Assisted Suicide and Autonomy

About once or twice a year a complete stranger will utterly shock me. One theme of such unwanted statements made directly to me involve the belief that I would be better off dead than alive using a wheelchair. Hard to imagine but some people freely share this sentiment with me. Last Spring for instance I was eating a slice of pizza at my favorite place and a man looked at me as he was walking by and stated "I would rather be dead than use a wheelchair like you". After this endearing statement the man in question simply walked out of the restaurant. Sadly, this man has company--too much in fact. Is it rare for a person to make such a rude statement? Thankfully yes but that does not mean the notion of "better off dead than disabled" does not exist. In the "olden days" as my son would say when I was paralyzed people with high cervical injuries that would require a respirator to survive often died when "nature was allowed to takes its course". The thought was that a life on a ventilator was not worth living. Today many respirator dependent quadriplegics survive and thrive--they lead full and rich lives. In fact there are so many that space precludes me from naming some of the more well-known people.

When it comes to disability fear, like it or not, is major variable. No one wants to have a disability and some, certainly not all, fear disability. I don't understand this fear but my lack of understanding does not negate its existence. Surely part of this fear is the loss of autonomy and control over one's body. Things we as humans take for granted are lost or at minimum change dramatically. I cannot walk and as a result use a wheelchair. I see my wheelchair use as nothing more and nothing less than an alternate means of getting around. However, daily activities do take longer--dressing, showering, getting in and out of the car etc. The big loss to me is not how I do things but rather the time involved. I lose much time daily doing stupid ordinary stuff. People unfamiliar with disability don't get this point and instead see something "remarkable" about the ordinary. For some, again not all, the idea of having or worse yet acquiring a disability is feared. How these people wonder would I cope? At the core of this fear is the American glorification of independence and autonomy. I would rather be dead if I could not walk is not too far from I would rather be dead if I was cognitively impaired or dependent upon others. This notion in turn leads some to think assisted suicide makes sense--and on the surface it does. We humans should after all be able to live and die as we wish. But do our wishes, our dreams, ever match reality? In a word no. We do not get to pick and choose how we approach the end of our life. We do not get to pick and choose our parent. We are constrained by many factors in our lives--economic, social and political to mention but a few critically important variables. End of life issues are no different. Yes, we should control how we die but none of us really makes such a decision. Americans have medicalized death--it is perceived to be a failure when in fact it is an integral part of the life experience. And at the end of life who really makes the final decisions? In most cases it is a doctor or family members and in some cases the person who will die. Those dying and those busy living often state autonomy is valued--that without personal autonomy life is not worth living. Well, how autonomous are we really? Autonomy is an illusion--we are all dependent to certain degree. No amount of "safe guards" will ever change that--including the push to make assisted suicide legal. For instance, he Oregon Death with Dignity Act requires that a person" be: 1) 18 years of age or older, 2) a resident of Oregon, 3) capable of making and communicating health care decisions for him/herself, and 4) diagnosed with a terminal illness that will lead to death within six (6) months. It is up to the attending physician to determine whether these criteria have been met."

The above sounds very reasonable--logical in fact. Superficially, yes. But the Oregon law, held up as a paragon of law making, has its fair share of problems. As one familiar with the medical establishment, I am all too aware of how subjective any given diagnosis can be. Deciding who and is not terminal is equally subjective. ALS for instance is an invariably fatal condition. Many with ALS die rather than depend upon a respirator. If they chose to be respirator dependent they could in some cases significantly extend their lives. This is but one minor example. The greater concern is with what some are calling "doctor shopping". Terminal patients in Oregon are seeking out doctors and hospitals that will provide lethal prescriptions. As a result, on average a patient will only know their physician for a few weeks if that. In a fascinating paper published by a British organization, Living and Dying Well, Professor Onora O’Neill challenges the notion of autonomy discussed above. According to O'Neill the debate that is waged over assisted suicide is dominated by stereotypes--the terminal patient in unbearable pain being the archetype. The reality is far more complex--what toll does a dying relative take on the person's family and "loved ones". What is the economic impact on not just the person dying but their family members? Can the family provide the desired care? What about the impact a seemingly "hopeless case" has on doctors and those professionals charged with care? We do not live in a social vacuum--our lives and bodies affect others. I know for instance my mere presence is upsetting to some. Surely those dying experience something similar. The point O'Neil makes is worth serious consideration as states across this country consider copying Oregon's Death with Dignity Act. As anyone with an ounce of common sense will admit we live in a flawed world populated by flawed people--and here I include myself. Given this I think it behooves us to seriously consider O'Neill's words and conclusions. She wrote: “In a world of idealized, wholly autonomous patients, and of wholly selfless and compassionate families and professionals, legislation providing for assisted dying might, if ethically acceptable, not be risky. We do not live in that world, and I doubt whether we can draft legislation that is safe for human beings with their full variety of situations and dependence on one another”.

Ashley Treatment in the Hastings Center Report

In the November/December issue of the Hastings Center Report growth attenuation and the so called Ashley Treatment is discussed. A subscription is required to read the feature article entitled "Navigating Growth Attenuation in Children with Profound Disabilities". However, the responses, excluding a commentary by Alice Dreger, can be accessed for free. I strongly urge readers to visit the Hastings Center website and read the most recent report. I have always been intrigued by the Hastings Center. It is a bioethics think tank that produces first rate scholarship. I do not always agree with what they publish--in fact I have strongly disagreed with some articles they have printed. However, even in disagreement I never questioned the academic integrity of what is produced. In addition, I have found such disagreement fruitful as it forced me to hone my views in response. Thus I am quite happy to see the work produced by the "Seattle Growth Attenuation and Ethics Working Group" in Seattle appear in the Hastings Center Report. It is my hope that the feature article and the responses will prompt a more nuanced debate about growth attenuation. To date, those for and opposed to growth attenuation have utterly failed to open a reasoned debate. While I am firmly opposed to the Ashley Treatment, I am willing to listen to its advocates. I only wish the same courtesy was extended to me and particularly those in what some people such as Norm Fost derisively refer to as the disability community.

The Hastings Center Report has published the following:

Feature article (subscription required)

Navigating Growth Attenuation in Children with Profound Disabilities: Children's Interests, Family Decision-Making, and Community Concerns
Bejamin S. Wilfond, Paul Steven Miller, Carolyn Korfiatis, Douglas S. Diekema, Denise M. Dudzinski, Sara Goering, and the Seattle Growth Attenuation and Ethics Working Group

Responses (free):

Offense to Third Parties?
Norman Fost

Discrimination against Children with Cognitive Impairments?
Eva Feder Kittay

Against Fixing a Child—A Parent's View
Sue Swenson

In Support of the Ashley Treatment—A Parent's View
Sandy Walker

Another Voice (subscription)

Attenuated Thoughts
Alice Dreger

I will leave it up to the reader to assess the individual contributions above. What I will do however is briefly quote each response and my reaction.

First, the words of Norm Fost:

"We [the working group] heard about disagreement and distress because a caring set of parents, with consultation from competent physicians and the support of an experienced ethics committee, pursued a treatment plan that offended the personal beliefs of some individuals and groups about the treatment of people with disabilities."

Fost is correct, the Ashley Treatment" offended many people with and without disabilities. But he utterly misses the point that Ashley X civil rights were violated. This is not an opinion, this is a statement of fact, a legal fact in the Sate of Washington. What Fost objects to the most is "third party" intrusion. This too is not a tenable position.

Second, the words of Sandy Walker:

When Ashley’s story became public, I was surprised by the reaction of those who identify themselves as “advocates” of persons with disabilities and their families. They spoke of the “perspective of the disability community,” as though Ashley and her family were not a part of it. I felt disenfranchised by the very organizations and individuals that were put into place to protect Jessica and our family. I also found that many of those speaking out against growth attenuation did not understand the enormous physical implications and limitations of children as involved as Jessica.

This is profoundly disturbing comment. We, myself included, in the disability rights community have failed this woman and her family. This cannot be tolerated. While I do not have a child with a disability, I certainly understand the discrimination children and adults with cognitive deficits encounter is far more pronounced than what I experience. This is inherently wrong and we in the disability community much do more to reach these families. They should never feel so disenfranchised.

Third, the words of Sue Swenson:

We would never allow our son to be placed in an institution. Institutional placement of children or adults with profound disabilities—being shut away from the community, rather than engaged with it—is no longer considered an option in civilized places. Fortunately, family support and home- and community-based supports for adults offer modern alternatives. Family support—services whose aim is to help families nurture and enjoy their disabled child at home—helped us learn to let go and gave us information about raising a severely disabled child: how to position him so he could participate in a broad range of activities, how to transfer him without lifting, how to support his mobility and find useful equipment, how to include him in everything, how to figure out what he wanted, how to think about his rights.

I can only state my categorical agreement with the above.

Fourth the, the words of Eva Kittay:

The Seattle Growth Attenuation and Ethics Working Group settled on the compromise that growth attenuation should be limited to severely cognitively disabled and nonambulatory children. I respectfully disagree. I do not believe that growth attenuation is ethically or medically appropriate, even when limited to children with profound developmental and intellectual impairments.
The compromise position rests on the assumption that the constraint will avoid many of its possible abuses. The problem is that the limitation is itself already an abuse. If growth attenuation should not be done on children without these impairments, then it should not be done on any children. To do otherwise amounts to discrimination.

Forceful words eloquently and wonderfully stated. Kittay's response is sobering. A class of people has been set apart and are potentially subject to a "treatment" that would be deemed objectionable if they were ambulatory or did not have a cognitive deficit. What does this say about the way our society views such people?

What to make of all this? I think something productive can come out of what the Hastings Center has done. I suggest the center consider organizing a one day conference on the Ashley Treatment. I would use the prestige of the Hastings Center to force people with entrenched views to come together in a civil fashion. I think people like Douglas Diekema and Norm Fost need to listen to their fiercest critics in the disability rights community who they have ignored or dismissed out of hand. In return disability rights advocates must treat these men with respect regardless of our opposition. The Hastings Center Report is a step in the right direction but much works needs to be done. Alice Dreger grimy noted: "I was invited to join the Seattle Growth Attenuation and Ethics Working Group—collective author of the lead article in this issue of the Report—but I begged off, claiming I had too many other things on my plate. True, but the bigger reason for avoiding the project was my suspicion that I would be torn asunder by the complexity of growth attenuation for persons with disabilities. Reading the essays from the group reveals that instinct to have been dead-on." Rather than be "torn asunder" I think it is in our collective best interest to work together.