The Inadequacy of Living Wills

My indefatigable daughter, a palliative care social worker, alerted me to a recent article in The Wall Street Journal that points out the inadequacy of living wills.  In a living will, you specify how you want to be treated if you become seriously ill.   Once your wishes are known, your health care proxy can make decisions for you when you become too ill to make them yourself.  The living will removes the health care proxy’s guess work.  Or so it was thought.

The WSJ article gave an example of a man whose living will called for withdrawing life support “if there was no reasonable expectation of regaining a ‘meaningful quality of life’ but didn’t describe what that means.”  In an earlier post I wrote about a man who told his daughter that for him a meaningful quality of life meant being able to watch football games on television and to eat chocolate ice cream.  That would not be enough for me, but the point is that one should let one’s health care proxy know what one considers a quality of life worth living.  For the record, I’d want to be reasonably pain free and able to recognize and understand people, either visually or aurally.  The ability to eat vanilla ice cream with caramel sauce, while greatly appreciated, would not be a necessary condition.

Another problem with living wills is the uncertainty attached to medical diagnoses.  The article’s author wrote that her father, in a coma, was hooked up to a ventilator.  His living will stated that “he didn’t want to be kept alive if he was terminally ill, or in an irreversible vegetative state.”  When he woke up, said his neurologist, there was a good chance he would have suffered severe brain damage.  What were the odds?  The doctors didn’t know.  The family postponed a decision, and fortunately her father woke up able to make decisions for himself.

The article quotes Lee H. Schwamm, vice chairman of neurology at Mass General, who says that “even when he thinks he can predict a patient’s outcome after a stroke, he is wrong 15% to 20% of the time on major outcome measures, such as whether a patient will be able to walk again.”

In my living will, I state that I do not want life-support treatment if my doctor and another health care professional both decide that (a) I am close to death or (b) I’m in a coma and not expected to wake up or (c) I’ve suffered severe and irreversible brain damage and that life support treatment in any of those cases would only delay the moment of my death.  There’s still room for incorrect prediction here, I suppose, but it seems to me to be pretty slim.  But we worry about the wrong things.  I’ll probably be run over while crossing the street, looking at a pretty girl instead of at the traffic.

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