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February 12, 2007

Death With Dignity

In an article on the language we use to cover our fear of death, Geoffrey Nunberg writes:

The choice of words makes a big difference in how people come down on laws governing the choice to die. In a 2005 Gallup survey, 75% of adults agreed that doctors should be allowed by law to "end the lives" of patients suffering from incurable diseases if the patient and his or her family requested it. But when the question was worded as permitting doctors to "assist the patient to commit suicide," only 58% of the respondents agreed. That's one reason supporters of the measures have shied away from talking about "assisted suicide" in favor of a battery of gentler phrases, like "aid in dying," "choice in dying" and "end-of-life choices."

That's a serious drop, to be sure, but the real news there is that even the negatively phrased version commands a solid majority. The prohibitions on physician-assisted suicide have always struck me as insane, an unconscionable and ineffective restriction on what's essentially the ultimate liberty -- the ability to say to life, "you can't fire me, I quit." The laws don't stop individuals from messily taking their own lives, or keep physicians from letting them die slowly and painfully when they refuse further treatment, they merely increase total pain and decrease the ability of the terminally ill to die on their own terms, with dignity and a minimum of pain.

I'd always assumed the laws remained in stasis because assisted-suicide provisions were unpopular with the public. That doesn't seem to be the case. Rather, which politicians really want to be associated with such a bill? Who wants to be the Dr. Kevorkian of the Congress? And given the intense opposition of pro-life groups, there's no upside. So props to California Speaker Fabian Nunez and the other Democratic legislators reintroducing the Compassionate Choices Act. There's no political upside for them, but it's the right thing to do.

February 12, 2007 | Permalink

Comments

Interesting topic, and important. However, a key piece of the picture is missing - that of nurses and the role professional nursing plays in end-of-life care. Please refer to the resources of the Hospice and Palliative Nurses Association or visit to learn more about professional nursing, its demographics, and the critical role that it plays in planning, delivering and managing patient care.

In this particular situation, it's the nurse who usually has the ongoing, intimate and detailed discussions about the patient's wishes, how to carry out those wishes, and indeed, making the plan happen. Physicians, although they are happy to take credit for this, are not the providers who usually implement the plans and the care at the end-of-life.

It's a nurse who's there at the end, who stays with the family, and who takes care of the body after death.

Posted by: N=1 | Feb 12, 2007 10:55:25 AM

Of course, the cynic in me wonders if I really want the insurance company breathing down my doctor's neck to consider "helping my die with dignity" to lower the costs of treatment...

Posted by: Meh | Feb 12, 2007 12:41:51 PM

Oregon has had a death with dignity act in place since 1994.

The law is narrowly drawn and MDs can presribe drugs (but not administer them) to end life if found by multiple MDs to be within six months of death.

Interestingly, more patients are authorized to use this procedure than actually carry it out - see the Oregon annual reports at link above.

The two principle objections are that MDs take an oath to preserve life, not end it, and that various religions are morally opposed to suicide. The Oregon law partly responds to the first objection by having MDs presribe but not administer the drugs. The second objection was overcome by the majority of voters choosing to make this a personal moral issue.

In my opinion, the Oregon law is too narrowly drawn (especially the six months to die diagnosis), and that only a relatively few MDs in the state are willing to write the presriptions. But still, this is a good law and a starting place for later evolution if the voters choose to extend it.

Also, of note: John Ashcroft attempted to overrule the law by punishing MDs who responded to patient requests, and he was ultimately overruled by the US Supreme Court in a 6-3 verdict allowing the law to be active.

The same law also provides for Advance Directives for Health Care, which allows patient control of measures that can be taken to sustain life. This is a very important step, and is recognized by all OR health organizations and providers. Other states also have provided for Advance Directives in various forms.

Posted by: JimPortlandOR | Feb 12, 2007 2:07:46 PM

I have strong but mixed feelings about the right to die. The issue seems simple enough at one level: people should have the right to control their death, and since they may need help, others should have the right to help them. I agree with that, but the realities that go with it make me deeply unhappy and cautious. I'm not sure what the laws should be. Even if they ought to allow for assisted suicide, I don't know what conditions should be attached.

I have some experience with this. I knew a woman, possibly the most alive, beautiful woman I've known. She had ALS, or some disease of that kind, and was at such an advanced stage of the disease that she had to be fed by a tube into her stomach, had to wear a pressurized Bi-PAP breathing mask to breathe, and had to use a modified Morse code to tap out letters with her barely moveable fingers and a specially adapted computer to communicate. She had trouble sleeping because of the breathing mask, had built up a tolerance to her sleeping aid, had problems with constipation, and was generally uncomfortable. To get rid of the breathing mask she would have had to be attached to a respirator in her throat, the idea of which bothered her intensely. Is that a life worth living? Stephen Hawking thinks so. She was completely lucid; she had all the internal life that anyone does. She probably could have kept on living, with proper adaptations, indefinitely until she died of old age in another 20 or 30 years or longer. She chose to have her breathing device removed so she could die, with medication to ease any pain or anxiety, and family and friends at her side. I was the one who removed her breathing mask. It was a legal assisted suicide, because people have the right to refuse medical care, including medical devices.

I could go on with the details of her case, and why it was different from Stephen Hawking's, and different from every other in some significant detail or other. That's part of the problem. There are so many factors that can vary so much. Here's one I didn't mention. She had all her adult life suffered from depression, and had to fight powerful suicidal urges all those years. Now she was suffering from this terrible illness, and deciding whether to live or die, and suffering from depression. How did that affect her choice to die? Might she have felt differently had the depression between better treated? Or even the sleep deprivation, or the constipation, or any number of things that she suffered from that could probably have been ameliorated with proper care? (I should add that there were efforts to deal those things, but they were limited by the knowledge and energy available to deal with them.) I still am not convinced she made the right choice, and the difference is inestimable.

The reasons the laws are the way they are presently have more to do with basic gut morality than paternalism, but I think there are strong paternalistic reasons to be careful about assisted suicide laws. And those merge into strong reasons relating to the rights of the person whose life is at issue. There is a very strong resistance to assisted suicide laws among disability rights activists. Their concern is first that the whole idea of suicide based on quality of life devalues their lives, which sometimes lack the qualities others find essential to a life worth living. And they worry, not without some reason, that tying life and death decisions to quality of life makes it easier to pressure them to choose death, by neglect or active means, or for others to choose it for them, should they be unable to. They look at a case like that above and say the rights that ought to be at issue are to better treatment, and to counseling before suicide is allowed, and so on, and that the just-mentioned effects on others of allowing such suicides must be considered.

I don't know.

Posted by: Sanpete | Feb 12, 2007 2:12:09 PM

Regarding sanPete's concern about depression and assisted suicide, our Oregon law requires psychiatric screening to determine whether the patient's decision is primarily a product of psych disorder. My impression is that it works well, although there can always be ambiguities.
As for quality of care at the end of life, the debate over assisted suicide seems to have improved end of life care, if anything The debate brought the issue into focus, and people support assisted suicide because they are compassionate - they are the same people who advocate improved end of life care - the two are not incompatible, quite the opposite.
The survey results are odd and interesting. The Death with Dignity Act is in fact assisted suicide. It is NOT a matter of allowing physicians to "end the lives" of patients - which always suggests the false image of a doctor injecting a patient with lethal medication. Apparently people are uncomfortable with the "suicide" language. The name of the California bill would seem to help with that.
JimPortlandOR said above that not many physicians are willing to write the prescriptions. I don't have any data on that, but that is not true of the Oregon physicians whom I know.
It is also important to consider all this in light of the "double effect" principle that is well known to physicians all over the US. This says that it is ethical for a physician to order a dose of pain medication for relief of severe pain, even knowing that the dose could be fatal. This is the way many people die under current laws of other States. I support the principle, but I'm sure glad to live in a State that also has a good assisted suicide law. The medical patients I have worked with, who have major illness, feel the same way, relieved that they will not be forced to endure a protracted life that they no longer want. Having the assisted suicide option, even if the individual decides to not use it, removes a tremendous burden.

Posted by: DeanOR | Feb 12, 2007 9:07:12 PM

Dean, requiring a psychiatric evaluation to determine if a choice is primarily due to a psychiatric disorder is good and important, but it doesn't entirely meet my concerns. I think what is more common than a psychiatric disorder being the primary cause is its tipping the balance. I think the woman whose condition I described didn't decide to die primarily because she suffered from depression, but I think that if she hadn't suffered from depression she might well have made a different choice.

I can add that in her case I believe the views of those around her also made a key difference. A very important person in her life couldn't see how anyone in her condition could have a life worth living and encouraged her in her choice to die. I saw that when she was around people who saw value in her life as it was she felt very differently.

A problem here is that you and I want to make it possible for those who want to die to do so, but when we look closely at what that means and the conditions we want to be met, a host of problems arise that, I think, fairly clearly entail that the cost of this important freedom is the loss of lives that should not be lost. And how do you weigh that cost against the benefits? I don't believe in another life, which would make this a very different issue. What is lost when a life ends is something irreplaceable.

Posted by: Sanpete | Feb 12, 2007 9:36:12 PM

I am really glad to see you writing about this. It is a really tough issue to crack - but another important one.

I would take a step beyond Oregon's death with dignity act (one of the factors in the choice to move out here) and also put in provisions to allow terminal patients, who have decided not to be put on life support, or be taken off, to be injected with a fatal dose of pain killers, just prior to the removal of life support. That is death with dignity.

Sanpete -

The difference between the death with dignity act and the status quo, is that physicians are oficialy involved, the patient must see a therapist and it is unlikely to put the patient in a worse position, than their disease allows for. The status quo requires a person navigate the decision alone - at least, without the advice and guidence of proffesionals.

Underlying all of that, it's my body and I should be able to do with it, what I will. Quite honestly, if I have a strong desire to end it, with no health concerns, I should be allowed to get a pill for that too.

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Posted by: judy | Sep 26, 2007 10:39:58 PM

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