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Getting to end-of-life discussions in advanced cancer care: barriers and attitudes that limit end-of-life communication for disadvantaged Latinos

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Title	Getting to end-of-life discussions in advanced cancer care: barriers and attitudes that limit end-of-life communication for disadvantaged Latinos
Author	Nedjat-Haiem, Frances Ruth
Author email	nedjatha@usc.edu; fhaiem1@yahoo.com
Degree	Doctor of Philosophy
Document type	Dissertation
Degree program	Social Work
School	School of Social Work
Date defended/completed	2010-05-20
Date submitted	2010
Restricted until	Unrestricted
Date published	2010-06-10
Advisor (committee chair)	Palinkas, Lawrence
Advisor (committee member)	Ell, Kathleen Lopez, Steven
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.; 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.
Keyword	end-of-life care; palliative care; Hispanic/Latino; healthcare disparities; communication
Geographic subject (county)	Los Angeles
Geographic subject (state)	California
Language	English
Part of collection	University of Southern California dissertations and theses
Publisher (of the original version)	University of Southern California
Place of publication (of the original version)	Los Angeles, California
Publisher (of the digital version)	University of Southern California. Libraries
Provenance	Electronically uploaded by the author
Type	texts
Legacy record ID	usctheses-m3123
Rights	Nedjat-Haiem, Frances Ruth
Repository name	Libraries, University of Southern California
Repository address	Los Angeles, California
Repository email	http://www.usc.edu/isd/libraries/services/ask_a_librarian/email/
Filename	etd-NedjatHaiem-3801
Archival file	uscthesesreloadpub_Volume48/etd-NedjatHaiem-3801.pdf