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Sunday, August 14, 2016

Assisted Suicide: A life-style Choice

Death is in. Death by choice is a popular idea. Imminent death is a reason for celebration. Invitations are sent out. Let's party--but no tears please. Tears are not allowed. That is the only rule. Do not go home empty handed. Party goers are encouraged to take a souvenir from the soon to be deceased. This is not a parody. This is not some Saturday Night Live spoof. This is what assisted suicide legislation has led to. Countless news outlets are showing the happy face of Betsy Davis "rebirth" celebration. The pinnacle of the two day extravaganza was Davis death. She took a lethal prescription of morphine, pentobarbital and chloral hydrate prescribed by her physician. She had trouble obtaining the prescription. Outrageous! Big brother apparently watching physicians and pharmacists. Davis was an artist and one of her friends, a cinematographer, deemed her death as a "final performance". Davis death her friend gushed: "what Betsy did gave her the most beautiful death that any person could ever wish for... By taking charge, she turned her departure into a work of art". Here is photographic evidence, proof I am not writing a satire.

Various low brow news sources such as People and tabloids like the NY Post and others gushed about how beautiful Davis death was. Reputable news outlets were equally effusive. Davis was described as the text book case for assisted suicide. Davis has been diagnosed with ALS and was very clear she did not want to be entombed in her body dependent upon breathing machines. Davis spent months planning her party and had the full support of her family, physician, and friends.

We have arrived at a perverse destination. In states where assisted suicide is legal death has become a life-style choice. Assisted suicide is a life-style choice. Read that again, please. Davis is not alone in her decision to exercise her "right" to die. Yes, death thanks to years of advocacy, successful advocacy, is now popularly framed as the right to die. Individuals who live in states where assisted suicide is legal have the right to die. They can exercise this so called right. I find this hard to comprehend. Led by Compassion and Choices and many well known figures it is popularly assumed all people have the right too die. A host of celebrities have affirmed this and Compassion and Choices in recent years has been wildly effective in manipulating the mainstream press into supporting assisted suicide. NPR's Diane Rhem is outspoken in her championing assisted suicide and is deeply embittered her husband was denied the right to die.

I am stunned by how widely accepted the belief is that we have the right to die. This so called right is human pride and the glorification of a narrow definition of autonomy taken to an extreme. The idea we have the right to die is misleading rhetoric. It is wildly successful misleading rhetoric. For example, every Fall I teach a class at Syracuse University Bioethics and Disability. I take a life cycle approach, starting with ethical dilemmas associated with conception and birth and end with issues associated with end of life care. In the last three years I have learned to expect 100% of my students are firmly in favor of assisted suicide legislation. More generally when I express my opposition to assisted suicide legislation to typical others they are not happy. They assume I am deeply religious for I am repeatedly told there could be no logical reason for being opposed to assisted suicide. I find this distressing and find myself increasingly unlikely to broach the subject. Assisted suicide as popularly framed is a stark dichotomy of yea or nay. There is no middle ground and tempers run hot.

Rraming death as a right conveniently ignores the inherent worth of the individual. The individual in the case of assisted suicide is often terminally ill and the paramount fear is that one will suffer. Suffer is code word for becoming disabled; ALS being the worst case scenario. Hence a diagnosis of ALS now comes with a chilling option: assisted suicide as a life style choice. The decision to choose assisted suicide will be met with universal support. No one wants to be "entombed" in a body that is grossly dysfunctional. Life with ALS is a fate worse than death. Total paralysis, especially locked in syndrome is the greatest fear of all. Davis is the post card image of tragedy. Here I am not denying ALS is a devastating condition. But pardon me for noting that we humans, all humans, should garnish minimal respect. By minimal respect here I believe we have the right to live. Liz Carr recently reframed the right to die being discussed In Britain as the right to live and wrote:

perhaps we should be looking at how we can offer greater choice to all people at the end of their lives and not just the few who want a physician assisted death? The Assisted Dying Bill would establish medically assisted suicide as an acceptable and even expected societal response to pain, disability, life limiting conditions and terminal illness. This is to ignore the social factors, such as poverty and lack of social care that can also create suffering in people’s lives. Denied the support to live – or die - with dignity, is it any surprise that people feel they have no choice but to end their lives? What terminally ill and disabled people need is an Assisted Living not an Assisted Dying Bill. Supporters of assisted suicide will tell you that the current law is broken but the current law is exactly where it needs to be when the consequences of making a mistake would be murder. Safety of the many has to overrule the desires of the few. What is broken, however, are the social and health care support systems which are currently failing us all, both during and at the end of our lives. Whether for or against this law, we all deserve as pain free and comfortable death as possible. Legalising medically assisted suicide is not the solution. Link:

I never cease to be amazed at how the wants of a very few privileged people such as Davis garner so much attention. I marvel at how the focus on choice is used to mislead. I recently read Peter Kurti "The Myth of the Right to Die" who eloquently addressed the rhetoric associated with state endorsed euthanasia. In this case, I refuse to use the euphemism "the right to die" for we are really talking about the legality of euthanizing human beings believed to be terminally ill. Let's be clear with our words here. Kurt wrote:

Proponents of the right to die defend this ownership of the “end” and argue that they want to uphold the key principle of individual freedom. Freedom is a basic good, they say... This absolutist view of autonomy comes very close to asserting that the desire or the choice—or even the need—to die must be understood as a right to die. Choice is paramount; but choice has little to do with “rights”. While I can certainly choose to end my life and may desire to do so, the idea that I have a right to do so is not simply erroneous. By harming the web of social relations and obligations comprising community and family life, claiming a “right to die” actually threatens to tear at the fabric of civil society and do irreparable harm to the social roles and attachments constitutive of individual identity. Exercising the freedom to end one’s own life is coming to be seen as a mark of autonomy and independence of mind. But this view, although increasingly widely held, is mistaken because it ignores prevailing social proscriptions about suicide. The “right to die” is a rhetorical device intended to halt further discussion about the acceptability of self-inflicted death. The “right to die”, in other words, is a myth. Link:

People like Davis have plenty of opportunities to make a myriad of choices about the manner in which they willing to extend their life. All people have the right to refuse medical care. One can forego taking life savings antibiotics when an infection is present. A parent with deeply held religious beliefs can refuse to allow physicians to give their child a life saving blood transfusion. The right to refuse medical treatment is a right held by all who are capable of giving informed consent. This is not a right to die or a right to be killed with a lethal prescription. There is a huge ethical gulf between a physician who specializes in palliative care giving a patient pain relief, ameliorating suffering and prescribing a lethal dose of medication. Advocates for the right to die are using euphemistic language to gain the moral high ground. This tactic is working. For example, Davis's sister wrote:

Early on, she knew she’d rather take her own life than succumb to a disease that kills most of its patients through suffocation. Some ALS patients use ventilators and feeding tubes to prolong their lives, but that’s not what my sister wanted. Over the last year, I watched her increasingly struggle to eat and speak and do the simple things the rest of us take for granted, like scratch an itch or brush a stray hair from her eyes. No longer able to walk, she spent most of the day in bed. Link:

No physician could force a patient to accept a feeding tube. No physician could force a patient to use a ventilator. These are choices Davis chose to make. At any point after she was diagnosed with ALS she had the choice to refuse treatment. Physicians could be opposed to Davis refusal to utilize life extending care but that would be her choice. The operative word here is choice. Davis made many choices post ALS diagnosis. In June of this year Davis made the choice to live long long enough to end her life via assisted suicide. She made these choices and many more. But there is a difference between making these choices and her human rights. Choice are not the equivalent to rights. Given the severity of ALS any one of a number of choices Davis made could have led to her death. Instead, she made a choice to die a very public and misleading death. In her effort to advocate for assisted suicide legislation she has had predecessors who also had public deaths on behalf of Compassion and Choices. The emotional rhetoric found in tabloids such as People sells. Sympathetic television news segments generate ratings. Again, this misleading emotional made for mass media consumption works. The fact it is wrong is lost in the flow of tears. I too cry but not for Davis but for all those whose lives are at risk.

Having been through the medical mill as a morbidly sick child and narrowly escaping death from a severe wound that took over a year to heal, I will readily admit I have suffered. That suffering has taken the form of gut wrenching pain and serious debilitating depression. Suffering is decidedly unpleasant but to expect to avoid suffering throughout one's life is not realistic. I do my best to avoid suffering but I can freely states I have suffered far more the average human being. Not to revert to my Catholic upbringing but I can state with certainty that suffering has made me a stronger human being. In an effort to eliminate suffering we are being foolish. I don't want others to suffer but like it or not all humans will suffer. Suffering is part of the human condition. The effort to avoid suffering is understandable but unrealistic and there is more than a bit of narcissism involved. Hence the death selfie:

I am sure my words will be met with disgust by those who support assisted suicide legislation. How dare I criticize a person's "right to die". How dare I impose my beliefs on others. Some will proclaim I am an opponent of individual freedom. Others will proclaim I want to undermine autonomy. This makes good fodder for debate. Typical others thoroughly enjoy such a debate. A perfect example of such a "good natured debate" can be found the edited volume Cognitive Disability and its Challenge to Moral Philosophy. Read Chapter 22 and the exchange between Eva Kittay, Jeff McMahon, and Peter Singer that illustrates we are talking about a two tiered morality in which some lives have more value than others.  I know this two tiered system all too well. Most of my life typical others have made it abundantly clear my life is inherently less. Paralysis is a fate worse than death. My body in Davis estimation has been entombed. This viewpoint is wildly wrong. I know this. Liz Carr knows this. My paralyzed peers know this. My blind and deaf friends know this. Our ability to thrive in the face of a myriad of bodily deficits should be celebrated as human adaptation at its finest. Instead, we get the message loud and clear. We are inherently less human. We are a burden. We are a drain on limited health care resources.  All things considered, it would be in the best interest of society if we did live. This is couched in polite language of course. Everyone is kind to the handicapped. We cripples are special. We have your best interests in mind I am told. When I hear these words, "we have your best interests in mind", I am certain of one thing: I shudder in fear and get as far away as humanly possible from the person that uttered those dangerous words. Believe me, I can take care of myself. I have thrived in a hostile world for over 35 years. Don't be fooled by emotional rhetoric surrounding the right to die. See it for what it is. Needlessly premature death to lives worth living. 

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