outcomes.
You are invited as a possible participant because of your experiences in talking
with your providers and family members about being diagnosed with a serious
illness and making decisions regarding your course of treatment.
WHAT IS INVOLVED IN THE STUDY?
If you decide to be in the study, this is what will happen. You will be asked
questions about your experiences and feelings in discussing your cancer with
your providers and family members. We can do this in person or on the
telephone. It should take about 30 to 40 minutes.
During the interview, you will be asked questions about patient-provider
communication. Specifically, we will ask about: 1) discussing the severity of your
illness with your provider and your family members, 2) concerns about the course
of treatment, 3) your wishes and involvement of family members, and 4) things
that make it easier or harder for you to talk about your cancer. We will take notes
and tape-record the discussion to help collect the information that you share. If
162
you agree, we will follow up with one or two more interviews in the following
weeks after the first interview to see if you have any new thoughts about our
discussion and to conduct an additional interview.
WHAT ARE THE POSSIBLE RISKS AND DISCOMFORTS?
During the discussion you may become upset when talking about your illness.
Please be aware that you may take a break at any time. You may skip or stop
answering any question that may make you feel uncomfortable. The interviewers
will do all they can to make sure that the information you share remains private
and confidential. There may also be other risks that we do not know about.
WHAT ARE THE POSSIBLE BENEFITS OF TAKING PART IN THIS STUDY?
You will not receive any direct benefit from your participation in this study. However,
you may enjoy talking and sharing your thoughts with us. What we learn from this study
will be used to help patients, providers, and family members understand the need to
improve communication about advanced cancer care.
WHAT OTHER OPTIONS ARE THERE?
You may choose not to take part in this study. If you choose not to participate, all
of the usual care available to patients will still be available to you. These include
talking with your doctor about your feelings and concerns about your illness.
WILL YOUR INFORMATION BE KEPT PRIVATE?
The study staff and the Institutional Review Board (IRB) will keep the information
that you share private and confidential. The IRB is a research review board that
reviews and monitors research studies to protect the rights and welfare of
research participants. The results of this study may be presented at meetings. It
may also be printed in journals. In these cases, your identity will be kept
confidential.
All study information that might identify you will be kept in a locked file. The
locked file is at the USC School of Social Work. Only study staff will be able to
look at the information. Nothing that identifies you will be shared without your
written permission. All efforts will be taken to keep information confidential,
however, there are legal requirements if you inform us of the possibility of hurting
yourself or others. This could be abuse or neglect to a child or older person.
WHAT ARE THE COSTS?
There are no costs to you for your participation in this study.
ARE THERE ANY PAYMENTS TO YOU FOR TAKING PART IN THE STUDY?
You will receive a $20 gift certificate at the end of the interview for taking part in
this study. If you agree to a second or third interview from this study, you will
receive an additional $20 gift certificate at the end of each interview. If we ask
you to stop the interview for any reason or if you prefer to stop the interview at
any time during the discussion, you will still receive the $20 gift certificate.
163
WHAT HAPPENS IF YOU GET INJURED OR NEED EMERGENCY CARE?
If you get hurt from taking part in this study, you will have to pay for your medical
treatment. We will not pay for any injury that you may suffer.
WILL YOU RECEIVE NEW INFORMATION ABOUT THIS STUDY?
During the study, we will tell you if we find out new information that might cause
you to change your mind about continuing in the study. After we give you the
new information, we will ask you again if you still want to take part in the study.
UNDER WHAT CIRCUMSTANCES CAN YOUR PARTICIPATION BE
TERMINATED?
The researchers can say at any time that you cannot take part in this study.
They will tell you if you cannot continue. They will do this if your health and safety
are in danger or if you have a condition that does not fit the plan of the study.
WHAT ARE YOUR RIGHTS AS A PARTICIPANT, AND WHAT WILL HAPPEN
IF YOU DECIDE NOT TO PARTICIPATE?
Your participation in this study is voluntary. You are not giving up any legal
claims or rights if you take part in this study. If you do decide to take part, you
can change your mind and stop taking part at any time.
WHOM DO YOU CALL IF YOU HAVE QUESTIONS OR CONCERNS?
You may contact Frances Nedjat-Haiem, MSW 310-948-0045 with any
questions, concerns or complaints about the research or your participation in this
study. You may also call if you feel you have been hurt by taking part in this
study. If you have any questions, concerns or complaints about the research and
are unable to contact the research team, or if you want to talk to someone
independent of the research team, please contact the Institutional Review Board
(IRB) Office at 323-223-2340 between the hours of 8:00 AM and 4:00 PM. (Fax:
323-224-8389 or email at irb@usc.edu). If you have any questions about your
rights as a research participant, please also contact the Institutional Review
Board Office at the numbers above or write to the Institutional Review Board at
the LAC+USC Medical Center, IRD Building, 2020 Zonal Avenue, Suite 425, Los
Angeles, CA 90033.
You will get a copy of this consent form.
164
Study Title (optional): Exploring Patient-Provider Communication in Advanced Cancer Care
IRB No.: ( HS-09-00378 )
Principal Investigator: Frances Nedjat-Haiem, MSW
USC HIPAA AUTHORIZATION FOR
USE AND DISCLOSURE OF HEALTH INFORMATION
IN CONNECTION WITH RESEARCH STUDY
The Health Insurance Portability and Accountability Act (HIPAA) and California
Law:
A federal law known as the Health Insurance Portability and Accountability Act
(HIPAA) protects how your health information is used for certain purposes.
HIPAA requires that you give your written permission to release your “Protected Health
Information” to members of the research team to use for this research study. “Protected
Health Information” is any identifiable health information about your past, present or
future physical or mental health condition or payment for health care. Examples of
protected health information include: medical or dental records, billing records,
identifiable tissue samples and x-rays. State law also gives you certain protections
regarding the use and release of your health information.
This form authorizes your health care providers to release your health information to
members of the research team and others for research purposes. It also describes how
your health information will be used. You must sign this form to participate in the study.
Authorization to Obtain and Use Health Information From Provider for Research
Study:
By signing this document, you authorize (give permission to) the following health care
provider(s) checked or described below:
√ All health care providers with health information about me
165
USC Norris Cancer Hospital
USC University Hospital
Childrens Hospital Los Angeles
√ LAC+USC Medical Center
USC Care Medical Group, Inc. and its affiliated practice plans
√ The researcher/clinician generating health information through this study
To release the following information: [check the box that applies]
√ All of your medical or other patient records and other protected health
information that the provider has in his or her possession, including information
relating to any patient history, mental or physical condition and any treatment you
received. (This section does not include HIV test results, certain inpatient mental
health records, and drug and alcohol treatment records protected under federal
law, which require your separate authorization below).
Only the following records or types of health information: (Insert dates of
treatment, types of treatment or other designation.)
_______________________________________________________________
Any and all health information that is generated in the course of the research
study
_______ HIV test results. [This box must be separately initialed by the
subject if applicable]
_______ Mental health treatment records governed under state law
(including mental health records relating to involuntary or voluntary mental
health treatment).
[This box must be separately initialed by the subject on the line above if applicable]
_______ Substance abuse (drug and alcohol) treatment records.
[This box must be separately initialed by the subject on the line above if applicable]
To the following individuals or entities for the following purposes:
Researchers (those individuals in charge of the study), research staff, including
nurses, technicians and administrators, students involved with the research
project, such as graduate assistants, medical or professional trainees and other
166
members of the research team for purposes of the research study as described in
the attached informed consent
The research sponsor, its affiliates, subcontractors and representatives for
purposes of conducting, evaluating, overseeing or otherwise assisting with this
research study and the related research activities of the sponsor
The relevant USC Institutional Review Board (IRB), Health Research Association
(HRA), the USC HIPAA Privacy office, funding agencies and relevant
government national and international oversight agencies such as the Food and
Drug Administration and the Office for Human Research Protections and as
otherwise required by law
Limits of this Authorization:
Under USC policies, USC personnel identified above who have access to your health
information as part of this study, may not use the information for purposes other than this
study, except as otherwise permitted by law. In addition, while health information that is
shared with others outside USC may not be protected by HIPAA once disclosed, it may
nonetheless remain protected under relevant California or other state privacy laws.
Right to Deny Access to Health Information:
During the course of this study, you may be denied access (to inspect or copy) to some or
all information generated for this research study. Subject to applicable law, you are
entitled to access this health information once the research study is completed.
Term of this Authorization:
Except for database research, if applicable, this authorization for USC to use your health
information described above for purposes of the research study expires 20 years from the
date of your signature or at the end of the research study (including all data collection and
analysis), whichever is sooner, unless you revoke this authorization as described in the
next section.
Refusal to sign/Right to Revoke:
You must sign this Authorization in order to participate in this research. You may
change your mind and revoke (e.g., withdraw or cancel) this authorization and your
participation in this research study at any time. To do so, your revocation must be in
writing to the appropriate Institutional Review Board (IRB) and include: (1) the title of
the research study; (2) the name of the Principal Investigator; and (3) your name and
telephone number or address. Please send the revocation to the following IRB address:
________________________________________________________________________
167
From and after the date your notice of revocation is received, you will not be allowed to
participate any further in the research and we will stop collecting your health information.
However, even if you revoke this authorization and your participation in this research study,
we may still use and share your health information already obtained as necessary to maintain
the integrity of the research study.
Questions regarding your privacy rights:
The address of USC’s Privacy Office is 3500 Figueroa, Suite 105, Los Angeles, CA 90089-
8007, and you may contact the Privacy Office by telephone at 213-740-8258.
Agreement:
I have read (or someone has read to me) the information provided above. I have been
given the opportunity to ask questions and all of my questions have been answered to my
satisfaction. My signature below indicates that I authorize the use and disclose my health
information as described in this document.
_______________________________________________________________________
Name of Subject Signature Date of Birth Date Signed
If Individual is unable to sign this Authorization, please complete the information below:
_______________________________________________________________________
Name of Legal Guardian Signature Legal Relationship Date Personal Representative
You will be provided with a signed copy of this authorization.
168
AGREEMENT:
I have read (or someone has read to me) the information provided above. I have
been given a chance to ask questions. All my questions were answered. I have
decided to sign this form in order to take part in this study.
Name of Research Participant Signature Date
Signed
Name of Witness Signature Date
Signed
I have personally explained the research to the research participant and
answered all questions. I believe that he/she understands the information
described in this informed consent and freely consents to participate.
Name of Investigator/Person
Obtaining Informed Consent
Signature Date of
Signature
Abstract (if available)
Linked assets
University of Southern California Dissertations and Theses
Conceptually similar
PDF
Exploring end-of-life care experiences and disparities among Hispanic populations in the United States
PDF
Depression severity, self-care behaviors, and self-reported diabetes symptoms and daily functioning among low-income patients receiving depression care
PDF
Health care for all? Anti-Latino and anti-immigrant attitudes, health care policy, and the Latino community
PDF
Acculturation team-based clinical program: pilot program to address acculturative stress and mental health in the Latino community
PDF
Eliciting perspectives on palliative care: outpatient visits, advance care planning, and the impact of COVID-19
PDF
Stigma-free pregnancy: a recruitment and retention strategy for healthcare systems to engage pregnant women with substance use disorder in collaborative care
PDF
Barriers in care access for the marginalized individual: a provider’s role
PDF
Palliative care: breaking the knowledge barrier among community-based older adults
PDF
Racial disparities in advance care planning and directives completion and end-of-life outcomes in the United States
PDF
A study of depression disclosure among Latino older adults in Los Angeles
PDF
The role of protective factors on outcomes for Latinos with schizophrenia
PDF
How do non-tenure track faculty interact with Latino and Latina students in gatekeeper math courses at an urban community college?
PDF
Implicit provider bias in cardiovascular disease care of Black women: the lives of Black women with heart disease matter
PDF
Close the health gap: improving patient access to psychiatric treatment through primary care and telepsychiatry integration
PDF
Understanding normative influence of neighborhoods: a multilevel approach to promoting Latinas’ cervical cancer prevention behaviors in urban ethnic communities
PDF
Characterizing self-reported spatial and provider barriers to maternal health care utilization in Malawi
PDF
Implementation of peer providers in integrated health care settings
PDF
A series of longitudinal analyses of patient reported outcomes to further the understanding of care-management of comorbid diabetes and depression in a safety-net healthcare system
PDF
State variations in linguistic competency policies and the effects on immigrant access to health services
PDF
Tenemos Voz Network expanding behavioral health resources and services for the Latino re-entry population
Asset Metadata
Creator
Nedjat-Haiem, Frances Ruth
(author)
Core Title
Getting to end-of-life discussions in advanced cancer care: barriers and attitudes that limit end-of-life communication for disadvantaged Latinos
School
School of Social Work
Degree
Doctor of Philosophy
Degree Program
Social Work
Publication Date
06/10/2010
Defense Date
05/20/2010
Publisher
University of Southern California
(original),
University of Southern California. Libraries
(digital)
Tag
Communication,end-of-life care,healthcare disparities,Hispanic/Latino,OAI-PMH Harvest,palliative care
Place Name
California
(states),
Los Angeles
(counties)
Language
English
Contributor
Electronically uploaded by the author
(provenance)
Advisor
Palinkas, Lawrence A. (
committee chair
), Ell, Kathleen R. (
committee member
), Lopez, Steven (
committee member
)
Creator Email
fhaiem1@yahoo.com,nedjatha@usc.edu
Permanent Link (DOI)
https://doi.org/10.25549/usctheses-m3123
Unique identifier
UC1466411
Identifier
etd-NedjatHaiem-3801 (filename),usctheses-m40 (legacy collection record id),usctheses-c127-354924 (legacy record id),usctheses-m3123 (legacy record id)
Legacy Identifier
etd-NedjatHaiem-3801.pdf
Dmrecord
354924
Document Type
Dissertation
Rights
Nedjat-Haiem, Frances Ruth
Type
texts
Source
University of Southern California
(contributing entity),
University of Southern California Dissertations and Theses
(collection)
Repository Name
Libraries, University of Southern California
Repository Location
Los Angeles, California
Repository Email
cisadmin@lib.usc.edu
Tags
end-of-life care
healthcare disparities
Hispanic/Latino
palliative care