Vermont Coalition for Disability Rights
11 EAST STATE STREET, SUITE #2
MONTPELIER, VT 05602
TEL: 1 (800) 639-1522
Physician Assisted Suicide
Good morning. My name is Ed Paquin and I am the president of the Vermont Coalition for Disability Rights. We appreciate the opportunity to address the committee on the subject that some are calling death with dignity, others patient directed dying, or doctor assisted dying, but that I would call physician assisted suicide. Our remarks are mainly concerned with the bill, S.77, as introduced. The legislation that passed the Senate attempts to offer a degree of comfort to individuals and families – and to eliminate liability for physicians treating people who are dying – in cases involving palliative sedation or very aggressive pain control. VCDR has not taken an official vote on this construct. We hope that legislators carefully assess the implications of any proposal that reduces legal protections of vulnerable individuals. We know this is not the intent of either version of the legislation but it would be naïve not to explore the possibility. This committee has done considerable good work to point up and address the failings of our Adult Protective Services system and so we know the issue is of importance to its members.
VCDR has decided to oppose S.77 as introduced, not because we don’t understand the compassion of those who advocate for it, but because we do not think this represents good public policy. I do not dispute the comfort that the bill would offer a few Vermonters, though I think that the public probably believes that the bill has a wider applicability than it actually has.
Rather, it is a fundamental shift in the role of a physician to specifically prescribe a drug whose sole purpose is to end life.
There is something telling in the need to use terms like “death with dignity”. Many people with disabilities understand the euphemism to convey that it is more dignified to die than to live in pain, or with a lack of mobility, or without the ability to self-care. These are day-to-day factors in the lives of many people with disabilities, and the implication that our lives lack dignity adds to a stigma that is not only unwarranted but damaging. “Choice” seems to have been introduced for its appeal to a sense that there is some intrinsic right to choose the means and the timing of one’s death. The bill would be drawn much more broadly, however, if we really thought that freedom were the central issue.
If there is an intrinsic rights issue addressed in this proposal it is a physician’s right to prescribe a medication with the primary purpose of ending a life in the name of compassion. VCDR believes that we be better served as a society to train our medical professionals in more modern end-of-life care that treats pain and brings teams together to address individual and family needs. Instead we create a structure dependent on all sorts of “protections” which are ultimately paperwork in which physicians self-affirm the ethics of the action. It is very telling that the deaths resulting from the lethal drugs are recorded as deaths due to an underlying disease – the pretence of protections dissolves when any we need what is essentially a lie to make ourselves comfortable with this action.
Not only is the physician protected from liability, but is also freed from overseeing the administration of the lethal drug, giving only a prescription and telling the person not to do this alone or in public!
- From the individual rights perspective we believe that people have the right to accept or refuse medical treatment, something that is generally accepted except when individuals are suicidal and have been diagnosed as mentally ill. There is definitely a distinction between refusing medical treatment and getting help to commit suicide. We also support aggressive pain management and access to the full range of palliative care. This bill seems to come from a community that generally has access to these things and doesn’t understand how a law can have consequences beyond the community they know.VCDR would agree with the position that the Vermont Medical Society has taken on this legislation.
The use of “choice” as a key term is interesting when we see that the advocates in Oregon and those who use the law, for whom it seems to be tailored, tend to be among the people who have the most choices in society. As we listen to the Oregon “experience” it seems clear that the role of the advocacy group that leads people through the process is key to its seeming success. Much of what we know comes through data that tell us very little, since the law is fairly straightforwardly designed to allow numbers to be measured but to protect anything that gives much of a picture of what forces might be at play in the use of the process. The so-called success in Oregon seems a result of an activism that I would not want to rely on for the long run. Cases that indicate failures are labeled as anecdotal, but isn’t it individual situations that show how well something actually works?
Statistics in Oregon are collected on number of requests, number of prescriptions, number of deaths, etc. – nothing that would show whether there was an undue influence or any such thing. If they show anything, it is that the percentages are small – which should lead one to wonder why such a questionable policy is so important.
Despite the appeal of somehow making suicide a “right” in some circumstances the proposal really comes in the name of compassion. Unfortunately so have many ugly things that have occurred when we leave ethical matters like this solely in the hands “of the professionals.” This bill assumes that having two doctors involved resolves the ethical issues.
- The assumption is made that “six months to live” judgments have some intrinsic meaning with regards to this matter. Doctors can and do make mistakes. And the law is not explicit in saying death within six months regardless of treatment. We’ve heard that diabetes has been added to the list of qualifying illnesses in Oregon.
- Professions tend to see the world from their particular perspective and this may be the root of much of the discomfort from the disability community. “Death with Dignity” conveys the message that someone who needs assistance with activities of daily living (ADLs) is not living a dignified life. One need only look to the prominence of physicians who favored lobotomy and eugenics to understand that, though we all appreciate the importance of the medical profession, we must acknowledge its fallibility.
- [One recent example is the case of Ashley X. Doctors in Washington, with approval of their institution’s ethics committee supported a family with a daughter with developmental disabilities by sterilizing her, removing her breast buds, and stunting her growth to preserve and protect their “little pillow angel”. This, despite the fact that what was done was actually illegal under Washington legal precedents. I don’t mention this to connect it directly to this proposal, but to point out that when there are serious ethical decisions to be made, we need to look beyond the view of a particular profession.]
- It is short sighted and naïve to think that outside and even inside, personal influences will not bear on a frail individual. Even with the fairly sanitized data being collected “being a burden” is identified as a motivating factor in a number of cases. It is also naïve to think that there are not logical next steps; already I have heard proponents describe very sad cases of loved ones who suffered at the end of life with esophageal cancer who would most likely be unable to take oral medication that is called for in this bill. I have heard proponents describe the suffering of relatives with dementia as though this bill would provide an answer for them. If we think that this bill represents the last word on this we need only look to Europe where it has essentially evolved to euthanasia. In the Netherlands a “mobile unit” has been instituted to cover instances when a person’s regular physician does not feel euthanasia is appropriate. If we have not seen this sort of thing in Oregon, I’d attribute it more to the political savvy of the advocacy group than to their satisfaction with the extent of the current law.
- Does a person have a right to choose the manner of his or her death? I can’t answer this as a constitutional question, except to say that we certainly assume that society has the right to prevent suicide. We recognize this as a serious matter, provide education to youth on the subject, provide social services to others, and restrict the liberty of those who try, if a doctor agrees he or she has a mental illness. The proposal intrinsically makes the judgment that physical pain in a terminal situation is a greater burden than the mental pain that many people face, by allowing people to opt for suicide if the physical pain is too great, but denying them to do so if their mental pain is unbearable. I doubt there is much argument that modern pain medications, though not perfect, are considerably more effective than what we sometimes force people to take long-term for their “mental health”. But please don’t think I am advocating that you expand what this bill covers.
- We should take note of the high number of suicides in Vermont and ask what sort of message will be taken by youth going through trauma. As much as proponents want to limit the negative message this bill conveys by renaming suicide, I don’t think it is realistic to think this won’t happen.
- I don’t know of anyone being prosecuted criminally for committing suicide.
- In this proposal a person with a mental health related disability cannot, at end of life, access physician assisted suicide if the doctor thinks he or she is not of sound mind, but there is no due process to legally challenge this question of capacity. This law is intrinsically discriminatory because it allows what the proponents would see as a “benefit” to individuals with some disabilities, while explicitly denying it to someone with certain other disabilities, regardless of whether they lack capacity.
- I have no doubt that there is compassion behind the effort to pass this bill; there is also a degree of hubris that its clear dangers can be mitigated by reliance on doctors and whoever is envisioned as being present at the death. We live in a world that is facing a crisis in health care resources. I wouldn’t minimize the example of the state refusal letter that advised the Oregonian patient of her option to access a lethal medication. People with disabilities DO have a history of being seen as a burden and have every right to be concerned when the healing profession’s mission is proposed to be expanded beyond cure and palliation to include assisting suicide.
It is easy to see why people want the option of help to commit suicide. I have certainly lost friends and family to illnesses that were merciless. The questions that we must answer, though, are the broader ones. You are making public policy and though this might be a comfort to some few, it is your duty to take a wider look and consider the implicit contradictions in this proposal and the potential damage that could result from it.