News outlets are writing about the Washington State Department of Health 2009 Death with Dignity Act Report that was just released. I carefully read the Executive summary and am chilled to the bone. Of one thing I am sure: I will never reside in a state where assisted suicide is legal. I am not being hysterical or alarmist. I simply value my life however crippled I may be or become. Obviously, the residents of Washington, Oregon, and Montana do not feel the same way. And frankly so do many other people that live from coast to coast. I know this because in subtle and overt ways strangers and friends alike have made it clear the life of people with a disability are not as valuable. Don't doubt me. I have read multiple emergency preparedness plans and if a disaster takes place who is going to treated at a hospital and evacuated? No person that is elderly, disabled, or anyone else who is not physically fit.
Who exactly chose to die in Washington? Medication, don't you just love the euphemism here, was dispensed to 63 individuals. Prescriptions were written by 53 different physicians. Prescriptions dispensed by 29 different pharmacists. 47 individuals have died. 36 died after ingesting medication. 7 died without having ingested medication. The 4 remaining who died status is unknown. The age range was between 48 and 95 years. 94% lived west of the Cascades. 79% had cancer. 9% had neuro-degenerative disease including ALS. 12% had respiratory illness or disease. These statistics, charts and graphs and much more can be found in the Executive Summary. Death has been processed and is clearly very efficient. But what the figures above don't indicate is why. Why are people choosing to die? Here is where we get into why assisted suicide is so dangerous. I am opposed to assisted suicide as are many others with a disability (though not all) because of the reasoning involved and justifications used to make it legal. So, why did people choose to die in Washington: from the executive report.
Table 3. End of Life Concerns reported from the After Death Reporting From. Data is available for 44 of the 47 participants in 2009 that died.
Losing autonomy, 100%
Less able to engage in activities making life enjoyable, 91%
Loss of dignity, 82%
Losing control of bodily functions, 41%
Burden on family, friends/caregivers, 23%
Inadequate pain control or concerns about it, 25%
Financial implications of treatment, 2%
I am not terminally ill but have experienced or felt every single one of the above feelings. I do not have the ability to walk and hence have lost some individual autonomy in certain circumstances. There are activities I once enjoyed that I can no longer do that made life enjoyable. I have lost a degree of dignity. I am certainly socially inferior, less dignified, to those who are bipedal. I have lost control of many bodily functions. I do worry about being a burden to my son when I am old. I do worry about the financial implications of my disability. I would be a fool if I thought otherwise considering that I am sitting on a $400 wheelchair cushion designed to last two years at most (insurance does not cover such luxuries). I have in the past experienced gut wrenching pain that made me wish I was dead. Yet here I sit at my desk and cannot help but be perplexed. Why does my crippled body command so little respect. Why is my existence so easily called into question? Well, in part few have the experience of disability. Few realize just how fleeting our autonomy is and that its loss is hardly a tragedy. Bodily functions are just that and does it really matter how or under what circumstances one urinates and defecates. Why is so hard to accept that all life is valuable? Is the ability to control the flow of our own urine really critical to our existence and humanity? If this was the case I should have been put to death 30 years ago.
All sentient beings need to think long and hard about the assisted suicide. Sure on the surface assisted suicide sounds like a reasonable idea. We should be in control of our own destiny including the way we die. Well that control can be found in hospices that have revolutionized end of life care. What we need to do is keep our attention on the real issue--who is likely to want to die and why. Who may be encouraged to die and why? The answer to these questions is simple--those who want to die believe their life has no value. Hence who is at most risk. My crippled body, the elderly, terminally ill and those born with profound physical and cognitive deficits. We may be very different humans but one thing unites us--our life is thought to lack value. We humans value our autonomy. But how do we perceive that autonomy? Do I lack autonomy? You bet your ass I do. Do I lack dignity? In the estimation of many, yes. This is inherently dangerous thinking and takes place in every day. To me the assisted suicide debate is a smoke screen that obscures our humanity. What best glimpse is their into our humanity than the way we perceive and care for the weakest and most vulnerable among us. Do we care for the elderly, value the end of their lives or put them in nursing home to rot away and die? Do we treat severely disabled children with compassion or kill them because we do consider their life worth living? These are hard questions with historical precedent and contemporary implications. Now that I am old (or at least in the eyes of my son) let me provide some historical precedent. In the olden days people with a high spinal cord injury did not survive. These people did not die of their injury, they died because doctors thought no one who was a quadriplegic could lead a rich and fill life. These people died of complications associated with their injury. This is a euphemism just as much as medication being prescribed for those in the State of Washington that fear the loss of autonomy, dignity, and the lack of control over bodily functions. We people with dysfunctional bodies have something to say about all this. We have a vested interest too. Just like all those that can walk, I too value my life. I just wish others thought the same way. This is a discussion that must be engaged by all people but especially those with a disability.
Assisted dying has been on the agenda here in the UK as well. There have been four principal ill/disabled people, two of them dead and two alive:
ReplyDelete- Thomas Inglis, who had suffered brain damage after falling from an ambulance. His mother administered two separate heroin overdoses to him as she was convinced that he was in some sort of living hell. She was found guilty of murder in January and got nine years to life.
- Lynn "Jessie" Gilderdale, who was 31 and had suffered from severe ME (commonly called CFS) since she was 14. She was bedbound, could not speak or swallow, was in constant pain, and had to spend most of her time alone and in a dark, quiet room. She died of a self-administered morphine overdose in December 2008, assisted by her mother Kay, who was acquitted of a charge of attempted murder in January 2010 but admitted assisting a suicide and got a conditional discharge. I've written a few pieces on Lynn at my blog; see here. (Jessie was an alias she used online.)
- Terry Pratchett, best known for the Discworld novels, who has been diagnosed with Alzheimer's. He has become a prominent advocate for assisted suicide and his lecture (read by someone else) was broadcast on the BBC a few weeks ago. A British disability activist called Clair Lewis wrote this in response (the indigojo_uk in the comments is me).
- Debbie Purdy, a woman with progressive MS who has taken the government to court to seek assurances that her partner will not be prosecuted if he accompanies her to Swizerland. This was the reason behind recent guidelines you've written about here.
There is certainly a distinct media sympathy for assisted suicide at the moment and nobody seems to be thinking of the effect it could have, not only on disabled, elderly or sick people themselves but also on their carers. A disabled person who is going through a rough patch, caused either by an escalation in their illness or disability or an unrelated factor such as the death of a close friend, could more easily persuade a carer to help him "on his way" if they both knew that the assistant would get a lenient sentence or none at all, when their state could ease, or at least they could change their mind, within a few months if they don't.
As it stands, some people have not been prosecuted, despite clearly taking action to end someone's life, supposedly at their request, while others have received lenient sentences. I thought it would have been unfair to punish Kay Gilderdale, not only because of the extreme circumstances (as related to me by two of her online friends) but also because the law, as currently implemented, looks leniently on such actions.
There were recently revised guidelines on prosecutions for assisted suicide issued in the UK, with some of the conditions that caused offence before removed. Are you going to be posting anything on this matter, given that you've been following the story quite closely?
If I can write as someone who is sometimes acutely suicidal (I'm not at immediate risk and others know/we're trying to deal with it; I also don't want to make myself more disabled and dependent), I believe that the assisted suicide definitely have little to do with the arguments that are put forth for it. If I were to express that wish in Wa., Or., or Mt. and even call one of those centers remotely, I'm sure something could be established and treatment for depression (or better, material factors) would not be addressed. While I have had one friend overreact in this regard (I wasn't discussing an immediate danger but unbeknownst to me her first husband had committed suicide), most people don't care and one response was along the lines of "go ahead."
ReplyDeleteThe problem is that people with disabilities don't have a real out and can't get help as others can. I can't leave home right now and can't find a counselor who will accommodate me by phone; if things were worse and I called a hotline, I would run the risk of being hospitalized without adequate resources for my care. For example, I would not be able to sit up and would probably be considered noncompliant and delusional for what is actually disability.
Autonomy is listed as a major reason for people's decision. What could give people more autonomy when they can't work, would lose custody if they're younger, etc.?
This whole situation is ridiculous anyway--I realized I needed a rehab wheelchair at the end of May 2009. I imagine others are in the same situation--and make choices based on problems that *should* be solveable--or on fears of what might be. Now I also have a lot of pain and resentment toward people who wouldn't visit. I cry when I'm left behind at home, I cry when I do go out because of of the rejection.
But here's why we still want to move to Washington: one of the companies my husband interviewed with has no co-insurance or co-pays, no deductibles, no monthly premiums, no medication bills. This large company hires people with disabilities and medical issues. I can't take Enbrel now that we have a job--our income exceeds the qualifications, though we can't make ends meet because of medical bills. I'll need another wheelchair in about 5 years--and our new insurance coverage only allows $2500 of DME coverage a year! Basically, even without the increase in salary, by saving medical expenses we'd be able to save for our future (and the kids'), get a real van, hire household help to relieve the strain on all of us.
These are awfully beautiful states. But yes, I'd wonder/worry about what would happen. In Oregon they're rationing health care to people with cancer. Future: more disability services withdrawn so that more people are pushed toward such a "choice"
Oh, my wheelchair is 20.5K; I'd love the seat elevator, but that's another 2K--it can't be retrofitted when you have tilt and recline since it comes as a single 10K unit.
ReplyDeleteThank you for speaking out on this important issue Bill. Your voice is strong and clear and brings a very much needed perspective to the debate.
ReplyDeleteMattew, There are profound difference between the way Americans and the British have responded to the assisted suicide debate. I tend to think the situation in Britain is more alarming given the recent guidelines published. Yet I would not consider ever living in a state here that allowed assisted suicide. Troubling is the word that comes to mind.
ReplyDeleteFrida, Your long comment highlights an inherent problem--we can figure out how to help people die in three Western states but are incapable of supporting people's effort to lead a rich and full life. This makes no sense to me. It also scares me as I worry about vulnerable populations that may be led to believe death is preferable to life.
Annie, People with disabilities, elderly and terminally ill must be part of the discussion. I am just one of many articulate people that have something to say. Thank you for your kind words.
To be fair, there is substantial resistance to the idea of legalising euthanasia in the UK and there are no actual plans to do it. If the Conservatives win the upcoming elections, then the idea is likely to be put on the back burner for a good long time (I hope they don't, though, for unrelated reasons). The problem is that those who don't support it are often accused of being heartless religious zealots trying to impose on others and forcing them to carry on suffering.
ReplyDeleteOne of the sad things to happen after the Gilderdale court case was that the whole issue of ME was completely forgotten, and the discussion moved entirely to the question of assisted suicide. There was a half-hour Panorama programme (that is meant to be a documentary, but it's too short and nowadays too sensationalised, a lot of the time, to be called that) which focussed entirely on Jessie/Lynn Gilderdale's suicide and the court case, but did not even mention how she came to be that ill in the first place: because in the early stages of ME, when a patient is relatively mildly affected, they need rest if they are to stabilise and improve, but doctors stressed her out, humiliated her, forced her to do exercises, encouraged her parents to "keep her active" when her body was giving up on her, and in one case, sexually assaulted her. Several subsequent hospital admissions led to escalations in her condition, on one occasion leaving her on life support after her lung was punctured. In later years, when her mental condition improved (but left her body behind), she had to deal with this trauma all alone, in the dark, in pain.
More recently, a young lady with severe ME called Sophia Mirza was removed forcibly from her home and put in a psychiatric unit. She had shown some improvement in her condition, but doctors refused to co-operate with her and her mother because they refused to believe ME existed. This caused a terrible relapse, and Sophia died a few years later. Her condition was even more extreme than Lynn's.
However, the public still do not know much about the condition even after this case, and when I mentioned it over dinner and that she had ME, I was asked "don't you mean MS?" and told "I never knew ME could be that debilitating". There have been at least two incidents of well-known comedians (Ricky Gervais and Stephen Fry) making jokes that trivialise it and characterise sufferers as malingerers, and a doctor wrote in a pseudonymous column in the Guardian the week after the Gilderdale trial ended that ME (the full name of which he put in quotes) was regarded by many doctors as a "mis-named psychiatric illness", when it in fact causes spinal cord inflammation and paraplegia (as with Lynn).
I don't know if the same would happen to an ME patient now that eyes have been opened by these two cases, but there remains a lot of ignorance and confusion, and the perception of "yuppie flu", of a malaise affecting burned-out high-flyers, persists in some places. I have not seen any newspaper article or any full-length documentary on ME itself and how people go from moderate to severe. This site is a pretty comprehensive resource, written by Jodi Bassett who is a severe ME sufferer.
Hi Bill,
ReplyDeleteI have read this post everyday since you posted it. What a tragic state of affairs humanity is in. This is the first time I have seriously thought about the implications of "assisted suicide." As always, you deliver a clear and powerful message. Thank you.
Matthew, I agree resistance exists but from an ocean away it appears weak and ineffective. I am unaware of the issues associated with ME that you wrote about.
ReplyDeleteHoldne, Thanks for your kinds words. I read your blog with interest. Having a disability and navigating the university system today is very hard. In the olden days when I was in college the law was not on the side of people with a disability. But universities actually tried to do the right thing in many cases and make campus accessible. The law and times have changed. Not always for the better.
Susan Wendell, who is an emerita at Simon Fraser University in Vancouver, is a philosopher who has written a great book on philosophy, feminism, and disability, anchored in her experience as an ME sufferer. Here (I hope) is a link to more info on her and the book, The Rejected Body: http://www.disabilityhistory.org/dwa/library_g.html
ReplyDeleteRob, I know that book quite well. It is truly outstanding. It is a bit dated now but it was and remains critically important to disability studies.
ReplyDeleteBill: I first read this blog entry at NDY and incorrectly assumed it was written by S. Drake, so I have reposted my thoughts & questions here instead. I apologize in advance for their length.
ReplyDeleteI appreciate your post but would offer two important clarifications re the "End of Life Concerns" list you cited.
First, you must be terminally ill - 6 months or less - to potentially qualify for assisted dying in Washington (or Oregon, and I am also assuming Montana though I have not read their statute).
Second, the EOL concerns you quoted are presumably a CONSEQUENCE of said terminal illness and NEVER independent grounds themselves for suicide, assisted or no.
I find two things particularly and paradoxically interesting about the public argument over physician-assisted dying. First, the anti-PAS position correctly shows that the statutory safeguards designed to deny impulsive or depression-fueled decisions are flawed. Patients so inclined can easily 'shop' for a doctor & psychiatrist sympathetic to their desires. But secondly, although there remains demonstrable public support for assisted dying rights in many areas of the country (remember Oregon passed and upheld their law by referendum), the longitudinal evidence clearly shows that the overwhelming majority of terminally ill in Oregon (where the law has been in effect for 13+ yrs) do NOT choose to avail themselves of the option. The annual number over 12+ years in Oregon is stil around 40, with the vast majority of these individuals being caucasian, highly educated, and carrying health insurance with hospice benefits. So the centrist pro-PAS crowd is also correct in their stance that assisted death is a option of last resort and not the preferred method of palliation at the end of life nor fueled by racial inequities or the lack of education or health insurance.
Advances in palliative care and hospice have clearly obviated the need and subsequent desire for terminally ill individuals to actively end their lives; or at least, with authorized pharmaceutical assistance.
Disability rights advocates make important points about the sanctity and value of life regardless of circumstances or challenges. The social model understanding of disability and the likelihood of disability for the vast majority of us is compelling. And the overwhelming number of dying folks affirm this general position; that is, they DON'T choose to end their lives, legally or otherwise. However, I would suggest that in those rare instances where an actively dying individual is experiencing intractable physical pain and wants to die, assisted death in such an instance bears little if anything in common with what we usually consider to be "suicide," nor would legally honoring such a request devalue that individual's life in any way -- or justify the rational fear of an impending 'slippery slope.'
I believe this entire debate (in the US, at least) would greatly benefit from a clearly contextualized and mutually agreeable distinction between "disability" and "terminal illness." Certainly the latter often includes the former but the former does not imply the latter --nor should any law. Respectfully, my one critique of some disability rights arguments on this issue is the conflation of "disability" and "terminal illness" as understood in the PAS context; that is, imminent death. I don't see a significant overlap of interests between those preparing to die and those preparing (& continuing) to live.
I may be hopelessly naive but I still feel that there is some room for a middle ground compromise on this issue if some of the more extreme polemics and anecdotal generalizations from both sides would be abandoned.
Just my two cents. Thanks again for the thought-provoking piece.