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True Dignity Vermont is a grassroots, independent, citizen-led initiative in opposition to assisted suicide in Vermont. Vermonters deserve true dignity and compassion at the end of life, not the abandonment of assisted suicide. Killing is not compassion, and True Dignity Vermont will work to ensure our end-of-life choices respect the dignity of all Vermont citizens.

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The House Human Services Committee this afternoon voted to approve S.108, the bill that calls for the repeal of the “sunset provision” in Act 39 (not to be confused with a wholesale repeal of Act 39). It is expected that the bill will be debated on the House floor next week, possibly Wednesday.

“Repealing the sunset” would mean that the law will retain the few so-called protections that were included in the original bill that was passed and became law in 2013. Without a repeal of the sunset, these minimal protections, which primarily relate to the procedure around obtaining a prescription, are scheduled to go away in July 2016.  As Guy Page testified last week on behalf of the Vermont Alliance for Ethical Healthcare, “Without the sunset, Act 39 gets an ‘F’.  With it, it rates an ‘F-minus’.  A distinction without a difference.”

Despite hearing compelling testimony that highlighted the need to scrap Act 39 altogether, the Committee voted to move forward with S.108. They attached a virtually meaningless amendment to give the Department of Health permission to create a report on compliance with the law and to release non-identifying information to the public.   The amendment followed lengthy discussion about concerns relating to the lack of data collection called for under Act 39, and the difficulty of evaluating the law with so little data.   It will be impossible to study patterns, such as whether socio-economic barriers contribute to requests for physician-assisted suicide or whether certain health care providers are associated with higher use of assisted-suicide.

The only official information known is how many prescription applications have been completed properly, according to the Law.

Among the many data points not known nor required under Act 39:

How many prescriptions are actually written; how many prescriptions are taken; whether anyone was present at the time of ingestion; whether there were complications; how many patients died from their underlying illness without taking the prescription; what happened to the lethal drugs if the patient died without taking them; how many patients have outlived their 6-month prognosis; was the patient still capable of making a decision at the time the lethal dose was taken; was the person able to self-administer the lethal medication; how long did it take to die as a result of taking the lethal dose; did the patient have access to quality medical care and palliative care.

These are just a few of the many unknowns related to Act 39. Advocates for Act 39 have sought out and publicized a couple of instances of people using Act 39 to end their lives, suggesting that these cases are illustrative of all situations. We know that is not the case, and that abuse, coercion and even murder are all possible under this law.

All we really know about Act 39 is that it is a terrible, dangerous law– a tragedy waiting to happen.

As we have been saying for years, “good law has little or no negative unintended consequences.” Act 39 does not meet that test. Call your representatives today, if you haven’t already, and ask them to vote for nothing less than a wholesale Repeal of Act 39.

Last week, Guy Page, Advocacy Director for the Vermont Alliance for Ethical Healthcare, gave testimony before the Vermont House Human Services Committee on S. 108, the bill to repeal the sunset provision in Act 39.  As the bill works its way to the House floor, one hopes legislators will study the examples used in this testimony to highlight the dangers in Act 39, and consider whether a wholesale repeal is in order.   At the very least, lawmakers would do well to slow down the relentless charge forward being taken by proponents of Act 39, who seem determined to ignore the many concerns being raised and simply whitewash the flaws in this very bad law.

Page’s testimony:

Thank you for inviting me to discuss how Act 39 is working, and whether or not Vermont needs the safeguards. 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 I may mention a prior event to provide context and because you do have several new committee members.

The VAEH is comprised mostly of physicians who oppose 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.  We agree with the Vermont Center for Independent Living that assisted death adds to the already considerable risk of unwanted death for elders, people with disabilities, and people struggling with suicide.

Even before I heard Commissioner Chen’s testimony yesterday, I was troubled by the lack of detailed, accessible official reporting. 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.” Yet it would be of great value for public health research. The death certificate – a public record – may not disclose how the person actually died. This is incomplete if not actually misleading. Has any thought been given to listing the underlying cause of death with the addendum, “per Act 39”. This could be a first step to serious study about why terminally ill Vermonters choose to end their lives. This committee should seek to determine whether Vermont’s recipients of lethal drugs are in a health insurance financial crisis; face family and/or caregiver pressure; have been evaluated for depression or desire to suicide by a psychologist with end-of-life expertise; or are being abused. Of the small but growing number of Vermonters requesting these lethal drugs, we have no way of assessing whether these real life issues affect their decision. Specifically, you could exercise your role as oversight committee of the Health Department and request a summer study. You could also amend the law to require collection, study and appropriate sharing of this relevant information.

And even if you take none of these steps, you could at the very least wait a year, letting time serve you. This law is just two years old. Let another year inform you, and then take whatever action seems best regarding safeguards, with plenty of time to spare before July 2017 sunset.

Your committee can best serve the needs of these at-risk Vermonters by collecting and sharing needed information about their needs and their risks.

Consider this: earlier this year, I mentioned to a legislator my concern about a family member pressuring a terminally ill person to seek lethal drugs. I was told this 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 recently met a Vermonter suffering from years of cancer 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 caregiver’s fatigue.

Yesterday Oliver Brody said Maggie Lake’s daughter “prevailed on her” at one point to continue living. Clearly Maggie had a loving, supportive family. I am concerned that other Vermonters with less support will be “prevailed on” too – but to not continue living. Prevailing happens.

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.”

Will tweaking Act 39 prevent this kind of abuse? Realistically, no. 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 many are victimized, sometimes unto death. With assisted death having such minimal legal, reporting, and police services by comparison – so minimal that the proximate 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.

VAEH is concerned about how Act 39, and a doctor’s affirmative duty to inform terminally ill patients of all options per the Patients’ Bill of Rights passed before Act 39, would seem to require physicians to tell terminally ill patients that lethal drugs are among their options. The vital relationship of patient-doctor trust is threatened if a doctor must tell a patient that maybe he or she should consider ending their life.

On the matter of inadequate end-of-life insurance – I know of a Washington County man who was forced to sell his most precious possessions to pay his terminally ill wife’s 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 insurance coverage was just around the corner. Much has changed. An important assumption – that no Vermonter would have cause to swallow lethal drugs to relieve their families of the financial burden of costly end of life treatment – is now unsupported. Without adequate end of life insurance coverage, unwanted death by cheap lethal drugs remains a risk. People in other states have been told, “we won’t pay for your cancer treatment but we will pay for your pills.” Is this happening to Vermonters? As a heath care oversight committee, will you take the time to find out?

As to the unintended connection between unwanted suicide and legalized assisted death, I must tell the story of my eldest son. As a teen he was a constant suicide risk. Through the wise, compassionate help of state social workers, he escaped his teen years alive. Some years ago he sat in the well of the House and listened to testimony at a large public hearing some years ago. Not having made the connection myself, I asked him afterwards what he thought of the meeting. My brilliant, troubled son began to shake in angry fear. “Those hypocrites,” he said. “They’ve been telling me all this time that suicide is never OK.” When I said the law is meant for adults at end of life, his teenage hypocrisy meter just pegged my response as one more example of “do as I say, not as I do, it’s all right for adults, not OK for kids.”

My last story illustrates the best path for Vermont and addresses a concern raised by Oliver Brody. Before she died on March 7, my mother was under the care of Dr. Zail Berry, a palliative care professor and physician and a longtime member of the Vermont Alliance for Ethical Healthcare. I believe I heard Dr. Berry testify before this committee, perhaps eight years ago, that end-stage cancer patients can be both conscious and substantially pain-free. This assertion proved true for my mother. Despite an aggressive cancer that was shutting down her body, my mother was relaxed and talking with us just a few hours before 11 pm March 6, when she went to sleep, and died the next morning. I don’t know what my mother thought about Act 39. I do know the circumstances of her passing were, to me, an example of what Vermont must strive for: the highest standards of palliative care education and practice for Vermonters at end of life.

As I reach the conclusion of my testimony, I am struck by how many of the stories I have told are my own. I lead a pretty typical life. I think that most Vermonters would, in a safe, constructive setting, tell their real-life stories. I ask this committee to take the time, and take the lead.

 

 

 

 

 

Vermont House and Senate Committees have taken limited testimony on how Act 39, the assisted-suicide law, is currently working. Throughout that process, the multiple flaws in the law were exposed by those who were able to testify against the law.  Despite the known dangers, those in positions of power are intent on sending a bill to the floor that keeps Act 39 in place, with no changes to the original language of this fundamentally flawed law.

Action will be taken on the House floor as early as Thursday of this week.  We urge you to take the time to call or email your legislators in the next two days with this simple message:

Please vote to REPEAL ACT 39 ENTIRELY!

The Pro-Suicide groups started their calls already and we need to make calls to show that Vermonters do not want this law.

Please read and follow this closely:

  1. First go to http://legislature.vermont.gov/people/ and get the names of all your Representatives.
  2. Politely call the Sergeant-At-Arms at the State House:
    1. 802-828-2228 or 800-322-5616
    2. You may get a busy signal, but please keep trying.
  3. You will be asked to give your name and town.
  4. Politely ask for the following message to be delivered to your Representatives. The message is Please vote to REPEAL ACT 39 ENTIRELY!
  5. It is important that you leave a message for each Representative by name.

 

After you have called

Encourage your friends to call as well.
Send emails individually to your Representatives
This is less effective than a call but can help support Representatives in their Repeal decision. You can find their emails through http://legislature.vermont.gov/people/

Thank you for your help Repealing this Bad Law!

white board Room 46     Boldly displayed on a dry-erase board in Room 46 at the Vermont Statehouse, the meeting room for the House Human Services Committee, is a short list of principles the Committee has established to guide them as they consider legislation that affects Vermonters.

The very first goal listed is: “Ensuring that vulnerable (Vermonters) are safe and protected.”

After two days of testimony and discussion by the Committee on the topic of S.108 and the specific question, “Is Act 39 working?” it seems clear that at least some members of the Committee have chosen the “see no evil, hear no evil” approach to evaluating whether vulnerable Vermonters are safe and protected under this dangerous law.

Committee Chair Ann Pugh refused the request of Meghan Schrader, a 32-year-old with a poignant personal story of how legal assisted suicide has affected her, to testify before the Committee. Meghan, who is autistic, disabled, and suffers from depression, shared her story in a compelling op-ed in the Waitsfield Valley Reporter that we linked on this blog April 16. She wrote, “During a particularly horrible bout of depression, I thought, ‘Maybe the assisted suicide advocates are right; maybe God is allowing this to happen because it is OK; I am a burden to my family and so maybe it would be OK if I killed myself.’ I wound up hurting myself impulsively and going to the emergency room. I know that the people behind Act 39 do not intend for such things to happen, but that does not change my experience.”

Thankfully, Meghan has good family support and a strong safety net, and she has recovered fully from this incident. She has shared her story in order to help others–others who, unfortunately, may not be as lucky.

In a Forbes Business Online opinion piece Dec. 29, Forbes writer CJ Arlotta discussed suicide contagion following on the heels of the high-profile story of Brittany Maynard, the terminally ill 29-year-old woman who was made famous by right-do-die advocates by ending her life November 1 under Oregon’s assisted-suicide law. He quoted Dr. Will Johnston, chair of the Euthanasia Prevention Coalition of British Columbia, who said, “We see how suicide contagion works when the media admire the suicidal person and speak of suicide as a form of heroism. I hospitalized a young suicidal patient 10 days ago who told me how he had done an Internet search for suicide drugs after watching the slick video glamorizing Brittany which was produced by the Hemlock Society (now Compassion and Choices).”

Suicide contagion is real. We know that non-assisted suicides have risen steadily in Oregon, where assisted suicide has been legal since 1998. The rate of non-assisted suicides, which had been declining for a decade prior to legalization of assisted suicide, immediately began to rise upon legalization, and has continued to do so.  By 2012, it was 41% over the national average.

Scarily-enthusiastic proponent of assisted suicide Dr. Diana Barnard, who testified before the Committee by phone on April 16, stated repeatedly her opinion that what has happened in Vermont so far “mirrors Oregon,” and that she expects that mirroring to continue. One might fairly conclude that if Dr. Barnard is correct, the incidence of suicide contagion in Vermont will also mirror the pattern in Oregon.

Are we willing to accept even one such death as a result of Act 39?

If our Legislators are truly committed to examining “How Act 39 is working,” they need to take time to listen to people like Meghan Schrader and to be willing to consider whether the cracks in this bad law are too big to fix.

10952799_10153131395409399_8522902761206118816_nThis is a great piece published in today’s edition of Valley Reporter, written by a brilliant young woman of Brittany Maynard’s generation, a graduate student in disability studies at the University of New Hampshire and a person with a disability.  Here is her picture. True Dignity believes the article is important for its analysis of how assisted suicide is likely to affect marginalized groups in our society and especially for the author’s personal story about how reading certain ethicists’ justifications for legal assisted suicide has interacted with her disability, with results that could easily have been tragic.  This is how suicide contagion works, and it is exactly what we’ve been warning about.  Our legislators appear not to care.  Will they listen to this true story?

http://valleyreporter.com/index.php/en/news/myview/10583-systemic-injustice-of-assisted-suicide

      The following is the written testimony submitted to the House Human Services Committee, and given in person by Lynne Cleveland Vitzthum of the Vermont Center for Independent Living.  Kudos to Vitzthum for staying on message through repeated attempts by Committee Chair Anne Pugh to insist that disabled people are not vulnerable under this law.
      This testimony and the others presented are available at the website of the Vermont General Assembly under this link:
http://legislature.vermont.gov/committee/document/2016/16/Date/4-15-2015
      Vitzthum’s testimony:

       Thank you for the opportunity to share my perspective on whether Act 39 is “working”and the sunset in the law.
       I’ve had to extrapolate what this committee might mean by the term “working”. Typically when a law is passed, legislators want to know: is the law, as currently enacted, doing exactly what it was intended to do, no more and no less? With that assumption in mind, I’m surmising that this committee is interested in hearing whether people who are usingthe law are:
1. “qualified” under the law to make the request ie have a diagnosis of 6 months or less to live, and do not have impaired judgment
2. requesting a prescription to end their life freely and of their own will, without being coerced, cajoled, or forced in any way to make the request
3. truly making the request as a choice and not because they have been denied access to other treatments and options
4. able to obtain those prescriptions
5. capable of self-administering the dose at the time of death, as assumed but not actually required by the law
6. successful in their use of the medication to achieve their death or if the prescription was not used to hasten death, the medication been disposed of safely as required by Department of Health Rules, Chapter 2, Subchapter 6
       These are all reasonable and responsible questions to be asking to determine whether or not the law is working as intended. The problem is that under the current law we just don’t know and cannot ascertain the answers to these questions. The only thing we know for sure is how many prescriptions have been written. That is the only data point collected (of the few that are collected) that is shared with legislators and the public.
        It would also make sense to be able to evaluate how the law is being used over time,with some sort of annual report given to the legislature that answers some of the questions I just posed, but there is no requirement for that in the law as currently written.
There is also a need to ascertain whether the law has unintended consequences, such as being a catalyst for rising suicide rates, as has happened in Oregon and Washington or if inequality of access to healthcare forces Vermonters to the point of choosing PAS because they didn’t get quality care soon enough. These are also important measures in determining if the law is “working” as intended.
        So when asking if the law is working, other than knowing how many prescriptions havebeen written, there’s a lot we just don’t know. But here is what we do know and have known for a very long time: national statistics tell us that one out of every ten elders will be physically or emotionally abused. 1.4 out of
every 100 elders will be financially exploited. These figures come from the National Center on Elder Abuse which is part of the federal Administration on Aging. U.S. Assistant Secretary for Aging Kathy Greenlee was quoted in January 2014 as saying “People think abuse is isolated and only in nursing homes. In fact it is broad and widespread and it is often family members.”
        We knowthat the statistics for people with disabilities are even more disturbing. According to the Disability and Abuse Project, a federally funded project of the Spectrum Institute, seven out of every ten people with disabilities will be physically,emotionally or financially abused in their lifetime. Of that 70% of the total disability population who WILL be abused, 57% of them will be abused more than 20 times over the course of their life.
        In 2014 Vermont’s Adult Protective Services investigated 1,366allegations of abuse and neglect of elders and people with disabilities. That was howmany they investigated. They continually face challenges working through the backlog of allegations and were in fact successfully sued in 2013 (the year Act 39 was passed)
by Disability Rights Vermont and others for failing to fulfill their obligation to protect Vermont’s elders and people with disabilities. If you look at the bills introduced in this session, there are several proposed laws that attempt to address the shortcomings andinability of Adult Protective Services to protect our most vulnerable citizens. If we haven’t been able to protect Vermont’s elders and people with disabilities under any other law, how do we believe, with so little accountability, that we are protecting them under Act 39? If our faith is entirely in doctors treating all patients equally in diagnosis, prognosis and treatment, that faith is misplaced. The minimal protections in Act 39 give doctors legal cover for offering death as asolution to vulnerable adults and we in the disability community know from experience that the word “terminal”, for an adult with disabilities, is a term bandied about very carelessly. In fact in an article in the current newsletter of the Vermont Ethics Network,quadriplegia is listed as a “terminal” condition. It is not, people with quadriplegia can live a great many years but are often told they have mere months to live. Many people with disabilities have been pronounced terminal multiple times over the course of their lives, partly because society ( which includes doctors) is entirely too willing to perceive their lives as being not viable.
       I’ve heard it argued that Act 39 does not apply to people with disabilities, that the law is about the terminally ill. As I’ve just stated the term “terminal” is often misapplied to disability. But here’s another consideration: by the time an individual reaches the true terminal stage of his or her illness, they are, by definition, likely to be a person livingwith a disability by virtue of the fact they are probably no longer able to perform the standard activities of daily living (called ADL’s) or by virtue of needing assistive devices such as wheelchairs, walkers or portable oxygen, or by virtue of needing caregiving inorder to get through their day. One in five of us will live with disability at some point in our life. This law clearly applies to people with disabilities.

        Act 39, with the sunset removed, but without more data collection and without greatly enhanced protections, works under the following circumstances:
1. The law works if every family situation is mentally healthy and functional.
2. The law works if every patient is financially secure and no one around the patient has any hidden agendas.
3. The lawworks if every person who becomes ill has had unfettered access to high quality health care throughout the entire course of their illness.
4. The law works if every person who is ill has a trusting, functional relationship with their physician and that relationship is built on mutual respect.
        But we know that these things are not true for every Vermonter. If they were, we wouldn’t need this committee, or this legislature or the Agency of Human
Services or the court system. We know that there are bad actors out there, we know that there are people who abuse and neglect others, we know that not all doctors come to their patients fully informed about aging, disability or mental health issues. We know that some vulnerable adults put their trust in people unworthy of that trust. This law, written with the few in mind, is a pathway to homicide for the vulnerable among us.
       Think about the statistics: 1.4 of every ten elders, 7 of every ten adults with disabilities. The abuse, neglect and sheer violation of their civil and human rights just keeps on happening. The question that needs to be asked is: even if there are some who might benefit under this law, does the potential for abuse outweigh the benefits? There is a point of law that is drilled into every law student in this country: a law cant just be for the benefit of a few when it endangers or harms others. We proudly defend freedom of speech but that doesn’t mean you can yell “fire” in a crowded theater. We defend individual property rights but a person can’t fill his swimming pool if by doing so he drains all his neighbors’ wells. This law that allows one person to willfully cause the death of another, if abused creates a tragedy that can never be undone.
       The most important question is: are we willing to live with that?

We wrote a couple of days ago that the CT assisted suicide bill appeared to be dead.  Now the death has been officially pronounced.

Here’s a link to a news story:

http://www.ctpost.com/local/article/Aid-in-dying-bill-fails-in-committee-6190352.php

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