Disability Advocate Sheryl Grossman Gives Moving Testimony Against Maryland Assisted Suicide Bill

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Statement to the House Health ad Government Operations and Judiciary Committees
Re: House Bill 370—“End of Life Options Act”
Thursday, February 16, 2017

OPPOSE

Madam Chair, Delegates, and fellow citizens, I am here today to oppose House Bill 370, the “End of Life Options Act”.

My name is Sheryl Grossman. I have a very rare, genetic condition called Bloom’s Syndrome, so rare in fact that I am the 72nd case ever recorded worldwide, historywide.

Back in the olden days when I was diagnosed Dr’s didn’t know much and they advised my parents that I wouldn’t live past 2, maybe 4 (it got longer every yr—I’m 41 now and they just throw up their hands and shake their heads). My parents were told I wouldn’t walk, talk, or amount to much. They were told they should just put me away as they were young and could have other children. Clearly, Dr.’s don’t know everything.

This bill before you depends on Dr.’s stating that someone has 6 months, or less to live, a prognosis that pretty much everyone agrees is impossibly hard to accurately predict. As a disabled person, this bill scares me even more because I know the societal barriers (stigma and discrimination) that we face. Our lives are often seen as being worse quality of life and less worthy than others. Dr.’s whole profession sees us as broken and something to be fixed, but often we can’t be (and don’t want to) be fixed.

Why does this bill scare me given this statement, let me give you a personal example. Bloom’s Syndrome results in my being prone to multiple cancers. During my 7th cancer, a stage IV lymphoma that had metastasized to form a solid tumour in my liver, the head of Johns Hopkins Cancer Psychiatric Department entered my room during treatment, when I was barely conscious, barely able to speak. She said, “you know, you don’t have to do this anymore. You have been through so much. You can stop at any time you know, it is ok. We can simply turn off the machines, or we can increase your pain meds—you’re 37 lbs, it won’t take long”. I gave the last of my conscious energy to screaming NO and trying to get her out of my room. On her way out she said “I don’t understand why you want to live like this, in and out of hospitals for years.”

The answer is because I love my life. Sure, there have been plenty of times I have been bent over an emesis bowl when I didn’t feel that way, but this is my life and I am worthy of it! It has been 3 ½ years and 2 cancers and 1 chemotherapy regimen since then and here I am before you, a happy 41 year old.

Ladies and gentlemen, I fear that if this law were on the books then, I wouldn’t still be here today. It is far too easy to coerce someone into thinking themselves a burden to medical care staff, or family members. It is far too easy to make us think that our care is costing too much and draining those around us. This bill does not provide for a mental health evaluation before the prescription of lethal medications which takes away the only protection against this thinking.

When others in society say they want to harm themselves, crisis intervention services are provided. As a former certified crisis worker, I can tell you that many call back months and even years later to thank us for the intervention.

Why should people with disabilities and medical conditions with less than 6 months to live be treated any differently? I fear that even with a psychiatric evaluation, if one gets a psychiatrist like I did, who doesn’t believe in the quality of our lives, people will still be encouraged to choose an early exit. We should be providing long term care services to help these individuals and their support networks, not methods to die. Please, vote no on House Bill 370.

This concludes my oral testimony. I am providing a longer written testimony with additional points. I am available for any questions you may have. Thank you for this opportunity.

Press Release: Eleven Disability Organizations File Friend of the Court Brief in Appeal of New York Assisted Suicide Case

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Contacts:
Diane Coleman 708-420-0539 dcoleman@notdeadyet.org
Adam Prizio 518-320-7100 (office) 603-518-4910 (cell) aprizio@cdrnys.org 

On February 15, 2017, Not Dead Yet and ten other national and New York state disability rights organizations have filed a friend-of-the-court brief in the New York Court of Appeals in support of rulings by the Supreme Court and Appellate Division, both of which dismissed a case seeking to legalize physician assisted suicide.

Joining in the Not Dead Yet brief are ADAPT, the Autistic Self Advocacy Network, the Center for Disability Rights, the Disability Rights Center, the Disability Rights Education & Defense Fund, the National Council on Independent Living, the New York Association on Independent Living, Regional Center for Independent Living and United Spinal Association, collectively referred to as the “Disability Rights Amici.” New York attorney Adam Prizio handled the filing on behalf of the disability organizations.

The case is Myers v. Schneiderman (APL-2016-00129) and the disability brief supports the New York State Attorney General who is also seeking to uphold the ruling.

“Our basic position is that when some people get suicide prevention while other people get suicide assistance, and the difference is the person’s age, disability or health status, that’s unlawful discrimination,” said Prizio. “It’s a problem that certain people are being told that others not only agree with their suicide, which is bad enough, but will even help them carry it out. It’s a deadly form of discrimination and, as our brief says, it violates the Americans with Disabilities Act.”

Each of the Disability Rights Amici brings a specific perspective to the policy debate about assisted suicide. For example, the primary mission of ADAPT is to ensure that seniors and people with disabilities are not forced into nursing facilities, but have the choice to receive consumer directed long term care services in their own home. “If the only alternative to death that those in power offer people who require assistance is segregation in nursing facilities, then it makes no sense to talk about assisted suicide as a ‘choice'”, said Bruce Darling, an ADAPT organizer based in Rochester, New York.

Many people with disabilities acquire them as a result of accidents or trauma, and their prognosis is often uncertain in the early stages. “If assisted suicide had been legal in the past, even if it were supposedly only for those with ‘terminal’ conditions, many of us would not be here today,” said Kelly Buckland, executive director of the National Council on Independent Living. “I might not be here today, and I’m grateful that assisted suicide was not legal back then, and I’m committed to keeping it that way.”

The brief also expresses concerns about the context of health care cost-cutting in which assisted suicide is being advocated. “In an aging society where elder abuse is a growing problem, elders too often face economic or other pressures to get out of the way, whether those pressures come from the health care system or, sadly, from family,” said Diane Coleman, president/CEO of Not Dead Yet.

NDY Urges AMA To Affirm Longstanding Opposition to Legalizing Assisted Suicide

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On November 11, 2016, NDY sent a letter to the AMA, the first of two submissions urging the AMA through its Council on Ethical and Judicial Affairs to re-affirm its position opposing legalization of assisted suicide.

During the twelve years that NDY was based in Chicago, when we knew of motions being made to overturn this longstanding policy, several of us would go down to the hotel used for the annual AMA conference and meeting to distribute a boldly colored leaflet about our reasons for opposing such a dangerous change in policy.

Yesterday I decided to send a supplemental message to the AMA. In recent years, a few state medical societies have gone neutral on the issue. Among other reasons, they seem to be buying the unsupportable claim that there have been no problems in Oregon. As I and many others have tried to convey, there is much evidence to back up our concerns, including the Oregon state reports themselves. My supplemental message to the AMA follows below.

Supplemental Submission to the American Medical Association
Council on Ethical and Judicial Affairs
By Diane Coleman, JD, President/CEO Not Dead Yet
February 14, 2017

One of the most frequently repeated claims by proponents of assisted suicide laws is that there is “no evidence or data” to support any claim that these laws are subject to abuse, and that there has not been “a single documented case of abuse or misuse” in Oregon during the 18 reported years. These claims are demonstrably false. Although SB1129 is actually a euthanasia bill, as explained later below, an examination of the Oregon myth is still relevant and essential to the Committee’s deliberations.

Regarding documented cases, please refer to a compilation of individual cases and source materials pulled together by the Disability Rights Education and Defense Fund entitled Oregon and Washington State Abuses and Complications.[1] For an in-depth analysis of several cases by Dr. Herbert Hendin and Dr. Kathleen Foley, please read Physician-Assisted Suicide in Oregon: A Medical Perspective.[2]

The focus of the discussion below is the Oregon Health Division data.[3] These reports are based on forms filed with the state by the physicians who prescribe lethal doses and the pharmacies that dispense the drugs. As the early state reports admitted:

“As best we could determine, all participating physicians complied with the provisions of the Act. . . . Under reporting and noncompliance is thus difficult to assess because of possible repercussions for noncompliant physicians reporting to the division.”

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 case.[4] Thus, all of the state reported data is a statistical summary of self-reports submitted by physicians who prescribe lethal drugs, nothing more.

Nevertheless, contrary to popular belief and despite these extreme limitations, the Oregon state reports substantiate some of the problems and concerns raised by opponents of assisted suicide bills.

Non-Terminal Disabled Individuals Are Receiving Lethal Prescription In Oregon

The Oregon Health Division assisted suicide reports show that non-terminal people receive lethal prescriptions every year.

The prescribing physicians’ reports to the state include the time between the request for assisted suicide and death for each person. However, the online state reports do not reveal how many people outlived the 180-day prediction. Instead, the reports give that year’s median and range of the number of days between the request for a lethal prescription and death. This is on page 7 of the 2015 annual report.[5] In 2015, at least one person lived 517 days; across all years, the longest reported duration between the request for assisted suicide and death was 1009 days. In every year except the first year, the reported upper range is significantly longer than 180 days.

The definition of “terminal” in the statute only requires that the doctor predict that the person will die within six months. There is no requirement that the doctor consider the likely impact of medical treatment in terms of survival, since people have the right to refuse treatment. Unfortunately, while terminal predictions of some conditions, such as some cancers, are fairly well established, this is far less true six months out, as the bill provides, rather than one or two months before death, and is even less true for other diseases. Add the fact that many conditions will or may become terminal if certain medications or routine treatments are discontinued – e.g. insulin, blood thinners, pacemaker, CPAP – and “terminal” becomes a very murky concept.

The state report’s footnote about “other” conditions found eligible for assisted suicide has grown over the years, to include:

“. . . benign and uncertain neoplasms, other respiratory diseases, diseases of the nervous system (including multiple sclerosis, Parkinson’s disease and Huntington’s disease), musculoskeletal and connective tissue diseases, cerebrovascular disease, other vascular diseases, diabetes mellitus, gastrointestinal diseases, and liver disease.”

Overall as of 2015, 7%, or 68 individuals across all reported years, had conditions classified as “other”. Another 16% had ALS, chronic respiratory or heart disease, or HIV/AIDS. In addition, it should be noted that the attending physician who determines terminal status and prescribes lethal drugs is not required to be an expert in the disease condition involved, nor is there any information about physician specialties in the state reports.

The Only Certifiers of Non-Coercion And Capability Need Not Know the Person

Four people are required to certify that the person is not being coerced to sign the assisted suicide request form, and appears capable: the prescribing doctor, second-opinion doctor, and two witnesses.

In most cases, the prescribing doctor is a doctor referred by assisted suicide proponent organizations. (See, M. Golden, Why Assisted Suicide Must Not Be Legalized,[6] section on “Doctor Shopping” and related citations). The Oregon state reports say that the median duration of the physician patient relationship is 12 weeks. Thus, lack of coercion is not usually determined by a physician with a longstanding relationship with the patient. This is significant in light of well-documented elder abuse-identification and reporting problems among professionals in a society where an estimated one in ten elders is abused, mostly by family and caregivers. (Lachs, et al., New England Journal of Medicine, Elder Abuse.[7])

The witnesses on the request form[8] need not know the person either. One of them may be an heir (which would not be acceptable for witnessing a property will), but neither of them need actually know the person (the form says that if the person is not known to the witness, then the witness can confirm identity by checking the person’s ID).

So neither doctors nor witnesses need know the person well enough to certify that they are not being coerced.

No Evidence of Consent or Self-Administration At Time of Death

In about half the reported cases, the Oregon Health Division reports also state that no health care provider was present at the time of ingestion of the lethal drugs or at the time of death. Footnote six clarifies:

“A procedure revision was made mid‐year in 2010 to standardize reporting on the follow‐up questionnaire.  The new procedure accepts information about time of death and circumstances surrounding death only when the physician or another health care provider is present at the time of death.  This resulted in a larger number of unknowns beginning in 2010.”

While the only specific example mentioned is the “time of death,” other “circumstances surrounding death” include whether the lethal dose was self-administered and consensual at the time of death.

Therefore, although “self administration” is touted as one of the key “safeguards” in the Oregon law, in about half the cases, there is no evidence of consent or self-administration at the time of ingestion of the lethal drugs. If the drugs were, in some cases, administered by others without consent, no one would know. The request form constitutes a virtual blanket of legal immunity covering all participants in the process.

What is perhaps most disturbing is that bills recently introduced in Hawaii and the District of Columbia do not even purport to require self-administration of the lethal dose. Even if an ill person requests a lethal prescription just in case they want it later, whether of their own volition or after being “encouraged” to do so, once the drugs are obtained, the ill person has no protection from unscrupulous family members or caregivers. And without any nominal requirement, or procedural or enforcement provisions related to self-administration, these are not assisted suicide bills, but open and full blown euthanasia bills.

Pain Is Not the Issue, Unaddressed Disability Concerns Are

The top five reasons doctors give for their patients’ assisted suicide requests are not pain or fear of future pain, but psychological issues that are all-too-familiar to the disability community: “loss of autonomy” (92%), “less able to engage in activities” (90%), “loss of dignity” (79%), “losing control of bodily functions” (48%), and “burden on others” (41%).

These reasons for requesting assisted suicide pertain to disability and indicate that over 90% of the reported individuals, possibly as many as 100%, are disabled.

Three of these reasons (loss of autonomy, loss of dignity, feelings of being a burden) could be addressed by consumer-directed in-home long-term care services, but no disclosures about or provision of such services is required. Some of the reported reasons are clearly psycho-social and could be addressed by disability-competent professional and peer counselors, but this is not required either. Moreover, only 5.3% of patients who request assisted suicide were referred for a psychiatric or psychological evaluation, despite studies showing the prevalence of depression in such patients.

Basically, the law operates as though the reasons for suicidal feelings don’t matter, and nothing need be done to address them.

Conclusion

The Oregon assisted suicide data demonstrates that people who were not actually terminal received lethal prescriptions in all 18 reported years except the first, and that there is little or no substantive protection against coercion and abuse. Moreover, reasons for requesting assisted suicide that sound like a “cry for help” with disability-related concerns are apparently ignored. Thus, the data substantiates problems with the implementation of assisted suicide laws and validates the concern that the risks of mistake, coercion and abuse are too great.

Please fully reaffirm the AMA’s opposition to legalizing assisted suicide and active euthanasia.

[1] https://dredf.org/wp-content/uploads/2015/04/Revised-OR-WA-Abuses.pdf

[2] https://dredf.org/wp-content/uploads/2012/08/Hendin-Foley-Michigan-Law-Review.pdf

[3] https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ar-index.aspx

[4] https://dredf.org/wp-content/uploads/2012/08/Oregon-DHS.pdf

[5] https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year18.pdf

[6] https://dredf.org/public-policy/assisted-suicide/why-assisted-suicide-must-not-be-legalized/

[7] http://www.nejm.org/doi/full/10.1056/NEJMra1404688

[8] https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/pt-req.pdf

NDY Director of Minority Outreach Submits Testimony Opposing Hawaii Assisted Suicide Bill SB1129

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Testimony in Opposition to SB 1129
Tuesday, February 14, 2017

Good day. Thank you very much for allowing me to offer my thoughts to you today.

My name is Anita Cameron. I am a 51-year-old with multiple disabilities, two of which are degenerative, and one which will take my life. I am writing in opposition to SB 1129, the Death with Dignity Act.

I will not use the euphemism that is the name of this bill, but will refer to it by exactly what it is – physician assisted suicide. It is very important to be up front, clear and honest about what this is. Couching it in pretty language and hiding the truth is disingenuous at best, and dangerous, at worst.

I am Director of Minority Outreach for Not Dead Yet, a national disability rights organization opposed to physician assisted suicide and euthanasia as deadly forms of discrimination against people with disabilities. I live in Rochester, New York, but work with people of color around the nation.

My primary reason for opposition to this bill and others like it is that disabled BIPOC (Black, Indigenous and People Of Color) are at particular risk of being harmed by it.

Our health care system is inherently racist. Studies show that Blacks and people of color receive inferior medical treatment compared to Whites. We are less likely to receive adequate treatment for heart conditions, diabetes, cancer and chronic pain.

The lives of people with disabilities are largely devalued by doctors and society, in general. The lives of BIPOC with disabilities are even more devalued due to racism and stereotypes about our communities.

As a Black Indigenous Latina, I could never wrap my head around the assisted suicide phenomenon. I thought that it was some odd thing that privileged White people were into. My thoughts were confirmed when I learned that the Pew Research Center recently found that while 54% of Whites supported assisted suicide, 65% of Blacks and Latinos opposed it.

Although assisted suicide requests in Oregon are lower among Blacks and people of color, that doesn’t mean that this won’t change in more diverse areas, especially as healthcare support lessens and assisted suicide becomes more acceptable due to the efforts of groups like Compassion and Choices.

Another reason for my opposition is that doctors would be the gatekeepers of people’s lives (anyone can ask for assisted suicide, but it is the doctor that decides who gets it), and can decide for you about your quality of life.

Further, doctors often make mistakes about whether a person is terminal or not. In June, 2009, while living in Washington state, my mother was determined to be in the final stages of Chronic Obstructive Pulmonary Disease and placed in hospice. Two months later, I was told that her body had begun the process of dying. My mother wanted to go home to Colorado to die, so the arrangements were made. A funny thing happened, though. Once she got there, her health began to improve! Almost eight years later, she is still alive, lives in her own home in the community and is reasonably active.

Because of the racist nature of our health care system and the tendency of doctors to devalue the lives of disabled and people of color, assisted suicide has no place as an option in Hawaii. Please vote NO on SB 1129!

Thank you for your attention.

 

Disability Rights Organizations Issue Statement Opposing Assisted Suicide Laws and Supporting Health Care

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To be released on the occasion of the House Committee markup 
of a Disapproval Resolution on the District of Columbia assisted suicide bill

We, as disability rights organizations, oppose the legalization of assisted suicide, which is a dangerous and harmful public policy.

We also support the continuation of the Affordable Care Act and everything it does to provide good health care to people with disabilities. Any degradation in health care will drive increased demand for assisted suicide.

Our reasons for opposing assisted suicide laws are many. When assisted suicide is legal, it’s the cheapest treatment available—an attractive option in our profit-driven healthcare system. Terminal diagnoses and prognoses are too often wrong, leading people to lose good years of their lives. If one doctor says “no,” people can “doctor shop” for that “yes.” No psychological evaluation is required, putting depressed people in danger.

The highly touted “safeguards” turn out to be truly hollow, with no real enforcement or investigation authority. Assisted suicide is a prescription for abuse: an heir or abusive caregiver can steer someone towards assisted suicide, witness the request, pick up the lethal dose, and in the end, even administer the drug—no witnesses are required at the death, so who would know? Many other pressures exist that can cause people with compromised health to hasten their death. Evidence appears to show that assisted suicide laws also lead to suicide contagion, driving up the general suicide rate. We all already have the right to good pain relief, including palliative sedation if dying in pain.

Because the dangers and harms are so significant, many national disability and medical organizations oppose assisted suicide laws, and many legislatures have repeatedly rejected them.

ADAPT
American Association of People With Disabilities
Association of Programs for Rural Independent Living
Autistic Self Advocacy Network
Disability Rights Center
Disability Rights Education & Defense Fund
National Council on Independent Living
National Organization of Nurses with Disabilities
Not Dead Yet
TASH
United Spinal Association