New Program Will Bring Advance Care Planning to African-American Faith Communities

Richard Payne, MD

Participating Congregations in Atlanta, Chicago, Dallas, Houston, Kansas City, Philadelphia and West Palm Beach 

African Americans die at excessive levels from chronic disease1 yet use only eight percent of hospice services nationally.2 Advance care planning – the process of communicating with a healthcare agent about the care they would want if unable to speak for themselves – and increased use of hospice services could greatly improve quality of life for one of the most vulnerable populations in America, elderly African Americans. 

A new project funded by the John and Wauna Harman Foundation and others will enable the Center for Practical Bioethics to implement a two-year program working with African American faith communities and community collaborators (i.e., hospices) in four cities to increase advance care planning and use of hospice services. Cities include Atlanta, Chicago, Dallas,  Kansas City, Philadelphia, and West Palm Beach.

The rationale for the program is rooted in American history and culture. Many African Americans distrust our healthcare system – which once practiced segregation, involuntary sterilization and unethical research practices – and are understandably reluctant to engage in a process that they perceive could put them at greater risk of being underserved. African Americans are also markedly more religious than the U.S. population and more reliant on faith leaders to help them make healthcare decisions. 

The project, launched on December 1, 2015, includes four phases:

Phase I – Congregations in targeted cities will recruit two-to-three Advance Care Planning (ACP) Ambassadors to commit to a six-month advance care planning program. Project faculty and staff from the Center for Practical Bioethics and partners will hold a four-hour training session for ACP Ambassadors at the Samuel Dewitt Proctor Leadership and Lay Conference in Houston on February 15-18, 2016.

Phase II – ACP Ambassadors will design and implement a project to facilitate and complete advance care planning documents in their congregations. Faculty and staff will provide coaching and advice on how to teach their congregants about advance care planning, encourage them to discuss their end-of-life care with their loved ones, and assist them in completing advance care planning documents.

Phase III – Faculty and staff will work with ACP Ambassadors and their community collaborators to organize a one-day Crossing Over Jordan Conference in November 2016, where  the Ambassadors will share their project design and outcomes with the community. 

Phase IV – This phase consists primarily of post-project tracking. Faculty and staff will develop and conduct ongoing surveys of participating congregations for one year following the conclusion of local advance care planning projects to track the project’s impact.

For more information about the project, please contact Leslie McNolty, Program Associate, lmcnolty@practicalbioethics.org or 816-979-1394.

1 http://www.cdc.gov/minorityhealth/populations/REMP/black.html

2 National Hospice and Palliative Care Organization’s Facts and Figures: Hospice Care in America, 2014 Edition, p. 5.

Richard Payne, MD, is the John B. Francis Chair at the Center for Practical Bioethics and the Esther Colliflower Professor of Medicine and Divinity at Duke Divinity School, Duke University.

DEATH PANELS BACK IN THE NEWS

John Carney

At Least in the Land of Oz for People with Hepatitis C

Death Panels are back in the news, at least in the Land of Oz (i.e., Kansas). This time the target seems to be assigned to a group of conservative legislators from Kansas recommending that patients in need of expensive medications for an infectious disease should be denied them if they don't adhere to their regimens or follow physicians recommendations regarding lifestyle changes. 

During the special hearing conducted by the KanCare Oversight Committee on Tuesday, December 29, the Committee approved (by voice vote) a resolution not to cover the cost of the medications for noncompliant patients. Two members of the Committee strongly objected to the Committee’s recommendation, The Wichita Eagle reported.

A week later on Tuesday, January 5, Ron Sylvester of the Hutchinson News assigned the Death Panel” label to the legislators’ effort in publishing this editorial.

Ironic how the tables have turned. The original Death Panel label was assigned to a non-existent provision in the Affordable Care Act. While we can hope this claim to be apocryphal as well, it deserves to be examined as did the one in 2009.

Provider-Patient Relationship Interference

Hepatitis C medications work, but they are expensive. People who have the disease are often subject to stigmatization because of the infectious nature of how the disease is usually transmitted. Often, people harbor the illness in a dormant state for years and are never tested. Many may transmit it unknowingly through a variety of ways, including contaminated needles. In some cases, however lapses in infection-control procedures are at fault, such as those that occur through manicures, pedicures, piercing, tattoos and sports. To learn more click here.   

One might raise the ethical question as to why legislators need to weigh in on an issue that seems pretty clear to be part of the relationship between provider and patient. Should we begin denying coverage for oxygen to patients who continue to smoke or deny diabetes meds to patients who don’t follow prescribed diets? All of these patients bear personal responsibility. Some comply, some don’t, some struggle and fail. Alternatives may need to be identified, but why can’t we leave that to practitioner and patient? Withholding life-saving treatment for a patient who hasn’t complied may be a challenge for the healthcare team and the patient, but is it a reason to abandon the patient’s coverage? Could it be the high cost of the medication or the mode of transmission that policy makers find objectionable part?  

Alternatives to a Slippery Slope

Personal responsibility and the relationship between physicians and patients should not be turned into a series of ultimatums. Denying proven treatments for a disease by legislative fiat (regulatory or statutory) because of a failure of personal responsibility eventually leads us to the point where a likely failure of “lifestyle” or “behavior” bodes ill for every last one of us 

The Panel's recommendation needs to be "put to rest" before it has a chance to hasten a patient's death. We need to bury the whole concept of Death Panels across the political, ideological and healthcare spectrum.

Discussing and exploring ways to engage non-adherent patients is a worthy enterprise, but we’ve got to be more imaginative and innovative in our ways to achieve health outcomes than cutting off a lifeline because the patient can’t behave in an “acceptable” manner.  

John G. Carney is the president and CEO of the Center for Practical Bioethics.