“Advance Directives”: Would you sign this standard form?

I am assuming that the issue I’m about to raise is not purely personal, but rather one that could affect most of us and that feminists probably have illuminating things to say about it.  I take it that the form I’m describing below is absolutely standard.  I am now inclined to think it would be a bad idea to sign it, and I cannot understand why it is the standard form, when the general advice is that one sign one.

So I am looking at with the possibility of filling out an “Advance Directive,” which specifies what I want to happen when I am “unable to make medical decisions about myself because of illness or injury.”   My understanding is that the directive has legal force and it has to be notorized, witnessed and so on.

It has two major clauses.  One starts “if, in the judgment of my physician, I am suffering with a terminal condition from which I am expected to die within six months, even with available life-sustaining treatment provided in accordance with prevailing standards of medical care.”  The second is similar except that it is about being in “an irreversible condition so that I cannot care for myself or make decisions for my self and am expected to die without life-sustaining treatment…”.  One’s choice is to keep the life-sustaining going or to have it cut off, with the understanding that suffering is to be minimized in the latter case.

The picture that initially comes to mind is that one is lying comatose and on a ventilator.  However, “life-sustaining treatment” can cover just medication.  Blood thinners needed to prevent a stroke presumably can count as life-sustaining.  Procedures like dialysis would also be included, I think.   “Irreversible conditions” include those that can be managed even if not cured. 

The “my physician” sends off alarms for me.  The directive gives one physician the power in effect to decide whether my life is worth living.  One might think that the directive applies only when one is mentally incapacitated, but it is more accurate to save that it applies only when someone decides one is mentally incapacitated.  Nothing specifies whether the incapacity is temporary or permanent.

In addition, there are situations when one can have a temporary mental inability; for example, in the case where one arrives at a hospital incapacitated from a stroke, damage from which one can nonetheless be lessened greatly with swift medical intervention.  Apparently cystitis can make old people mental incompetent as can being moved around a hospital, which the elderly can find extremely disorienting and confusing.

Given the evidence suggests that white men are more likely to have life-sustaining interventions, I think there may be a concern with this standard form  for people of color, white women, and perhaps most elderly. 

I should add that I have had one personal experience with such a situation.  My 86-year-old father was in a hospital because he had a heart attack.  He was sort of minimally rational and got disoriented when he was moved around.  The question arose whether he should be discharged with life-saving medication that had a particular downside or not.  He was completely and entirely cut out of the decision-making even when he became much more rational. 

So what do you think?

7 thoughts on ““Advance Directives”: Would you sign this standard form?

  1. My advance directive is I want to survive as long as possible and I don’t care how much it costs or how inconvenient it is for my relatives or medical personnel. Sorry, I’m just not one of those nice altruistic people and I’m not going to let myself be put down under the rubric of “quality of life” or “death with dignity” or any other such bullshit.

  2. Thanks for this post. I do think there are important questions to ask about advance directives and gender. But I wanted to mention a few things first.

    Most states do not require a notary for an advance directive to be in effect. Most do require two witnesses.

    You write, “The directive gives one physician the power in effect to decide whether my life is worth living.”

    But this is not quite right. If you look again at the wording, you will see that what is up to the physician is the determination of whether you are suffering from a terminal illness. This is a medical decision, with legal aspects, on which the scope of your agent’s power to make medical decisions for you may in part rest.

    You don’t mention the part of the form for specifying an agent, but this is usually the first and most important part of an advance directive (Five wishes — http://www.agingwithdignity.org/five-wishes.php — is a very good form, but your state will have forms for free download as well). The boxes you check — the ones you mention in the post — are not usually meant as direct instructions for a health care provider, with no interpretation or discussion. Rather, they are meant to help guide your agent, in joint collaboration with your health care team, in making a decision that is in keeping with your own wishes, as stated in the form and elsewhere.

    As for incapacity, most clinicians are aware that some forms of incapacity, such as delirium, are temporary. The best clinicians try to enhance decision making capacity whenever possible, and if they know disorientation increases at certain times, they will wait until the patient is better able to participate in making health care decisions. What happened to your father was wrong, but I’m not sure it can be blamed on his advance directive.

    There is one gender related issue with advance directive which I have encountered, that may be of interest: At least in my state, a person you appoint as your health care agent can make decisions for you unless and until you say or write otherwise. This includes exes, which can be very problematic for obvious reasons.

  3. Jessica, let me clarify. I meant “in effect” to signal that I wasn’t speaking about the literal wording. I am worried about what can happen when the letter of the law is fulfilled. As when people of color are given less pain medication. The physicians good judgment allows all sorts of leaway regarding who is consulted, what the prognosis is – and so on. And underneath that there are arguably value judgments.

    The agent is specified on another form. In my case, that isn’t a great help. I have a loving husband and a loving son, but my husband is always prepared to believe the worst medically and my son is quite easily bullied by doctors, as indeed I can be.

  4. What Jessica says. Many people fear being overtreated at the end of life, as not all “life-sustaining treatment” is benign, and some of it increases one’s suffering. That’s why the U.S. Patient Self-Determination Act became federal law (in 1990) in the first place.

    As I understand it, where gender plays a role is that in some states, if you have appointed a proxy for health care as a part of your advance directive, you are now permanently unable to make decisions for yourself, AND you are pregnant, the proxy is not allowed to withhold or withdraw life-sustaining treatment on your behalf.

  5. Hilde, I certainly agree that not all life sustaining treatment is benign, and so I find myself very surprised to now be closer to HEB’s views.

    However, there is a lot of data that race and gender do come in at all sorts of points in medical treatment. Here’s the sort of thing that goes on:

    The quality of health care in the U.S. depends in part on the color of the patient’s skin. Today’s New England Journal of Medicine published three studies showing a substantial gap remains between health care that blacks receive compared to whites. The studies found that there have been marginal improvements since the 1990s. The gap narrowed when it came to better access for less expensive treatments like mammograms, diabetes testing, and heart drugs. But there were still disparities for more expensive treatments like heart and back surgery or joint replacements…
    as a practicing clinician, I like to believe that I take care of everyone – whites, blacks, Latinos, really everyone — the same. But the reality is that at the end of the day blacks and whites are getting very different care and whether it’s me or other physicians who are treating patients differently or there are other aspects of the health care system that are treating patients differently, let me echo what Dr. Satcher said, which is at the end of the day these differences are not acceptable.

    We’re not talking about small differences; we’re talking about substantial differences between the care that whites and blacks receive, differences that have a very profound impact on whether people live or die, what quality of life they have. And that in the year 2005 really should not be something we should be willing to live with.

    That’s the sort of thing that worries me, though I am a white women and so I’m thinking of similar data about heart treatments for women. So I’m concerned a man’s life might be sustained by life-saving treatments where a woman’s would not, just because his extra couple of years are seen as more valuable. Of course, I am NOT supposing anyone consciously reasons this way. But I would not be confident that any one person in an emergency, when biases tend to have stronger effects, would not be biased.

    The above quote is a collection of comments from a 2005 transcript from Jim Lehrer’s newshour; I don’t think things have changed that much:
    http://www.pbs.org/newshour/bb/health/july-dec05/unequal_8-18.html

  6. jj, can you amend the form at all? Perhaps you could change some of the clause so that your agent has more explicit control? (assuming you have an agent, and you trust their judgment).

    I think your concerns are justified. I have also heard that African Americans are less likely to endorse these kinds of directives (and also to sign up to donate organs) because they are aware of medical racism and (rightly) fear that if they consented to the withdrawal of treatment or the use of their organs for donation then physicians might have an incentive to under-treat at the end of life.

    Hilde is also right about the advance directives becoming void if the patient is pregnant. I wrote about that in a blog post, which has links to the states that do not honour the advanced directives of pregnant women (I believe 34 states do not honour the advanced directives of pregnant women). I think this is a terrible assault on women’s autonomy. In the blog post, I suggest that perhaps women should consider adding a “no pregnancy test” if unconscious or otherwise deemed incompetent.

  7. jj: It’s absolutely true that there are horrifying disparities in the U.S. regarding who gets access to good medical care–gender and disability disparities, as well as racial ones. It’s because of these that many people of color and other oppressed groups lay claim to all the care that’s going. So if you want to say that advance directives limiting treatment are drawn up from a privileged social position, I’m with you. But none of that detracts from the point that overtreatment occurs pretty often, especially at the end of life, and is far from benign. And can I just say thank you for spelling it “advance” directives? If one more student writes a paper on “advanced” directives I may have to indulge in a little overtreatment myself.

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