Ethnic Disparities in End-of-Live Care: A Cancer Aging Pilot Study
Funded by: National Cancer Institute; National Institute on Aging
Project Period: 9/03 - 8/05
Abstract
Objective: The overall purposes of this pilot project are 1) to
determine the feasibility of recruiting and retaining an ethnically diverse population
(Latino and Caucasian) of seriously ill older cancer patients to complete a longitudinal
study of quality of care at the end of life and 2) to identify culturally relevant areas
of care at the end of life to target in a future intervention study.
Methods: To meet the first objective, adults =65 years of age, admitted
to the hospital with a primary diagnosis of cancer, are being invited to participate in a
quantitative interview. Multiple recruitment methods are being pilot tested to maximize
ethnic diversity and ensure compliance with HIPAA. To meet the second objective, a combination
of qualitative methods are being employed, including a series of focus groups and qualitative
interviews to be conducted with subjects from the quantitative portion of the study.
Current Project Status: Results from the three completed focus groups
are presented below. Adult patients (=18 years of age) from the Westside clinic (WFHC, a
community health clinic within the Denver Health Medical Center system) who self-identify as
Latino were asked to participate. Participants were recruited through fliers posted at the
clinic and through the health care providers at WFHC. The focus group questions centered
around concepts of advance care planning, medical decision making, and preferences at the
end of life. Three focus group sessions facilitated by two bilingual Latino researchers
took place over single 60-minute periods (total of 17 participants). Standard focus group
techniques and qualitative analysis techniques were used to conduct the focus groups and
evaluate the translated transcriptions.
Preliminary analysis has identified the importance of family as the overriding theme of the
three focus groups. The integral role of the family emerged in nearly all of the discussion
topics including the experience of suffering, the process of medical decision-making, and the
last days of life. Spanish-speaking participants were not familiar with hospice care while
English-speaking participants expressed understanding of hospice care and related personal
experiences with hospice. Views of the timing of advance care planning (ACP) were variable
(whether ACP should occur when a person is healthy or already seriously ill). Nearly all of
the participants felt that decision-making should be carried out by the family as a group and
not by a single individual.
Key Staff: Fischer, Kramer, Kutner, Sauaia, Casiano
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