Living Wills

by Will Wilkinson on August 26, 2009

In my latest column for The Week, I try to encourage a mature discussion of the real issues lurking beneath the mythical death panel. One of these is the issue of Medicare-funded end-of-life counseling. I’m in favor of it. Why? First, because I’m in favor of end-of-life counseling and living wills generally. I think it’s important to plan for death, and to make explicit to yourself and your loved ones what you do and do not want for yourself at the end of life while you’re still in shape to do that. Second, because it helps individuals who depend on Medicare to retain control over life and death decisions — that is, it helps keep government from taking control of these decisions. Because I expect that in the absence of something like a living will, the default is to consume more end-of-life care than the patient would choose in a context of reflection and adequate information, I expect that the net cost of Medicare-funded counseling sessions would be negative. Because the financial and professional motives of doctors push in the direction of keeping patients alive as long as possible, I don’t think there’s reason to worry that during counseling sessions doctors will try to talk patients into choosing to pull the plug early. Between an increase in patient control over life and death decisions and potential savings to taxpayers, I find it hard to see what the problem is.

That said, there are interesting objections to living wills, whether or not they involved a Medicare-funded counseling session. A Facebook commenter said this:

Living wills are a mistake. People tend to underestimate how they will adapt to lower quality of life due to age and illness, and how they will cling to each last sweet second of life.

He’s right that people tend underestimate the extent of adaptation to pain and reduced function. That’s the sort of thing a doctor might bring up in a counseling session. But it’s not clear how relevant it is. Living wills, as I understand them, primarily involve questions of what to do when a patient has lost consciousness, or is a state of heavily drugged consciousness, and is being kept alive by a respirator or other apparatus that is substituting for an organ that no longer functions. The big questions are about whether to withdraw active life-extending interventions or not, and under what conditions. If you’re functioning at a level sufficient to revise your living will, you can do that. It’s not like you’re locked into your first draft. And it’s not as if it is possible to set out in advance the conditions under which one would like to be legally euthanized. So I’m not sure I see the mistake.

  • sethblink
    If a conscious person decides not to get a surgical procedure or to take medication that will presumably lengthen their life, nobody considers that suicide. It is a choice. And under the circumstances nothing could be more dignified than being given the opportunity to decide how to live out the final days of one's life.

    All a living will is, is a document made while somebody is of sound mind and body, to let it be known how they would like to live out their final days just in case they are not able to communicate it themselves.

    There is nothing in the health care legislation that encourages euthenasia or even living wills. All there is is the encouragement for health care professionals to explain these options to patients.

    The arguments that are being made against this legislation are ludicrous.
  • Alz
    The bureaucracy should not be involved in individual decisions about life. ...a ginormous mistake.
  • uknowbetter
    Amusing that you trust the government to kill people in war, don't trust them to cause them discomfort or pain in war, and trust them to tell law-abiding citizens when they should die.
  • kaicito
    Categorically stating living wills are a mistake may have been a case of "comment in haste, regret at leisure". My problem is with provisions we make in one time, place and health state for a very different time and health state, when we cannot know how much our perspective on illness and the value of life even at reduced levels of function may have changed. As you say, these provisions are for medical conditions of limited consciousness; we do not, however, know what neurological processes may be active even in such circumstances where you are in no position to change the will.

    A statement (taken froma Finnish model form) like ‘If I had an incurable disease or I became seriously disabled, I should not be resuscitated, if there is no hope for recovery,
    and if the resuscitation would not lead to ability to live an autonomous life’
    is problematic on several levels. Apaprt from the question of who determines whether or not there is hope for recovery, a well person is likely to vastly underestimate the value he or she will place on even a non-autonomous life at a future juncture.

    That said, a discussion of the conditions of ending life-extending interventions is legitimate and necessary
  • Will, the consensus advice nowadays is to never mind so much about a living will as such but to focus on naming a health care proxy/surrogate decisionmaker. See my piece on this: http://tinyurl.com/8zmzdy.
  • Thanks Kevin. That's really helpful.
  • Mudley
    The problem I have with the living will provisions is that the bill would have this done by a doctor, rather than a lawyer. It sounds like a small, maybe even beneficial difference, but the doctor-patient relationship (as opposed to lawyer-client) is one where one side assumes an air of authority that I feel is incompatible with the idea of a patient-guided decision. If this were being done by a lawyer, most lawyers would simply discover what kind of life the client wishes to lead and would help write up a living will in accord with those preferences. I'm not sure that we could discover the patient's true wishes if a doctor were running the discussion; the biases of the professional would undoubtedly leak through. I don't think most doctors can be impartial in that situation.
  • ghostbuck
    I am very lucky to have been in medicine for a number of years so the terms in Living Wills do not daunt me. I have had one since I was in my early 20's and watched my first patient suffering through a terminal illness and serving as a human experiment for med students because they did not have a Living Will and were kept as an animated science project. It was horrible.

    Since that time I have explained the medical terminology to many family members and friends as they looked into a Living Will. I cannot imagine a lawyer would be able to explain the intricacies of inserting a feeding tube or would be able to explain that brain death is death despite the fact a respirator can you your body breathing and heart pumping for quite some time despite the fact you are dead and you aren't getting better. I have heard friends who are in the legal field as paralegals confuse brain death and coma and tell people that it is possible to "wake up" even if there is no brain activity.

    No, a medical person should be consulted to learn the real extent of extreme measures that can be employed to prolong life and even prolong the appearance of life in our current medical settings.

    I would disagree with Mudley that the doctor-patient relationship is based on one person assuming a air of authority. If that is the relationship he/she has with their physician, I strongly urge them to run quickly to a new healthcare provider. The proper relationship in the clinical setting is one of partnership where responsibility for the outcome is shared.
  • You need a doctor to lay out and explain the medical details of various contingencies, and to answer often very detailed questions about them. That's what the counseling session is for. It doesn't make a lot of sense to consult a lawyer concerning the details of end-of-life medical care in various scenarios.
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