New Zealand has the End of Live Choice Act. This video outlines very clearly the dangers of this act, and would be the same dangers for our physician assisted suicide proposals. The pressures outlined are ones that people with disabilities are already very familiar with.
Unfortunately, this act passed in a binding referendum vote in October of 2020, and will be put in place in November of 2021. You can read more about the act: en.wikipedia.org/wiki/2020_New_Zealand_euthanasia_referendum.
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.
Debate between John B. Kelly and Thaddeus Pope on September 30, 2020: Assisted suicide is currently legal in ten jurisdictions in the United States: California, Colorado, District of Columbia, Hawaii, Montana, Maine (starting January 1, 2020), New Jersey, Oregon, Vermont, and Washington. Efforts are underway in many other states (including Minnesota) to enact similar laws. Watch this Hot Topics: Cool Talk video clip for a spirited but civil conversation about such laws between two advocates who take opposing views on this issue.
From Terrence J. Murphy Institute at the University of St. Thomas
by John Kelly:
Proponents of assisted suicide laws have insisted for years that assisted suicide has nothing to do with disability, when a glance at the reported “end of life concerns” in Oregon showed those concerns to be all about people’s psychological distress over the disabling aspects of their serious disease.
As one example, lead Massachusetts proponent of the assisted suicide ballot question in 2012, Dr. Marcia Angell, told radio station WBUR that “This has nothing to do with disabled people, nothing whatsoever… It’s fine for them to take whatever position they want to. But they have no special standing.”
On September 30, Director of Second Thoughts MA John B. Kelly engaged in a two-hour debate on assisted suicide with Thaddeus Pope, the Director of the Health Law Institute at the Mitchell Hamline School of Law. During a segment discussing a question from a Massachusetts disabled man who would want to use assisted suicide because of feelings around incontinence, Pope and Kelly had the following exchange.
Referring to the Oregon reports, Kelly said that assisted suicide laws are “all about disability. All the reasons are about disability.” Pope replied, “Well, I mean, they are. I mean, that’s worth conceding, I think.… So everybody who’s using medical aid in dying is disabled. And probably you could go to the next step and say the reason they want medical aid in dying is because of their disability.”
He concludes that “I guess the key thing is that’s their judgment, right? Some people would say, ‘I find this condition intolerable.’ Other people won’t.”
Kudos to Thaddeus Pope for his honesty!
Now if other proponents can be equally as honest, we can have out in the open the outrage of declaring some people are “better dead than disabled.”
Second Thoughts MA and the national disability rights group Not Dead Yet argue that disabled people deserve equal protection under the law regarding suicide prevention services.
The transcript of the video clip follows.
Thaddeus Pope: It’s a framing question. Is the State of Massachusetts thwarting, is it getting in the way or is it facilitating? All he wants is for the State of Massachusetts to get out of the way. He’s not asking for affirmative support or anything like that. He just says, just decriminalize it. Because as of now, the state government of Massachusetts has inserted itself between him, this questioner, and his physician. And all he wants is for the state to get out of the way. John Kelly: I would say that, you’ve turned that on its head. The state gets involved by approving of the person’s reasons for wanting to die, and giving the doctor immunity by prescribing this. Now, if someone wanted to die because they felt that extraterrestrial beings were assaulting them and trying to kill them, well, they probably wouldn’t be seen as rational. But as long as the formulation that it’s rational for a person to feel lack of dignity over incontinence, then we are instituting massive prejudice against people who live with those conditions. That seems self-evident to me and I don’t understand how people can say, “oh, it has nothing to do with disabled people.” When it’s all about disability. All the reasons are about disability.
Moderator Lisa Schiltz: Thaddeus.
Thaddeus Pope: Well, I mean, they are. I mean, that’s worth conceding, I think. I mean his diagram, the two Venn diagrams, everybody who’s terminally ill probably is definitionally disabled. So if you have metastatic terminal cancer, you’re disabled. So everybody who’s using medical aid in dying is disabled. And probably you could go to the next step and say the reason they want medical aid in dying is because of their disability. It’s because of the cancer or the side effects or the conditions from the cancer. So that’s a true statement, but I guess the key thing is that’s their judgment, right? Some people would say, “I find this condition intolerable.” Other people won’t.
Interview with John Kelly and Dr. Brian Callister. Opponents to the end-of-life option express concern about the unintentional abuse the laws can create for the terminally ill and disabled.
Read the whole article at the Independent. We have included some of the article below, but the link also has some helpful maps on the status of legislation in different states.
Thursday 22 October 2020 by Danielle Zoellner.
“The expansion of medical aid in dying across the United States has not only created a professional and moral dilemma for practicing physicians, but it has also raised concerns within the disability community, among others, about the negative consequences these laws could have on the country.
John B Kelly, the New England regional director for Not Dead Yet, a national disability rights group focused on opposing medical aid in dying and euthanasia legislation, has become a vocal opponent to the passing of these laws.
“I myself am paralysed below my shoulders,” Mr Kelly told The Independent. “So I get to see a barrage of better-dead-than-disabled messages, as carried in such by films like Me Before You, Million Dollar Baby, etc.”
Laws relating to medical aid in dying add to this “better off” messaging, Mr Kelly said, because they create the perception that personal autonomy should be regarded above anything else. Once that autonomy is taken by a terminal illness, people sometimes think that their life is no longer worth living.
“When we look at the reported reasons for assisted suicide out in Oregon in 2019, it’s all about autonomy,” Mr Kelly said.
Oregon’s annual data showed that 87 per cent of patients who used the end-of-life option in 2019 reported a loss of autonomy as one of their main reasons. About 90 per cent said decreased ability in participating in activities that made life enjoyable was another key reason, and 72 per cent said a loss of dignity impacted their decision.
“These bills depend on a view that people with severe disabilities, and that includes people who are ‘terminally ill’, have such a low quality of life that they’re better off dead,” Mr Kelly said. “What these bills say is that this is a personal benefit, a social benefit. And so when people are given a pass to commit assisted suicide because of their disabilities, well, then those same views will be applied to people who are outside of an assisted-suicide situation.”
Another concerning statistic, Mr Kelly said, is the 59 per cent of people in Oregon who listed an end-of-life concern as being a burden to family members, friends, and caregivers.
“People are very susceptible to others,” he said, “and when everyone around you thinks things would be better if you were dead, well that’s going to encourage people.”
“I sympathize with people who suddenly become disabled … but that’s where we help people. We make sure that people know that they’re valued and they’re just as much of a full human being as they have ever been. It’s tragic to see people wanting to die because of shame and humiliation.
Medical aid in dying has a variety of different terms people use to describe it – including assisted suicide, physician-assisted suicide, death with dignity, and physicians aid in dying. Proponents of the legislation use terms like medical aid in dying and physicians aid in dying because the law puts the person’s terminal diagnosis as the cause of death, not the prescription drug they took.
“Suicide, even for sympathetic reasons, is still suicide,” he said. “The way these bills are written is that one must self-administer [the drug] … people are supposedly put in control of how they live their lives. So not to call it assisted suicide is just an exercise in euphemism.”
Oregon became the first state to pass its Death with Dignity Act, which allows a person 18 years or older with a terminal prognosis of six months or less to receive a prescription drug that would end their life. The requirements to utilise this law include the person being mentally fit, physically able to self-administer the drug, and for two doctors to sign off on the terminal prognosis.
Since Oregon passed the law in 1997, other states have followed suit. Now the end-of-life option is available in California, Colorado, the District of Columbia, Maine, Montana, New Jersey, Vermont, and Washington.
Dr T Brian Callister, a board certified internal medicine and hospitalist specialist and professor of medicine at the University of Nevada, Reno School of Medicine, told The Independent that the passing of end-of-life laws could limit other people’s access to care.
“What happens is that your choice for lifesaving treatment is going to be limited by the fact that the insurance companies now have a cheaper option,” Dr Callister said. He cited two cases where he sent one patient to Oregon and another to California for treatments.
“They both had serious illnesses but would not be terminal with treatment,” he said. “In fact, each patient would be curable 50 to 70 per cent of the time with treatment.”
The patients were denied care from their insurance companies and instead offered the end-of-life option, Dr Callister said.
Another case involving health insurance problems often brought up between proponents and opponents of medical aid in dying is what happened to 64-year-old grandmother Barbara Wagner.
The Oregon woman was reportedly denied coverage for her lung cancer treatment drug by the Oregon Health Plan, a Medicaid program. Instead, the Oregon Health Plan said in a letter it would cover end-of-life options, including palliative care and medication under the state’s Death with Dignity Act. Ms Wagner appealed the denial twice before the drug company producing the lung cancer treatment offered her the drug free of charge. She died three weeks later.
Opponents have said this situation proves the dangers of health insurance companies choosing the “cost-effective” route when caring for patients.
Proponents have said Ms Wagner was denied because of the drug’s “limited benefit and very high cost”, according to Death with Dignity, a nonprofit advocating for end-of-life options like medical aid in dying. The nonprofit claims “cost of end-of-life treatment” is never considered under these laws – a claim difficult to prove or disprove given the bureaucratic nature of health insurance companies.
End-of-life laws also rely on a physician’s ability to give a patient a terminal prognosis of six months or less, an estimate Dr Callister said is often inaccurate.
“I can tell you firsthand, a physician’s ability to predict life expectancy in terminal illness is often not accurate at all,” Dr Callister said.
In a 2016 systematic review of various studies looking into prognostic accuracy, it found accuracy by doctors spans from 23 to 78 per cent. In addition, survival estimates tend to range in three months shorter from the doctor’s prognosis to three months longer.
Oregon’s 2019 annual data summary found that 188 people took the prescription medication to end their life after requesting it through their doctor. Of those 188 people, 18 of them had received the medication in previous years, proving how patients can sometimes live past their terminal prognosis of six months or less.
“What really concerns me, though, is what happens to the prescriptions that aren’t used? These are obviously deadly drugs and roughly one-third of these prescriptions go unused,” Dr Callister said.
Once a patient receives the prescription from their local pharmacy, there is no requirement for a healthcare professional to be present when the medication is taken by the patient. In 2019, 290 people received prescriptions under Oregon’s Death with Dignity Act, but only 188 actually took the drug. Of the 290 people, 62 recipients of the prescription decided not to ingest it and subsequently died from other causes.
“There’s no mechanism for tracking that these are in medicine cabinets somewhere,” Dr Callister claimed.
Since these medications fall under the category of a Schedule II drug under the Controlled Substance Act, they are under federal statutes. This means the medication must be taken by whomever it was prescribed to and people could face criminal prosecution if it’s taken by someone else.
States like California, for example, require people who have custody of “unused aid-in-dying drugs” to “personally deliver the unused aid-in-dying drugs for disposal by delivering it to the nearest qualified facility that properly disposes of controlled substances” or dispose of it by “lawful means in the accordance with guidelines promulgated by the California State Board of Pharmacy.”
Physicians and pharmacists are also required to report prescribing and selling the medications to patients, but the law does not require additional follow-up once the patient has possession of the drugs.
Another requirement under the end-of-life laws is for two physicians to sign off that a patient has a terminal prognosis. Physicians are allowed to opt out of assessing a patient for an end-of-life option, as they might believe it goes against the oath they took to save lives.
“The American Medical Association (AMA) has reiterated that physician-assisted suicide is fundamentally incompatible with the physician’s role as healer,” Dr Callister said, referencing a 2016 opinion piece published by the AMA on the subject matter.
The AMA’s House of Delegates voted in June 2019 to maintain the organisation’s long-held opposition to the end-of-life option.
“It is understandable, though tragic, that some patients in extreme duress — such as those suffering from a terminal, painful, debilitating illness — may come to decide that death is preferable to life. However, permitting physicians to engage in assisted suicide would ultimately cause more harm than good,” the AMA wrote in its opinion piece.
Despite its staunch opposition to the laws, the state AMA chapters of California, Colorado, Hawaii, Maine, Maryland, Massachusetts, Nevada, Oregon, Vermont, and Washington all have moved into a neutral position.
A 2018 Medscape survey of 5,200 physicians across the US found that 58 per cent agreed medical aid in dying should be available to terminally ill patients, which was up 12 per cent from 2010. Additionally, 74 per cent of Americans think the end-of-life option should be available, according to a 2020 Gallup poll.
Although patients are required to be mentally fit when applying to take the prescription, concern has mounted on if the safeguards in place actually prevent those who suffer from depression or mental health problems from utilising the law.
In Oregon, for example, only one patient was referred psychological or psychiatric evaluation in 2019. This number is consistent with all of Oregon’s data since the law was enacted, with a vast majority of patients never receiving a mental health evaluation.
“If you’re terminally ill, it is quite reasonable to understand that you’re going to go through all kinds of feelings, including grief feelings, and the chance of you becoming clinically depressed is certainly going to be higher than if you weren’t terminally ill,” Dr Callister said, emphasising the importance for these patients to be clinically assessed before accessing end-of-life options.
“Being depressed is a natural part of what we will call a reactive grief,” he added. “We have to look at from a public policy perspective and ask if there is a suicide contagion that comes with legalised assisted suicide.”
Oregon’s suicide rate per 100,000 residents was 16.03 per cent in 1998 and has since risen to 19.6 per cent in 2019. People dying under the Death with Dignity Act are not included in these figures.
The national suicide rate has also risen in that time period, from standing at 11.12 per cent per 100,000 people in 1998 to rising to 14.2 per cent in 2018.
It would be difficult to determine how much Oregon’s Death with Dignity Act has played into the rise of the state’s suicide rate, but the rate is 35 per cent higher than the national average, according to a study by the Oregon Public Health.
Ultimately the largest concern brought up against the passing of these laws is coercion on the part of the physician, insurance companies, or patient’s family members and friends that could convince someone to take the medication.
Proponents have argued there are limited reports of abuse in all states with the end-of-life-option. But with healthcare professionals present during less than one-third of these deaths plus few patients being referred for psychiatric evaluations, the proponents claim is shrouded in uncertainty.
Kathryn Judson, an Oregon resident, wrote a letter to the editor in the Hawaii Free Press in 2011 to explain her opposition to the passing of medical aid in dying.
“When my husband was seriously ill several years ago, I collapsed in a half-exhausted heap in a chair once I got him into the doctor’s office, relieved that we were going to get badly needed help (or so I thought),” she wrote.
“To my surprise and horror, during the exam I overheard the doctor giving my husband a sales pitch for assisted suicide. ‘Think of what it will spare your wife, we need to think of her’ he said, as a clincher.”
She saw the conversation as coercion on the part of the physician, and she and her husband, David, sought out a different doctor about their options for his illness. David lived an additional five years after that interaction.
“I think despite the best intentions to alleviate suffering, these laws are creating horrible, negative consequences,” Dr Callister said.
He advocated for focusing on improvements to palliative care, hospice care, and social services for patients over passing end-of-life laws.
“We don’t need these laws … because we can control your symptoms at the end of life,” he said.
Published in the Waltham Wicked Local on October 30, 2020 by Adrianna Cambara, senior pastor for Ministerio Abba Padre Internacional Inc. in Waltham. You can read the letter below at https://waltham.wickedlocal.com/news/20201030/opinion-letter-to-editor-assisted-suicide-is-flawed.
“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.
John’s oral testimony can be read at NotDeadYet.org.
John’s written, submitted testimony can be downloaded: John_Kelley_Health_Equity_Task_Force.docx, and is also copied in it’s entirety below.
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.
John B. Kelly
OCR Resolves Complaint with Utah After it Revised Crisis Standards of Care to Protect Against Age and Disability Discrimination. https://www.hhs.gov/about/news/2020/08/20/ocr-resolves-complaint-with-utah-after-revised-crisis-standards-of-care-to-protect-against-age-disability-discrimination.html
Oregon end of life concerns, page 12 – https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year22.pdf
Letter to the New England Journal of Medicine, “Dr. Jack Kevorkian and Cases of Euthanasia in Oakland County, Michigan, 1990–1998,” N Engl J Med 2000; 343:1735-1736. DOI: 10.1056/NEJM200012073432315. Scroll down to pages 1735-36 for full text at https://www.researchgate.net/publication/12146490_Dr_Jack_Kevorkian_and_Cases_of_Euthanasia_in_Oakland_County_Michigan_1990-1998/link/576bbdd308aef2a864d4c598/download
Connecticut suicide prevention plan, page 44, at https://www.sprc.org/sites/default/files/Conn_Suicide-Prevention-Plan-2020.pdf
Thanks to Second Thoughts CT, especially leaders Cathy Ludlum and Stephen Mendelsohn, for your advocacy that made possible Connecticut’s disability-conscious suicide prevention plan!
Read Jonah Carlson’s letter in the Daily Hampshire Gazette, published June 23, 2020.
“For years, I assumed the progressive position on assisted suicide was clear. But when I became involved in activism regarding disability rights and justice several years after becoming disabled myself, I learned more about the issue and ended up changing my mind.
Every major disability advocacy organization in the United States that has taken a position on assisted suicide opposes it. There are compelling reasons why, and legislators and the public can learn from listening to disabled voices on this issue.”
Read Anita Cameron’s letter to the editor in the Boston Globe on August 31, 2020. Not Dead Yet has reprinted her letter.
“Michael Martignetti wants a state program to assist his suicide if he is suffering from the effects of his disability (“Mass. should enact End Of Life Options Act,” Opinion, Aug. 13).
I want to be able to live. I want my conditions effectively treated, and I want effective pain relief. But while Martignetti may assume he will get good care, Black people like me tend to receive inferior care because of racial disparities in cardiac care, diabetes, and cancer.“
Anita Cameron is the director of minority outreach for Not Dead Yet, a national disability rights group opposed to assisted suicide.
Read John Kelly’s letter to the editor in the Greenfield Recorder on August 12, 2020 in response to an assisted suicide supporter.
“I disagree with Joan Milnes’s call for passage of the assisted suicide bill now in the legislature (“Making a final choice about quality-of-life,” July 28). Her framing of it as an individual matter of “choice” about one’s so-called “quality-of-life” is prejudicial and dangerous….”
Help us oppose Massachusetts Bills H.4782 and S.2745 which would legalize assisted suicide.. Visit the Patients Rights Action Fund Action Center for information on how to support the opposition.