It appears assisted suicide legislation will soon pass into law
in the state of Vermont. The Vermont State Senate voted 17-13 to pass the
Patient Choice at the End of Life Act. The bill will be sent to back to the
House and Governor Peter Shumlin is expected to sign the bill into law. This
news has created a buzz because Vermont will become the third state in the
nation to pass such legislation. Proponents of assisted suicide legislation surely consider this a great victory (Thaddeus Pope at Medical Futility was down right
gleeful, see http://medicalfutility.blogspot.com/2013/05/vermont-to-legalize-aid-in-dying.html). Opponents of assisted suicide such as the Death with Dignity Center, Vermont Right to
Life Committee, Second Thoughts and Not Dead Yet are disappointed.
I am not surprised this bill was passed into law. Vermont, a
small rural state with a small population, is a cultural entity unto
itself. I deeply admire Vermonters. I have spent a lot of time in Vermont since
I started skiing. But I am not a Vermonter and this is an important fact. For some Vermonters being from a different state disqualifies me from stating an opinion pro or con about Vermont
legislation. I get his. I am a New
Yorker, an outsider. My business via ski tourism is welcome but I should butt
out of Vermonters business. I get this. I do not come across many Vermonters
stating an opinion about New York legislation. Vermont embraces an especially tough rugged type of individualism. I get this. Americans of every stripe embrace and value individual
freedom. We applaud independence and a strong work ethic. And wow do the people
of Vermont work hard. The Vermonters I
have met and skied with are good people. The very best in fact. Vermont really has communities that
work together in ways I admire. If you doubt me read about the response to the recent hurricanes. In the face of a natural disaster Vermonters went out of their way to help others and rebuild roads and bridges at warp speed.
If Vermonters are so great why did they pass assisted
suicide legislation that I consider potentially dangerous? I would speculate Vermonters have embraced a type of
individualism that does not permit them to think about vulnerable populations
and the risks they can encounter. I get this. Vermonters are individuals and
members of a strong and vibrant community. We will take care of our own. We
will care for the sick, elderly and disabled. I contend not every person is
part of a community in Vermont. There are socially isolated people who have no
social connections. This is an afront to Vermonters.
Again, I admire the individualism and work ethic of Vermonters. So let me appeal and provide a Vermont
based example of the risks I worry about when it comes to assisted suicide legislation. Amanda Baggs has Autism. She lives in
Burlington Vermont. As many have already detailed, Baggs was recently seriously
ill and in need of having a JG Tube inserted.
This is an ordinary surgical procedure and in Baggs case would
undoubtedly be life saving. Yet this is not what some Vermont doctors thought
was was the best course of action. They pressured Baggs to consider the
“alternative”. The “alternative” here was death. Thankfully Baggs experience
generated a strong response on the part of the Autistic community in particular
and the disability rights community in general. I could state much more about the response to Baggs experience but I want to remain Vermont specific. Rachel Cohen-Rottenberg, until recently a
resident of Vermont, and person with Autism wrote:
There has
been a great deal made lately of the so-called right to die — the right of
terminally ill patients to obtain a lethal dose of medication in order to end
their lives. Advocates for “death with dignity” believe that they can put
enough safeguards in place to ensure that people are able to make a free and
autonomous decision, protected from outside pressure at the hands of parties
who do not have their best interests at heart. Under our current system, the
very notion of this kind of autonomy is a dangerous myth. There can be no free
and autonomous decision to die with dignity when people who want to live with
dignity are not encouraged to live — when the very idea that they can live with
dignity is not even on the radar of the doctor who walks into the room. Let’s face it:
disabled people represent the failure of the medical profession to live up to
the mythology our culture has built around it — that cures are right around the
corner, that medical science is all powerful, that life can be made perfect and
pain free, and that even death can be put off indefinitely. People with
disabilities are an affront to a culture that idolizes the medical profession
and assigns it all kinds of power it does not have. The myths by which we live
fail abruptly in the presence of a person with disabilities, and doctors are no
more immune from the power of those myths than anyone else.
For more by Rachel Cohen Rottenberg see: http://www.disabilityandrepresentation.com/author/admin/
Cohen-Rottenberg's last line is chilling—“doctors are no
more immune from the power of those myths than anyone else”. Until 2010 I refused to believe a physician
could be so biased (yes, I was that naive). I revere education and knowledge and refused to believe
such a physician could be grossly biased against a population of people. This
is what education is all about—instilling the ability to reason, to see shades
of gray in a black and white world, to notice subtle nuances, and be free of
bias. One experience in a hospital late at night shattered that illusion for
me. It was a soul crushing experience I tried to bury with all my heart and all
my soul. See:http://www.thehastingscenter.org/Publications/HCR/Detail.aspx?id=5905 My experience, Amanda Baggs and an unknown number of others is exactly why I am worried--it is why all people should be worried. Like it or not, vulnerable
populations exist in every state. In every state where assisted suicide is
legal vulnerable populations are at an increased risk. Proponents of assisted suicide legislation scoff my concerns. They quickly point out no abuse I worry about has ever taken place in Oregon and Washington. What these people fail to mention is that state
required reporting accounts for not much more than the barest demographics of the person that ended their life. Under state required reporting my experience and Baggs experience would not come to light. In fact Baggs and I are lucky. We had family and friends. Yes, I am indeed worried. What happens to those who are isolated and alone? What happens to an elderly person that has outlived his family and friends? What happens to a terminally ill person who is all alone? What happens to those with severe disabilities--especially those with profound cognitive disabilities? What happens to a person with a severe mental illness? Who will support and protect these people? I hope Vermonters will heed my words and think about these questions.
I want the right to die. It has nothing to do with being "disabled" We are not talking about euthanasia. We are talking about someone who clearly does not want to be treated anymore because they do not consider "living" a matter of breathing while doing nothing else but "living" drugged, or in pain, or in a mental state requiring antidepressants and other drugs to keep those that do candle light vigils for the likes of a Ted Bundy happy. Life means action or a personality like Stephen Hawking who's brain pulls him through the tough times. If Mr. Hawking suffered severe pain and needed mind numbing pain killers to keep him "alive", I am sure he would give up his life support. And the bottomm line is Oregon rarely uses it's "death with Dignity" law. "Assisted suicide" is baloney. It is suicide to live miserably when all hope is used up. There will be none up here in Vermont out to get their loved one's inheritance, or any "Cripples" being knocked off their pulpits by our :Right to Die" legislation.
ReplyDeleteMichael, Was Amanda Baggs experience not a concerted effort to perform euthanasia on the part of physicians? Your desire, what you identify as the right to die, is not at risk nor has it ever been. Palliative care and hospice already respects the so called right to die. And these experts, palliative care physicians, were opposed to the Vermont legislation. Opposition to assisted suicide legislation in Vermont and nationwide is broad based and is not just about disability. As many other people have stated, when does the right to die become the duty to die? I think there is solid reason to be opposed to assisted suicide legislation, particularly when we have a for profit health care industry. It is cheap to die and expensive to live and provide needed supports when the body is disabled or weakened by age and disease.
ReplyDeleteThis is a great post, Bill, showing that what is going on is rank prejudice against disabled people, and attempts to get us to die, while people who fear becoming like us want the comfort of having poison on their bedside table.
ReplyDeleteJohn, Thanks for the kind words. Sadly I think most people without a fisability or experience with disability in some way truly get it. Few consider the ADA civil rights legislation. This is a big problem.
ReplyDeleteThe "For Profit Health Care System" has more reason to keep you alive than to kill you. Hospitals and Doctors make a lot of money watering their plants. I had been keeping many dead people alive for many years. They were all victims of family, religion, medical or political pressure. We all make money caring for them. Karen Ann Quinlins, Terry Schiavos and terminally ill patients are kept alive way beyond what should be tolerated. We are all going to die, we all deserve to die in a dignified way. If you want to hang on to the bitter end--it may not be good for society, but it will be tolerated unfortunately on the backs of the younger generation who has to pay for extending a hopeless situation. In my experience, I do not see anyone pushing to shorten any ones life.
ReplyDeleteThere is no way we can continue to spend a million dollars keeping severely damaged person alive that have no sense of living or the capability of thinking about it. It is like having a pet rather than a person. We love our pets---but they should not be humans.
Michael, I agree all people should die in a dignified manner. At issue is how do we define dignity. I am no fan of organized religion, institutions, or politics. You state you have not seen anyone pushed to end their life. I provided two links in the essay that provide specific examples. I urge you to read my article and the essay about Amanda Baggs. As for spending millions of dollars to keep people alive, exactly who gets to choose who lives and who dies? Who decides what conditions are too expensive to treat? Who gets to choose when life is worth living. Finally, for profit hospitals despise people such as myself. We are an economic drain because we require expensive technology and require more labor. The fact is people with a disability get less care not more.
ReplyDeleteI am similarly disturbed by the popularity of the fiction bestseller Me Before You, which is Dignitas propaganda and am worried about such efforts to garner sympathy for killing nonterminal disabled people.
ReplyDeleteA lot of education is needed on this front--I did not know the other side of the story until I read more on your blog and from Not Dead Yet. Or that so many people committing assisted suicide are nonterminal but with inadequate supports or untreated depression.
"There is no way we can continue to spend a million dollars keeping severely damaged person alive that have no sense of living or the capability of thinking about it. It is like having a pet rather than a person. We love our pets---but they should not be humans."
ReplyDeleteWait, Michael--I thought assisted suicide laws were predicated on the fact that the individual choosing to die must be of sound mind, conscious, etc.
Are there laws that allow people who are not conscious to be actively killed with euthanasia? (as opposed to life support withdrawn in some cases)
Frida, I am not a lawyer but I find it remarkable that any person who decides to stop eating and drinking can legally be considered terminal. I am sure Margaret Dore would know the legal reasoning. The point is that if a person with a profound disability decides to end their life this was as Christina Symanski did she gets legal and logistical support. I sincerely doubt if a woman her are suffering from clinical depression would get the same support. In fact I am sure she would not. This highlights the double standard people do not want to talk about. People with a disability that express a desire to die are admired but those that want to live are deemed difficult and must fight tooth and nail for adequate social supports.
ReplyDeleteI looked at Christine's photos just now--I never had before. What a clearly vibrant, beautiful young woman. I know she had a lot to offer the world and was dismayed by her death.
ReplyDeleteAnd I mean vibrant and beautiful while she was a wheelchair user--as much as before.
ReplyDeleteI have no doubt that you are right; it takes professionals who are appropriately experienced in working with people with disabilities to understand that the situation is really the same as for those without disabilities.
I read your Hastings Report article recently; my experience was similar in the ER for c. diff and heart pain. Very treatable, but I seemed to be regarded as some kind of end- stage patient. Disturbing!
Frida, I discovered Symanski's blog a day or two after her death. I stayed up all night reading her blog. Her writing was powerful and dark--deeply depressing in way I have never come across. And yes, her images before and after SCI depict a beautiful young woman. I hope someone will write a book about what took place before and after her injury. Symanski wrote an ebook but it is mostly a rehash of her blog. There is so much I do not get. As for your experience in the ER, as a person with a disability I would never go to the ER unless I was critically ill. ER medicine is not good medicine. A draconian sense of health care dominates. We people with a disability are a labor and financial drain. This is never acknowledged but exists--sort of like disaster planning. No contingencies exist for people with a disability.
ReplyDeleteIn my 37 years practicing medicine and working in the ER for a good deal of time---I never had seen a disabled person mistreated. There were many problems with access in the past because many people died from severely disabling injuries and we did not see many severely disabled people. With the advent of saving every conceivable severely injured person, it became paramount to ensure access to a huge increase in those who would never fully recover. But just like all aspects of live--we cannot protect or cover everything that life throws at us---life ain't fair---it never has been.
ReplyDeleteThere is a limit to what we can provide---for anyone. Money does not grow on trees. We have to prioritize how we provide for the greater good. Do we spend huge sums of money keeping alive and/or saving the severely injured, or saving terribly deformed premature infants? Or do we spend our money to ensure that viable productive uninjured and injured people receive better health care?
ReplyDeleteMichael, I do not know this for a fact but I would maintain any person with a disability that has familiarity with medical care would not consider going to the ER. The reason for this hesitancy is fear of abuse and neglect. I for one would never dream of entering an ER sight unseen. I would either wait for typical business hours to begin if possible. If I had a medical crisis I would do my best to speak directly to my physician before heading to the ER. I would surely have my physician talk to the ER doctor on duty. The medical need for such a conversation is limited. The call would be to establish my social worth. I can also state that every time I took my son to the ER when he was small ER doctors rudely and openly questioned my ability to parent a child. It was assumed disability precluded parenting. He was asked about his health insurance coverage and more than one doctor asked him if I was his legal guardian.
ReplyDeleteI accept accidents happen in hospitals. Mistakes are made every day. We do our best to minimize them. Physicians are human. These are givens. I think we differ in that I think people with a disability are at a greater risk when they seek to access health care. I suspect you do not see the inherent inequities that I do. While I am not a physician I have accessed the health care system more than the average person. What I have seen and experienced concerns me. What I have read as a professional anthropologist/ethicist is equally worrisome. Thank you for an interesting exchange of views.
I'm confused - why does "Michael the Archangel" (ironic name) have such a refusal to accept these things are true? Michael you've got 4 people here telling you that the disability experience in hospitals is frightening! You better believe it's all true....I've had my share of nightmarish experiences as well. The really scary (and odd if you ask me) part is that hospital staff don't seem to have any understanding of disability - even though everyone in AB society treats us like we're ill, even if we are in fact very healthy - they can't equate the two. I was just talking on FB the other day about how nurses always want to take your wheelchair away and don't understand when one protests. It's bizarre. But Michael, perhaps you could take 2 steps back and ask yourself why you can't accept these truths as valid. Too horrifying to believe?
ReplyDeleteJo, In my experience physicians are extremely reluctant to acknowledge people with a disability are treated differently. I have been puzzled by this for quite a while. Hence the fact my words or the words of others have not changed Michael's views well within the norm. In fact I have found being strident is the worst way to approach the subject of bias (ableism) with physicians. The best discussion of why people with a disability encounter bias in a health care setting is found in Jackie Leach Scully's book Disability Bioethics. Toward the end of her book she writes about the the ethics of recognition. Physicians do not consider themselves to be biased and the hardest thing for them to do is to acknowledge bias exists in the first place. That is a giant step to take most physician will never take.
ReplyDeleteMichael, you haven't seen disabled people mistreated, but abusers hide it. Sexual and physical abuse happens in hospitals and nursing homes, and it's common.
ReplyDeleteI am a homeschooling parent and an activist and beginning to write again. I would be working again if my son were not ill. I intend to again. I contribute to my family and groups of friends. I do the housework and when I can't, things fall apart around here.
But someone seeing me in a complex rehab power wheelchair sees someone who severely injured/severely ill and not "viable/productive", even though that's not the truth. People assume I'm on disability. I'm not. That's no judgment against those who need it; I am commenting on the assumption.
And in fact, my healthcare costs are much less than most people's in my husband's company--for our whole family. We don't meet the deductibles or out-of-pocket maximums.
I am treated with kindness and respect by all but a few, but someone making assumptions/asking for a copy of my DNR order (geez, I have spinal arthritis) can lead to disastrous results for me/my children (children?!, they exclaim). The bias is often unconscious.
I have no problem with anyone who is alive and thinking on their own terms. having 37 years of respiratory care under my belt, I have strong bad feelings about spending enormous amounts of money keeping non-viable,, brain dead people alive because some family member or right to 'life" group or doctor wants to keep their family member or person artificially alive. It is very disheartening. It is also disheartening when a patient wants to die and it is not allowed. There is nothing bad about being disabled as long as severe retardation is not involved. I volunteer and help out with many disabled people. They are an inspiration to me. This includes some very disabled, very difficult people who are an enormous burden, but are loved --which makes me sad. Bottom line---if a very sick or disabled person wants to die because he or she sees life as unbearable, that is not "assisted Suicide--that is Death with Dignity. And like I have said--we can't cover every aspect of the "Life ain't fair" syndrome. Life will always try to be unfair and we have to deal with it with minimal hand wringing.
ReplyDeleteMichael, Your comment is troubling. There are points of agreement but there are also what I hope are unintentionally insulting points. On points of agreement: respiratory issues raise very difficult end of life ethical dilemmas. I am sure you have seen people needlessly suffer. This is wrong. I agree it is disheartening when people do not die in a way they clearly articulate when death is inevitable. You write there is nothing bad about being disabled. Of course, this is a given that any person with your level of education has earned. I would point pout though too many physicians do not hold the same belief. And this bias, dubbed ableism, can be deadly. You clearly believe mental retardation is bad. While no one wants to have profound cognitive deficits, deeming "mental retardation as "bad" accounts for a deplorable history of abuse. Need I remind you of Willowbrook? How about Ugly Laws? If you do not know this history I suggest you read about it. And what about the famous case of Buck v. Bell and Eugenics? The history with regard to people with cognitive disabilities and metal illness is shocking.
ReplyDeleteOn inspiration. I suggest you find inspiration elsewhere. This deeply upsets many people with a disability myself included. I am not here to inspire others and resent being classified as such when I am simply doing ordinary things. I an average middle aged academic who happens to be paralyzed. There is nothing inspirational about this. In fact such inspiration assumes the ordinary is impossible for people with a disability.
As for life ain't fair: this illustrates there is a fundamental inability on your part to grasp that disability is a civil rights issue. The ADA for example is civil rights legislation. There are fundamental inequities that people with a disability encounter that prompted the Federal Government to protect our civil rights. For instance, prior to 1975 public schools routinely denied children with a disability an education in the public school system. People with a disability were not allowed on airplanes because we were a safety hazard. This created a legacy of bias still present today. These sort of civil rights violations account for a long history of social oppression. This far surpasses "life ain't fair". I sincerely doubt you would make the same comment with reference to any other minority group. How would a black person for instance take such a comment? You would be labeled a bigot. As I noted in an earlier comment, ableism, a word I do not like to use, is rampant. I wish you saw it as clearly as I do.