Legalize Assisted Suicide? Not So Fast.
Thoughts from Jim McGaughey, Former Executive Director,
Office of Protection and Advocacy for Persons with Disabilities
A recently filed lawsuit has renewed debate about legalizing assisted suicide in Connecticut. Plaintiffs are two doctors who want to be able to prescribe lethal doses of drugs if their patients ask them without having to worry about being prosecuted under Connecticut statutes that prohibit assisting in suicide. They are represented both by local counsel and by lawyers from Compassion and Choices, a successor organization to the Hemlock Society. The State's Division of Criminal Justice, Chief State's Attorney and thirteen State's Attorneys (prosecutors) are all named as defendants. They are being represented by the Office of the Attorney General.
Earlier this year a similar challenge surfaced in the form of proposed legislation that would have legalized prescribing lethal doses of drugs to people with “terminal diseases”. Patterned after legislative proposals that Compassion & Choices is aggressively promoting in a number of other states, the bill was quickly withdrawn amidst indications that it would face a storm of protest from religious groups and disability advocates, and preliminary signals from the mainstream medical establishment that it is decidedly wary. In the wake of that reversal Compassion & Choices is trying again, this time through the courts.
Proponents of legalizing assisted suicide argue that it’s all about compassion and personal autonomy. Citing examples of individuals who have ended, or who apparently want to end their lives by taking lethal doses of prescribed drugs, they propose adoption of the euphemistic term “aid with dying”, and suggest that it be seen as a compassionate alternative to suffering intractable pain or endlessly intrusive, de-dignifying medical interventions. If all we hear is their side of the story it seems reasonable enough. After all, shouldn’t we have the option of avoiding an ignoble end? Shouldn’t our doctors be able to prescribe drugs that will do the job quietly and professionally? What’s wrong with just having the choice?
Leading disability rights groups see plenty of problems with it. A number of well respected organizations, including the National Council on Disability, the American Association of People with Disabilities (AAPD), the National Council on Independent Living (NCIL), the National Spinal Cord Injury Association, the World Institute on Disability, Justice For All, TASH (formerly called The Association of the Severely Handicapped), the Disability Rights Education and Defense Fund (DREDF), and grass roots groups such as ADAPT and Not Dead Yet have all adopted positions opposing legalization of assisted suicide. In fact, members of many of these groups have been teaming up with local independent living centers and state-level advocacy coalitions to challenge Compassion & Choices’ state-by-state campaign.
Their opposition is rooted in the realities of the disability experience. Advocates who have worked with newly disabled individuals, or who may remember their own experiences are deeply concerned about the impact legalization would have on people who may be struggling with difficult personal adjustments and, not infrequently, with depression. Even people who have lived with life-long disabilities may, at some point, find themselves facing anxiety and emotional distress over changing circumstances and difficult transitions. During such times people may feel like their lives are not worth living – a view that, unfortunately, can find support in a world that values strength, speed, youthful appearance, hard-driving, fast-paced achievement and material success, while unconsciously devaluing those who are not possessed of those characteristics.
The annals of the disability rights movement are punctuated with stories of individuals with significant disabilities who “just wanted to die” before coming to realize they could still lead good, contributing lives. Over the past thirty years the passage of civil rights laws and growth of the independent living movement have helped open doors for people with all types of disabilities to access a rightful place in the human community. So has the increasing availability of adaptive technologies, the emergence of advocacy and service providing organizations that recognize peoples’ potential, promote valued social roles and champion community living. But these changes are only beginning to affect public policy and funding streams. For far too many people with significant disabilities relevant services and culturally valued options remain elusive, and daily life is defined by the dismal realities of institutional care and low expectations. Part of the problem is that so few people in the health care world are even aware of the possibilities, much less know how to access the “good stuff”. In fact, most medical professionals remain poorly informed about the life prospects of people who live with disabilities. But there are also major infrastructure problems: lingering architectural barriers, insufficient accessible housing and transportation, and inadequate support for personal care assistance. And, while many communities have become more accepting, there has been no widespread moral revolution – no groundswell of outrage over the lives being wasted in facilities; no outpouring of concern and welcome for resettled refugees from the nursing home.
And so, there are also darker stories; stories about people who just couldn’t find their way out and who asked to have someone “pull the plug”. Instead of the suicide prevention interventions that would ordinarily have been provided to someone seeking to end his or her life, instead of concrete help in securing better living circumstances, the only assistance these individuals received came in the form of court orders protecting their “right to die with dignity”. To the extent that response is substantially different than the response afforded suicidal people who do not have disabilities, it is discriminatory. And, as with all types of discrimination, it is rooted in prejudice – an unconscious, pervasive pre-judging of people based on characteristics that are socially perceived as undesirable. Discrimination in the name of compassion and respect for personal choice is still discrimination. As one long-time Connecticut advocate put it: “Why is it that the only right we haven’t had to struggle for is the ‘right to die with dignity’?”
Given the ambiguous terms that proponents of legalization want written into law, and the considerable confusion that exists – even in the medical world - about the distinctions between disabilities and “terminal diseases”, there is a very real risk that people with disabilities who are depressed, but who also have many good years of life ahead of them will be given lethal prescriptions.
Proponents of legalization say they intend assisted suicide to be available only to people who are within six months of death. But the business of predicting the timeframe for an individual’s death is just not that precise. In fact, research on the question has demonstrated that medical prognostications regarding death are often unreliable, sometimes missing the mark by years. It doesn’t help that proponents insist on legislative language that defines the process as essentially a private transaction between doctor and patient. Their proposals provide no meaningful external oversight to prevent untoward influence, and require no suicide prevention interventions to help people sort out feelings that may be a result of previous trauma and loss, uninformed assumptions, or the irrational thinking that sometimes accompanies extreme emotional distress. And, it certainly doesn’t help that at least some proponents seem to be in the habit of “referring” people who cannot get their own physicians to write them lethal prescriptions to other doctors who are perfectly willing to do so.
But, even if these problems could be cleaned up, ambiguity and social ambivalence concerning distinctions between disability and “terminal disease” would remain. As people with disabilities are well aware, in the medical world the difference between “disease” and “disability” is more a matter of perception than objective diagnosis. Add the emotionally loaded, but diagnostically imprecise term “terminal”, and things get even less clear: Are Muscular Dystrophy or Multiple Sclerosis, or any number of other chronic conditions to be considered progressive disabilities or “terminal diseases”? What about people who are born with disabilities that involve multiple, complex medical issues or genetic syndromes that can, but do not always, result in shortened life expectancy? Or people with physical disabilities who may experience repeated, life-threatening infections or various other serious health issues? What about people who depend on life-support technologies? At what point would these people be considered “terminally ill” or “within six months of death”? Who would get to make those judgments, and how much would their decisions be influenced by stigmatizing stereotypes about “quality of life” and frank ignorance about the possibilities of living a good life with a disability?
What emerges from the experience in places that have legalized assisted suicide is a highly subjective decision-making calculus that is applied without independent scrutiny, and which is open to considerable abuse. In the Netherlands, for example, where assisted suicide has been legally tolerated for the past 35 years, many doctors now consider having a long-term disability with a “poor prognosis” for improvement to justify writing a lethal prescription. In addition to practicing active euthanasia - administering lethal injections to newborns with significant disabilities and to older people with dementia - some Dutch physicians see no problem with directly administering deadly doses of drugs at the request of people who have no physical signs of disease, but who are experiencing chronic emotional distress from conditions such as anorexia nervosa. Surveys indicate that at least some doctors admit to not even having bothered to ask – they just made the decision and proceeded to administer the drugs.
The experience in Oregon is also instructive. In Oregon, which legalized assisted suicide over ten years ago, doctors who write lethal prescriptions are required to supply certain after-the-fact data. While there is reason to question whether all of them do so, and the data being collected is minimal, a ten year statistical summary indicates that most of those who sought lethal prescriptions acted out of fear of future disability, not worries over dying in pain. The “suffering” people reportedly sought to avoid by committing suicide involved anticipated loss of “dignity” and “autonomy”, the prospect of losing control of bodily functions and needing personal care, and worries over the “burden” that continuing to live might place on others. In other words, the same things with which hundreds of thousands of people with disabilities contend on a daily basis. To disability advocates, who have spent decades fighting against negative stereotypes, this sends a frightening message: deliberately causing death is an acceptable, possibly even preferable alternative to the prospect of living, even briefly, with a disability.
Beyond these issues, advocates are also concerned about the impact legalization would have on health care policy. This question involves not only the behavior of insurers, providers and regulators; it also goes directly to questions of social acceptance, personal expectations and the realities of “choice” in an ever more complicated and costly health care system. There is so much to consider: Would the fact that a physician authorizes and intentionally assists in taking human life signal a fundamental change in the core ethic of a profession heretofore committed to saving and protecting life? Would the involvement of “professionals” who we traditionally trust for comfort and advice, confer legitimacy on a practice that has been historically discouraged, ultimately resulting in more people seeking to kill themselves? What influence would growing concerns about health care costs have on peoples’ perceptions about their “options”, or on the practices of providers and insurers? Would legalizing assisted suicide amount to de facto acceptance of the notion that there are some lives not worth living; some people who are just better off dead?
Many leading palliative care specialists oppose legalization, explaining that the examples of pain and suffering cited by suicide proponents are evidence of poor or misinformed medical practice, not of the supposedly “intractable” nature of terminal pain. Pointing to recent developments that have significantly expanded the knowledge-base and effectiveness of techniques that manage pain and other symptoms, palliative care physicians are urging a broad-based campaign to educate other practitioners about both these strategies, and about existing, lawful decision-making mechanisms that respect patient choice and self-determination. They are also calling for greater investments in specialized palliative care programs and hospice options, and, more importantly, in the basic personal care systems that people need in order to live with dignity, even in their final days.
While everyone seems to agree these investments need to be made, if we begin to accept suicide as an “understandable choice”, will we be more or less likely to make them? Again, consider the experience in the Netherlands, where physician awareness and investments in palliative care have lagged behind those of other European countries – a fact that some experts attribute to the prevalence of assisted suicide and euthanasia. Or, closer to home, look at Oregon, where the state Medicaid program makes deliberate, categorical decisions to ration medical care for poor people, and, at the same time, state law explicitly permits physician assisted suicide. Several cancer patients there recently received letters from the State informing them that Medicaid would not pay for the potentially life-prolonging, pain-relieving chemotherapy treatments prescribed by their doctors. However, the letters assured them, if they wished to avail themselves of assisted suicide, the State would pay for those final prescriptions.
This is chilling stuff. Before we glibly accept the notion that legalizing assisted suicide is about “compassion” or respecting personal “choice”, we ought to ask ourselves: what kinds of choices are we actually affording people? What would be the impact on social institutions, on government policies, on professional practices and on our collective values? And, above all, what impact would it have on individual human beings? At what point would the availability of this “option” become an expectation - a felt duty to ease the “burden” and cost of care for family members, or for society generally? Wouldn’t it be better to invest in truly compassionate care – to assure authentically humane choices for people approaching the ends of their lives - rather than cross into the highly problematic, morally questionable territory of legalized assisted suicide?
Proponents of legalization are right about one thing. This issue is about choice – the choice about what kind of people we are, how much we really care about each other, and what kind of world we want to live (and die) in.
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