NDY & 18 Other Disability Groups Join DREDF Amicus Brief in Assisted Suicide Case

DREDF has just announced the filing of a friend-of-the-court (“amicus”) brief in a Massachusetts assisted suicide case.

Since 1996, NDY has organized numerous amicus briefs in assisted suicide cases, some of which are posted on our website HERE. DREDF has joined several of these briefs, but this is the first time DREDF has also served as counsel.

To DREDF’s great credit, this brief been joined by eighteen other national and Massachusetts disability groups, more than any previous Disability Brief filed in these cases. NDY, and I believe all that joined in this brief, are deeply grateful for DREDF’s and attorney Michelle Uzeta’s leadership, legal scholarship and skill in representing us before the Supreme Judicial Court of the Commonwealth of Massachusetts in this important case.

Here is DREDF’s announcement, which links to their strongly and expertly argued brief.

DREDF Files Amicus Brief on Behalf of Itself and Eighteen Other Organizations Opposing Efforts to Establish a Constitutional Right to Assisted Suicide in Massachusetts

The question of whether a constitutional right to assisted suicide exists must be addressed and understood from the perspective of the class of people who will be most adversely impacted if such a right is found – people with disabilities, whether terminally ill or not. On February 14, 2022, DREDF filed an amicus brief on behalf of itself and eighteen other organizations in Kligler v. Healy to provide such a perspective. Kligler is an appeal before the Supreme Judicial Court of Massachusetts that seeks to establish a constitutional right to assisted suicide. The nineteen amici are recognized authorities in the field of disability rights who oppose the legalization of assisted suicide. The brief of amici discusses how assisted suicide discriminates against people with disabilities, degrades their perceived value and worth, and puts them at higher risk of discrimination and abuse.

From page 2 of the Disability Brief:

FULL LIST OF AMICI CURIAE

  • Disability Rights Education and Defense Fund

  • The Arc of the United States

  • The Arc of Massachusetts

  • American Association of People with Disabilities

  • Association of Programs for Rural Independent Living

  • Autistic Self Advocacy Network

  • Autistic Women and Nonbinary Network

  • Disability Policy Consortium

  • Disability Rights Legal Center

  • Independence Associates, Inc.

  • Metro West Center for Independent Living

  • National Council on Independent Living

  • Not Dead Yet

  • National Organization of Nurses with Disabilities

  • Second Thoughts Massachusetts

  • Stavros Center for Independent Living, Inc.

  • TASH

  • United Spinal Association

  • World Institute on Disability

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Join Annual Disability Day of Mourning Events March 1st

For National Virtual event 4:00 pm, go HERE.

For New York virtual event: MARCH 1, 3:30pm, Register HERE.  

For OTHER CITIES, check HERE

People with disabilities are twice as likely as non-disabled people to be victims of violent crime. Every year, the national media covers dozens of stories about murders of people with disabilities by family members or caregivers, and many more go unnoticed.

Too often, the coverage focuses on sympathy for the murderer, because they had to live with or care for aperson with a disability. The message to the public is that our lives—not our deaths—are the tragedy.

On March 1st, join the Autistic Self Advocacy Network in remembering people with disabilities who lost their lives at the hands of family members or caregivers. We will remember those we have lost and remind the world that their lives had value.

Cathy Ludlum Testifies – “Many people are hanging on by a thread.”

Cathy Ludlum

PUBLIC HEALTH COMMITTEE
Testimony Opposing SB 88
An Act Concerning Aid in Dying for Terminally Ill Patients February 23, 2022

Co-chairs 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 disabled people and allies who are working to prevent the legalization of medical assisted suicide. I am opposed to SB 88.

The question at hand is not whether people can take their own lives. Suicide is not illegal. The question is how many other struggling people will follow their lead, pressured by society and assisted by the healthcare system to die?

Every year when this bill comes up, I testify against it. I stand before you as a competent, creative, and successful professional who has a good life while experiencing a high level of disability.

Not this year.

The shortage of direct care workers (whether you call them personal assistants, PCAs, or home health aides) has reached a point where lives hang in the balance, including mine.

Yes, I am talking about the fact that people are not consistently getting out of bed in the morning, or must go to bed at 5 in the afternoon. Sometimes meals are skipped or other bodily needs go unmet because there is no one to assist with these critical activities.

These workers are significantly undercompensated and are leaving the field by the hundreds because they cannot make ends meet. They do not feel respected or appreciated, and the value of the support they provide has been largely unrecognized.

But in the context of today’s legislation, I am talking about the psychological impact of being severely disabled and not having enough support …for years.

Every so often, someone asks what medical assisted suicide has to do with disability. For two decades, the disability community has been pointing to the End-of-Life Concerns listed in the Oregon and Washington State data summaries. The top four concerns never change:

From the Oregon Death with Dignity Act 2020 Data Summary 1

  • Less able to engage in activities making life enjoyable (94.3%)

  • Losing autonomy (93.1%)

  • Loss of dignity (71.8%)

  • Burden on family, friends/caregivers (53.1%)

From the Washington State 2020 Death with Dignity Act Report 2

  • Less able to engage in activities making life enjoyable (90.6%)

  • Losing autonomy (89.6%)

  • Loss of dignity (74.8%)

  • Burden on family, friends/caregivers (58.6%)

Let me show how this is relevant to me and my colleagues.

Less able to engage in activities making life enjoyable — With the dedicated support of my personal assistants, I have lived in my own home for 30 years, worked, traveled, done things with friends, and basically had a great life. That seems to be over as I struggle to get enough supports. Advertising no longer produces new hires. Without enough workers, my focus every day has to be on shifting people around so I can get my most basic needs met.

Losing autonomy – My independence depends on interdependence. Technology allows me to do a few things for myself, mainly on the computer. But without human assistance, I cannot clean my house, take a shower, or get to a doctor’s appointment; much less work toward my personal and business goals.

Loss of dignity – I believe that dignity is inherent in everyone, but not everyone is treated that way. I have had to hire a number of people who were literally repulsed by normal bodily functions. Some hurt me with their words. I have adjusted so many things in my life, my home, my relationships, and my personal care that I don’t even know where I can trim anymore.

Burden on family, friends/caregivers – Everyone is going to burn out eventually. Not having enough workers, I overrely on the ones I have left. In times past, I had backup assistants, but you can’t find those now. When I cannot find anyone else, I have to rely on friends, some in their 70s, to provide care. I know like I’ve never known before what it means to feel like a burden.

I am telling my story because I want you to understand that death has begun to look preferable to living like this.

You can keep saying that medical assisted suicide is not intended for the likes of me, but it takes a lot of effort every single day to keep my body working and my lungs breathing… and increasingly I think about giving up.

Don’t believe I would qualify under SB 88? Look at the bill. It clearly points to people like me as appropriate users of medical assisted suicide.

Sec. 1 (21) “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 if the progression of such condition follows its typical course.

The progression of spinal muscular atrophy is death if it follows its typical course. I am almost 60 years old because I have been vigorously interfering with the typical course of SMA. When I was 35 I became unable to eat enough to sustain my life and started using a feeding tube. At 38 I was choking in my sleep so I started using respiratory support.

SB 88 says nothing about the impact of treatment on life expectancy. The public likely assumes that the lethal prescription is only available to people who have exhausted all treatment options. But this is not so. An individual may stop life-sustaining medications or technologies at any point, rendering them terminal within six months. In my case, we are talking days, not months.

In their discussion on whether people with anorexia qualify for assisted suicide, the American Clinician’s Academy on Medical Aid in Dying’s (ACAMAID) Ethics Consultation Service notes:

Mandating that the patient exhaust all possible treatments before requesting aid in dying is not in keeping with other “terminal” illnesses. For example, we allow patients with end stage cancer to forgo chemotherapy or other potentially life – extending treatments and request medical aid in dying. 3

As an Oregon official has clarified in writing, any person who becomes terminal because they do not receive treatment, for any reason (including not only refusal of treatment, but inability to pay for treatment), would qualify for assisted suicide under an Oregon-type law. 4 5

The law is best seen as a permissive law, and states only that patients must have a terminal illness with six months or less to live. It does not compel patients to have exhausted all treatment options first, or to continue current treatment. It is up to the patient and doctor to discuss disease and treatment options. But if the patient decides they don’t want treatment, that is their choice.

I am not suggesting that people be forced to accept treatment they do not want. But we must understand that populations other than those traditionally considered to be terminal (end stages of cancer, COPD, kidney failure, for example) will be affected by this legislation.

Refusal of treatments that have previously allowed people not only to live, but to thrive, should point in the direction of suicide prevention. Instead, there is too often an assumption that death is imminent and even preferable. Connecticut’s State Suicide Prevention Plan 2025 describes the challenges faced by disabled people in getting equal access to suicide prevention services. It also acknowledges that physician assisted suicide puts people with disabilities at particular risk. Please see pp. 56-58. 6

Suicide is contagious, and this is suicide, no matter how often and fervently you deny it.

I am not alone. Many people are hanging on by a thread. Maybe because of unmet disability needs. Maybe because of economic distress. Maybe from isolation and sadness.

Do we as a society want to strengthen that thread so it does not break? Do we want to make sure people who need supports (whether home care or other supports) get them?

Or do we want to create a policy that says, in effect, “ending your life is reasonable if your problems are big enough”? Given that wink of approval, some (I suggest many) will cut that thread. Perhaps not right away, but more and more as the years go by.

I am aware that there is intense pressure to get this bill passed in this legislative session. If it does, there will be plenty of time to go back later and gut the hollow safeguards it contains. This is already happening in other states.

Again, I say, the question at hand is not whether people can take their own lives. The question is how many other struggling people, pressured by society and assisted by the healthcare system, will follow their lead?

SB 88 is bad medicine, bad for people, and bad public policy. Please vote NO. Thank you.

Sources:

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2 Washington State 2020 Death with Dignity Act Report

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3 Summary of Consultation concerning a Patient with Anorexia Nervosa, American Clinicians Academy on Medical Aid in Dying (ACAMAID), Aid in Dying Ethics Consultation Service

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4 Fabian Stahle, “Oregon Health Authority Reveals Hidden Problems with the Oregon Assisted Suicide Model”

5 “Diabetics Eligible for Physician Assisted Suicide Oregon, ” The Washington Times

https://www.washingtontimes.com/news/2018/jan/11/diabetics-eligible-physician-assisted-suicide-oreg/

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6 Connecticut’s State Suicide Prevention Plan 2025, pp. 56-58

Nancy Alisberg: Physician assisted suicide – second thoughts

As a February 23rd committee hearing approaches on the Connecticut assisted suicide bill, disability advocates are talking about a compelling article by a former disability protection and advocacy attorney who’s experiences changed her views about this controversial issue. Her article was published in today’s CT Mirror.

Physician assisted suicide – second thoughts

I believe in choice and in bodily integrity. The choices I have believed in included the right to choose the manner of one’s death. To be able to say that “enough is enough.” To be able to choose to end one’s suffering. Nothing seemed clearer. But then I had second thoughts.

I have been a civil rights lawyer for almost 40 years. In 1995 I began to develop a specialty in disability rights. In 2000 I became the Managing Attorney at the State of Connecticut Office of Protection and Advocacy for Persons with Disability, and from 2017 until my retirement in 2018, I was the Legal Director at Disability Rights Connecticut.

In 2010, I worked on a case that helped me understand how physician assisted suicide can result in the untimely and unnecessary death of people with disabilities who otherwise could live productive and fulfilling lives. The disabled people I represented were challenging an attempt by doctors to be exempted from state laws regarding prosecution for prescribing lethal doses of drugs to patients the doctors judged to be terminally ill and who asked for drugs to take their own lives.

I learned of individuals with significant disabilities who, while not terminally ill, could not find a way to live outside of a long-term care institution, and chose to stop receiving food and hydration or to have life support equipment disconnected. I learned that physician assisted suicide removes the impetus for doctors to treat situational depression, to develop better palliative care, and to find innovative ways to help people become independent so they do not feel like death is their only option.

For a person with a significant disability to live independently, it takes knowledge about assistive technology, employee management skills for dealing with personal care assistants, familiarity with human service and health care systems, and the expenditure of considerable effort. Few physicians have this skill set. Oftentimes, it is a battle for disabled people to receive the same standard, aggressive treatment for their illnesses that people without disabilities receive.

Case in point: I represented a 15-year-old with intellectual disabilities who was diagnosed with a treatable form of leukemia. The physicians said he should not be treated because he would not be able to understand why he was “suffering” from the side effects of the chemotherapy, and the radiation might cause him to lose additional cognitive function.

They decided that his life would no longer be worth living, and the hospital’s ethics committee concurred. After OPA’s intervention the young man was treated, went into remission, and was adopted into a loving family.

When doctors operate under the assumption that people with significant disabilities are “suffering,” an early death can begin to look reasonable. I began to understand that permitting physician assisted suicide would discourage doctors from thinking of people with disabilities as having a life worth saving. If Connecticut physicians are permitted to end lives, people with significant disabilities will be vulnerable because often they don’t want to be a burden on society and are deferential to physicians’ knowledge.

The papers I filed in 2010 taught me that…

“Disability advocacy groups know that among health care providers, the distinction between disability and ‘terminal disease’ is often more a matter of perception than objective diagnosis. For example, the various manifestations of muscular dystrophy, multiple sclerosis, or any number of other chronic conditions may be considered by some to be progressive disabilities, while others see them as ‘terminal diseases’. Some people are born with disabilities that involve multiple, complex medical issues or genetic syndromes that can, but do not always, result in shortened life expectancies. Other people with physical disabilities may experience repeated, life-threatening infections or various other serious health issues. Some even depend on life-support technologies, such as respirators or dialysis, or receive nutrition and hydration through feeding tubes and central line catheters. It is not clear at what point these people would be considered ‘terminally ill’ or how much such decisions would be influenced by pervasive stereotypes about ‘quality of life’ and frank ignorance about the possibilities of living a good life with a disability.”

I have thus changed my position. I no longer support what is euphemistically called “death with dignity.” I see it as a dangerous option that devalues the lives of people with disabilities and will lead to eugenics.

I have incorporated this into my personal life. My advanced directive no longer permits earlier termination of life support. Life is valuable. All lives are valuable. Let the State of Connecticut celebrate this, and defeat physician assisted suicide.

Nancy Alisberg lives in West Hartford.

NDY Files Public Comment With CMS Re Equity In Organ Transplantation and Donation

[Filed today, with credit to attorney Lisa Blumberg; deadline Feb. 1; short or long comments can be filed here.]

Not Dead Yet, The Resistance

COMMENT ON CMS-2021-0184-0001

January 31, 2022

Not Dead Yet, a national disability rights organization, is pleased to respond to the portion of the Center for Medicare & Medicaid Services (CMS) December 3, 2021 request for comment (file number 3409-NC) that deals with equity in organ transplantation and donation. People with disabilities are often people of color or members of other disadvantaged groups. We deplore subjecting any group to disparities in access to needed organ transplants. However, our response will focus on the following two related questions posed by CMS:

(1) What changes can be made to current requirements to ensure that transplant programs provide equal access to transplants for individuals with disabilities; and

(2) What changes can be made to current requirements to address implicit or explicit discrimination, such as decisions made based on faulty assumptions about quality of life and the ability to perform post-operative care.

The organ transplant program saves lives, including some of our organization’s grassroots advocates. Its goals are of unquestionable significance. In order to function effectively though, it needs to have strong public trust and support. All lives of persons who need and can benefit from organ transplants must be equally valued. The same is true of the lives of potential donors. The program must operate in strict compliance with the various federal and state laws that prohibit healthcare discrimination against members of any protected group.

We appreciate and welcome the concern that CMS has about the findings in the 2019 report by the National Council on Disability (NCD) on “Organ Transplant Discrimination against People with Disabilities”. (1) These findings indicate that despite federal and state protections, people with disabilities are often denied equal access to organ transplants solely on the basis of their disability and, moreover, that existing and proposed transplant policies fail to adequately protect people with disabilities (including those using forms of life support) from being pressured to be organ donors or from being deemed organ donors prematurely.

In a recent study of doctors’ perceptions of disabled people, 82.4% of the doctors surveyed felt that people with disability have a worse quality of life than others and fewer than 57% said they strongly welcomed disabled patients. (2) Lisa Iezzoni, the lead author and a health care policy researcher at Massachusetts General Hospital, stated, “The magnitude of physicians’ stigmatizing views was very disturbing.” (3) Such attitudes contribute to healthcare disparities and the organ transplant program is not above the fray.

We urge CMS to adopt regulations that specifically deal with prohibiting discrimination based on disability at any point in the organ transplant process. These regulations can be similar to the provisions of the bipartisan bill seeking to prevent organ transplant discrimination that has been introduced in the Senate. (4) The regulations should provide that a healthcare provider, transplant center or any organization that matches organs with patients may not on the basis of a qualified individual’s mental or physical disability— (1) determine that the individual is ineligible to receive an organ transplant or related services; (2) deny the individual an organ transplant or related services; (3) refuse to refer the individual to an organ transplant center or other related specialist for the purpose of receipt of an organ transplant or other  related services; (4) refuse to place the individual on an organ transplant waiting list, or place the individual at a lower-priority position on the list than the position at which the individual would have been placed if not for the disability of the individual; or (5) decline insurance coverage for the individual for any procedure related to the person receiving an organ transplant.

The regulations should also provide that reasonable accommodations should be made in transplant policies and procedures so as to ensure that a patient with a disability is fully informed and involved in the process and that communication with all interested parties is enhanced. These accommodations may include providing, among other things, sign language interpreters and accessible digital and print materials for patients and families. Reasonable modifications should also encompass ensuring that a patient has the necessary support services to comply with postoperative care. For example, some patients may need a mechanism for shared decision making or in-home aide services. It should be emphasized that all patients are individuals. Needs will differ as will the ways in which these needs should be met.

Lastly and importantly, the regulations should encourage expedited review by the Office of Civil Rights and the courts of cases where discrimination in the organ transplant process is alleged.

We also urge that CMS adopt the key recommendations on pages 14-15 of the NCD report (5) to the extent that they are not incorporated into the regulations that we are asking CMS to draft.

For example, CMS should release guidance and provide technical assistance clarifying that Titles II and III of the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 apply to organ transplant centers and hospitals. This guidance and technical assistance should detail the obligations of organ transplant centers and hospitals to avoid discriminating on the basis of disability.

CMS should explicitly state that making assumptions regarding the post-transplant quality of life for people with disabilities violates federal law. Quality of life decisions are entrenched in the health care system and in the larger society and eradicating them will take effort and education. The simple act though of making it clear that quality of life bias must not influence medical decisions may in and of itself cause some in the professional transplant community to change their approach. Regulations do carry moral authority as well as legal authority.

Similarly, it can be expected that the more transplant centers and providers are informed about the ways in which the practical issues posed by various disabilities can be dealt with as well as the range of supports that can and should be available, the more that concerns that disabled patients can not comply with needed post-operative care will be alleviated. Training and technical assistance in this area is immensely important and all transplant patients will feel a beneficial ripple effect.

Lastly, we would like to briefly discuss overreach in organ procurement since this is an issue that goes directly to the integrity of the transplant program. The NCD report described the case of Colleen Burns who had a history of depression and was thought to have gone into cardiac arrest after a drug overdose. Incredibly, she woke up on the operating table just as she was about to be an organ donor. Medical personnel had ignored signs that her brain was still functioning and ignored the possibility that the drug overdose was inhibiting primitive reflexes. (6) Equally shocking was the case of Ruben Navarro, a young man disabled by a neurological disorder, who did not die immediately when his ventilator was removed, but died eight hours later after his body was flooded with drugs and the antiseptic Betadine in preparation for organ donation. Although the surgeon involved was later acquitted of criminal charges (7), there was evidence that the actions of the transplant team hastened Mr. Navarro’s death. This simply cannot be tolerated. The line between organ donation and organ euthanasia must never be blurred.

Disabled people are vulnerable to pressures to stop treatment for life threatening conditions, especially in a cost cutting environment. This may be especially true for newly disabled people who have yet to acquire the skills for living with a disability as well as for people who use feeding tubes or breathing assistance, i.e. life support in their daily lives. People who have cognitive disabilities or presumed cognitive disabilities are also subject to such pressures. We are far from a level playing field where people can freely make treatment choices. We urge CMS to do all that it can to ensure that individuals and families can make informed decisions about whether or not to withdraw life sustaining treatment prior to and independent of any discussions with organ procurement organizations. Many people are quite willing to be donors should circumstances permit it, but such willingness should not be exploited to influence treatment decisions.

Please work with other offices within HHS and with the DOJ to maintain an organ transplant system that all of us can trust to value our lives equally.

Please contact us with any questions you may have.  Thank you for your time and attention.

Sincerely,

Diane Coleman, JD, President/CEO

Lisa Blumberg, JD, Consultant

FOOTNOTES

  1. https://ncd.gov/sites/default/files/NCD_Organ_Transplant_508.pdf

  2. https://www.healthaffairs.org/doi/abs/10.1377/hlthaff.2020.01452

  3. https://news.harvard.edu/gazette/story/2021/02/survey-finds-doctors-have-negative-perception-of-patients-with-disability/

  4. https://www.rubio.senate.gov/public/_cache/files/11928d05-eddb-46d2-b71e-1ffbc20f594d/FA2109CE679FA4075BF3C26200B25C3D.kin21821.pdf

  5. https://ncd.gov/sites/default/files/NCD_Organ_Transplant_508.pdf 14-15

  6. page 3

  7. https://www.nytimes.com/2008/02/27/us/27transplant.html , https://www.nytimes.com/2008/12/19/health/19doctor.html