In the last two weeks I have spent much of my time thinking about assisted suicide. In part this is the residual side affect of attending the American Society of Bioethics and Humanities conference (see my previous post). Another variable is the assisted suicide bill that will be voted on in Massachusetts. The confluence of these two events has made me retrospective; hence I have been thinking much about autonomy and independence. We Americans place great value on autonomy independence, myself included. Prior to 2010 I was fully autonomous and fiercely independent. I truly believe I was the master of my own destiny. I bought into this hook line and sinker. Autonomy was a given, it required no thought. When I was bed bound I mourned my loss of autonomy (I was truly miserable) but at no point did I think about what autonomous meant. In 2010 I would have said autonomy is obvious--autonomy is being fully in control of your life. That is maintaining the ability to work, care for routine daily needs, and have a functional home or place to live. I would likely have added disability highlights the interconnections between people and that no one is truly autonomous. Autonomy can also be achieved in many different ways and take on a myriad of forms.
When I was seriously ill I instantly realized autonomy was highly valued. I read the Patient Bill of Rights when hospitalized. I heard all about patient centered care though I never saw it in action. I was told strict confidentiality laws existed and protected me. I was shown what an advanced directive looks like and was encouraged to discuss this with loved ones. Not once did I hear the word autonomy. Looking back I cannot help but wonder why no one addressed autonomy. I know it was at the forefront of my mind. I have come to the conclusion that the typical person when accessing health care is willing to begrudgingly accept a short term loss of autonomy. However, for a person with a disability the loss of any autonomy is significant concern--if not fear. I suspect that fear is directly related to the belief that an identity tied to disability is assumed to be less. Less in this instance is dependence. If one is not independent one loses a degree of autonomy and respect. In a health care setting this lack of respect can be deadly. When respect is absent it is all too easy to make categorical decisions for others--these others need not even be present. These thoughts have been coursing through my brain this week as I read the most recent appeal in the Carter case in Canada. Here I refer to the court of appeal October 22, 2012 between Carter and the Attorney General of Canada, file number CA040079. In section seven of this document I came across a startling acronym: LAWYER. Apparently in the Netherlands compliance with assisted suicide legislation is improving but not yet at an ideal ten years after becoming law. This is hardly a surprise but what stunned me was that studies have revealed many cases of LAWYER exist: Life-ending acts without explicit request. You have to love the irony in the acronym LAWYER.
I am very curious if others have heard of the acronym LAWYER. I am especially interested in any comments from a person living in the Netherlands. Such acronyms reveal that language matters. The well funded Compassion and Choices is particularly good at marketing or more accurately lobbying for assisted suicide. Death with dignity sounds much better than assisted suicide. PAD is even better yet--physician aided death. PAD conjures up the image of a middle aged doctor, trim and fit, a hint of gray in his hair, and long time family physician caring for Grandma who is terminally ill. Out of the goodness of this man's heart he will ease Grandma's suffering. Her death with be peaceful and painless. She will be surrounded by loved ones. This is a great image devoid of reality. The reality is we do not get to choose how we die. We do not talk about death much to our own detriment. We do not like to talk about elder abuse. We do not want to talk about severely compromised new born infants who die because their condition was deemed incompatible with life. We do not want to talk about the financial implications of caring for a person at the end of their life--especially when choices come down to spending every last penny to support Grandma with funds that were supposed to go to help pay a grandchild's college tuition. We do not like to talk about the great health care costs associated with disability. We do not want to talk about people who are clinically depressed. We do want talk about people with a host of metal illness that may impair their judgment about the value of their life. Dozens of other examples or more exist.
I recently came across a fascinating essay by Carolyn Ells whose work I was not familiar with. In "Lessons About Autonomy from the Experience of Disability" in Social Theory and Practice she wrote about "situated independence". Ells wrote "one is independent only within the confines of one's situation... Access to social spaces and services and empowering relationships makes autonomy possible. In other words, situated independence is necessary to achieve the control necessary for governance". I am drawn to the concept of self governance and more broadly how we situate and define autonomy. Many of us are obviously and traditionally autonomous. But what of others who are not traditionally autonomous agents? Can a ventilator dependent quadriplegic be autonomous? What about a person with a serious cognitive and physical deficit? What about a person with Down Syndrome? We need to entirely rethink what autonomy means and how we can respect forms of autonomy that are not typical.
