The Center for Practical Bioethics has worked on end-of-life issues and advance care planning for more than three decades. Over the years, we’ve been enlightened and encouraged by the six reports that the National Academy of Medicine has issued on palliative and end-of-life care in the USA. These reports clearly establish that palliative care and hospice are essential to address suffering and quality care for the seriously and terminally ill. Research also shows that improving shared decision-making processes, such as advance care planning, provide a path to greater satisfaction for families experiencing the death of a loved one. We know that individuals who complete advance directive documents are more likely to have their preferences for end-of-life care respected — particularly the preference to die at home in hospice care.
We also noticed with increasing alarm that African-Americans typically do not share in the benefits of advance care planning, palliative care and hospice care to the same extent that white Americans do. Statistics from the National Hospice and Palliative Care Organization consistently show severe underutilization of hospice by African-Americans – whites make up more than 80% of hospice utilization on a national level, with African-American utilization at about 8%. This disparity in hospice and palliative care utilization is particularly striking because African-Americans die at excessive levels from chronic diseases.
Barriers and Opportunities
Unfortunately, there are significant barriers to implementing advance care planning tools in African-American communities. Many harbor a deep distrust of the traditional healthcare system stemming from egregious ethical violations in the past. Furthermore, African-Americans, who according to Pew Research Studies are know the most religious racial group in the USA, have significant religious concerns about advance care planning. For example, a survey of 205 African-American patients showed that “African-Americans were more likely to express discomfort discussing death, want aggressive care at the end of life, have spiritual beliefs that conflict with the goals of palliative care, and distrust the healthcare system.”
Fortunately, despite all of this, a seminal report funded by the California Health Care Foundation in 2007 found that, although minority communities in California have done less advance care planning than whites, African-Americans had fewer negative attitudes about the general concept of advance care planning than do any other racial-ethnic group.5
Nine Churches in Six Cities
In November 2015, the Center began a two-year project to work with religious communities to address advance care planning in African-American communities. With funding from the John and Wauna Harman Foundation, we partnered with VITAS Healthcare to recruit nine churches in six cities to work on advance care planning in their congregations. These churches designated advance care planning (ACP) ambassadors to teach about and advocate for advance care planning within their congregations.
In Chicago, Dallas and Kansas City ACP Ambassadors focused first on reaching out to the clergy in their churches by making presentations at regularly scheduled work meetings. Teams in Atlanta, Philadelphia and West Palm Beach have worked through the different ministries in their churches to make presentations and organize events. At each event, Ambassadors asked the audience to commit to having a conversation about end-of-life care with their families. They also provided materials and additional information upon request following the presentation. In total, church teams organized 19 events that reached nearly 700 people. More than 200 attendees committed to having conversations with their family members about advance care planning and end-of-life care. Nearly 100 individuals approached the presenters for more information and discussion following the event.
Crossing Over Jordan Conferences
ACP Ambassadors and VITAS Healthcare community liaisons in Atlanta, Chicago, Philadelphia and West Palm Beach each organized a half-day Crossing Over Jordan Conference to celebrate the conclusion of their six-month project and encourage other organizations in their communities to promote advance care planning. Nearly 500 community members attended these conferences, including representatives from local hospitals, assisted living centers, home health services, professional medical associations, community organizations and African-American churches.
The Crossing Over Jordan conferences were designed to exchange basic medical information about end-of-life care, as well as to celebrate the activities of the programs in traditional African-American church traditions that included music, singing, dancing and the spoken word performances. There were also remarks from pastors and spiritual leaders connecting the idea of advance care planning with biblical scripture, and a contemporary theological exploration justifying the practice. Attendees of the Crossing Over Jordan conferences were encouraged to speak to their families and friends about advance care planning, and were told that they can rely on ongoing connection to the Center for Practical Bioethics and Vitas for resources on advance care planning in their communities.
The Center remains committed to improving end-of-life care for African-Americans by promoting advance care planning. We are planning the next stage of this project and look forward to meeting with our partners and other stakeholders in the next few months.
i Able J, Pringe A, Rich A, Malik T, Verne J. The impact of advance care planning of place of death, a hospice retrospective cohort study. BMJ Supportive & Palliative Care 2013;3:168–173.
ii NHPCO’s Facts and Figures: Hospice Care in America, 2014 Edition, p. 5
iii Rodriguez, J.M., Geronimus, A.T., Bound, J., Dorling, D. Black Lives Matter: Differential Mortality and the Racial Composition of the U.S. Electorate, 1970-2004. Social Science and Medicine, 2015; 136-137 and 192-199
iv Johnson K, Kuchibhatla M, Tulsky J., What Explains Racial Differences in the Use of Advance Directives and Attitudes Toward Hospice Care? Journal of the American Geriatrics Society 2008;56(10):1953-1958
v Crawley L, and Kagawa-Singer M. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California, California Healthcare Foundation Report, March 2007.