For months I have been expecting the Montana Supreme Court to make assisted suicide legal. On Thursday December 31, this became reality. Montana is now the third state to allow doctor assisted suicide. What exactly does this ruling mean for residents of Montana? Well, doctors can prescribe the required drugs to mentally competent, terminally ill people without worrying about being prosecuted. This may sound reasonable as no one wants a person who is terminally ill to suffer when death is inevitable. But life and deciding who is terminally ill is not always simple or clearly defined. For instance, ALS is a terminal condition and any person diagnosed with this condition will be devastated. This is a reasonable reaction. But this same person can live many years and in some cases be alive decades later (this is not the norm but possible). Here is my concern: what happens if this person lives in Montana? What options will be discussed when ALS is the diagnosis? Will the focus be on loss alone, the slow deterioration of one's physical ability? Will a seemingly good hearted and caring physician state that assisted suicide is a viable option? This will be perfectly legal and a deadly choice some people may choose. The implications do not end with this one example nor are they limited to ALS. Let me turn to something I know a lot about--paralysis. What will happen to an athletically fit young man in his early 20s who experiences a high level spinal cord injury. If he lives in Montana will assisted suicide be a treatment option? I can readily imagine it would be easy to sway such a man to end his life shortly after such an injury. No one wants to be paralyzed, myself included. What if the post spinal cord injury portrait painted by the attending physician is hopelessly bleak? This is not far fetched. Indeed, such an approach was the norm when I was paralyzed. It was assumed high level quadriplegics could have no "quality of life". This assumption was wrong and based not on science or medical facts but a cultural belief that death was preferable to a severe disability like quadriplegia.
There is not much positive that can be found in the Montana Supreme Court decision. The one silver lining is that the court did not determine whether the Montana Constitution guarantees the right to an assisted suicide. Thus the court did not go as far as District Judge Dorothy McCarter had in 2008. Instead, the court ruled that "We find nothing in Montana Supreme Court precedent or Montana statues indicating that physician aid in dying is against public policy". Why does this not make me feel any better or less worried? Let's not mince words here: the Montana Supreme Court ruling represents yet another legal victory for powerful and well funded right to die groups like Compassion and Choices. This group in particular is adept at swaying the media and those unfamiliar with assisted suicide. Hence, comments such as those found in the New York Times that appear reasonable are in fact misleading. For example, the legal director of Compassion and Choices is quoted: "Montanans trapped in an unbearable dying process deserve, and will now have, this end-of-life choice". Again, on the surface this sounds reasonable but ignores the fact hospice care is available in every state. Nor does such a statement consider the gray areas I have already mentioned where bias against people with a disability rears it ugly head in a myriad of different ways.
Readers of this blog will know an ever present refrain of mine is nuanced debate--we need a nuanced debate about disability. Sadly, nuance is utterly absent in most cases where disability is discussed and this deeply troubles me. Yet when it comes to the discussion of assisted suicide the situation is far worse. Both sides of the debate, those for and those against assisted suicide, do nothing but scream at one another. Nuance is utterly absent, views are deeply entrenched and unwavering. In addition, strange political bedfellows exist such as conservative pro lifers siding with liberal disability rights activists. In part this is why I limit my comments about assisted suicide. I sincerely doubt I can sway people one way or another and restrict my observations to how assisted suicide can impact the lives of those with or who may incur a disability. This approach does not make me a popular guy. I can live with this but I remain deeply frustrated. But I would like to believe my frustration comes out in a constructive manner. In contrast the frustrated words of others such as Mark Mostert of the Institute for the Study of Disability and Bioethics (ISDB) leave much to be desired. He wrote: "My greatest frustration? That people with disabilities are so (forgive me) brain-dead in not seeing how they will soon be in the sights of the pro-death lobby. In my more perverse moments, I can't wait to say I told you so. More rationally, if more people with disabilities don't stand up along with those of us who are trying to get the word out, then our future is very dark indeed". I do not share Mostert's deep pessimism and regret his choice of words. They are alarmist and counter productive. Obviously I am quite adept at voicing my opinion as are millions of other so called "brain-dead" people with a disability. Thus I may accept his support but wish he could frame it in a nuanced manner.
15 comments:
In Montana, I don't doubt that assisted suicide will become a big option for a number of reasons. First, the suicide rate, among men and young men particularly, is already very high there. Unemployment and poverty plus a limitation on opportunities can take its toll. Second, medical care there is terrible. While individual doctors and nurses work very hard, there simply aren't the resources (I had to deal with a makeshift splint for another joint entirely than it was intended). There is no cancer center in Montana and I doubt there is a rehab center there, though no doubt there is a higher rate of spinal cord injury because of the nature of people's work (ranging from logging to ranching to construction and truck driving).
So add removal from your family and support systems so that you can get medical treatment--your family if you're ill can probably not afford to visit you in Washington state or Utah--and return to a near-completely inaccessible world, and you've got a bad combination. Montanans at least in the rural areas die much younger already from accidents or alcohol/drug abuse. Plus you take away someone's livelihood if they're used to physical labor (most are) *and* their favorite recreational activities--and well, disability starts seeming worse than death to people.
Obviously there are solutions to these problems, but I doubt when a Montanan becomes "wheelchair bound" (said because they can't go anywhere) that the post office and schools and shops and sidewalks will suddenly become accessible.
I'd love to live there but I don't know that I *could* live there.
You're right that more nuance is needed in discussions of disability--that hits me hard with the health care reform debate.
Happy New Year, anyway!
You're right that more nuance is needed in discussions of disability--that hits me hard with the health care reform debate.
Plus most Montanans couldn't afford accessible vehicles, to make their own homes or land accessible or find housing that is. If they don't have insurance but make above Medicaid guidelines (most do)--well, there just aren't other support systems in place. There could be.
But the legislature is taking the easy way out.
Frida, There is no debate or nuance when it comes to health care reform. Into this void we have entrenched politicians and lobbyists seeking future power and great riches. People with a disability were cut out of the discussion a long time ago.
As for Montana, it is a diverse and fascinating state. There is great wealth and poverty in the sate and thus it reflects the best and worst of our society. Health care for critical injuries in such rural states is indeed problematic. What I really worry about is the toe hold the assisted suicide lobbyists have won in the Pacific Northwest--namely Washington, Oregon, and Montana. Will a similar toe hold be fought for in the North East?
Thanks for referencing my blog, and your correct assumption of my pessimism. I am intimately aware of the plight of people with disabilities - it has, after all, been my entire career, and besides, my dear wife has a severe disability.
I think the situation is more dire than many of us think..... first they came for....... well, you know the rest.
The argument you make Mr. Peace, is that once we allow aid in dying for the terminally ill, our ethics will find the "slippery slope" to euthanizing other patients, including the disabled.
This is not so in Montana nor Washington or Oregon. Aid in dying is reserved for the terminal patient, one who does not wish to die but has no choice because of cancer or some other fatal disease. The issue is not one of killing - terminal patients are being killed by their disease - but one of suffering. Who has the right to end suffering?
The new Montana ruling simply protects doctors from prosecution for prescribing a lethal drug to a dying patient - at the patient's request and to be ingested by the patient without the doctor's assistance (which is why the terms are so misleading).
Aid in dying is not assisted suicide. It cannot be imposed on others, only requested by the patient, it will now regulates the common practice of terminal sedation used in hospice/hospitals where a dying patient can be sedated to unconsciousness until they die - a perfectly legal manner of alleviating suffering - and it removes the horribly traumatic methods of ending life that some terminal, suffering patients find their only choice in other states.
The term "disabled" is often used for various disabilities: the brain-dead, the deaf, the blind, the paraplegic, the elderly. I think here is the error of most of this discussion. Discrimination against the disabled is illegal. Assuming that a disabled person is more susceptible to coercion into aid in dying (or assisted suicide or euthanasia) is a profound lack of respect for the autonomy and capabilities of any disabled person.
Aid in dying as legal in three of our states is reserved for the dying, the person who has fought against a terminal disease and has exhausted all hope of recovery. Aid in dying simply lets them, by their own hand, choose when that death will come - when suffering will end - and on what terms.
In theory, LA, what you say is true and I thought similarly to you until the past year or so. In practice--as in the case of Dan James with quadriplegia (tetraplegia in British-ese to make any news searches easier) in England who commited suicide with Veritas in Switzerland--the opposite is often true and it's often people with disabilities that are not terminal illnesses that commit suicide with these laws.
Do I think people should have the right to end their lives? Probably. But I think the assisted suicide legislation heads into some dangerous and unclarified ground. How many people who are disabled and severely ill will not receive counseling for being that depressed as someone else who is suicidal would?
I have been suicidal from pain before. Would these laws have allowed someone like me to end it already rather than find solutions that return me to a more pain free state? One of my doctors recently stated to me that I don't have much quality of life--and he's said it on two occasions. That's a disturbing comment and conclusion since I don't see my life that way right now at all. I lead an active life of the mind--and people visit my home even when I cannot leave it. Support services for people with disabilities are often lacking though, and I could see myself becoming suicidal just from the inability to care for myself if I were unmarried/did not have family to help--I don't have a complex wheelchair that would allow me to be far more active in home or out of it, though I am now waiting on one.
As far as discrimination being illegal goes, I do experience discrimination on the basis of disability almost every time that I leave my home; it's a bit daunting!
Also, if the idea is of suffering, many people with disabilities are included--not just those with terminal illnesses. People think I am suffering--and therefore...they *do* impose their beliefs about my life on me. And when a friend went on a ventilator, other friends (of mine, not hers) were horrified rather than supportive--i.e., why would she want to live life that way? That she should commit suicide in one way or another--and she has had this idea expressed to her. Her illness often does kill people by their 20s, but she's been going strong for about 7 years on the vent and enjoying life.
Virginia Beach, I may not share your deep pessimism but I am worried. To think otherwise would be foolish. The advocates for assisted suicide have had great success in the Northwest and the reasons for this need to be understood. I know you care as do I.
LA Neumann, Thanks for your well-written and thoughtful reply. I understand from your profile you are writing a book on religion and death and are a writer. Your talent is obvious. Yes, I believe in validity the "slippery slope" theory as do many others. Hence I have grave reservations about terminally ill people being aided to death by physicians. It seems to me that the most vulnerable will choose to die. For instance people who are depressed from long hospitalizations, people that experience significant pain, and, yes, those with disabilities. I agree that discrimination against people with a disability is illegal. But that does not mean it does not exist. I experience it daily. Thus I wonder what happens to a person with ALS who needs a respirator to survive. Will the physician in question portray such a life as inferior and not worth living. Will this person then choose to die based on a doctors so called expertise? This decision is not based on medicine or suffering but rather on the cultural belief that life on a respirator is inherently bad. Many people lead long and rich lives when using a respirator. If an error exists it is the assumption all people are treated equally. Frankly, I find hospitals and the health care system in general hostile to my presence and that of other people with a disability. I see no reason why people with a disability cannot in some way be considered terminal and hence be allowed or encouraged to die. Your use of the phrase "aid in dying" is effective parsing of words but in reality it is assisted suicide offered by a doctor. And all doctors are human and try as they surely do hold certain biases. I know this as my existence and competence has been questioned by doctors unaware of their own bigotry.
Still sounds like murder to me, no matter how many ways people try to rephrase it.
Becs, Too many people experience needlessly painful deaths. This leaves a lasting impression on family members who do not want to see other people suffer a similar fate. For some, they become advocates of assisted suicide such as the commentator LA Neumann. While I may disagree, I think they truly mean well and are trying to make a contribution to humanity. What they do not think about are the larger implications for people such as myself with a disability.
Mr. Peace:
To address one of your comments:
I have been suicidal from pain before. Would these laws have allowed someone like me to end it already rather than find solutions that return me to a more pain free state?
The laws in Oregon, Washington and Montana would not have allowed you to access legal aid in dying unless you have a six month diagnosis. You didn't indicate that as part of the scenario you posted, but absent that information--I hope it might be useful to add this portion of the law to the discussion.
One of my doctors recently stated to me that I don't have much quality of life--and he's said it on two occasions. That's a disturbing comment and conclusion since I don't see my life that way right now at all. I lead an active life of the mind--and people visit my home even when I cannot leave it. Support services for people with disabilities are often lacking though, and I could see myself becoming suicidal just from the inability to care for myself if I were unmarried/did not have family to help--I don't have a complex wheelchair that would allow me to be far more active in home or out of it, though I am now waiting on one.
Compassion & Choices fights every day for all patients to have their wishes honored. We strongly believe in the rights of patients to be fully informed and direct their own care. (Please see our Patient Centered Principles at our website: http://www.compassionandchoices.org/care/Patient_Principles)
I would be pleased to answer any further questions or discuss these related issues. Please feel free to contact me via email at caxtman (at) compassionandchoices (dot) org.
Carla Axtman
Online Community Builder
Compassion & Choices
compassionandchoices.org
Carla, Thank you for your polite and thoughtful reply. I also appreciate the fact you clearly identify yourself as being from Compassion and Choices. As for the six month diagnosis that sounds nice on paper. But life and end of life for many is not so clear nor can doctors state with 100% certainty a person will die in a specified period. And more to the point, who is to say some doctors will not make a mistake--they humans and no matter hard we try mistakes do happen. I for one know many people who were deemed terminal and are still alive. What would have happened to them if they were in great pain, depressed and told an option is assisted suicide? Let's further assume such a person has a long standing relationship with their doctor and they have total trust in what he or she says. If assisted suicide is presented as an option the odds are they will follow a doctors advice.
I too have experienced great pain. I understand how such pain could drive one to want to end their life. But we have advanced greatly in pain management and hospice care is widely available. Frankly if one wants to end their life we do not need laws to make this possible as we are fragile creatures and quite resourceful. What bothers me about Compassion and Choices and is the utter failure to acknowledge the inherent dangers associated with assisted suicide. I am part of a class of people with a disability that are at great risk. Prejudice abounds and I do not want to ever be told that I have the choice to end my life. If this option had been given to me as a child I would have jumped at the chance many times.
What would have happened to them if they were in great pain, depressed and told an option is assisted suicide?
Mr. Peace:
I'm so glad you asked. One of the provisions in aid in dying law requires that individuals be mentally competent adults. Those suffering from clinical depression are not eligible for the law. This provision is part of the vigorous process of determining eligibility.
In fact, one of the many services that the Compassion and Choices End-Of-Life Consultation Service provides is referral for suicide services. For individuals suffering from clinical depression and ineligible for the law, we work to connect them with these appropriate services.
Let's further assume such a person has a long standing relationship with their doctor and they have total trust in what he or she says. If assisted suicide is presented as an option the odds are they will follow a doctors advice.
Individuals cannot access aid in dying simply because a physician with whom they have a longstanding relationship suggests it. Two physicians must agree that the patient is eligible. This is above and beyond the determination of mental competence.
understand how such pain could drive one to want to end their life. But we have advanced greatly in pain management and hospice care is widely available.
Compassion & Choices completely agrees that we have made enormous strides in pain management. We are vigorous supporters of palliative care and hospice. In fact, I hope you will consider following us on Twitter (@CompandChoices). We make a concerted effort to draw attention there to the amazing work being done by those who do palliative care and hospice.
Again, I very much appreciate the opportunity to engage in this dialogue. I hope I have been able to provide some clarification and appropriate information. Please feel free to contact me with further questions or additional comments.
Carla Axtman
Online Community Builder
Compassion & Choices
compassionandchoices.org
Carla, Please call me Bill. I am not much for formalities. I remain unconvinced that a person with a disability and the disabled as a class of people are not at significant risk if assisted suicide is made legal. In Britain those that have gone to Dignitas to end their life include Daniel James, a non terminally ill young man with a spinal cord injury whose parents escorted him to the Swiss clinic. If loving parents will do this to a child what will happen to those with a profound disability that requires much assistance? I don't see Compassion and Choices advocating for the rights of people with a disability or emphasizing they have the right to live?
As for the example I used of the depressed, ill person with a relationship with his or her MD. Yes, a second opinion is required. What is to prevent this MD from seeking out a second opinion who they know will be supportive? Some MDs are for assisted suicide while others remain staunchly opposed. I am afraid I see too many possible problems and the people most likely to suffer, die, are the most vulnerable. Again, with advances in hospice care and pain management (which I am glad you support) I just don't see the need to legislate assisted suicide into law. I do not want people to suffer needlessly before they die nor do I want people to think it is their duty to die if pushed or advised.
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