[Filed today, with credit to attorney Lisa Blumberg; deadline Feb. 1; short or long comments can be filed here.]
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.
While HB140, a bill looking to legalize assisted suicide for certain individuals in Delaware, is set to be discussed in the House Health and Human Development Committee Wednesday, local and national groups representing individuals with disabilities held a virtual press conference Tuesday to discuss why they’re not interested in the “help” they see as inequitable legislation.
“You’ve got groups of people who are sectioned off,” said Matt Valliere, Executive Director for the Patients Rights Action Fund. “Physicians can help these people die, but not those people, and that group becomes larger and larger, but the fact of the matter is, for public policy that makes suicide a medical treatment for a subset of people, always, it’s a subset of people with disabilities. That’s where the the public policy becomes the defining moment in that group.”
Many speaking out against the bill ahead of the committee hearing said the creation of a pathway to inexpensive assisted suicide for persons facing terminal diagnoses or life-altering disabilities doesn’t take into account that the cost of such services versus the cost of healthcare can create an unnecessary and unfair viewpoint that, in order to “ease the burden” one might hypothetically create in such a situation, it might be reinforcing the idea that suicide would be the correct or right choice.
“We need to support people where they are, not give them the option of dying, but give them the option of living. Give them the option of support. Help them to live their best lives,” said Terri Hancharick, chairperson for the State Council for Persons with Disabilities. “I’m just very surprised at the timing of this. Instead of institutionalizing death for the disability community, Delaware legislators should focus on ensuring that everyone has the care and resources that they need. We have to continue to advocate for reliable, competent care in the community. We have to include to advocate for full inclusion of people with disabilities.”
There’s a concern that creating cheap alternatives to life-extending care can feed into a growing culture of suicide acceptance, where suicide ideation can overtake the desire to live a full, worthwhile life, even when the latter is possible. Several speakers referred to it as a “contagion.”
“It just doesn’t make any sense to have that law in place, because it’s too easy. It leads to suicide contagion when such laws take the stigma off of having assistance, or even doing it yourself,” said Daniese McMullin Powell, an ADAPT Delaware organizer. “It makes it more common. And it makes other people that aren’t even terminal have the idea that it’s okay to go ahead with that, and that it’s just a societal thing, and there’s ‘nothing wrong with it.'”
Stephanie Packer, a mother of four from California, said her terminal diagnosis led to her insurance recommending to her lethal drugs to perform assisted suicide would be much cheaper than life-saving treatments. While they eventually agreed to cover her treatment, she echoed McMullin Powell’s concerns that governments shouldn’t be setting such black-and-white legislation when that’s not how businesses like health insurance work, and are instead focused on financial savings.
“It’s this uncontrollable freight train that’s about to slam into a wall…There’s no way to stop this once it starts, unless we do it now. And that’s part of the urgency,” Packer said. “That suicide contagion just grows and grows and grows…Right now, we are at such a high risk of being completely transformed into a culture of death, a culture that accepts death as just something that we can be flippant about. And it devalues all of us. Of course, I’m speaking specifically about patients who are chronically or terminally ill, but realistically, it devalues every single life and we are worth so much more than what these bills give us and show us.”
The public can attend the House Health and Human Development Committee meeting on Wednesday, January 19, 2022, to listen in on discussion or provide their own comment on the issue by registering at this link.
[Written testimony may be submitted through Jan. 20.]
And more coverage, quoting Daniese McMullin-Powell:
“HB 140 has a lot of ‘whereases’ such as ‘Whereas the integration of medical aid in dying into the standard of end-of-life care has improved the quality of services by providing an additional palliative care option to terminally ill individuals,’” said Daniese McMullin Powell, Delaware disability rights activist.
“Really? There is nothing to prevent insurance denials for life-saving or improving health care,” she said. “There is no improvement. Palliative care is to relieve symptoms. Relieving symptoms doesn’t mean you have to die to relieve them. There are plenty of other options to take care of pain.”
McMullin Powell joined other people who have lined up to block the aid-in-dying bill being presented for at least the fourth time in the last five years in the Delaware legislature.
… “There’s no oversight. No investigation if anything seems questionable,” McMullin Powell said. “There is a greater risk to elderly and disability. Too often, the right to die becomes the duty to die.”
According to HB 140, End of Life Options Bill, RX for death is described as palliative care that should be standardized for end-of-life care? I cannot ever agree that purposefully dying improves the delivery of any quality of services.
Delaware’s House Bill 140 states.
“WHEREAS, the integration of medical aid in dying into the standard for end of life care has improved the quality of services by providing an additional palliative care option to terminally ill individuals.”
There is nothing to prevent insurance denials for life saving or improving healthcare. Nothing to ensure ill people can get home care services.
The bill uses a lot of “should nots” and not many “shall nots” when it comes to protecting the requester or holding anyone accountable. There is no oversight after the prescription is given. There is no investigation if anything seems questionable. No requirement for witnesses to the administration of the drugs.
HB 140 mentions a person may be referred for a psychological eval to determine capacity to make decisions. it does not mention determining if depression or other psychological conditions may influence that decision. Very few (less than 4%) are ever referred to a psychologist.
Safeguards are not reliable and are ineffective. Authorities in Oregon rely on self-reporting by doctors and do nothing on verifying data. Authorities can’t assess non-compliance.
Opponents, often mention “the slippery slope” this intro of HB 140 has already taken steps to expand the opportunity for more prescribers by giving authority to Advance Practice RNs to diagnose and to RX lethal substances to those they give a prognosis of terminal within 6 months.
There is a greater risk to elderly and disabled people.
Although this bill says we “should not” (notshall not) be coerced pressured or compelled to take the drugs to end life, too often the “right to die” becomes a “duty to die”.
The 5 main reasons listed for taking part in this (according to the Oregon report) are (1) Loss of autonomy 91% (2) Less able to engage in activities 90%. (3)Loss of dignity 74%. (4) Burden on others 47%. (5) Losing control of body functions 43%
I have been subject to all those reasons except 3 and 4. I find my dignity in my life, and I know burdens are often shared with each other.
I am 76 years old. Many of my friends and acquaintances with disabilities have been lost to Covid-19 because of early rationing of treatment while preferring younger, without disabilities who are determined to be more valuable than those of us with disabilities. Many of us have become closer to terminal for lack of even standard, typical treatments and care during this pandemic. Managed care is a, for profit business, and they don’t make money on expensive care.
According to the Oregon reported reasons, every person receiving a lethal prescription is disabled.
Pain is not in the top 5 reasons. However, pain or fear of it seems to be used as the most prominent talking point for this legislation. Focus should be on assuring the medical profession advances pain management, home care, extending and supporting a better life.
Nonterminal people receive lethal prescriptions in Oregon according to their own reports. Some live past the 6-month prognosis, a few of them for years longer (one well over 1000 days) we will never know about some of those that took the drugs early.
Do not make HB 140 the law in Delaware. dying earlier is not worth a single mistake. Not worth a single unnecessary death.
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.
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.
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.
