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Tuesday, December 24, 2013

The Relentless Push for Assisted Suicide Legislation

Relentless. Those that seek to pass assisted suicide legislation into law are relentless. Nothing will disuade them from their goal. I have not observed this sort of commitment outside of religious or political fanaticism. I am not suggesting the people and organizations that advocate for assisted suicide are fanatics. Quite the contrary, most are good people with a strong opinion on an important topic. Most that advocate for assisted suicide are white, middle aged, and well educated. I will acknowledge they have good reason to be concerned about the way we die. To witness the bad death of a parent, spouse, sibling, child, or close friend is a horrific life changing experience. What advocates fail to grasp is people die badly for cultural reasons. Americans fear death and value autonomy above all else. I find it tiresome to hear people state that when I cannot control my bladder and bowels I want to die. I will not let another person wipe my ass, dress my body, and feed me. I would rather die than go to a nursing home. All of this undermines a narrow concept of autonomy.

I too bemoan the fact people die badly. However, assisted suicide legislation is not the answer. We simply do not need such laws. I have long wondered why people insist on pushing assisted suicide legislation when what is need is a national discussion about end of life in general. My recent experience in Boston testifying in opposition to H1998 helped me understand where proponents of such legislation have gone wrong: they have turned the debate surrounding the end of life into a public policy question.  At no point are the larger cultural implications of assisted suicide legislation considered. This reduces the debate to be about individuals rather than about the social forces that drive one to conclude their life has no value and death is preferable to life. To me, this is a socio-cultural tragedy not an individual failure or issue of choice. More to the point, lives are at stake. This was on full display symbolically in Boston. Proponents of assisted suicide wore blue stickers that read “My life. My Choice. My death”. This slogan is wrong. Simply put, no human being dies in a social vacuum. Death is never about an individual alone.

Recently I came across an article circa 1996 by one of my former professors, Cheryl Mwaria. In “Physician-Assisted Suicide: An Anthropological Perspective” she wrote “Missing from this debate is a discussion of the social  consequences of hidden expectations and obligations with respect to access to health care, allocation of resources, terminal and chronic illness, disability, difference, suffering, and the nature of death itself”.  Anthropologists have known that the end of life and suicide are perceived quite differently from culture to culture. This is not exactly news to most social scientists. After all one of Emile Durheim’s most famous texts is Suicide written in 1897.  Durkheim observed that there were four types of suicide: Egoistic, Altruistic, Anomic and Fatalistic. For those interested, I urge readers to take a fresh look at Durkheim. I have and in conjunction with the work of Margaret Pabst Battin’s Ethical Issues in Suicide I think it is very hard if not impossible to ignore the cultural reasons why people choose to end their life. Thus the sticker My life. My choice. My Death undermines our ability to understand the social mechanisms that can and do lead to unnecessary deaths. Those most at risk are those with chronic illnesses, the terminally ill, the elderly and those with a disability. Let me put it more bluntly, my life is at risk.  

Those that argue assisted suicide is about individual choice, the relief of pain and suffering are being disingenuous. People do not choose to die because they are in pain. People die because their life lacks meaning and they fear losing their autonomy.  But groups such as Compassion and Choices that lobby for assisted suicide legislation never define what autonomy or dignity is. A good death is not defined by those for or against assisted suicide legislation. It seems to me a good death can radically differ from one person to the next and from one culture to another. Compassion and Choices would have people believe there is a uniformity in the way people die. This is simply incorrect from a social scientific viewpoint and constructed on sloppy thinking. As Mwaria pointed out a term such as death with dignity encompasses a hidden assumption: “that life with a profound disability is lacking dignity. There is  a genuine and warranted fear on the part of many people with profound disabilities that their lives will devalued, considered not worth living”. This plays out in a myriad of ways throughout the life cycle but is most apparent at the start and end of life. Trisomy 13 &18 was until recently considered a condition incompatible with life. Thanks to the work of Barb Farlow and others this belief is changing. Even staunch advocates of assisted suicide such as Battin concede what is known as the social burden argument is “problematic” with regard to physician assisted suicide. Let me be more blunt: people with a disability have good reason to fearful because physicians who do not know anything about life with a disability are the experts and gate keepers when it comes to assisted suicide.  What physicians know is the cost in terms of care and finance can be enormous. Here enters scholars such as Peter Singer and other utilitarian philosophers. They have changed the cultural perception of death in academic and popular culture. Rarely do I hear people discuss how we can compassionately care for the sick. Instead the phrase patient centered care is thrown about as the panacea that can correct all wrongs. In reality patient centered care means you are on your own. I never hear people discuss the need for social supports for people with a disability. What I hear and read about is the efficient expenditure of limited health care resources. For most this is an interesting topic of discussion. It is an abstract discussion seeking to help the greater good. For me the subtext is obvious: I am an expensive person. My existence and others like me is costly.

Clearly I am not in a warm and fuzzy mood on Christmas Eve. I am seriously worried about my future. I am a white, single, middle aged man who will grow old alone. This scares me. I am not afraid of dying. Death is inevitable and I plan to squeeze every last ounce of energy out of my body. A body that has served me well despite being paralyzed. I will not under any circumstances go gentle into that good night. I am not worried about myself. I am worried about a nameless and faceless physician who I do not know that will decide I have “suffered enough” or lived long enough. Perhaps I do not need those life saving antibiotics. Perhaps this physician will paint a gloomy picture of the future that any sane person would find unacceptable. I do not envision things getting any better.  


Ronn said...

Bill: Thanks for this thought-provoking post.
Question: Given the nearly 15 years of data from Oregon as a reference point, might the push for assisted suicide (or 'medically assisted death') legislation be merely that: the desire for legalization alone?

I throw this out as a possibility because in a state that both passed and later upheld their own PAS law by referendum, you'd think that a sizable number of Oregonians would avail themselves of the benefits of their hard-won legislation. But this simply hasn't been the case. I believe the average number of terminally ill Oregonians who actually utilize this option is around 45 a year (and possibly less; don't have the OHSU data in front of me). Hospice and palliative care in Oregon is readily available, widely utilized, and reportedly first-rate by American standards.

My comment is neither a defense nor a condemnation of medically hastened death. I guess what I am wondering is whether this "relentless push" (as you put it) for legislation is mainly about the perceived security of having the option if one needs it. Because ideological arguments aside, the utilization data seems to support this thesis. A slippery slope may still exist but from what we've seen in Oregon so far, it has been closer to a plateau.

Whether this low pattern of usage will be mirrored in other PAS states remains to be seen. The past is not always prologue.

Your thoughts?

Ronn said...

Peace: " At no point are the larger cultural implications of assisted suicide legislation considered. This reduces the debate to be about individuals rather than about the social forces that drive one to conclude their life has no value and death is preferable to life."
Beautifully put.

Autonomy for its own sake and disconnected from context will not necessarily result in good outcomes for individuals or society.

william Peace said...

Ronn, When you boil down the statistics from Oregon and Washington little is revealed beyond demographic information. I find the required reporting grossly inadequate but this is beside the point. The statistics to me demonstrates that the people who want and relentlessly push for assisted suicide legislation are wealthy white men who have had complete and total control their entire life. People talk about wanting a choice when the reality is they fear losing control. These same people who have complete control over their life do not care nor are they willing to think about the implications of assisted suicide legislation and how it could impact others. The talk about safeguards but this is a smoke screen. The relentless push is of resisted suicide legislation is in fact an extreme form of American narcissism gone wrong. They are oblivious to the legitimate concerns of others. A part of me pities their inability to consider the olives of others.

william Peace said...

Stephen Mendelsoh wrote the following on Facebook.

Excellent post. Plays off my testimony attacking "My Life. My Death. My Choice" as Ayn Rand radical individualism and Social Darwinism: We need to keep the focus on this angle.

BTW, one minor correction, the stickers are green with the my,my,my in blue, e.g.

E Fischer said...

I think Ron makes a very valid point about the actual number of people who avail themselves of the 'service'.
I am not against 'assissted death' per se, but am on a personal level. In the Netherlands assisted death law was passed without any public discussion but on the ground only about 30% of physicians are willing to participate. Hospices will take the task and, in my experience with my mother's death by euthanasia in Holland, once the papers are signed, they will decide when to begin the protocol, without explicitly notifying the family. Even this is not the biggest issue. My mother had expressed in her thirties that once she would become incapacitated she would prefer to die. This came from a deep personal belief, perhaps from early life experiences, personal philosophy, but definitely not from a lack of social care (as exists in Holland). So the degree of support is not necessarily an issue, sometimes it is a very personal decision and euthanasia has been happening de facto long before legislation. This does not diminish from the need to establish better safeguards. In government reports it is clear that many cases of assisted death go unreported in Holland, usually these are cases of terminal illness, but the law is being ever expanded. The last two new proposals are to allow the chronically depressed and children as young as age 12 to apply for euthanasia.
I know your point of view Bill, and for the most part share it; once it is accepted policy an atmosphere of death as preferred option is created and many who do not possess family support will die as a result of physicians' decisions. But the problem indeed, as you so often state, is not really the legislation but people's perception of life as an incapacitated individual. What made my mother decide not to prolong her life, though she could have? She didn't want to be a burden to her family. Had i been given the opportunity I would have argued the point with her and if I had lost that argument I would have tackled the subject of how to die because especially there, the recommendations are problematic, not only for the chosen method, but because a picture is painted by a medical professional which can be aimed at comforting the patient, in effect cajoling them into a hasty decision.

william Peace said...

Eric, Great to hear from you. It's been a while and I hope you and your family are well. Your comment reinforces my belief that end of life care and assisted suicide are first and foremost a cultural issue. All the legislation in the world and even the best medical care cannot solve the problem. The problem here is insuring people die well. Thus it is no surprise to me that certain cultures will embrace assisted suicide. The Netherlands being a prime example or the Northwest Coast of America (Washington and Oregon). What we need is not laws pro or con assisted suicide but rather a national discussion about how we approach end of life care and death itself. After participating int he democratic process in Boston I am convinced the law cannot help.

Moose said...

"People do not choose to die because they are in pain."

This is not true, and thinking about it makes me cry. It makes me recall people I've known who died in horrible, uncontrollable pain. There are cases, burn patients, cancer patients, gangrene patients, where the patients are given so much pain killers that their bodies are near shutting down from it, and yet they are still in excruciating pain.

I cannot understand the thinking that it is better to let them continue to suffer rather than push that medication over the edge and let them go in peace.

There's a myth that all physical pain is controllable with "enough medication" but I can tell you that this is not true, not at all. It is, thankfully, uncommon, but it happens.

I thank God every day that my family believes in not extending life beyond its clear end, and is against the idea of prolonging life for life's sake when someone is clearly suffering and it is untreatable.

william Peace said...

Moose, I think this is the first tie we disagree. I separate suffering from pain. When I refer to pain it is physiological. Based on my reading of the medical literature, largely what is written by pain specialists and palliative physicians, there is no reason why people should die in physical pain. In the very rare instance pain at the end of life cannot be relieved death can be hastened via terminal sedation or voluntary suspension of eating and drinking. Like many others who have seen loved ones die in physical pain that is a failure of the physicians involved. Again, I am basin my comments on my understanding of the medical literature. Suffering is an entirely different matter and subjective. There all kinds of suffering one can experience. I hope this clarifies my views.

Lynn said...

Moose, I too have experienced that the commonly-made statements about pain always or nearly-always being controllable do not bear out in real life. I have seen people go through things that haunt me. For that matter, I have known people who do *not* have life-limiting illnesses but who have severe chronic pain that is very poorly controlled. The medical profession is nowhere near effective enough at pain control to merit the glib statements we sometimes hear about "Pssh - pain can be controlled."

At the same time, I also think that in the specific context of a discussion about assisted suicide legislation, the "people do not choose to die because they are in pain" statement is largely true. Situations unfortunately do exist where the only alternatives are either uncontrolled pain, or pain-control intervention that will inherently shorten or end life. But those aren't the situations that necessitate a legal/legislative paradigm of "assisted suicide." We don't need assisted suicide legislation to allow physicians to control pain even if doing so ends up killing the person. Such treatment is already permitted and legally protected. It ought to be the accepted standard of care unless the individual specifically chooses to endure severe pain in order to prolong his/her life. The extent to which it is NOT the standard of care is a problem and a failure of both our medical system and our culture, but legislation to allow assisted suicide isn't a necessary or even relevant component of fixing that problem.

So what happens is that proponents of assisted suicide legislation end up utilizing people's fear of dying in pain in order to "sell" initiatives that are not really ABOUT the problem of pain at all. Then, when opponents of these initiatives try to refute this disingenuous narrative, they get painted as being dismissive of the problem of pain. It isn't that pain is not a real and important problem that deserves more attention and better solutions. It's just that spinning assisted suicide legislation as a solution is a bait-and-switch, because people with painful terminal diagnoses need better care (which may indeed shorten their lives), but their access to better care isn't and will not be through laws like this. The people who access "care" through the procedures created by assisted suicide laws tend to be those whose barriers to an acceptable quality of life are ones of disability, inadequate social supports, and economics.

All of which is a long-winded way of saying that I don't think what you're saying and what Bill is saying truly disagree. What creates the appearance of disagreement is the lack of a clear shared understanding, within the larger conversation, of what assisted suicide laws are really for, who they protect, and who they put at risk.

Ronn said...

Lynn: The people who access "care" through the procedures created by assisted suicide laws tend to be those whose barriers to an acceptable quality of life are ones of disability, inadequate social supports, and economics.
While this remains a legitimate concern, the demographic information to date from Oregon does not show this. Quite the opposite, in fact.

Lynn: It's just that spinning assisted suicide legislation as a solution is a bait-and-switch, because people with painful terminal diagnoses need better care...but their access to better care isn't and will not be through laws like this.
Perhaps, but it has also been argued that since providers in PAS-legal states are not compelled to offer PAS to their patients, legalization may encourage such providers to learn more about hospice and palliative care and make more timely referrals. (Hospice is still widely underutilized.) Also, in PAS-legal states, it is possible that terminal patients who are suffering from treatable depression may be more easily identified and provided with alternatives when they raise the topic of assisted dying. As Bill and others have stated, both pain and (existential) suffering can be treated in a variety of non-lethal ways.

Again, I am not advocating for medically hastened death laws. I just don't share the same level of concern about the consequences should wide-scale legalization occur. People in the U.S. demonstrate a strong cultural preference to live as long as possible, as evidenced by the fact that approximately 28% of Medicare spending is in the recipient's last 12 months of life. No niche law is likely to change this pattern of utilization IMO.

william Peace said...

Lynn, As always a thought provoking comment. I agree Moose and I are not that far from mutual agreement. No person should be in pain at the rend of their life. The solution is not more medication or terminal sedation but trying to establish under what circumstances would a good death occur. This is a cultural issue first and foremost.
Ronn, The problem with the statistics coming out of WA and OR is they amount to nothing more than basic demographic information. I find this deeply objectionable. If physicians are in the business of ending life--and they are the gate keepers-- I would think we need to know exactly what is going on. What does it mean that the people who use the death with dignity laws are mostly white, well educated men with a terminal illness? The answer to me is obvious: they are control freaks unable to live life that does not permit complete autonomy. This is not a medical issue but a cultural problem. My worry is for the disenfranchised who are the opposite--in a cultural milieu that permits ending the life of a patient how many deaths are unreported or the direct result of choices that will lead to a premature death. Again, this is cultural problem.

Ronn said...
This comment has been removed by the author.
Ronn said...

What does it mean that the people who use the death with dignity laws are mostly white, well educated men with a terminal illness? The answer to me is obvious: they are control freaks unable to live life that does not permit complete autonomy. This is not a medical issue but a cultural problem.
I like your question because it is the type of open-ended query that anthropologists pose during the early stages of research.

I don't like your answer as much because (sans research) I think it is an uncharacteristically harsh and inaccurate generalization. Having worked with hundreds of dying patients and their families navigating difficult end-of-life decisions, I have encountered precious few "control freaks." And the majority of these now-dying individuals have indeed lived for months (and in many cases, years) with nothing remotely resembling "complete autonomy" that you claim they can't live without.

I understand the larger argument you're making and how strongly you feel about it. Because of my respect for you, I would just ask you to consider making that argument in a manner that doesn't paint with such a broad brush. Because when you do, you risk 'painting over' the unique lives and experiences of some very good people in the process.

Just as bipedal folks like myself have a very limited understanding of disability, non-terminally ill people struggle to fully appreciate what it feels like to be dying. The bull always looks different when you're the one in the ring.

william Peace said...

Ronn. Ouch. You slapped me down hard. I am indeed guilty of making a harsh over generalization. Remember I shoot from hip here. Sometimes I Let My Emotions Run hot.