Cultural and ethnic differences affect the willingness of different ethnic and minority groups to engage in advance care planning. For many Asian Americans, family decision making takes priority over individual expression about treatment preferences. Among many African Americans, including those who have witnessed mistreatment and misinformation in the health care system and those who recall the Tuskegee syphilis study, there is a distrust of the health care system.
Two Breakthrough Series teams - New York City's Coney Island Hospital and the Balm of Gilead Center in Birmingham, Alabama - tried to improve advance care planning for poor patients and for minority groups.
Coney Island Hospital provides acute care to poor and underserved patients, who have often come to the hospital in emergency situations. Conversations about end-of-life care proved to be emotionally charged, and many families resisted participating, often because they felt that doing so meant giving up hope for the patient. Health care team members were uncomfortable with discussing choices and did not always know how to approach patients and families without eroding hope.
In looking at ways to improve care, Coney Island identified the following problems in its current care:
Coney Island tried many changes:
A similar approach proved successful for the Balm of Gilead Center at Cooper Green Hospital, a public hospital. The Breakthrough Series team aimed to develop an approach to advance care planning that would encourage these patients to participate, rather than feel alienated by the process. The group planned to address potential barriers in very specific ways:
The group developed and tested a script that is very conversational and is meant to put the patient at ease. An excerpt follows:
Let me tell you about the project I'm working on. Cooper Green Hospital is very interested in encouraging all of us to think ahead about our health care to make sure that we are the ones who get to make the decisions about how our care will be handled down the road. I'm talking to lots of people - hospital staff, inpatients, outpatients, even people in the community - about this, and I wonder if I could talk to you, too. As I said, I'm having the same conversation with all sorts of people - so this has nothing to do with your current illness or any concerns about your condition. By the way, what is your understanding of your illness and what you can expect?
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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.
For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].