Lawyers and the Living Will.

Dr. Muriel Gillick has a must-read article up at her site, Perspectives on Aging, about the problems with living wills (advance directives).

She writes that lawyers have taken up the slack in helping elders fill out living wills and the absence of medical input is creating ineffective and vague forms that give elders a false sense of security over control of their end of life decisions:

The living will my parents were given is a classic example of pseudo-precision: “If a situation should arise in which there is no reasonable expectation of my recovery from extreme physical or mental disability, I direct that I be allowed to die and not be kept alive by medications or artificial means or procedures which serve only to prolong the process of my dying,” it begins. What is a “reasonable expectation of recovery?” A fifty-fifty chance? Is a 30% chance good enough? 10%? What does “recovery” mean anyway? Going home and living independently? Living in a nursing home and needing help with bathing and dressing? Going from unconsciousness and total paralysis to wakefulness and the ability to move one finger?

But there is more—the document seems, at first glance, to spell out the answers to these questions. It says “without limitation, I intend these instructions to apply if I am (i) terminally ill, (ii) permanently unconscious, or (iii) conscious, but have irreversible brain damage and there is no reasonable expectation that I will regain the ability to make decisions and express my wishes.” What is meant by “terminally ill?” Does it mean conforming to the Medicare hospice definition of having a life-expectancy of 6 months or less, if the disease follows its usual course? Does it mean death is imminent—in the next few hours or days? Or does it mean having a disease that is uniformly fatal, such as Alzheimer’s disease, which lasts 3-5 years, sometimes longer, from diagnosis until death? What is “extreme physical or mental disability?” Does this mean the most advanced stage of Alzheimer’s, or does moderately severe dementia—in which the individual can walk and talk, but has completely lost his short term memory and needs help with bathing, toileting, and personal care—qualify?