Born: 1951, United States
Died: NA
Country most active: United States
Also known as: Joanne Harley
The following is republished from the U.S. National Library of Medicine. This piece falls under under public domain, as copyright does not apply to “any work of the U.S. Government” where “a work prepared by an officer or employee of the U.S. Government as part of that person’s official duties” (See, 17 U.S.C. §§ 101, 105).
Inspiration
As a way to use talents in science in the service of people in need.
Biography
Dr. Joanne Harley Lynn leads Altarum Institute’s Center on Elder Care and Advanced Illness. Previously, she was director of The Washington Home Center for Palliative Care Studies, in Washington, D.C. She was also a senior scientist for RAND, a nonprofit institution that seeks to improve policy and decision-making through research and analysis, and a clinical professor of medicine at The George Washington University, as well as president of Americans for Better Care of the Dying, a nonprofit public advocacy group that seeks to improve Medicare and Medicaid and other aspects of federal health policy.
Born in Oakland, Maryland, in 1951, Joanne Harley graduated with a bachelor of science degree, summa cum laude, from Dickinson College in 1970, and earned her doctor of medicine degree from Boston University in 1974. She later earned a master of arts degree in philosophy and social policy from The George Washington University in 1984, and a master of science degree in evaluative clinical sciences from Dartmouth College in 1995.
Dr. Lynn began working in medical ethics as project director of The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. She was principal writer of the commission’s 1983 report, Deciding to Forgo Life-Sustaining Treatment.
From 1985 to 1996, she studied the course of illness and treatment for ten thousand seriously ill hospitalized patients as part of the ‘SUPPORT’ study to evaluate patient care. The project sought to improve decision-making in the care of those patients.
Dr. Lynn has served more than two thousand patients at the end of their lives in hospice and hospital care, and has counseled families caring for relatives with long-term illnesses, as well as the patients. She oppones legalization of physician-assisted suicide and testified on the subject before the Senate Judiciary Committee in 1998. She instead advocates pain management and focuses on quality of life throughout the last part of life. Dr. Lynn points out that “we penalize physicians who might overuse drugs, but almost never do we even notice if a physician under-treats pain. Certainly, no physician fears losing his license for non-treatment of pain.” She has also written briefs on important court cases, including on the issue of physician-assisted suicide, before the United States Supreme Court.
Dr. Lynn sums up what she feels is a false choice presented by the current medical system, “Would you rather die in pain at home or in a hospital? Would you rather be bankrupted by care in a nursing home or at home?” The dilemma—beyond needing to improve pain management and hospice use—is that Medicare and Medicaid cover costs of certain kinds of care but have no comprehensive policy.
Dr. Lynn has been elected to the membership in the Institute of Medicine and received the American Medical Women’s Association Elizabeth Blackwell Award in 2003.
Question and Answer
What was my biggest obstacle?
In applying to medical school, I encountered substantial overt discrimination. Once in school, I found it hard to find a practice style that allowed one to serve patients well.
How do I make a difference?
First, in serving patients who have few options—nursing homes, home care, and hospice. Second, in thinking through how the care arrangements could serve people better. Third, in generating data that helps to shape the possibilities and to rally support for reform. Fourth, in supporting others who have their own visions and projects that might help those who are very seriously ill and dying, through quality improvement, education, and research. Fifth, in shaping the news and popular culture toward language and awareness that enables reform.
Who was my mentor?
In medical school, Leah Lowenstein, M.D. Since then, mostly I have had problems finding mentors who would stay with the work for long.
How has my career evolved over time?
I have changed careers substantially over time. I started out doing routine clinical work as triage officer of a veteran’s hospital, as a locum tenens, and as a clinician for a university hospital’s geriatrics program. I came to be much more an ethicist and worked with The President’s Commission for the Study of Ethical Problems in Medicine. Then I was more an educator in geriatrics, and administered the geriatrics education and service for an academic medical center. That work shifted into research, as I become co-principal investigator for a major research project, SUPPORT [Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments], which ended up engendering more than 120 peer-reviewed articles. When that endeavor was unsuccessful in improving care, I learned how to support quality improvement in all settings of care for persons with eventually fatal chronic illnesses. In addition, I have become increasingly aware of the need for reforms in Medicare, Medicaid, and other aspects of federal policy and thus have generated a policy advocacy group, Americans for Better Care of the Dying.