For the 5th time in 7 years, disability rights advocates, led by Second Thoughts CT , have thwarted a Connecticut bill – this time it was HB 5898 – to legalize assisted suicide. Not Dead Yet provided testimony and social media support, and New England Regional Director John Kelly joined the radio show “The Full Story”, on March 26, to debate legislative sponsors of assisted suicide bills in Connecticut and New York. (Diane Coleman submitted testimony detailing her own mistaken prognosis, and John Kelly concentrated on how the bill denies people real choice through misdiagnosis, treatment coverage denial, and so on.)
Second Thoughts CT, like its namesake Second Thoughts MA, is a grassroots group focused on opposing efforts to legalize assisted suicide. The group joins conservatives and progressives, disability advocates and professionals, into a potent force that left one prominent proponent “beyond disappointed” in a year passage was expected.
Second Thoughts CT members crashed the proponents’ press conference, securing media coverage as the bill’s opponents. The group held a press conference just prior to the hearing on March 18, and then testified against the bill. A week later, it held a lobby day to reach members of the Public Health Committee.
Disabled cofounders of the group Cathy Ludlum and Stephen Mendelsohn took complementary roles. While Stephen researched, helped organize, and handled social media, Cathy personally moved legislators and media with her powerful, incontestable, testimony from the perspective of a severely disabled woman. She told the health committee that disabled people would be “collateral damage” in any assisted suicide program. (See the NDY blog on Cathy’s testimony.)
Attorney Lisa Blumberg wrote against the bill in CT Mirror , observing, “If the selective writing of lethal prescriptions was a valid medical practice, as proponents assert that is, there would be no reason for laws to immunize medical professionals from suffering any consequences from doing so.” Members Blumberg and Joan Cavanagh lobbied, organized, and submitted testimony.
Long time Not Dead Yetter Elaine Kolb of West Haven, who showed up in one of her Not Dead Yet T-shirts, told committee members, “Keep your poison pills, We’re not dead yet. And don’t make it easier for people to kill themselves.”
Cathy Ludlum said, “It has been a privilege to work with such a great group of people as we fight this bad legislation year in and year out. Thanks to everyone at Second Thoughts CT, our national partners at Not Dead Yet and DREDF, and to the legislators who stood strong.”
[And thanks to John Kelly for this recap of a brilliant effort by all.]
PUBLIC HEALTH COMMITTEE Testimony regarding HB 5898 An Act Concerning Aid in Dying for Terminally Ill Patients
March 18, 2019
Senator Abrams, Rep. Steinberg, and members of the Public Health Committee:
My name is Cathy Ludlum, and I am one of the leaders of Second Thoughts Connecticut, a group of people with disabilities and allies who are working to prevent the legalization of assisted suicide. I am here to oppose HB 5898.
Let me start by explaining why the disability community is working so hard across the country to stop legislation of this type.
Nobody wants people to be in pain, desperate, and feeling that they have no control over what is happening in their lives. Believe me, those of us with disabilities know what it is to feel like you have no control.
But the harsh reality is that we will be the collateral damage in any formalized death-by- choice system. Many of us with severe and obvious disabilities are already too frequently thought of by medical practitioners as having reached a final stage, where death might be expected in the near future.
If we go to the hospital, we bring friends. We have to.
This will be even more true now that the Connecticut State Medical Society has dropped its opposition to assisted suicide. The last thing we need is for practitioners to have in the back of their minds, “Maybe it’s time for ‘Aid in Dying.’” If the CSMS will not advocate for good medical practice, who will?
It is reasonable to ask why a disabled person would choose a doctor who does not seem willing to fight for his or her life and health. Unfortunately, people are not always in a position to choose their own doctor. Private insurance often requires that the patient see a doctor in their network, or pay for the privilege of going out-of-network. Not every physician accepts Medicare or Medicaid, so again, choices can be limited.
Further, if a person lands in the hospital, he or she will be treated by doctors unfamiliar with the individual’s situation. This is what happened to my colleague, William Peace. He was hospitalized with a deep and grossly infected pressure sore. As a paraplegic, both his life and his quality of life were in serious jeopardy. A doctor spoke to him about devastation he would face as a result of this pressure sore: loss of job, bankruptcy, at least six months and probably more than a year in bed, and complete dependence on others, most likely in a nursing home. The doctor offered Bill the choice of refusing antibiotics, promising to make him “comfortable.” Bill refused. Many of those terrible things did happen, but eventually Bill recovered and resumed his life as a college professor. Assisted suicide was not an option in that state at that time, but the story demonstrates that the doctor believed Bill would be better off dead. 1
Any physician will tell you that medical science is inexact, at best. Sometimes predictions are slightly off, but sometimes they are off by decades. Look at the case of John Norton, a member of Second Thoughts Massachusetts. He was diagnosed with ALS when he was 18 years old. The diagnosis was verified by the prestigious Mayo Clinic. For some reason the progression of his disability stopped, and he was 74 when he submitted testimony to a Canadian court in opposition to assisted suicide. By then, he had a wife and children, and was retired from a successful career. Yet he testified that if assisted suicide was available in the 1950s, he would have taken advantage of it. Think of all he would have missed based on what was a reasonable prognosis for his condition. 2
We can spend time talking about problems with the proposed legislation.
Believe it or not, I would qualify as terminal under the definition given in Section 1, 19:
“Terminal illness” means the final stage of an incurable and irreversible medical condition that an attending physician anticipates, within reasonable medical judgment, will produce a patient’s death within six months.
Nowhere does it say “with or without treatment.” Most people assume this legislation is for people who have exhausted all their treatment options, but that is not what it says. I eat with a feeding tube and use respiratory support when I am sleeping. Without these treatments, I would not last six months. I would probably not last six days. What is to prevent someone like me from showing up at a doctor’s office and saying, “I have had enough. I will be stopping all my treatment”? While the typical population would receive suicide prevention services at that point, this person would be more likely to get compassionate nods of approval. 3
“Competent” is defined as allowing a third party to speak for a patient with a communication disability if that person claims to be “familiar with a patient’s manner of communicating.” What is to protect a patient with very difficult communication from having an exhausted caregiver misrepresent his or her wishes?
The proposed legislation says the prescription “may” be self-administered, not that it “shall be.” There is no language preventing another person from administering the prescription.
Unfortunately, adjusting the legislative language does not help. Proponents say that with adequate safeguards, no one is at risk. But in reality, no package of safeguards has ever or CAN ever be developed that will provide 100% protection from misdiagnosis, incorrect prognosis, coercion, or the devaluation of the lives of disabled people.
Finally, proponents’ repeated statements that there have been no problems with the Oregon and Washington State assisted suicide systems are false. There may be times when everything goes the way it is supposed to, but with over 1500 people dying under the law, it is hard for me to believe that no one died under questionable circumstances.
Even Dr. Katrina Hedberg of the Oregon Department of Human Services (who is a supporter of the state’s Death with Dignity law) said, “We are not given the resources to investigate [assisted-suicide cases] and not only do we not have the resources to do it, but we do not have any legal authority to insert ourselves.” Those words may be comforting to people whose want total privacy, but they send chills up my spine. We as a society cannot just set this in motion without any mechanism to protect people who will inevitably be taken advantage of. Privacy is certainly important, but so is balance, and there is no balance in this legislation.
The Disability Rights Education and Defense Fund has written a report showing that the safeguards in the Oregon and Washington State laws have not always been effective, and that assisted suicide does not always result in a peaceful death. 4
Is it acceptable for some lives to be shortened because people are acting on a wrong prognosis, or because they are pressured into making this final move, so that others can exercise what they see as a personal right? The last thing my colleagues and I want is to interfere with anyone’s choice. But when this choice becomes legislation that poses a direct threat to us and to others in our network, we must emphatically say NO.
Even if you support this legislation in concept, there is just no way to avoid having some people die for the wrong reasons.
HB 5898 is bad medicine, bad for people, and bad public policy. Please stop it from moving forward.
Thank you for your consideration.
Sources:
1 William J. Peace, “Comfort Care as Denial of Personhood” http://infiniteability.yolasite.com/resources/Hastings%20report_Peace.pdf
2 John Norton, “Affidavit in Opposition to Assisted Suicide and Euthanasia” http://www.massagainstassistedsuicide.org/2012/09/john-norton-cautionary-tale.html
3 Carol J. Gill, PhD, “Suicide Intervention for People with Disabilities: A Lesson in Inequality” https://pdfs.semanticscholar.org/196b/2ab9f5a29e2e41e7958d35c055a26d5f4386.pdf
4 The Disability Rights Education and Defense Fund, “Some Oregon and Washington State Assisted Suicide Abuses and Complications” https://dredf.org/public-policy/assisted-suicide/some-oregon-assisted-suicide-abuses-and- complications/
[Sheryl’s personal story and compelling message applies to EVERY STATE with an assisted suicide bill.]
Sheryl Grossman, middle aged woman, thin with long dark hair
Dear Senator:
As a disabled MD resident, I implore you to vote no on this very harmful legislation. What has been marketed as a bill increasing choice of those with terminal illness (who almost always meet the federal definition of disability) in actuality reinforces stereotypes and systemic ableism that will do irreparable harm to disabled constituents and Marylanders as a whole.
I understand that several changes were made to the bill that some legislators believe will help protect disabled people from the harms of this bill, but they will not.
1. Raising the age that you can get the prescription from 18-21. This will not protect the most vulnerable–our elders who most report a fear of being a physical and/or financial burden on others. These folks are also most at risk of being pressured, or outright abused, by family members, or caregivers when they may not otherwise do so. Those who have intellectual/developmental disabilities who can pass the psychiatric test of knowing what can kill them or not, can still be easily swayed by those whom they trust to make decisions with them to take their lives when they may not otherwise do so. Nothing in this change will prevent these deaths.
2. Removing the shield that would protect Dr’s from being sued for prescribing the lethal drugs. Since the intended recipient of the lethal prescription dies after taking it, who will be there to sue the Dr? Especially considering that the pressure to take one’s life will likely be coming from a family member, or caregiver.
3. Adding a requirement for a mental health evaluation. This does not mean the provision of crisis intervention services, nor long-term mental health treatment. The kind of evaluation that is possible in the timeframe that this situation presents, is, as described in the original bill, enough time to determine that the person understands that taking this prescription will kill them. Cognitively understanding the consequences of taking this action is very different from psychologically making an informed decision based on all the facts. When someone acquires a life-changing diagnosis, it takes time to gather the available information and even more time to process this information and to connect with others and begin to cope with the new reality. When coupled with the addition of treatments or medications or therapies, the time needed to adjust to a new reality of life is often lengthened. This bill puts bookends on what services can be provided and in what timeframes while if someone in the general public says they want to kill themselves, we rush in crisis intervention services and usually follow-up mental health services. When someone acquires a disability, there are professionals available to assist with the adjustment to the “new normal” no matter how long that is, from a day to a few weeks or months, to forty years or more. As children, this function is often served by Child Life Specialists. As adults, this service is often provided by Centers for Independent Living. This bill undermines the efforts of these whole professions to assist disabled people to live our best lives. It reinforces the stereotype that our quality of life is poor and that we are not worthy of life, without giving us the chance to use all of the resources there for us.
4. Requiring that Dr’s give patients written information about treatment options available for their condition. First, they should be doing this already and if not, then that should be addressed in a different piece of legislation, that is a Dr.’s job. However, when someone receives a terminal diagnosis, treatment is no longer the major issue, adjusting to the new situation and living with the best possible quality of life should be the top priority. This is not a Dr.’s job, nor specialty. Nothing in this bill requires this piece, as I stated above. There are whole professions dedicated to helping people adjust to life situations. This bill makes the assumption that because of terminal diagnosis (presence of progressive disability), these services should not be required. This is ableist and discriminatory and will turn back the clock on the progress disabled people have made in Maryland.
5. Setting a stricter definition of who can qualify. Despite the tweak in the language, it is an established fact that accurately diagnosing someone as having an irreversible condition and that will result in death within 6 months is near impossible. I wasn’t expected to live past 2 and am 43 now. I wasn’t expected to survive the first 12 hours after chemotherapy and I am here 6 years and 2 cancers later. We have all heard of miraculous recoveries and I urge you to see that making a mistake is one thing, but allowing that mistake to lead to the prescribing of a lethal overdose is something completely different and should not be allowed.
Diane Coleman: short haired woman with glasses and a breathing mask
I lived my first thirty years with no idea that the DRM existed. The Disability Rights Movement. It’s very existence turned my shame to pride. And the DRM has done that for millions of us, but millions more have no idea still.
“Better Dead Than Disabled” – that message permeates our culture, in the looks and the looks away.
But the DRM is here to stay. It’s tough as nails, and gentle as a whisper of love. And it’s needed like never before.
On so many fronts, the value of our lives is put into question. Threats to healthcare, to pre-existing condition coverage, “futility” policies, and forcing people of all ages into institutions, out of sight and out of mind. And offering doctor prescribed assisted suicide.
In an aging society, as Hemlock Society co-founder Derek Humphry wrote, “…economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.”*
Our voice is needed now, needed to fight for our lives and the lives of others before they are lost to assisted suicide mistakes, coercion and abuse. Powerful articles by disability advocates on these dangers have been published in mainstream press across the country in the last two months.
Legislators in Maryland and New Jersey are expected to vote in the next days. Other states with active bills include Rhode Island, Connecticut, Massachusetts, New York, Nevada, Maine, and more.
Please add your voice to our “resistance”, in whatever way you can.
* Derek Humphry & Mary Clement, “Freedom to Die: People, Politics and the Right to Die Movement” (2000).
On Friday, March 1st, the disability community will gather across the nation to remember these disabled victims of filicide – disabled people murdered by their family members or caregivers.
In the year since our last vigil, our community has lost over 70 more people to filicide. These are just the cases that we are aware of – since we began monitoring this issue, we learn about more murders every week. . . .
In 2019, Day of Mourning events will be held in 33 U.S. cities as well as 9 international cities.
Last year, one such event held in Rochester, New York was recorded by filmmaker Peter Edmondson, who put together a short and very moving video we’d like to share:
