Planning for the End: An Essential Piece of Quality Health Care

Our own mortality lurks offstage, way offstage we hope, and yet one piece of it is something we can and should bring onstage: a plan for safe, high quality and humane medical care at the very end. Because if we don’t plan now, things could go dreadfully off the tracks later, at a time when we can no longer speak for ourselves.

I’m talking about health care powers of attorney and living wills, two similar mechanisms for achieving the same end: making sure that we get just as much care as we want — no more and no less. They’re easy to do. You don’t need an attorney. Just fill out some forms and express your wishes as clearly as you can. See my newsletter on end of life planning which spells out details and links to the forms.

I called that issue of the newsletter, “Who speaks for you when you cannot talk to the doctor?”

It’s a more urgent and much more common question than any of us would like to think. Five million Americans are admitted to intensive care units every year, and in the last six months of your life, your odds of landing in an ICU are as high as one in four, in some parts of the country. (There are wide regional variations in how intensely we treat hopeless or desperate medical conditions.)

Susan Jacoby had a thoughtful piece recently in the New York Times on this subject, and as usual with the Times, some equally thoughtful letters to the editor added to the picture.

One letter writer, psychologist Janis Spring, made the point that adult children of end-of-life patients get caught in a terrible dilemma: Do they throw every conceivable treatment at Mom or Dad, not knowing if they would want that or not, yet knowing that the expense could diminish the life savings available for their inheritance? As she said:

The elderly and terminally ill do their caregiving children and themselves a supreme favor by spelling out their health care and end-of-life wishes so no one is left wondering if pulling the plug is an act of selfishness or mercy.

Ms. Jacoby wrote movingly about her own mother’s decision to forgo aggressive treatment when she was nearing the end. Yet she pointed out that only a minority of Americans have completed living wills or have even talked about the subject with loved ones.

She concluded:

There is a clear contradiction between the value that American society places on personal choice and Americans’ reluctance to make their own decisions, insofar as possible, about the care they will receive as death nears. Obviously, no one likes to think about sickness and death. But the politicization of end-of-life planning and its entwinement with religion-based culture wars provide extra, irrational obstacles to thinking ahead when it matters most.

As someone over 65, I do not consider it my duty to die for the convenience of society. I do consider it my duty, to myself and younger generations, to follow the example my mother set by doing everything in my power to ensure that I will never be the object of medical intervention that cannot restore my life but can only prolong a costly living death.

I’m not urging readers to make any kind of self-sacrifice here. If you want aggressive care at the end, go for it. If you’d rather go more gently into that good night, then make that choice. The point is you need to memorialize what you want to do now, while your mind is clear and you are not stricken with the muteness of critical disease.

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