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Thursday, February 5, 2009

Framing the Debate: Assisted Suicide and Disability

It is frigid in New York. When I woke up it was 4 f. and I measure this sort of cold by the creeks and cranks that materialize in my wheelchair when the temperature dips near zero. Since it is too cold to spend much time outdoors I have been doing a lot of reading. Last night I finished Edwin Black's searing War Against the Weak, one of the best books I have ever read about the Eugenics movement in the United States. This morning I read too much about California's Terminal Patients' Right to Know End-of-Life Options Act that was signed into law recently. My reading choices have made me cranky. The assisted death movement has gained tremendous momentum in the last year and I am deeply worried about the implications of recent legal changes in Washington, Montana and California. When I expressed these reservations to a friend they thought I was being reactionary. "Come on", this person said, "you live in the burbs and have nothing to worry about. Hospitals and doctors would never treat you poorly." This assessment is wrong and indicates why the assisted suicide movement has been so successful.

At first glance assisted suicide makes sense. Surely people should have the personal autonomy to decide when their life is not worth living. Terminally ill people should not needlessly suffer when death is inevitable. This seemingly logical position is fraught with error. Terminally ill people rarely take advantage of assisted suicide and substantial confusion exists with regard to exactly who is and is not terminally ill. Life is far more complex and in this regard I often think of the work of Susan Sontag who wrote about her experience with breast cancer. In Illness as a Metaphor she wrote:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick...I want to describe, not what it is really like to emigrate to the kingdom of the ill and live there, but the punitive or sentimental fantasies concocted about that situation... My point is that illness is not a metaphor, and that the most truthful way of regarding illness--and the healthiest way of being ill--is one most purified of, most resistant to, metaphoric thinking. Yet is is hardly possible to take up one's residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped.

Like it or not, doctors, nurses, health aides, administrators, EMTs and the myriad of people associated with what we call the health care system are human. Mistakes are made every day in every hospital in the country and I doubt that will ever change. People that work in hospitals often hold firmly entrenched views and too many rely on preconceived notions that may or may not be accurate. Again, this will not change because we are all too human and prone to error. I know a lot about preconceived ideas because I never cease to be amazed by the overwhelmingly negative perception of disability. In my daily life this is a major inconvenience and source of aggravation. In a hospital setting such negative assumptions about disability are simply dangerous. In part, this is why I can identify with not just other groups of people who have been disenfranchised but those who have extended hospital admissions.

It seems reasonable for health care professionals to inform people who are terminally ill about end of life options available to them. We Americans love full disclosure about as much as we love to sue the pants off one another. What is conveniently ignored is just how debilitating it is to be hospitalized for an extended period of time. When you then factor in age, disability, and recognition that one's life is nearing an end depression is a logical and perfectly sane response. So let me ask what happens when you are disabled, depressed, ill and then encounter a well-meaning person that thinks life with a profound disability is not worth living. Afterall no one wants to be paralyzed and use a wheelchair. Paralyzed people cannot have children, marry, hold a job, and lead a rich and rewarding life. Why even if a disabled person survives they are likely to end up in a nursing home. Who wants that sort life? This leads me to ask is a disabled person really going to be fully informed? Will such full disclosure push such a person over the edge and crave death instead of life? Will a psychological consult and treatment for depression be stressed or will death be seen as a preferable course of action? This is not the sort of personal autonomy I think most have in mind when they think of assisted suicide.

What terminally ill people need is care and compassion. What disabled people need is equality. I do not see how the new California law AB2747 helps anyone except those that want to see assisted suicide become increasingly common. The answer to the needs of the terminally ill and the equal rights of disabled people are not being met by any law that makes death appear to be a valid medical option. This is just too easy, seductive in it simplicity and deadly. What is needed is a system designed to ameliorate the disorientation and social isolation associated with long term hospitalization. I am merely more vulnerable and aware of this having had been hospitalized for prolonged periods of time. So for those that think assisted suicide is reasonable, I suggest a little reading and more thought is required. I am confident the vast majority of people willing to do this will agree life is indeed sweet and worth living. Whether one is disabled or terminally ill is not relevant to this debate, this just makes us more vulnerable to misguided law makers and medical practitioners.


FridaWrites said...

Sontag--oh, she was smart. I need to reread her work. .

Continually I try to reflect (project?) to others that life can be good while living with disability.

I agree with you that people are probably not going to be assessed for depression or even normal grief. Studies have shown that perfectly healthy volunteers spending a week in ICU become disoriented, depressed, lose their sense of night and day, and have sleep disturbances. It doesn't take long, but some of this can be mitigated. If any other group of people became despondent or suicidal, we'd step in and say, "wait a minute!" I agree that the assumptions people make about illness/disability may preclude their ability or willingness to do so.

william Peace said...

Sontag was one of the best writers I have ever read. She forced readers to think. If there is a hell it will take the form of an ICU. These units help critically ill people survive but any mentally alert person will suffer in such an environment.

Alison Hymes said...

Having spent a week in an ICU and 4 weeks altogether tied to PIC etc. and then another 3 weeks with a PIC etc. I have to completely agree that 1)if there is a hell it is an ICU and 2) any significant time in a medical hospital will disorient you, depress you and in my case, and maybe because I was so dehydrated or maybe because of being in the hospital so long, make you passive in a way you nornally are not. And because of my disability, no one told me I was expected to stay 2 months the first stay and I was lying there afraid of being transferred to a nursing home and thinking I would rather die. (my disability at that time being a psychiatric diagnosis)which led doctors not to talk to me directly nor tell me what was going on despite the fact that I was able to understand once the delirium passed.) Anyway, thank you for this and I need to go read Sontag.

william Peace said...

I have not been in an ICU for over a decade yet the thought of being in such an environment still scares me. Sontag always merits reading again and again.

Alison Hymes said...

Yes, forgot to say this was 12 years ago and it still stays with me.

william Peace said...

ICUs have improved slightly in recent years. When my father was very very ill I noted that clocks and small TVs were present in every cubicle. I am not sure this is all that helpful. Theoretically the clock and TV gives one a sense of time.

FridaWrites said...

These things help some. In my experience with other people, phones are still not allowed, nor is internet connection. While theoretically people are too ill to use such in ICU, the reality is that people with disabilities sometimes end up in ICU or CCU because of the greater monitoring needed and for a higher level of disability.

In some places friends have been able to take in music to lighten the mood and talk nurses into having a friend or family member (or a couple) present the entire time for comfort measures and advocacy. ;)

Lack of informed consent is still a big problem in hospitals, Alison. While it's presumed some decisions will be made while we can't do so, I believe that we should otherwise be informed about what's going on with us and what drugs are going into our system. My daughter was enrolled in a clinical trial after birth without my consent--I don't know wth the ethics people were thinking. I've also been given drugs that while not allergies, are going to have stronger side effects (need zofran instead of fenergan, and morphine will make me hurl).

Alison Hymes said...

Oh the stories I can't tell Frida. But I can say informed consent is going out the window Legally in Virginia now for people with severe disabilities and people who are dying.

william Peace said...

Alison, I have always been skeptical of informed consent especially when it comes to people with a cognitive deficit or mental illness. Today, informed consent is in my estimation more about legal protection than extending information to a person about their health care or consequences of a given medical procedure.

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