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Volume 3 Number 7 March
4, 2005 |
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Making your wishes known For end-of-life instructions, more is better After I wrote about end-of-life decision making last time, some readers wrote to say that they had left any formal instructions, but had engaged in some informal discussions with spouses and other family members. From personal experience, I can't stress strongly enough the necessity of leaving specific written instructions -- especially since studies have shown that even written instructions aren't always followed. "Informal" discussions often have a way of not being considered at all, or seriously misinterpreted. Some readers used the term "living will," which has become kind of a catch-all term that is sometimes inaccurate and, in its technical sense, may not be what you want at all. (Disclaimer: I am not a lawyer and the laws on what can generically be called "advance directives" do vary from state to state. So, it's best to get legal advice if you're concerned about what to do. Please don't construe any of what I say as legal advice.) A "living will" in its truest sense is a legally-binding document -- often presented to you in checklist form -- that dictates what you want done under certain circumstances, often very specific circumstances. While it ensures, or should ensure, that your very specific instructions are carried out, a living will has several drawbacks. First, it's impossible for any of use to anticipate the exact condition in which we might find ourselves at some future time, and it's impossible for us to know how we might feel about such a situation. People can, and very often do, change their minds about some situation they imagined once they find themselves in that condition. Also, what can be considered your best interests might change in ways you don't anticipate, meaning that instructions you make now might not be the instructions you would make, if you could, when the situation comes about. For example, suppose you have left a very clear directive in a living will that says if you are in a coma for 30 days doctors must remove all life support. Now, suppose that you have been in a coma for 15 days and a distant uncle dies, leaving you several million dollars. It's not unusual for wills to contain a clause that a beneficiary must survive the benefactor by a certain number of days to be considered a survivor and thus qualify for the bequest. It may be in your best interest to have the doctors continue you on life support long enough to become the beneficiary of the large estate, which would, on your death, pass on to your children. An iron-clad living will would prevent that, and it's possible that the uncle's bequest could go to someone else, something you would not have chosen had you known the exact circumstances. A much better approach, at least to my way of thinking, is to name a proxy decision maker, someone who will act on your behalf when you are no longer to make decisions yourself. Many people make the mistake of supposing that their spouse or their family will step into the breach and make whatever decisions are necessary. Several problems arise. The most obvious is that the person you suppose will make the decision might not be available. A spouse, for example, could be in an accident with you and unable to make the decision. Or, a spouse might not be competent to make the decision. He or she may be overcome with grief, confused, ill-informed or otherwise incapable when the time comes. If you are in a non-traditional relationship with someone who you hope will be the decision maker, that might not happen. Families are often given precedence over domestic partners -- whether same sex or opposite sex -- despite the fact that in only a few places do families have any statutory legal standing as the proxy decision maker in the absence of a clear directive. Despite this lack of legal standing, most hospitals and doctors will defer to blood relatives or relatives by marriage as the decision makers, and with good reason. Family members, it is assumed, (1) have a more intimate knowledge of what the patient would want, (2) share significant social and cultural values, and (3) have the patient's best interests at heart. Here's where it gets sticky. If we say that the person best qualified to be the decision maker is someone who has those three qualities, then it may not necessarily be a blood relative who fills the bill. Yet, blood relatives are often given the job, as opposed to someone does possess the qualities. When I was working with people with AIDS in the mid-'80s, it was not unusual to see a terminally ill patient who had a partner of 20 years. When the time came to make the important end-of-life decisions, that partner -- who it could be argued met the three criteria I listed above -- was often shoved aside in favor of family members from whom the patient had been estranged for many years. The family members often had maintained an antagonistic relationship with the patient, had no significant shared values, had no real knowledge of the patient's current wishes, and who often acted in their own best interests instead of those of the patient. Supposing that your family will step in as a unit and make the right decisions may work in a significant number of cases. But in many tragic cases just the opposite happens. With no clear direction as to which relative is to make the decision, the task is often taken over by the dominant sibling or, in some cases, even an in-law. Long-standing family antagonisms can come to the surface. One sibling may be able to let go, and another not quite ready (and may never be ready). Often, meetings with families to discuss these issues goes well. And sometimes, they turn into screaming matches and court battles, or at the very least a time-consuming, wearying exercise for all involved. What I have done, and what I recommend to people, is to draw up a document -- something you can either get from your lawyer or from a pre-prepared form specific to your state -- that names a proxy decision maker. This should be someone who has agreed to do it. Then, I have named an alternate who can step in if the first person is unavailable, whether physically or emotionally. Next, I have written an addendum to that document that outlines, as best I can my wishes for care. In that document, I try, as best I can to stay away from "If X happens, then do Y" types of statements. Rather I give a brief rundown of what qualities of my life are important to me and how I would value (or think I would value) my life if those qualities were missing, I go on to specifically authorize withholding or removing life support under certain circumstances. None of these directives are ironclad. They all leave the proxy decision maker a great deal of latitude in assessing my condition and best interests at the time the decision needs to be made, but they also give him or her a clear idea of what I would like. I don't consider the addendum as the last word, nor do I consider it as ordering anyone to do anything. But I think it provides a lot of guidance and, if worse comes to worse, a judge could determine very readily and without hesitation what my wishes were. (I have posted a copy of
the addendum on my Web site and those who are interested can look at it,
copy it and/or adapt it to their wishes -- or ignore it. We don't all have
the same values or desires, but that just points up how important this
exercise is.) Some points that are necessary to remember. If you draw up such a document, spend some time with the people you name your proxy decision maker and go over this with them. It's crucial to their knowing how you feel and gives them a chance to question you on anything that's unclear to them. While this sort of exercise is off-putting to some people, it really has the potential to make things go smoother at what otherwise would be a very stressful time. I have had the frustrating experience of finding out someone had named me as their proxy at a time when I couldn't communicate with them to find out what their wishes were. Also, sit down with your primary-care physician and discuss it. Find out whether he or she is comfortable with carrying out your wishes. If not, you may have to make some hard choices. In these times when it's the new fad for health-care providers to force their religious beliefs on patients, it's best to clear these matters up before they become critical. The point is not to just think about making your wishes known, but doing something about it. Some people are fortunate in the sense that they know their health is in decline, and they have time to make proper arrangements. Not everyone has that luxury and sometimes things progress too rapidly to allow proper preparation. And finally, it's a good exercise to take out your directions from time to time and see if you still feel the way you did when you drew them up, and to determine whether the people you selected as your proxy decision makers are still the most appropriate people. |
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© Copyright 2005 Carlton Vogt |