Daniese McMullin-Powell’s Press Conference Statement Opposing DE HB 140
Albany Times Union Op-Ed: Aid in Dying Act offers too few protections for the disabled
As longtime disability rights advocates, we have seen our lives marginalized and devalued by the medical establishment. We agree with the principle of a right to self-determination; however, a balanced perspective of assisted-suicide legislation is frequently missing from the discussion.
The disability community’s core message is that if assisted suicide is legal, some people’s lives will be lost due to mistakes, coercion, and abuse, and that’s an outcome that can never be undone.
New York’s bill on physician-assisted suicide, the Medical Aid in Dying Act, is being marketed as merciful, where a terminally ill patient would have the option to end their suffering with a lethal dose of medication. But its advocates neglect to address how this same law would legalize assisted suicide in a manner that would pose mortal danger to vulnerable and marginalized people.
In a recent study of doctors’ perceptions of disabled people published in Health Affairs and reported in the Harvard Gazette, 82.4 percent of the doctors surveyed felt that people with disability have a worse quality of life than others and fewer than 57 percent said they strongly welcomed disabled patients. The lead author stated, “The magnitude of physicians’ stigmatizing views was very disturbing.” Simply put, we don’t trust all physicians to make decisions about life and death.
The current pandemic only serves to highlight these concerns. A representative of Oregon Disability Rights has said regarding care during the pandemic, “We’ve had … cases … where, essentially, medical staff are encouraging patients, even ones who have relatively clear expressed wishes to get the full measure of assistance, to convert to a do-not-resuscitate … status, essentially because of their disability.” A Texas hospital refused to give COVID-19 treatment to a 46-year-old Black disabled man, with his wife being told he had little quality of life. He subsequently died. In times of crisis, society’s implicit biases are more likely to influence critical medical decisions.
How will New York state assure that people, especially those with cognitive issues, are not being influenced by family members and others who view them as a burden? Current legislation in New York has no realistic way of protecting individuals from mistakes, coercion or abuse and lists no reporting requirements. Medical confidentiality prevents oversight. No independent witness is required during the death of an individual. In a world where abuse of persons with disabilities and seniors is rampant, this alone is cause for concern.
Assisted-suicide laws in other states direct that a doctor be satisfied that a person’s decision to die is not being unduly influenced by another. It is not clear how office visits can yield this information. If doctors start with the presumption that a person’s illness or disability inevitably diminishes his life, evidence of undue influence can be overlooked. How will the state Department of Health, which has been terribly remiss in monitoring our loved ones’ health and safety in nursing facilities, adequately monitor these potential problems?
We know a cultural divide exists between those with and those without a disability. Will some folks want to end their lives because our health care system cannot assure a good quality of life, economic security, quality affordable accessible housing. adequate support services, and a life free from the threat of unwilling institutionalization? These are practical and societal issues that doctors, focusing on whether a condition can be cured, may lack the knowledge or perspective to solve.
We do not question the “good intentions” of this legislation, and we believe most doctors do try to do their best for their patients. However, physicians, policymakers and legislators are part of a society which accepts glaring health care disparities. Nothing about their training or expertise puts them above the implicit cultural biases. Unless advocates for assisted suicide address and not trivialize these critical issues, any supposed safeguards of assisted-suicide laws are illusory. In issues of life and death, we believe the state should err on the side of caution.
Melvyn R. Tanzman of Yorktown is a retired executive director of Westchester Disabled on the Move. Lisa Tarricone of Poughkeepsie is executive director of Taconic Resources for Independence.
NALA Facts & Findings: Assisted Suicide Laws and Ableism by Diane Coleman, J.D.
[For a PDF version of this article, go HERE.]
I have an advanced neuromuscular disability. Six years ago, I went into respiratory failure. I now use a ventilator with a CPAP mask about 22 hours a day, without which I would die in a short time.
As a disabled person who depends on life-sustaining treatment, I could qualify for assisted suicide if I lived where it is legal. If I became despondent, if I lost my husband or my job, and decided that I wanted to die, I would not be treated like a healthy nondisabled person who despaired over divorce or job loss.
Throughout my adult life, I have worked full time, first as an attorney and then directing small nonprofit organizations. I have also run a group I founded in 1996,1 which now has three staff, a few contractors, and volunteer advocates across the country. I have spoken at conferences, lectured at universities, published articles, submitted legislative testimony, and provided the day-to-day management an organization requires. I am not saying this to be “inspirational,” but to make it clear that people like me have good lives and should not be written off.
ECONOMIC PRESSURES TOWARD ASSISTED SUICIDE
If anyone doubted that someone like me would qualify for assisted suicide in a state like Oregon, those doubts were laid to rest in 2017 when an Oregon official clarified in writing:
Patients suffering from any disease (not just those that typically qualify one for the DWDA [Death with Dignity Act]) may not be able to afford some treatments or medication, and may choose not to pursue some treatments or take some medication for personal reasons. . . If the patient does not receive treatment or medication (for whatever reason) and is left with a terminal illness, then s/he would qualify for the DWDA.2
If I could not afford insurance copays, I would be eligible for assisted suicide in Oregon. For over a year, I had a $500 monthly copay for my breathing support until my employer changed health plans. It was not easy. As assisted suicide gains traction, people of color, seniors, and other economically disadvantaged communities will increasingly find that other options slip away.
With managed care companies running most public and private health care, where providing expensive care generally reduces profits, we should at least question whether there is an inherent conflict of interest in having health care providers administrate a state-sanctioned assisted suicide program.
PUBLIC RELATIONS MESSAGING
In the decade leading up to the 1997 passage of Oregon’s assisted suicide referendum, proponents often revealed their view that people with disabilities should be eligible. Two-thirds of “Dr. Death” Jack Kevorkian’s body count were not terminally ill. The Hemlock Society contributed to his legal defense fund.
But when the Hemlock Society later morphed into “Compassion and Choices,” expensive public relations efforts shifted messaging, employing an incremental strategy. Assisted suicide is only for people expected to die within six months, they said. The person must self-administer the lethal drugs, so no one else could kill them, they said.
DISABILITY DISCRIMINATION IS ABLEISM
All along, disability groups have pointed out the inherent discrimination and flimsy safeguards in assisted suicide bills. Why does everyone else get suicide prevention, while older, ill, and disabled people get suicide assistance? The discrimination of state-licensed health professionals denying equal suicide prevention and instead providing suicide assistance based on health and disability status is a fundamental violation of the Americans with Disabilities Act.
Anyone could ask for assisted suicide, but doctors decide who is eligible. Over the past year, the COVID-19 pandemic has revealed that people with disabilities have been denied treatment for the virus due to their disabilities and pervasive medical bias about our “quality of life.”3 According to a Harvard researcher, “In our survey of 714 practicing US physicians nationwide, 82.4 percent reported that people with significant disability have worse quality of life than nondisabled people.”4 This is only the most recent academic confirmation of experiences shared by many disabled people. Such bias is among the many factors that led the National Council on Disability in 2019 to issue a formal report entitled “The Danger of Assisted Suicide Laws.”5
Reported reasons for requesting assisted suicide pertain to disability, chronic or acquired, due to illness. Oregon data lists “loss of autonomy” (91%), “less able to engage in activities” (90%), “loss of dignity” (74%), “burden on others” (47%), and “losing control of bodily functions” (43%).6 Some of these reasons could be addressed by consumer-directed in-home personal care services, but neither disclosure nor provision of such services is required. The law operates as though the reasons do not matter and nothing needs to be done to address them. People who need home care are treated as disposable.
EMPTY “SAFEGUARDS”
Assisted suicide proponents claim that there has not been a single documented case of abuse or misuse of these laws. These claims are demonstrably false. For example, cases have been documented by Drs. Herbert Hendin and Kathleen Foley in “Physician-Assisted Suicide in Oregon: A Medical Perspective”7 and the Disability Rights Education and Defense Fund compilation of “Oregon and Washington State Abuses and Complications.”8
Moreover, the Oregon Public Health Division data9 are based on forms filed by the prescribing physicians, with the early state reports admitting: “Under reporting and noncompliance is thus difficult to assess because of possible repercussions for noncompliant physicians reporting to the division.”10
Further emphasizing the serious limits on state oversight under the assisted suicide law, Oregon authorities also issued a release in 2005 clarifying that they have no authority to investigate Death with Dignity cases.11
NON-TERMINAL PEOPLE GET LETHAL PRESCRIPTIONS
The Oregon reports show that non-terminal people received lethal prescriptions. The 2019 annual report12 shows that at least one person lived 1,503 days, significantly longer than the 180-day prognosis the law requires. The 2020 report states that over the years, 4% of individuals who died by assisted suicide outlived their six-month prognosis.13 This does not take into account the individuals who took the drugs quickly but may have survived if they waited.
Oregon also reports that non-cancer conditions found to qualify for assisted suicide include “neurological disease, respiratory disease, heart/circulatory disease, infectious disease, gastrointestinal disease, endocrine/metabolic disease (e.g. diabetes)” and, in the category labeled “other,” arthritis, arteritis, blood disease, complications from a fall, kidney failure, musculoskeletal system disorders, sclerosis, and stenosis.14
COERCION AND ABUSE
Four people are required to certify that the person is not being coerced to sign the assisted suicide request form and appears to have decisional capacity: the prescribing doctor, second-opinion doctor, and two witnesses to the person’s signature. Yet none are required to actually know the person. The typical Oregon doctor has known them for an average of 12 weeks,15 so how could the doctor know if the person is being pressured or abused at home? This is significant in light of well-documented elder abuse identification and reporting problems in a society where an estimated 1 in 10 elders is abused, mostly by family and caregivers.16
Assisted suicide proponents are fond of saying that many people do not go through with it, but the lethal drugs give them peace of mind. What if some of those who change their mind about taking the lethal drugs have family members who wish otherwise? If the only other person present at the end is an impatient heir or tired caregiver, how will anyone know whether the person self- administered the lethal drugs or was cajoled, tricked, or forced?
Although “self-administration” is supposedly a key “safeguard” in all cases, in about half the reported Oregon assisted suicide deaths, there was no independent witness to consent or self-administration at the time of ingestion of the lethal drugs.17 If the drugs were, in some cases, administered by others without consent, no one would know.
Finally, the definition of “capacity” in most assisted suicide laws and bills provides for the patient to communicate through a person “familiar with a patient’s manner of communicating.”18 Doctors often speak with caregivers rather than disabled individuals, such as people with speech impairments, but this is especially dangerous in the assisted suicide context.
CONCLUSION
Proponents of legalizing assisted suicide have taken a legal immunity statute, which shields third parties, and marketed it deceptively as a personal rights statute. Only suicide assistors are protected, not patients.
Lawmakers should reject the ableism inherent in a public policy of assisted suicide and look behind the public relations images to the actual bill language to see the real dangers to the many older, ill, and disabled people who are not safe from mistake, coercion, and abuse.
Resources:
1 https://notdeadyet.org/
2 https://drive.google.com/file/d/1xOZfLFrvuQcazZfFudEncpzp2b18NrUo/view;
https://www.washingtontimes.com/news/2018/jan/11/diabetics-eligible-physician-assisted-suicide-oreg/
3 https://www.centerforpublicrep.org/covid-19-medical-rationing/
4 https://www.healthaffairs.org/doi/10.1377/hlthaff.2020.01452
5 https://ncd.gov/sites/default/files/NCD_Assisted_Suicide_Report_508.pdf
6 https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year23.pdf
7 https://dredf.org/wp-content/uploads/2012/08/Hendin-Foley-Michigan-Law-Review.pdf
8 https://dredf.org/wp-content/uploads/2015/04/Revised-OR-WA-Abuses.pdf
9 https://www.oregon.gov/oha/PH/ProviderPartnerResources/Evaluationresearch/deathwithdignityact/Pages/index.aspx
10 https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year2.pdf (page 12).
11 https://dredf.org/wp-content/uploads/2012/08/Oregon-DHS.pdf
12 https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year22.pdf (page 13)
13 https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year23.pdf (page 11)
14 Id., Pages 11 & 13
15 https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year23.pdf (page 12)
16 http://www.nejm.org/doi/full/10.1056/NEJMra1404688
17 23rd year report (footnote 15), page 12
18 https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Pages/ors.aspx (127.800 s.1.01.(3))
Diane Coleman, J.D., MBA, is the President/CEO of Not Dead Yet, a national disability group she founded in 1996 to organize disability opposition to assisted suicide and euthanasia. Not Dead Yet (NDY) has led in filing friend of the court briefs joined by other national disability organizations in several states and the U.S. Supreme Court. Coleman has also organized disability rights protests opposing assisted suicide laws, as well as engaged in extensive public education activities, including conference presentations, university lectures, and media interviews. dcoleman@notdeadyet.org
Reprinted with permission of Diane Coleman and the National Association of Legal Assistants, Inc. This article originally appeared in the Q4 November 2021 issue of FACTS & FINDINGS, the quarterly journal of NALA. Inquiries should be directed to NALA, 6450 S. Lewis Avenue, Suite 250, Tulsa, OK 74136, or by e-mail to nalanet@nala.org.
Fighting “Better Dead Than Disabled” – NDY Year In Review
There’s never a dull moment in NDY’s fight against the constant messages that we disabled people are better off dead – and society is better off without us. We couldn’t do it without the active involvement of disability advocates and organizations. We may be small but, because of your efforts and support, together we are leaving a big footprint. For more details about our work, please see our Annual Activity Report below. And, if you can, please consider making a year-end donation to help us continue the fight for our lives.
Not Dead Yet Annual Report: October 2020 – September 2021
Not Dead Yet (NDY) is a national disability rights group headquartered in Rochester, New York since 2008. NDY is governed by a national Board of Directors and currently employs three staff members, a President/CEO, Director of Minority Outreach and New England Regional Director. NDY also contracted with the Disability Rights Education & Defense Fund as well as individual disability advocates to do policy work, research and write on our issues. We were profoundly grieved by the passing of our partner and friend, Marilyn Golden, DREDF’s Senior Policy Analyst. NDY’s activities are summarized below.
Publications: During the reporting year, NDY published 47 blog entries conveying a disability rights perspective on topics related to assisted suicide, euthanasia, medical ethics, third party decisions to withhold life-sustaining medical treatment and homicides of persons with disabilities. There were over 59,927 views of the website during the reporting year, and NDY posted 130 Facebook entries and 176 tweets. NDY created or participated in three videos on NDY topics.
Media: National NDY issued three press releases and participated in two press conferences. NDY staff, board and activists authored 9 op-eds published in mainstream outlets. NDY staff and advocates submitted 8 letters to the editor at least one of which was published. Print and broadcast media coverage: NDY staff, board and advocates were interviewed for one TV and seven radio broadcasts. There were at least 19 print or online news articles covering NDY messaging, including in the Washington Post, New York Times, Boston Globe, Hartford Courant and National Public Radio.
Systems Advocacy: NDY staff and advocates pursued several key systems advocacy policy initiatives during the reporting year, using a combination of strategies and approaches.
- Assisted Suicide: NDY opposed assisted suicide laws or expansion through training, community organizing, legislative meetings and testimony in seven states (CA, CT, MA, NV, NM, NY and RI). New Mexico legalized and California expanded assisted suicide, but the others did not. NDY’s Director of Minority Outreach worked in Massachusetts to form a group of Black disability advocates opposed to an assisted suicide bill. NDY also participated in efforts to support reintroduction of House Concurrent Resolution 79 expressing the Sense of Congress that assisted suicide laws are bad public policy.
- COVID-19 and Crisis Standards of Care: Litigation in which NDY joined with NMD United and individual NY vent users in a civil lawsuit against the state (Not Dead Yet v. Cuomo) regarding a policy allowing reallocation of personal ventilators was filed Oct. 7, 2020 and continued throughout the reporting year. NDY continued blogging and other networking regarding discrimination in crisis standards of care.
- “Futility” Cases: NDY joined in an amicus brief filed 10/08/21 in the Texas futility case of infant Tinslee Lewis. ASAN and NDY also filed an OCR complaint on 12/11/20 in the N. Garcia case involving a person with developmental disabilities denied COVID treatment.
- Opposing QALYs: NDY participated in the Partnership to Improve Patient Care Rapid Response Workgroup challenging the use of QALYs (Quality Adjusted Life Years) in health insurance coverage decisions.
- Opposing Bills to Make Assisted Eating Subject to Advance Directives and Surrogate Decisions: NDY worked with NYAIL and CDR to oppose NY A2634/S4967 which would allow assisted eating and drinking to be discontinued under advance directives and surrogate decisions, ending the life of a person deemed incapacitated. Met with Speaker Heastie and sponsoring legislators concerning the dangers of these bills to disabled people who require assistance to eat.
- Non-Discrimination in Healthcare: NDY worked with DREDF and others on communications with the federal HHS Office for Civil Rights to advocate for improved policies on non-discrimination in organ transplant eligibility, futility and suicide prevention.
NDY also filed two formal public comments during the reporting period:
- NDY Public Comment On Federal Healthcare Interim Final Rule In Response To COVID (01/04/21)
- NDY Public Comment on Draft PCORI Principles (11/13/20)
On 05/13/21, NDY also submitted a public comment thanking the National Council on Disability for its work opposing the use of QALYs in connection with the H.R. 3 bill and on Crisis Standards of Care. NDY signed onto 27 policy letters and position statements initiated by other organizations during the reporting year.
Conference, Workshop & Other Training Presentations: Not Dead Yet provided 30 online video training presentations, workshops, university guest lectures and webinars.
Collaboration and Networking: Throughout the year, NDY participated in at least 108 meetings on a variety of committees involving NDY issues and related health care topics. These included, among others, NCIL’s Healthcare/PAS Committee, the NY Association on Independent Living Health Committee, and the National Disability Leadership Alliance.
Diane Coleman Letter Published in Buffalo News
Buffalo News published Diane Coleman’s letter (12/27/21) describing how “Assisted Suicide Puts Pressure On The Elderly And Disabled” – that’s the title that the NY Alliance Against Assisted Suicide correctly gave it. This letter is about the deadly mix between our profit-driven health care system and legalizing assisted suicide – will insurers do the right thing or the cheap thing? Unfortunately, the title Buffalo News gave it – “Many would not choose physician assisted suicide” – missed the point. Still, we appreciate that it was published. Here’s the letter: