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A Matter of Dignity

When, years ago, I first heard of the Hemlock Society, the idea that a person wishing to end his or her life could be helped by friends or family, struck me as a courageous, radical idea. Ignorant about the subtleties of such a proposal and eager to rebel against any organization’s prohibitions of suicide, I sympathized with the Hemlock Society’s goals as humanitarian. It was a case of honoring individual rights. Now, however, the debate on personal choice is being used to create public policy that puts too much of the power of this final solution into the hands of physicians and insurance companies. This is a very different and troubling matter.

I have a disability, blindness, once a largely accepted reason for suicide. I came to my experience with disability after a background of educational privilege and economic and personal opportunities. I have had access to resources and support. Society does not consider me a burden and my own conviction that I am not a burden to society or friends and family makes my case very different from many others. Many individuals with significant disabilities are viewed by doctors and others as having a life not worth living and are not getting needed services. I am troubled as well by what this proposal means for those who are poor and uninsured.

There are many reasons to be concerned. It is dangerous to legalize physician-assisted suicide when health care is severely rationed. People living with disabilities or in poverty are often discriminated against and disparaged. The bill gives doctors a role many are not prepared for and others do not want. Some physicians provide sensitive, compassionate and effective end of life care. Some- but not all. Given the well-documented inability of many physicians to deal with death humanely, I for one would not want a physician to judge or be the arbitrator of the righteousness of my demise. Protecting doctors and hospitals from liability- as the bill now being considered does- represents a dangerous trend in public policy.

I said that I came to this issue from a life that included privilege; I also carry another history. I left Europe at a time when doctors put individuals with disabilities, Jews, and political dissidents to death. The eugenics movement of the 1930’s and 40’s, a philosophy formulated in this country (specifically in Vermont) and in Germany, used forced sterilization to eliminate “less worthy” or “less successful” humans. Fear and the desire for control led to bad public policy. I don’t want to see that happen again.

The desire not to be a burden or the fear of dealing with disability or death can make a lethal prescription seem like the only choice. Lack of access to effective and legal pain management and respectful end of life care also has the potential to promote a desire for death; even when death is not certain.

This bill does not promote improved access to and funding for effective pain management services, hospice supports and responsive end-of-life-care. It only protects the doctor’s role in ending life. A more rational approach- such as universal health care- would make sure that palliative care, hospice and skilled pain management are available. Given the recent advances in palliative care and hospice, very few individuals need to have untreatable pain. The benefits of this bill for the small number of individuals whose pain cannot be successfully treated by current advances in pain management do not outweigh the potential risks to many other individuals whose lives and legal protections would be put at risk if the proposed “Patient Choice at End of Life” bill were passed. Real choice requires much more than this bill offers.

Andrew Potok is the author of A Matter of Dignity, Changing the World of the Disabled. He lives in Montpelier.