Getting things right in the face of death: Editorial [#PFD]
John Gear
Dying right can be difficult. The profusion in recent years of living wills and health care proxies has created the popular impression that things will go as stipulated as long as medical personnel read all the paperwork. Sadly, that's only kind of true.
The practical reality is that emergency medical technicians correctly see as their task keeping people alive and conveying them to the hospital alive. Because they're good at their jobs, they often do – even when the potential outcome of their success is failure for the terminally ill person who never wanted to end up, say, on mechanical life support systems.
Ethicists often use the term slippery slope to describe how quickly choices engulf patients once a course of treatment is chosen or has been chosen for them. Often the choices fall to others. A discussion no distraught family of a comatose patient ever wishes to undertake is: What do we do now? It is a discussion, too, that the voiceless would likely not wish upon family members.
Susan Tolle, a physician and teacher at Oregon Health & Science Universityin Portland, knows about the complications of end-of-life decisions first-hand. She sees patients but runs the institution's Center for Ethics in Health Care. And since the early 1990s she has helped pioneer in Oregon the Physician Orders for Life-Sustaining Treatment (POLST) movement, which helps terminally ill people decide in advance the levels of care they would find acceptable as their diseases progress.
Unlike a health care directive, a POLST form acts as a doctor's order, not a guide, and it is signed by a doctor. When properly registered, the POLST is accessible for all medical personnel to see, and its preferences are binding: Wishes become clinical directives, giving certainty to the unlucky or those who are not diagnosed as terminally ill but obviously close to death.
Earlier this month, the University of Chicago conferred upon Tolle the MacLean Center Prize in Clinical Ethics for her work on POLST. This is a big deal for Tolle, certainly, and her center at OHSU. But it may be bigger yet for patients nationwide in seeking to lend dignified shape to the end of their lives. POLST is officially available in Oregon and West Virginia but has been endorsed for adoption by 16 other states while it is under review in 26 more. That's called impact.
Significantly, POLST isn't for everyone. It is limited to those people who already are seriously ill or so frail that it is obvious death approaches – a 55-year-old person who survives a heart attack and faces years of life ahead is not a candidate. But even when it becomes a useful tool, POLST is no ticket to euthanasia. Instead, POLST is a rational instrument stipulating medical management at the point the end of a person's life comes reliably within sight.
It seems fitting that POLST, a humane but strictly-business idea, is championed by Tolle, an internist who shuns the spotlight and is known for deeply engaging her patients. In an interview with The Oregonian's editorial board, she issued a matter-of-fact but refreshing note about doctoring: "Respecting patient wishes is part of the job description." She declined, however, to pocket the $50,000 attached to her prize, instead plowing it into OHSU's ethics program to underwrite the costs, among other things, of creating an explanatory POLST video in Spanish.
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