The Vermont Senate Health and Welfare Committee heard testimony on Wednesday on Act 39. The two questions being examined: “Is Act 39 working?” and “Should the sunset provisions in Act 39 be repealed?” Testimony was heard from a dozen people, nearly all of whom acknowledged that there are problems with the law, including the lack of documentation required, and the scarcity of safeguards in it, problems that cannot be fully addressed by repealing the sunset provision (not to be confused with a full repeal of Act 39).
Following the testimony, Committee Chair Sen. Claire Ayer told the Committee that she did not want to tie up legislative time fixing everything wrong with Act 39, with or without the sunset provisions, and said they would craft a sunset-repeal proposal to present to the Senate. End of discussion.
(A news report on the hearing can be found here: http://www.sevendaysvt.com/OffMessage/archives/2015/02/18/senate-panel-limits-debate-on-end-of-life-law)
There were some revealing off-script remarks at the hearing, especially those aimed at talking about death-by-lethal-prescription without using the “S” word. During one particularly uncomfortable exchange with Kathy Lesser, the sister of Maggie Lake, who ended her life earlier this year using a doctor’s prescription under Act 39, Committee Chair Sen. Claire Ayer asked Lesser to comment on the notion that intentionally swallowing a lethal dose of drugs in order to bring one’s life to a close could be considered “suicide,” something Ayer clearly thought to be absurd. She tried to ask the question and prompt the desired response without actually using the word “suicide.” Lesser appeared not to immediately understand the question and Sen. Ayer struggled with rephrasing her question several times before eliciting the response she seemed to be looking for—affirmation of her point of view.
It’s important to clarify why “suicide” is accurate terminology. Proponents use selected cases to obfuscate the reality that death at one’s own hands is by definition, suicide. That the person freely chose to “hasten” an imminent death while in the late stages of a terminal illness may well bring comfort and closure for remaining family members, and salve the consciences of lawmakers who want to put on blinders about the dangers of Act 39, but it does not change facts. Death by intentional prescription overdose is suicide.
Unfortunately, nothing in the law prevents people from “choosing” such a death for reasons that don’t fit Act 39 proponents’ narrative –reasons most of us would call “suicide risk factors.”
For example, in Oregon, the top reasons people give for requesting assisted suicide are (1) loss of autonomy, (2) loss of the ability to engage in activities that make life enjoyable, and (3) loss of dignity. Most people without terminal illnesses who express a desire to die for these reasons would be considered suicide risks and given suicide prevention treatment, and yet, for those thought to be terminally ill, prescription death is a “treatment option.”
Such discrimination in Act 39 will not remain limited to the terminally ill. Many people with disabilities need help to live; they are not autonomous. They cannot do many of the things abled people consider enjoyable. The looks they get and the remarks they and their loved ones hear show that they are not regarded as having dignity.
Lynn Cleveland Vitzthum testified on behalf of the Vermont Center for Independent Living, an advocacy group for disabled Vermonters. When she began to speak about the vulnerabilities of disabled Vermonters under Act 39, Sen. Ayer acted swiftly to shut her down, dismissing it as not relevant to the central purpose of the hearing. Although Ayer later apologized and allowed Vitzthum to finish her testimony, she didn’t stop from arguing with Vitzthum when she tried to explain why Act 39 puts disabled people at risk.
“But disabled people do not have terminal diagnoses! They are not eligible to use Act 39,” Ayer insisted. That Sen. Ayer and others don’t understand this vulnerability, and can’t imagine how Act 39 might lead to a “duty to die” mentality for the disabled, the aged and the financially insecure, speaks volumes about their lack of understanding of the lives of these vulnerable people. Many of them would immediately become terminal if they declined care or it were denied to them. Many of them tell horror stories about how they must fight to get the services that make it possible for them to live. Such services are expensive, and our health care environment is focused on cost cutting. Reason tells us that, with the availability of the cheaper option of assisted suicide, their fight for care will get even harder.
Vitzthum responded with a personal story, one which is included in her testimony and is excerpted here:
“I have experienced the prejudice that leads to abuse many times over the course of my son’s life, the most horrific instance being when my son was eight years old and had developed pneumonia. My son’s pediatrician took me into the hallway and gave me two treatment options: he could prescribe antibiotics or we could “let nature take its course”. When his second option elicited a quizzical look from me, my son’s pediatrician went on to explain that perhaps “letting Conor go” was the better choice in order to spare me the “lifetime work” of raising a child with autism and cerebral palsy. Would that second option have been offered to me if my son had been a typical eight year old? I think you and I both know it wouldn’t have been. It was only offered because Conor was a child with disabilities.”
Had assisted suicide been an option for that pediatrician, does anyone really think he would not have called it “the better choice”?
The question, “Is Act 39 working?” is the wrong question. It’s clear from the testimony that we do not know how it is working, and the structure of the law makes it impossible for us ever to know. Ayer flatly declined to consider the suggestion of Dr. Phil Brown, Chief Medical Officer of Central Vermont Hospital, that the Vermont law be amended to require the kind of reports the Oregon Health Department is required to issue every year. The lawmakers have never even considered requiring witnesses when the patient takes the drugs, something that would be of help in preventing euthanasia, coercion, or even murder.
The questions the committee should be asking are, “Has Act 39 put vulnerable people like Vitzthum’s son at risk? Will it put them at risk when it becomes, as it surely will, just another ‘end of life option,’ instead of an interesting experiment that appeals to privileged people used to getting what they want? What will it mean for the vulnerable when doctors stop resisting and obey the existing Vermont statute that requires them to tell every patient about it along with their other end of life options?”
The answers to those questions are not as pleasant to ponder as the anecdotes of storybook assisted suicides that the Committee chose to hear Wednesday.
The Legislature would do well to listen to those who are crying out to be heard and understood. Are other senators going to make sure they do listen? Does a single senator have the courage to stand up and demand that this version of the bill, never debated in 2013, be debated now? True Dignity hopes so.
Testimony given at the hearing can be found here: http://legislature.vermont.gov/committee/document/2016/27/Date/2-18-2015