Exploring Diversity At EoL: Building Partnerships With Philadelphia Latinos
by Genevra F. Murray, B.A. and Etienne Phipps, Ph.D.
The Community Ethics program (CEP) of the Albert Einstein Healthcare Network has been working with different communities in Philadelphia to explore diversity at end of life (For more information on the CEP and its work, see Exchange, Nov/Dec 2000 and May/June 2001.) In a recent demonstration program with Philadelphia's Latino community, CEP relied on interviews, a forum, and two focus groups to establish local Latino needs and priorities for end-of-life care.
Community Leaders Forum. Based on informal interviews with leaders and experienced health and human services personnel in the Latino community, CEP convened a Community Leaders Forum for representatives from major Latino social and medical organizations. Participants pointed to a conflict between traditional Latino and non-Latino views of death and illness. Community leaders emphasized that there is a particular Latino view of illness often marked by fatalism and the sense that nothing can be done. This may lead people not to seek treatment for some illnesses or not to use social support networks. Many participants described being pulled between traditional Latino values of familial interdependence and the reality of American life, in which people lack time and resources to care for the elderly and for people with serious illness.
Participants noted that Latinos often face particular end-of-life issues within a larger context in which poverty and violence compromise health and present significant barriers to care. Community leaders also noted a lack of medical care that accommodates language and cultural differences. Language barriers and cultural isolation exacerbate the isolation and depression experienced by some elderly Latinos.
When presented with the Pennsylvania Living Will and the Five Wishes documents, community leaders expressed interest, but had little prior knowledge of either. Community leaders noted that many medical decisions and choices, particularly around the use of life-sustaining measures, can seem overwhelming to many Latinos, and may lead many to feel that they should opt for life-support; otherwise they feel guilty. Concerns about rejecting treatments were also expressed-- many Latinos do not trust the medical community. In general, community leaders thought the complexity and medical jargon of advance care documents would render them unintelligible for many consumers. Even so, community leaders felt it was important to promote the use of advance care documents. They pointed to the importance of how the topic is raised and by whom.
Community Focus Groups. Two focus groups were held with Latino community members, one with older people and one with Latinos diagnosed with HIV/AIDS. While focus group members validated most of the issues raised at the forum, they also emphasized a unique set of issues.
Participants cited intergenerational differences, or differences in values, beliefs and everyday practices tied to American culture, as points of separation between Latino elders and their children. Their concerns are more global than just end-of-life care; they discussed the inadequacy of health care services, for example, and prescribing errors, as being significant issues.
Focus group members diagnosed with HIV/AIDS had a distinct set of concerns, and spoke of gaps in advocacy and a lack of confidentiality at some Philadelphia medical care facilities. They discussed their experience that provider discomfort and insensitivity often leads to postponement of treatment or poorer quality care. This group expressed concern about how the stigma of HIV/AIDS affects their mental health. All of these factors create such stress that participants feared their physical health would suffer.
Conclusions. The following priorities were identified through the Community Leaders Forum and validated through the focus groups:
- Educate medical personnel about the social, cultural, and economic context to provide more appropriate medical outreach and care and to improve satisfaction and trust.
- Translate basic health information into Spanish, including support services information and advance care documents.
- Provide transportation to medical offices to improve compliance, as even subsidized transportation services require prohibitive $5-7 co-payments.
- Include alternative and holistic medicine in existing community-based health centers; interest in these approaches is high.
- Continue using hospitals as resources for information about advance directives.
- Engage Latinos from similar regions and cultures to approach others in the community about advance care documents. Acknowledge that planning for death is uniquely American, but that the approach is beneficial to Latino community. Include family members in discussions to increase awareness of and respect for individual's wishes.
- Include advance care documents in driver's license renewal (along with organ donor information) to make it more readily available and routine.
Based on these findings, the CEP plans to continue working with area leaders to develop relevant research and demonstration programs in the community.
For more details, visit us online at:
http://www.einstein.edu/urbanhealth
Etienne Phipps is the Director, Einstein Center for Urban Health Policy and Research and Director, Medical Ethics, Albert Einstein Healthcare Network. For more information, contact her at: phippst@einstein.edu
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This content is provided by Americans for Better Care of the Dying. For more information, visit www.abcd-caring.org.
