Push for assisted suicide raises questions over disability rights
September 7, 2021
In response to an essay on the Victorian fantasy of a peaceful death, two letter writers (“Beyond the fantasy of a gentle death,” Aug. 29) called on the state Legislature to pass the proposed assisted suicide bill.
Paula Bacon and Molly DeHaas Walsh describe the circumstances of difficult deaths and believe that assisted suicide would bring them control, choice, and dignity when their pain and suffering become unbearable.
But when doctors misdiagnose people as terminal, the possibility of real choice disappears. Studies show that 12 percent to 15 percent of people outlive hospice, but in Oregon, with its Death With Dignity Act, only about 4 percent of people have lived past six months. This suggests that as many as 1 in 10 people ended their life prematurely. No one would tolerate any other elective treatment this deadly.
The Oregon reports show that the main “end-of-life concerns” stem not from physical pain but from “existential distress” over the disabling aspects of serious illness, such as dependence, status loss (“dignity”), incontinence, and feeling like a burden on others.
As someone paralyzed below the shoulders, I am terrified of the prospect of a state law sponsoring people’s suicides as rational responses to disability. Massachusetts should instead fully fund home care and provide world-class palliative care. Equality under the law depends on it.
John B. Kelly, Boston
The writer is director of the disability rights group Second Thoughts MA, which opposes the legalization of assisted suicide.
March 2021: Identical House and Senate bills have been filed to legalize physician assisted suicide. The status of the bills are that they have been referred to the Joint Committee on Public Health. The bills already have a significant number of legislator supporters. Conventional wisdom says that not much will happen until after the budget is complete, however, everyone is encouraged to share your opposition with your legislators early and often!
An Act relative to end of life options
Please read the entire bill, which include many more sections than shown below. For instance, do you agree with Section 14(e): “(e) State regulations, documents and reports shall not refer to the practice of aid in dying under this chapter as “suicide” or “assisted suicide.””?
(a) A patient wishing to receive a prescription for medication under this chapter shall make an oral request to the patient’s attending physician. No less than 15 days after making the request the patient shall submit a written request to the patient’s attending physician in substantially the form set in section 4.
(b)A terminally ill patient may voluntarily make an oral request for aid in dying and a prescription for medication that the patient can choose to self-administer to bring about a peaceful death if the patient:
(1) is a capable adult;
(2) is a resident of Massachusetts; and
(3) has been determined by the patient’s attending physician to be terminally ill.
(c) A patient may provide a written request for aid in dying and a prescription for medication that the patient can choose to self-administer to bring about a peaceful death if the patient:
(1) has met the requirements in subsection (b);
(2) has been determined by a consulting physician to be terminally ill;
(3) has been approved by a licensed mental health professional; and
(4) has had no less than 15 days pass after making the oral request.
(d) A patient shall not qualify under this chapter if the patient has a guardian.
(e) A patient shall not qualify under this chapter solely because of age or disability.
(a) A valid written request must be witnessed by at least two individuals who, in the presence of the patient, attest that to the best of their knowledge and belief that patient is:
(1) personally known to the witnesses or has provided proof of identity;
(2) acting voluntarily; and
(3) not being coerced to sign the request.
(b) At least one of the witnesses shall be an individual who is not:
(1) a relative of the patient by blood, marriage, or adoption;
(2) an individual who at the time the request is signed would be entitled to any portion of the estate of the qualified patient upon death under any will or by operation of law;
(3) financially responsible for the medical care of the patient; or
(4) an owner, operator, or employee of a health care facility where the qualified patient is receiving medical treatment or is a resident.
(d) The patient’s attending physician at the time the request is signed shall not serve as a witness.
(e) If the patient is a patient in a long-term care facility at the time the written request is made, one of the witnesses shall be an individual designated by the facility.
Section 4. REQUEST FOR AID IN DYING MEDICATION PURSUANT TO THE MASSACHUSETTS END OF LIFE OPTIONS ACT
I,. . . . . . . . . . . . . . . , am an adult of sound mind and a resident of the State of Massachusetts. I am suffering from . . . . . . . . . . . . . . , which my attending physician has determined is a terminal illness or condition which can reasonably be expected to cause death within 6 months. This diagnosis has been medically confirmed as required by law.
I have been fully informed of my diagnosis, prognosis, the nature of the aid in dying medication to be prescribed and potential associated risks, the expected result, and the feasible alternatives and additional treatment opportunities, including comfort care, hospice care, and pain control.
I request that my attending physician prescribe aid in dying medication that will end my life in a peaceful manner if I choose to take it, and I authorize my attending physician to contact any pharmacist to fill the prescription.
I understand that I have the right to rescind this request at any time. I understand the full import of this request and I expect to die if I take the aid in dying medication to be prescribed. I further understand that although most deaths occur within three hours, my death may take longer and my physician has counseled me about this possibility. I make this request voluntarily, without reservation, and without being coerced, and I accept full responsibility for my actions.
As registered nurses, we urge state legislators to look at the facts and reject Massachusetts assisted suicide bill.
Despite what the authors of a recent letter to the editor claim, uncontrollable pain does not even make it into the top five reasons that people choose assisted suicide. Based on data from Oregon, the state where assisted suicide has been legal the longest, the reasons that people choose assisted suicide include: decreasing ability to participate in activities that made life enjoyable, loss of autonomy and loss of dignity. These serious concerns are all existential or disability-related that ought to be treated with appropriate care, not death.
The medical community is also resoundingly opposed to the practice of assisted suicide. The American Medical Association reaffirmed its opposition to assisted suicide because, “Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.” The World Medical Association is also opposed to assisted suicide. As medical professionals, our role is to heal, not to hasten death.
Assisted suicide is a dangerous public policy that targets the most vulnerable in society: the terminally ill, people with disabilities, and the elderly. The so-called “safeguards” in assisted suicide laws are ineffective. Having surpassed 500,000 deaths from COVID-19, it’s shocking that our legislature is considering institutionalizing premature death now. Instead of working to make death more accessible, we strongly urge our state legislators to expand access to quality medical care and treatment options.
Opinion: Assisted suicide cannot be regulated, ripe for abuse and coercion
November 18 by William Almeyda Jr. (senior pastor of the New Life Worship Center in Worcester) and his wife, Elise Almeyda
“Any moral society has a duty and a responsibility to protect and defend the vulnerable and the marginalized. But the assisted suicide legislation some Massachusetts lawmakers are considering is a dangerous public policy that threatens the most vulnerable in society: the elderly, people with disabilities, and the terminally ill.
Now in the midst of a global pandemic, the focus of legislators should be on ensuring that quality medical care is available to every Massachusetts’ resident, rather than making death more accessible. Assisted suicide cannot be regulated, is ripe for abuse and coercion, fails to address patients’ existential concerns, and is overwhelmingly opposed by the medical community. I urge our Massachusetts’ legislators to consider the deadly threat that legalizing assisted suicide would impose on our most vulnerable residents and to reject this policy”…. Read the whole article in the Telegram and Gazette.
“As pastors, we see firsthand the issues that the most vulnerable members of our society face. I see what happens when one life is deemed more valuable than another and that is exactly why we are opposed to legalizing assisted suicide in Massachusetts. Assisted suicide unfairly targets the most vulnerable: the terminally ill, people with disabilities and the elderly. We urge legislators to reject this dangerous policy and instead work to provide better care and treatment for those most in need.
Despite often cited claims of safety, assisted suicide laws are incredibly difficult to regulate. The so-called “safeguards” built into these laws are lacking at best. The truth is, assisted suicide laws open the door to abuse, harm and coercion against the most vulnerable in society. According to a study published by the National Council on Disability detailing the effects of assisted suicide laws on the disability community, the so-called “safeguards” are “ineffective and often fail to protect patients.” It is simply too risky to legalize assisted suicide when the well-being and safety of all Massachusetts’ residents cannot be guaranteed.
Assisted suicide also fails to address the underlying reasons why people choose assisted suicide in the first place. In Oregon, where assisted suicide has been legal the longest, data shows that pain/suffering do not make it into the top five reasons that people choose assisted suicide. Rather, the top five reasons people choose assisted suicide are existential or disability-related in nature including: being less able to engage in enjoyable activities, loss of autonomy, loss of dignity, being a burden on family/friends and losing control of bodily functions. These concerns are serious and deserve to be addressed with proper treatment and counseling, not an early death.
Assisted suicide is a dangerous policy that is impossible to regulate and unfairly targets the most vulnerable in society. We urge legislators to reject this inherently flawed policy and instead support laws that ensure everyone is given the quality medical care and treatment that they deserve.”
On Wednesday, September 16, a public hearing was held by the Health Equity Task Force of the Massachusetts Public Health Committee. The legislative website stated that “[t]he virtual hearing is to receive testimony from the public on findings and recommendations that address health disparities for underserved or underrepresented populations during the COVID-19 pandemic, pursuant to the Health Equity Task Force established by section 2 of Chapter 93 of the Acts of 2020.”
John Kelly testified on behalf of Second Thoughts Massachusetts.
Testimony Before MA Health Equity Task Force – Regarding Crisis Standards of Care and Suicide Prevention Services for Disabled People
Thank you. My name is John Kelly and I am the director of Second Thoughts MA: disability rights advocates against assisted suicide. We also oppose policies, actions, and media that demean the lives of disabled people, such as the state’s Crisis Standards of Care (CSC) and lack of attention to suicide prevention services for disabled people.
Under pressure from advocates, the Department of Public Health (DPH) has dropped from its CSC some of its discriminatory criteria for triage decision-making. But it continues to insist on using estimated five-year survival rates against disabled people, who are disproportionately Black and Brown. That’s discriminatory on grounds of both disability and race.
The Office of Civil Rights confirmed this discrimination in its recent settlement with Utah, writing that “Survivability is a factor that can be fraught with speculation, mistaken stereotypes, and assumptions about the quality of life and lifespan of people with disabilities.” In a triage situation, Utah, and thus Massachusetts, can only consider “short-term mortality.” Massachusetts must make an individualized assessment based on the most objective information available. I look forward to a state CSC that values all lives equally.
DPH must also affirm that disabled people are entitled to suicide prevention services. In May, I attended DPH’s annual suicide prevention conference, titled “Building and Sustaining Hope Virtually: Reshaping the Conversation to Reduce Suicide.” I was shocked to hear a presentation wholly centered on assisted suicide, including a timeline of Western thinking on suicide, from Socrates to the French sociologist Emile Durkheim to Jack Kevorkian! The presenter justified their presentation by saying that assisted suicide had been discussed before and “may come back again.”
When the New England Journal of Medicine examined 69 of Kevorkian’s 130 victims, it found that three quarters were not terminally ill, but disabled. Not terminally ill. Disabled, and almost certainly depressed. Some had no physical condition at all. The typical profile was of a woman with a chronic illness or disability who was depressed over a recent life upset.
In Oregon, the reported end-of-life concerns are all about existential distress regarding disability. People ashamed about depending on others, humiliated by feeling like an undignified burden, or traumatized by incontinence get only suicide completion services. So at a suicide prevention conference, the state entity tasked with protecting all of us from suicide promoted a rabid killer of disabled people.
In this state, suicide prevention organizations tacitly support assisted suicide by not taking a position against it. The State’s suicide prevention plan offers almost nothing to us.
DPH should adopt Connecticut’s commitment to preventing disabled people’s suicides. Its plan acknowledges that assisted suicide negatively impacts disabled people because of its operating principle that disability is a “fate worse than death.”
Connecticut’s plan states that: Until recently, the Connecticut Suicide Advisory Board (CTSAB) was considering assisted suicide of the terminally ill as a separate issue from suicide prevention. The active disability community in Connecticut, however, has been vocal on the need for suicide prevention services for people with disabilities. There may be unintended consequences of assisted suicide legislation on people with disabilities. Peace (2012) writes that “Many assume that disability is a fate worse than death. So we admire people with a disability who want to die, and we shake our collective heads in confusion when they want to live.” People with disabilities have a right to responsive suicide prevention services. The CTSAB intends to continue to explore the needs of the disability community for such services.
We disabled people demand responsive suicide prevention services.
To conclude, disabled people in this state, as much as anyone, deserve equal medical care and suicide prevention services. We disabled people are human beings who demand full respect from our state. Thank you.
In light of new information, Second Thoughts Massachusetts revises its June 2 statement in opposition to the assisted suicide bill favorably reported by the state legislature’s Joint Committee on Public Health. Assisted suicide bill S.2745, recently renumbered from S.1208/H.1926, was moved to the Joint Committee on Healthcare Financing on June 8.
“I’m amazed and disappointed that as a deadly virus is stalking and killing older, ill, and disabled people, and systemic racism and healthcare disparities lead to disproportionate deaths of Black people, the Public Health Committee decides now would be the time to further endanger the same group of people. Assisted suicide legislation sends a message of ‘better dead than disabled’ while completely immunizing doctors, heirs, and stressed caregivers who can encourage or even engineer a person’s death without fear of prosecution,” said Second Thoughts Director John B. Kelly.
Anita Cameron, Director of Minority Outreach for Not Dead Yet, said “I am utterly disgusted that as COVID-19 ravages the Black community due to the results of racial disparities in healthcare, the Public Health Committee has decided to promote death over life. COVID-19 has disproportionately affected the Black community; we are dying at frightening rates. Black people overwhelmingly oppose assisted suicide. It’s not our top issue, but by pushing this mostly White-, mostly wealthy-backed bill, the legislature is sending a clear message to us Blacks that our interests can continue to be ignored.”
Diane Coleman, President and CEO of Not Dead Yet, said “The doctors who decide who’s eligible for assisted suicide are the same doctors who have been perfectly comfortable putting older, ill and disabled people at the back of the line for receiving COVID treatments. Why should anyone think they will move us to the front of the line for other life-saving treatments if assisted suicide is legal?”
Five months ago, Suffolk Superior court Judge Mary K. Ames in Kligler, et al. v. Healey, et al. ruled against any state constitutional right for assisted suicide, holding that at the point of a patient ingesting the lethal drugs, they would be vulnerable to improper persuasion. “In such a situation, there is a greater risk that temporary anger, depression, a misunderstanding of one’s prognosis, ignorance of alternatives, financial considerations, strain on family members or significant others, or improper persuasion may impact the decision.”
“The Massachusetts legislature should heed this warning by the court. If assisted suicide is legal, some people’s lives will be ended without their consent, through insurance denials, abuse, and mistakes. No safeguards have ever been enacted, or even proposed, that can prevent this outcome which can never be undone once it is put into effect,” Kelly added.
Second Thoughts Massachusetts is a group of disability rights advocates opposed to the legalization of assisted suicide. We testified against the bill S.1208 (now S.2745) at the hearing in June of 2019 and held a well-attended legislative briefing a few days after. It is the state affiliate of Not Dead Yet, the national grassroots group opposed to assisted suicide and life and death discrimination against disabled people.