ABCD Exchange : May - June 2001 : Innovations - Philadelphia's African-Americans' EOL Concerns

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QuickScan - News in Brief
Meet the Board - Introducing Members
ABCD Welcomes New COO
In the States - Inadequate Pain Management in California
Lunch Briefing - Medicare+Choice

Study Examines Concerns in Philadelphia African American Community
by Diana Harris, MA, and Etienne Phipps, PhD

It's About Time is a project of the Community Ethics Program (CEP) of the Albert Einstein Healthcare Network (for more on the CEP and its work, see Exchange, Nov/Dec 2000). and involves demonstration programs aimed at improving the dialogue in ethnically diverse communities about patient rights and end of life care. It's About Time was developed in collaboration with the Center in the Park, a senior center in Philadelphia. CEP conducted a community forum and subsequent focus groups within the African American community, attended by over 75 community members.

The Community Forum

The forum was lively and interactive, with representatives from the community's primary medical, religious, and social organizations, as well as health care professionals from Einstein's hospice and geriatric service programs. Participants discussed different aspects of advance care planning and resources (e.g., services, documents) available to the community members. Community members also contributed in smaller groups, sharing perspectives about end-of-life care, including views about use of advance care documents.

Interesting patterns emerged around theoretical perspectives on end-of-life versus pragmatic action taken to promote patient autonomy. Virtually all of the participants agreed about the importance of making informed decisions about advance care planning, and of communicating these preferences with families, significant others, religious/spiritual counselors, and physicians. Some of the community members had already had in-depth discussions with family members and physicians about their treatment preferences. Yet very few of the participants had considered writing down those preferences, or had completed standard documents.

The reasons for not doing so were revealing. Most believed that informal discussion and family communication were sufficient. Many expressed other reasons, such as a fear of the unknown, wariness about limiting treatment choices, and a reluctance to discuss the topic in practical, concrete terms. Some participants felt that the language in the state living will was too complex, and said that they needed more clarity and guidance to complete the document and record its existence.

Many participants cited faith, religion, and spirituality as being central to dealing with serious illness and end-of-life issues. Some seemed to feel that talking or writing about specific treatments or preferences was almost an affront to a spiritual world-view in which a higher power governs fate. A minority cited religion as a hindrance to dealing with serious illness and end-of-life issues, particularly in cases where family members have conflicting religious views.

Participants at the forum identified the following as priorities for their community to improve care at end-of-life:

  1. Increase access to information about advance care planning through education and outreach.
  2. Improve communication with friends and family about treatment preferences and knowledge about patient's rights at end of life, particularly working with younger family members to better understand intergenerational differences and perspectives.
  3. Attend to the needs of more isolated community members so that they are informed about and/or engaged with resources to support quality end of life care.

Focus Groups

After completing the community forum, CEP conducted focus groups. These sessions, It's About Time, II, were held in local churches and at a local senior center. Many participants described themselves as being very religious, and cited religion as central to living their lives and dealing with end-of-life subject matter and advance care planning. While many were proactive about their health care, most disregarded the importance of formal documentation for advance care plans. They agreed that discussions about end-of-life care are critical, and supported the need for community outreach and educational sessions. They expressed concern about access to information and resources. Participants also cited financial barriers as a primary reason for not attending to advance care planning. For example, one participant felt that her health insurance would not cover life-extending treatments and saw no need to discuss treatment preferences.

Participants raised issues similar to those raised in the forum. They made clear just how hesitant people are to approach the topic of advance planning. For some African Americans, the tangibility and seeming irrevocability associated with talking about and filling out specific documents appears to be particularly unsettling. CEP's community work supports the need for further inquiry to better understand the role of family, and the importance of spirituality and socio-historical considerations. These factors should be addressed in programs designed to improve the quality of end of life care for the African American community.

Tina Phipps is the Director of Ethics and Health Policy Initiatives at Albert Einstein Healthcare Network in Philadelphia, Pennsylvania. Diana Harris is a Research Associate in Ethics and Health Policy Initiatives, and the coordinator on this project.
CEP is funded by The Nathan Cummings Foundation and The Albert Einstein Society.

For more information, contact:
Diana Harris, M.A.
Research Associate, Ethics & Health Policy Initiatives
Albert Einstein Healthcare Network
harridd@aehn2.einstein.edu

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