ABCD Exchange : September - October 2000 : Director's Chair - HIV/AIDS & End-of-Life Care

Upfront - Patient Safety and Medical Errors
Resources - Improving Care for the End of Life : A Sourcebook
Pain - Pain Law Center Aims to Improve End-of-Life Care
QuickScan--News in Brief
On the Hill - Moyers on Dying

How the History of HIV/AIDS Can Guide Push for Better End-of-Life Care
By Dennis Barbour

Taking on the challenge of being executive director for ABCD appealed to me for two reasons: the role fit with the continuum of my career, and ABCD demonstrated so much promise for making a significant contribution to end-of-life care. From some perspectives, my career has followed an unusual, twisting path. From other perspectives it has been a logical progression. My professional journey, from disease prevention and health promotion, to reproductive health, then to HIV and now the complex issues surrounding a dignified death, has been motivated by a shared commitment to and passion with those individuals who have worked so tirelessly in each of these fields.

I have had the opportunity to speak with many people throughout the end-of-life community over the course of the past few months. I have been struck by the depth of their knowledge, by their commitment to make a difference, and by their willingness to serve as agents of change to make that difference possible. I am fortunate to work among so many gifted and giving individuals. That said, there is much more to be done. We do not have the benefit of time. As with AIDS in the early Eighties, we now confront a potential explosion of human need without any roadmap to a place where we are able to meet it. The demographics of the Baby Boom generation demand that we begin planning now to avert this major health care crisis.

Although the challenges of HIV differ in many respects from looming challenges in end-of-life care, there are many parallels. An examination of those parallels may be helpful as we draft our agenda for change. For starters, as the AIDS epidemic unfolded in this country, we were saddled with a health care system poorly designed to deal with the complex needs of these patients. Time was not a luxury to be afforded. The growing gaps in care, particularly the need for a continuum of care, challenged caregivers. In the process, new models of care began to sprout from the landscape, held together with bailing wire—much as so many models of end-of-life care are today. Over time, committed individuals began to coalesce as political forces for change. In time, an entire system of health care was created within the larger system.

We may be at a similar juncture today in care at the end of life. Many great leaps of progress have occurred in the care of the HIV-infected over the past 18 years. Sadly, many mistakes have also been made. As ABCD moves ahead with its agenda, I hope that we will be able to learn from the successes and shortcomings in the field of HIV, and consider the history of AIDS in America as a mentor to our future.

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This content is provided by Americans for Better Care of the Dying. For more information, visit www.abcd-caring.org.