NDY Urges AMA To Affirm Longstanding Opposition to Legalizing Assisted Suicide

aid in dying, AMA, AMA Council on Ethical and Judicial Affairs, assisted suicide, Our News & Commentary Blog, , , ,

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

"death with dignity", aid in dying, Anita Cameron, assisted suicide, hawaii, Our News & Commentary Blog, Testimony, ,

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

"death with dignity", Affordable Care Act, aid in dying, assisted suicide, Our News & Commentary Blog, , ,

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

National Day of Mourning March 1st

Autistic Self-Advocacy Network, Day of Mourning, Our News & Commentary Blog,

Thanks to our colleagues at the Autistic Self Advocacy for their leadership in creating and annually organizing a National Day of Mourning in cities across the country on March 1st, in the honor and memory of people with disabilities killed by family members and caregivers. It is not to late to sign up as a site and use ASAN’s helpful toolkit to create a local event. Below is ASAN’s announcement.

***

In the past five years, over four hundred people with disabilities have been murdered by their parents, relatives or caregivers.

On Wednesday, March 1st, the disability community will gather across the nation to remember these disabled victims of filicide – disabled people murdered by their family members or caregivers.

In the year since our last vigil, our community has lost 100 more people to filicide. These are just the cases that we are aware of – since we began monitoring this issue, we learn about more murders every week. We read the victims’ names, see their photographs, and gather what information we can about their lives. The criminal justice system has continued to give lighter sentences to parents and caregivers who murder disabled children. And we have seen both news and entertainment media continue to portray these murders in a sympathetic light.

We hold the Day of Mourning vigils to draw attention to these injustices, to commemorate the lives of victims, and demand justice and equal protection under the law for all people with disabilities. This would not be possible without the vital work of our volunteer site coordinators. Click here to learn about what site coordinators do, or to sign up to lead a vigil.

For the last six years, ASAN, ADAPT, Not Dead Yet, the National Council on Independent Living, the Disability Rights Education & Defense Fund, the American Association of People with Disabilities, and other disability rights organizations have come together to send a clear message that disability is not a justification for violence. We’ll be at our local vigils on Wednesday, March 1st – and we hope to see you there.

If you’re interested in leading a vigil in your area, please sign up to be a Day of Mourning vigil site coordinator.

Carrie Ann Lucas Public Radio Interview About Jerika Bolen – A Captioned Video

better dead than disabled, Carrie Ann Lucas, Jerika Bolen, Our News & Commentary Blog, suicide prevention, Wisconsin, ,

[Thanks to John Kelly and Frankie Symonds for creating this video. Carrie is among those who received recognition from New Mobility for trying to save Jerika’s life.]

Last July, news broke that Appleton, Wisconsin 14-year-old Jerika Bolen had decided to die because of the extreme pain she was in, pain attributed to her genetic condition, spinal muscular atrophy (SMA) type II.

While the media celebrated her suicidality as “brave” and “inspirational” in the face of tragic, “wheelchair-bound” suffering, disability rights advocates with SMA and similar neurological conditions tried working behind the scenes to get Jerika the pain relief and mental health attention any suicidal teenager deserves.

Community and national attention helped the family raise $36,000 for a pre-suicide prom specifically for Jerika, who was crowned prom Queen.

Her pediatric palliative care specialist, Dr Kari Stampfli, violated a tenet of palliation (there are always new treatments to try) by publicly giving up on her .

On August 4, Not Dead Yet joined Disabled Parents Rights, the Autistic Self Advocacy Network and NMD United in sending a letter to the Wisconsin Department of Children and Families asking it to intervene in the case. The Wisconsin protection and advocacy organization Disability Rights Wisconsin sent a similar letter.

The letter questioned the quality of her medical care, evidenced by the 30-38 surgeries she had reportedly had, her extreme pain and improper pain management – pain does not typically accompany SMA. The groups wrote that the approval that greeted Jerika’s decision to die was based on Jerika’s use of a wheelchair and part time breathing assistance. Any other suicidal teenager would receive suicide prevention services.

Our intervention on behalf of a teenager’s right to effective pain management and mental health services was attacked in the press.

Jerika entered hospice as planned in early December, dying 18 days later, most likely by sedation coupled with starvation and dehydration.

We mourned her death, writing:

Our grief at the tragedy of her loss is exponentially magnified by the certainty that the story told in the press will inspire others with disabilities and their parents to repeat this tragedy.

Those of us with disabilities dream of equality and justice. Jerika Bolen deserved better quality health care and the same suicide prevention that a non-disabled teen would receive. We ask one last question: What might have happened if Jerika’s request for a “last dance” had been met with overwhelming public and media encouragement to live instead of a massive thumb on the scale in support of her death?

On October 6, disability rights lawyer and executive director of Disabled Parents Rights, Carrie Ann Lucas, went on the Joy Cardin show to discuss the Jerika Bolen case.

Carrie Ann mounts a comprehensive case on behalf of Jerika’s right to suicide prevention services and to quality medical care.

People with spinal muscular atrophy type II live into late adulthood. Some people live into their sixties and seventies and beyond, but most people live into at least late adulthood. So this is not something where she was imminently dying. This was not a child who was facing death.

Adults have the right to self-determination. The issue is, we don’t let other children die by suicide, any other child that did not have a disability. But, because of her disability, she was allowed to enter hospice to cause her death. We would not allow that to happen to any other child. But we should not be saying it’s okay for a disabled teenager to die, just because people who don’t have disabilities imagine what a poor quality of life she must have. Because they can’t imagine in their own heads what it would be like to live with a disability, even when in fact those of us living with a disability, those of us with the same disability, are telling you something very different. We are the experts in this, not an uninformed and biased public. There was something else going on in Jerika’s situation, but no one gave her the suicide prevention and other support she needed, and she’s gone.

We hope that people will listen to the disability community, and stop this tragedy from being repeated.