Thank you for inviting me to discuss, as the invitation says, “how Act 39 is working, and whether not Vermont needs the safeguards.” For those of you who don’t know me, I have been a health-care related advocate and lobbyist on and off since 1987, when I worked for Vermont’s smoking in the workplace law; in 2003 for smoke-free bars, and in 2005 in my first stint as Advocacy Director for the Vermont Alliance for Ethical Healthcare.
I will try to limit my discussion to how Act 39 is working to events that have happened since the law was enacted in 2013. However a few relevant events occurred before then, and I will mention them in part because you have a new committee member who might benefit from hearing them.
Founded by Burlington physician and medical ethicist Dr. Robert Orr, the VAEH opposes physician-assisted death. VAEH contends that Act 39 creates added risk of unwanted death for Vermonters facing terminal illnesses, especially those with inadequate health insurance and family and peer support. Also at risk are elders facing abuse and Vermonters of all ages struggling with thoughts of suicide.
I am troubled by the apparent lack of detailed, accessible official reporting. A quick look at the Vermont Department of Health website shows that the only required “reporting” is essentially negative: the cause of death on a death certificate should cite natural causes, because “There is no medical or epidemiological reason to list the terminal mechanism of respiratory failure due to the medication overdose.” The death certificate – a public record – need not disclose how the person died. To our knowledge, there has been no effort yet, nor is any planned, to determine whether Vermont’s recipients of lethal drugs are in a health insurance financial crisis; are being pressured by a family member; have been evaluated for depression or desire to suicide by a psychologist with end-of-life expertise; or are being abused.
Last week, I mentioned to a senator my concern about pressure from a family member inducing a terminally ill person to seek lethal drugs. I was told that the scenario of “family members trying to get grandma to take pills so they can get her inheritance a few weeks early” just wasn’t realistic. Let me tell you what is realistic – so realistic that it’s happening. I’ve recently learned of a Vermonter – a resident in a county served by one of you – whose relative and chief caregiver is advocating for the lethal medication. The caregiver isn’t a bad person…just very, very tired, and in their own words is just too tired to keep doing this. And now that the pills are legal and available, death by prescription beckons as a way to stop the fatigue.
Pressuring an elderly person at end of life to order and swallow lethal drugs is an extreme form of elder abuse. And elder abuse, generically speaking, is a persistent problem in Vermont. According to the Vermont Center for Crime Victim Services, elder abuse is “A little-known but very serious social problem: elders and people with disabilities are, as a group, at high risk for violence, abuse and exploitation. National studies document that about 1 in 20 elders is a victim of violence and abuse. In Vermont, where the elder population is about 75,000, this would translate into 3,750 probable new cases each year. It is believed that only about one out of five of these cases ever gets reported.” Despite long-term, extensive efforts by the state government and not-for-profits to expose and stop elder abuse, it has been reported that over 1000 alleged cases were investigated last year in Vermont. Legalized assisted death gives the abuser another deadly weapon. It is chilling to read the testimony of Caledonia County medical ethicist Pete Gummere on the new Repeal Act 39 website, in which he recounts hearing a family member say of a terminally ill person, “I want him dead, dead, dead.”
Senators, you might ask how Act 39 could be amended to prevent this kind of abuse. The answer is – realistically, it can’t be. Vermont has robust child protection laws and reporting practices enforced by law enforcement, dedicated social workers, and society’s zeal to protect children. And yet still children die in their homes. Vermont’s laws, police, and social workers all would protect the elderly and disabled; yet they too are victimized, sometimes unto death. I ask you, senators, with assisted death having such minimal legal, reporting, and police protection by comparison – so minimal that the actual cause of death cannot even be accurately reported – what hope is there that all at-risk Vermonters will be protected? And is even one unwanted death as a result of Act 39 acceptable? I say no. If you disagree, I would respectfully ask you, how many.
On the matter of terminally ill Vermonters with inadequate end-of-life insurance – I know of a Washington County woman who died last year whose husband was forced to sell his most precious possessions to pay her nursing home bills. He loved his wife dearly and would sacrifice anything for her. But it is easy to understand that some families, facing financial drain, would implicitly or explicitly pressure the terminally ill family member to pursue relatively inexpensive lethal drugs.
Act 39 was passed two years ago in expectation that adequate universal coverage was just around the corner. Since then achieving that goal has been cast into question. So one of the most important assumptions – that no Vermonter would have cause to swallow lethal drugs to relieve their families of the financial burden of costly end of life treatment – remains unfulfilled. Without adequate end of life insurance coverage, unwanted death by lethal drugs remains a risk. We are concerned that it will only be a matter of time before Vermonters undergo the experience of Barbara Murphy of Oregon, who was denied cancer treatment she sought from her insurer but was offered lethal pills.
On the matter of the unwanted intersection between suicide and legalized assisted death, I must tell the story of my son, as Sen. Collamore at least has never heard it. My eldest son, Tim, was a constant suicide risk through his teens. Through the wise, compassionate help of state social workers especially in Rutland, Tim escaped his teen years alive, and is now 28. I can tell you that he was personally shaken by the implications, to him, of the proposed assisted suicide law several years ago. When he heard about it, my brilliant, troubled son began to shake in anger and almost despair. “Those hypocrites,” he said. “They’ve been telling me all this time that suicide is never OK.” It didn’t matter when I said the law is meant to address another set of problems – his teenaged hypocrisy-o-meter had already pegged assisted suicide as another example of “do as I say, not as I do, it’s all right for adults, not OK for kids.”
In recent weeks, there have been numerous press accounts of the first known assisted deaths in Vermont, as well as discussion of the Brittany Maynard death. While acknowledging that society must have a free hand in discussing public policy, I am concerned with the level of published detail. A Suicide Prevention Resource Center (www.sprc.org) memo urges reporters to voluntarily “avoid detailed descriptions of the suicide, including specifics of the method and location,” because “detailed descriptions increase the risk of a vulnerable adult imitating the act.” Furthermore, the memo cautions against “glamorizing the suicide of a celebrity,” because “research indicates celebrity suicides can promote copycat suicides among vulnerable people.”
As I reach the conclusion of my testimony, I am struck by how many of the stories I have told are my own. I do not believe my life experience is much different from the average Vermonter’s. I think that most Vermonters would, in a safe, constructive setting, tell their real-life stories. Because Act 39 is not even two years old, perhaps the Senate could wait until the second session of the biennium before voting on the sunset. As the sunset would not occur until July of 2016 if no action is taken, there is no harm, and much to be gained as more real-life testimony emerges.
Testimony of Guy Page, Advocacy Director
Vermont Alliance for Ethical Healthcare
To the Vermont Senate Health & Welfare Committee
February 18, 2015