True Dignity Vermont

True Dignity is privileged to share this excellent, heartfelt piece written by Meghan Schrader, part time resident of Waitsfield, Vermont:

I would like to express my disillusionment with the Democratic representation in Vermont and elsewhere of disabled people like me.

For years, Democrats have been leaders in civil rights movements such as women’s rights, racial equity and LGBT liberation. Yet, when it comes to the issue of doctor-assisted suicide, the most ostensibly progressive Democrats have functionally ignored the uniform opposition of disability rights groups across America. American Disabled for Attendant Programs Today, Autistic Self Advocacy Network, the National Council for Independent Living, the Association of Programs for Rural Independent Living, the United Spinal Cord Injury Association, the Association of Retarded Citizens, The World Council on Disability, and the National Council on Disability all oppose assisted suicide. These organizations lead our community in establishing civil rights and carrying our communal concerns to legislators. They are to our community what NOW, the NAACP, and GLAAD are to the women’s, persons of color, and LGBT communities.

Yet, Compassion and Choices, the ACLU, able-bodied progressive legislators and the few disabled individuals who say they support PAS, have been taken as representing the “voice of reason” in this debate. Indeed, Compassion and Choices has even taken to funding Astroturf groups that include people who happen to have disabilities, and then writing press releases referring to them as “key disability rights leaders.”

The fact is that such organizations tend to be run by people who are not disabled, do not live our daily reality, and yet falsely claim to know more about ableism’s impact on assisted suicide than our community does. They cannot speak to how the practice of assisted suicide relates to what we experience as hateful cultural constructions of disability.

During childhood, I was always taught that validating suicide on the basis of identity or circumstances was so hateful as to be beyond the pale of discussion. Yet, in adulthood, I’ve found that this rule does not apply to disability, and that people with disabilities have limited voice in such matters. In the adult world, disability is not an identity, nor is our community empowered to claim it as such.

By legalizing assisted suicide and continuing to make a show of tinkering with what meager restrictions may or may not remain in the law, Vermont is setting an unwelcome precedent of a new kind of discrimination. The socio-economically privileged people who were allowed to testify at the recent hearings on S.108 in Vermont extolled the benefits of the law for them and their family members who chose not to become disabled and “lose their autonomy” in the course of a terminal illness. And some of those who did testify about how Act 39 stands to impact the disabled community were cut off in such a way that it seemed that the legislative process was being manipulated in favor of assisted suicide supporters.

If the law has so much support in the legislature, then why block people in the disabled community from testifying? I believe that Sen. Ayers’ statement in the Senate Health and Welfare Committee that she doesn’t “want to tie up the legislature’s time” with such statements also reflects her privilege. She and people like her will never be harmed by the mechanisms of that law, and she and other legislators are employing their power to silence those of us who may be.

It angers me that so many legislators are willing to overlook the inconsistency in Compassion and Choices’ statements. They say they only want to legalize assisted suicide for terminal illnesses, but C&C has publicly expressed approval of laws that go far beyond that boundary. As I wrote in the testimony that I was not allowed to give before the Human Services Committee, I do not believe that there is any logical difference between the suffering and familial burden posed by diseases like major depression, or simple neurological differences like autism that necessitate familial support, and the suffering that occurs at the end of life. There is ample evidence to indicate that right-to-die advocates, such as those associated with Compassion and Choices, actually support euthanasia and believe assisted suicide should not be restricted to those who are dying. For instance, Compassion and Choices and the Death with Dignity National Center have both expressed excitement over a recent Canadian court decision that legalized assisted suicide and euthanasia for anyone with a “terminal illness, disease or disability who finds their condition intolerable with respect to their circumstances.” That means that if I move to Canada, I can kill myself with the help of a doctor, and I don’t even have to tell my family. (I feel that euphemisms such as “end my life” are inappropriate given the magnitude of this matter.) Justice demands that I be entitled to the same suicide prevention as anyone else, and the fact that the Canadian law doesn’t recognize this makes me angry. The passage of Act 39 was significantly influenced by legislators who didn’t want any restrictions on the law at all, suggesting that disabled individuals have ample reason to be concerned that the law will expand as it has in Canada, and that there won’t be anything that our leaders can do about it because the expansion will be protected by powerful legislators who want to protect a privileged conception of “choice.”

Recently I stood outside the Whitehouse for over four hours with ADAPT, which was asking that the US Secretary of Health and Human Services come speak to us about the Community Integration Act and the President’s lack of active participation in disability rights liberation. For the last twenty-five years, disability activists have been fighting for funding so that they can hire Personal Care Attendants to perform nursing home-related tasks in our homes. As the issue has fallen into the doldrums of underfunding, lack of advocacy, and conflicts of interest between the state and individual rights, disabled people have died in nursing homes under abhorrent conditions, with no choice in the matter.

That day, no one came to speak to us. The U.S. is close to saying that we cannot choose where we live, but instead, we can choose to die.

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!