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Just about every time there is a media event surrounding a legally-contested end of life scenario, we’re told to sign a living will. Fill out the Five Wishes, we’re told.

But, of course, as I write in The Art of Dying, those documents aren’t all that helpful. Every end of life situation is unique, with uniquely difficult prognoses. Who can say, at age 65, what they would want to have happen to them under every conceivable health situation for the next 35 years? As I write, a living will is good to have. It is a piece of paper that doctors and hospitals will pay attention to, should the need arise to make them pay attention, or if there are disagreements or uncertainty among family members. It also clarifies for family what is, and is not, desired.

However, the best use of the living will is as an excuse to get together with your family and/or your doctor and talk about your end of life wishes. I’ve done it, and in fact, I don’t think I need a living will. Should I be unable to make health care choices, my wife knows what I would want.

So the following study confirms what I’ve written. The study found that “Living wills fail to capture patients’ end-of-life care wishes because they do not ask about the real-life scenarios.”

“If you talk to people in more detail, there’s more nuance to their decisions than just results from a simple question about what they want in a living will document,” said Charles F. von Gunten, MD, PhD, editor-in-chief of the Journal of Palliative Medicine.

“It’s the conversations that these documents stimulate that is the most important,” he said. “When physicians bring this up, the question is not, ‘What do you want us to do?’ and write it down, but, ‘Why?’ What are the principles? What are your values that lie behind your preferences? It’s those values that are likely to help others make decisions for the patient, rather than just reading a document.”

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One thought on “Living Wills Not All They’re Cracked Up to Be

  1. Thanks for this, Rob. I thoroughly agree. In my experience (personal and professional), it is always a trusted other who makes the decisions, not a document. Depending upon an individual’s age and life situation, it might be a parent or an adult child, a sibling or a spouse. But any way you slice it, it’s always a person making decisions if the patient is unable to make them for him or herself.

    It is a mistake for someone to believe that filling out a form or merely having a living will is going to shelter family members from making tough decisions. The document is, as you say, a tool for communicating about these matters. The best situations occur when families have talked through their thoughts and feelings, with or without a living will.

    In the busy-ness of summer, I haven’t made it through the book yet. You may touch on this. I think it is important for families to talk about the various forms of surrogate decision-making such as substituted judgment and best interest. Ideally, a family member knows enough about the patient’s wishes to substitute their own judgment according to the patient’s values, in the absence of the patient’s ability to express his or her wishes. More often, I have found, family members make decisions they genuinely believe will be in the patient’s best interest, but may be more in line with their own values because they’ve never taken the time to understand the patient’s values . . . usually because these are difficult issues to discuss.

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