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Sunday, July 12, 2009

Assisted Suicide: A Necessary but Depressing Debate

In the past I have posted a number of entries on assisted suicide. The well funded, organized, and influential groups that advocate for assisted suicide laws in this country and abroad have enjoyed great success in the last few years. I find their success deeply disturbing for many reasons foremost among them is the logic that provides the theoretical and practical basis for assisted suicide laws deeply flawed. On the surface, the laws that advocate for assisted suicide make sense. Surely no one wants to see a loved on, or any human for that matter, needlessly suffer when death is inevitable. The fact is we humans are living longer thanks to modern medicine and as a result horror stories about the end of life abound. However, when the emotional angst of the assisted suicide argument is removed and one takes a long hard look at end of life issues two facts emerge: first, assisted suicide laws are not necessary and, second, the people who take advantage of assisted suicide laws or the "services" of groups such as Dignitas are not terminally ill.

I have no doubt advocates for assisted suicide completely disagree with my assessment. The debate between those for and those opposed to assisted suicide is not resolved, their disagreements long long standing, and I see no reason to believe common ground can be found. This is unfortunate because too many people needlessly suffer before they die, a situation that must be resolved. But killing people, what assisted suicide seeks to do, is not the answer. Thus it is imperative that the two sides of this debate seek common ground and this is where I think scholars in disability studies and activists in disability rights have much to contribute. Yet such activists and scholars within the field of disability are hopelessly divided, a thought that came to me after reading two fascinating and pointed commentaries by Stephen Drake of Not Dead Yet (see Not Dead Yet blog for Wednesday July 8 entitled "Tom Shakespeare Makes a Less Than Honest Case for Assisted Suicide") and Tom Shakespeare, a British disability studies scholar (See "A Chance for Dignity and Dying", Guardian July 7).

Drake and Shakespeare respective views are radically different. Readers of this blog will likely know Drake's work via Not Dead Yet. Drake is along time and influential advocate against assisted suicide. I consider his blog Not Dead Yet to be mandatory reading for anyone interested in the subject. My views are very similar to Drake and I have the utmost respect not only for his advocacy but his writing. I have a similar respect for Shakespeare but often find myself at odds with his views--at least since 2000 when he made a controversial break with disability scholars in Britain that culminated in his highly polemical 2006 book Disability Rights and Wrongs. Between 2000 and the present Shakespeare has come out in favor of legalizing suicide for terminally ill people. Shakespeare has also been extremely critical if not disrespectful of disability advocates and scholars that oppose assisted suicide. Thus I consider Shakespeare to be the "bad boy" of disability rights scholarship. He is without question a contrarian, one who is not only very smart but seems to take delight in holding views that are at odds with the majority. Shakespeare's views on assisted suicide and the social model of disability are two examples. While I do not agree with Shakespeare's views on assisted suicide he must be taken very seriously. This is why I was delighted to see Drake dissect Shakespeare's editorial in the Guardian in which he advocated as a disability rights scholar for assisted suicide. Like Drake, I found Shakespeare's position and arguments weak and misleading. I also agree with Drake that Shakespeare is simply wrong in advocating for effective assisted suicide legislation in Britain. However, I think Drake could temper his critique because writing that Shakespeare's editorial relies on "easy platitudes, fuzzy assertions and some pretty gross misrepresentations of euthanasia laws" only heightens an existing divide between the two men. In my estimation Drake is correct in his assertion about Shakespeare's editorial in the Guardian but neglects to point readers in the direction to Shakespeare's aforementioned book, especially chapter 8 on "Autonomy and the end of life". Instead of going for the jugular in his pointed critique of Shakespeare I wish Drake had stuck to the facts--they are not only in his favor but on the side of any reasoned argument against assisted. For instance, Shakespeare is clear on the fact he favors assisted suicide for only those who are terminally ill. Yet Shakespeare does not in any way define who is and is not terminally ill. This is not a matter of minor debate but a central issue that gets to the core of assisted suicide at a practical and theoretical level.

Both Shakespeare and Drake know all too well that people who are not terminally ill have had assisted suicides. The case of Daniel James that I have written about in the past is but one of many examples. James death was heart wrenching and highlights why disability rights scholars and activists need to play an active role in the discussion about assisted suicide. Like it or not, people with disabilities are not equal, face overwhelming social stigma, and have a great deal of trouble accessing basic and even substandard health care in this country and abroad. The consequences of these social inequities are profound and place people with disabilities at a high risk. A high risk for what? I can readily envision a world in which it would be all too easy to classify a host of medical conditions as "terminal". People with ALS, MS, SCI, and a host of other debilitating but not life threatening conditions could be deemed terminally ill. Why think of the savings! No wheelchairs would need to be manufactured nor would ramps or elevators be required. If you think I am kidding, you are very wrong. In my lifetime I have witnessed profound changes in the way people with SCI are treated. When I was paralyzed 30 years ago people with high cervical injuries, think Christopher Reeve, died. They did not die from their injury but the belief no person with a high level cervical injury could ever have a good quality of life. Hence such people died of neglect and doctors let "nature take its course". This is both misguided, dangerous and has significant implications for all those that are disenfranchised--the elderly, disabled, chronically ill among many others.

Shakespeare concludes his Guardian editorial by noting that all people, those with and without a disability, should have control over their lives as well as how their life ends. He also pointedly states "being disabled in itself is no reason to die". I do not disagree with these statements but know that in theory Shakespeare may be correct but the reality as I know it is very different. We do not all get to choose the way we die nor are we born equal. We also all have limits, social and economic, that dictate where and how we live. This has an impact on how we access health care and how we end our life. I for one fear old age. I do not fear aging and infirmity. I know all too much about the limits of the human body. What I fear is the lack of social respect and value my life will have as I age. I wonder will the fact my body is not easy to care and labor intensive hasten the end of my life? Will I die of a giant bed sore because the people charged with my care do not have the time or will to regularly move my body if I am no longer capable of doing this? Will my inevitable death be perceived as a release from being paralyzed and hence receive substandard care? These fears are very real and shed light on a social problem that people with disabilities must be a part of in resolving. It is why we must be part of the debate on assisted suicide--we have unique insights that others do not. We are accustom to defending our rights, that is our very right to exist and escape what Harriett McBryde Johnson once described as the "disability gulag". All our voices need to be heard--people like me via my blog, Drake via Not Dead Yet and Shakespeare in spite of the fact I do not agree with his views.


Rachel said...

Nice post. I agree with your views regarding aging. It is good to hear my fears echoed by another.

william Peace said...

Rachel, Most people I have expressed my concerns to about aging cluck like a chicken and reply that I would never be treated differently. I am treated differently as a sentient adult, i.e. in a substandard manner today. I see no reason to believe my social status and treatment will improve in the future as my body declines in old age. Grim thoughts for sure.

Unknown said...

I fear the utilitarian argument, which is the foundation of the euthanasia case. I believe in free choice, and if we apply both of those factors (utilitarianism, free choice), we end up with allowing anyone total access to self-termination. For example, there's a case reported in the New York Times today about a British music conductor who chose to die with his wife.

Euthanasia advocates are up in arms, thinking that his death will adversely influence the cause. But the case presents my belief, in some respect: if disability is "cause" for euthanasia, why not depression, or fear, or (fill in the blank)?

All I know for certain is I do not want any organization, private or public, involved in end-of-life issues.

Neither do I want end-of-life issues made any part of the medical dynamic -- other than the expansion and refinement of pallative care.

Doctors should alleviate pain and work to extend life as directed by the individual patient. Doctors should not kill us.

And neither should the state.

william Peace said...

Gary, Like it or not, end of life issues are very much a part of the medical dynamic. Doctors and what has become known as the "health care industry" play a central role in the way people die. I have seen this time and again, especially as it relates to the care of the elderly. I do not have any answers when it comes to assisted suicide aside from the fact (as you pointed out) doctors should explicitly not kill patients. Sadly, we usually do not get to choose the way our life ends. And this lack of choice is what troubles me. I do not want to needlessly suffer nor do I want any human to suffer. But suffer we do at the end of lives and this is why we desperately need to inject more humanism and less money into caring for people at the end of their life. And just think, humanism is free--it is part of all of us.

Elizabeth McClung said...

ALS isn't terminal? Whew, that's good to know, I'll pass that along, oh wait, they died. I think the new phrase is life shortening, and any impairment is usually 'life shortening' due to the higher risks of infections to major organs involved. But beyond that, I am for and have been for assisted death; a choice which is given routinely to people due to age, that choice to say, "I wish to be dosed to the level of my pain" (aka the morphine coma) - in North America could be done in a hour instead of 10 days. Does it make much difference to the person in the bed - I don't think so. As the author of Dancing with Mr. D., Dr. Keizer said, the dying is harder on the living than the dying. Of course he also pointed out that we will spend 50 million on a device that MIGHT give some a chance to live a bit longer but not put 10% of that money towards giving those dying some dignity.

I dispute the fact that 'the people who take advantage of assisted suicide laws or the "services" of groups such as Dignitas are not terminally ill.'

First simply because ALL people are terminally ill but second because of the 65 recorded UK people who have gone, only 5 could I find who did not have a 'life shortening' condition (I admit, Dignitas would not grant the list, I suppose due to medical confidentiality). The same applies when looking at stats on those who use the laws to take the last drink, as it were. Several oncology hospitals, and nursing hospitals and you serious think they are outnumbered by a few diabetics?

Now due to the wonders of a ferry I can go over to the US and get legal euthenasia, which is unavailable here simply because of age. If I were 80 or 90, it could be called in over the phone without a doctor needing to see me at all (or at least was for most of my relatives - I admit that BC is not up to general standards of care but I find that kind of treatment to be universal). Do hospitals want wards of people screaming? Generally no. So they give them the medication needed and with consent, the medication which will put them into a coma (not the kind you induce to attack cancer).

I can see aging while disabled as a genuine fear. In my experience however, the facilities are so well equipped (unless you have found some town where people don't age) for those post stroke, and other forms of paralysis, COPD, and machine dependant living that to live many, many decades after what is seen as both old age AND a disability is not something I find uncommon. There are other fears to be addressed regarding getting older but they don't have to do with dying without consent.

As for respect or integration of the elderly, again, that is an aside of the case for euthenasia, but one which is cultural in this case (the exploded nuclear family, the 'me' generation, who knows) in North America. What I would like to see is how the mass of Baby Boomers deal with the issue as it presents itself en mass.

Werner said...

Governments should not interfere when adults decide their lives are over. This would be the best situation. If suicide was something that could be chosen "as needed" then perhaps the public outcry over a possible increase in deaths would force a change in policies which drive many to make this decision. If welfare states were replaced with some sort of universal basic income poverty wold no longer be an issue. Or the hundreds of young Americans who have killed themselves over student loan debts. Increasing personal liberty is usually the best answer.