Oregon State Assisted Suicide Reports Substantiate Critics’ Concerns

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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 the 18 reported years. These claims are demonstrably false.

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. 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.

The focus of the discussion below is the Oregon Health Division data. 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.

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. 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 in 2015, 7%, or 68 individuals, had conditions classified as “other”. 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, 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.)

The witnesses on the request form 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 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.

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 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. Well-informed legislators on both sides of the aisle should vote against assisted suicide bills.

Statement On Mourning the Death of Jerika Bolen

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Today disability advocates mourn the death of Jerika Bolen, a 14-year-old black, gay teen with spinal muscular atrophy type II (SMA), who died in hospice after requesting help to end her life. Earlier this summer, a call for donations to support her dream of a “last dance” prom in her honor focused national media attention on her request to die, which was characterized in the media as “brave” and “inspirational.”

SMA Type II is not a condition that is typically fatal in children and teens. In fact, while some people with SMA die in younger adulthood due to respiratory complications, people with type SMA Type II often live into their 60s and beyond.  Certainly, SMA would not result in the death of a fourteen-year-old who is receiving appropriate medical care. Our experience as disability rights advocates, many of whom have SMA and similar neuromuscular conditions, is that people with Type II SMA and the level of function that Jerika had as a teenager live long into adulthood.

While some media have attacked disability advocates who called for an investigation of the extremely questionable medical care provided to Jerika, it would appear that no authorities felt it necessary to obtain answers to the many questions the reported facts raise. In the midst of our shock, grief and despair at a system that would so callously throw away the life of a beautiful disabled girl, we have asked, and continue to ask, those questions.

Regarding physical pain . . .

What was the cause of Jerika’s reported extreme physical pain? Contrary to media misinformation, pain is not characteristic of SMA Type II, so what caused her pain?

Did Jerika have any competent doctors who specialized in SMA Type II or neuromuscular disabilities?

What explains the reported 30-38 surgeries that Jerika experienced between ages 8 and 14? This number of surgeries is highly unusual for people with SMA Type II. Were these surgeries the source of her pain?

Were pain relief experts ever consulted to address Jerika’s pain? Why did she wait to take medication until her pain was at a level 8 or higher on a scale of 10, while pain management physicians advise taking medication much earlier, “nipping it in the bud” to prevent pain from reaching that level?

Regarding depression and emotional pain . . .

Given the well established ways that suicidal ideation in teens is addressed to prevent tragedy, what forms of counseling or support were enlisted to address Jerika’s desire to die?

Was any qualified professional trained in teen suicide prevention brought in to counsel Jerika? Were any professionals working with Jerika aware of studies finding that quality of life is not correlated with physical impairment or use of non-invasive breathing support?

From whom did Jerika get the idea that she could go into hospice and get assistance to end her life? She had reportedly spoken of this off and on for a few years. What were the motivations of any adult who gave such an idea to a child?

Was any qualified professional with a similar disability, someone familiar with the emotional issues facing a black, disabled, gay teen, brought in to counsel Jerika?

Regarding the systemic medical and legal issues . . .

Why do Wisconsin governmental authorities allow children with non-terminal disabilities to have their lives ended based on adult decisions to withhold medical care, while this is not permitted for non-disabled children?

What were the qualifications of the doctor who ordered hospice for Jerika? Was it the same doctor or facility that conducted the extreme number of surgeries?

Why would a hospice provider participate in ending the life of a child who is not terminally ill? Besides discontinuing Jerika’s nightly bipap breathing support, what additional steps resulted in her death after only 18 days from her scheduled entry into hospice?

Disability advocates who mourn Jerika’s untimely death would like these questions to be answered, but we’ve seen the media frenzy in almost exclusively one-sided applause for her suicide, no questions asked. 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?

Amy Hasbrouck: HBO VICE “Right To Die” Documentary Is Propaganda, Not Journalism

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[Editor’s Note: This excellent article by Amy Hasbrouck, the executive director of Toujours Vivant/Not Dead Yet Canada, was originally published by the Euthanasia Prevention Coalition here.]

“Right to Die debate” – another propaganda film promoting assisted suicide.

HBO’s Vice documentary series presented “Right to Die,” a 27-minute “debate” on assisted suicide.

To call this a debate is ridiculous. Less than two minutes was dedicated to opposition to assisted suicide. The segment implied that the opposition in the U.S. was led by the Catholic church, and didn’t even mention or interview disability rights organizations that oppose assisted suicide. The corresponded did admit that there is “some evidence” of a slippery slope in the Belgium and the Netherlands.

The documentary, narrated by correspondent Vikram Gandhi, is centred around the euthanasia death of Antoinette Westerink, a Dutch woman with a “personality disorder” whose euthanasia is shown during the segment. Ms. Westerink sees herself as preparing to emerge from a chrysalis, and having no regrets about her impending death. However, her adult son and daughter are upset that the psychiatrist who approved her euthanasia did so after only three meetings, and did not consult her family before making the determination.

During the segment, Vikram Gandhi speaks to Christina Symonds, a person who is as yet minimally affected with ALS. As he introduces her, images of “Late stage ALS ‘patients’” are shown; a person in a hoyer lift, and others in hospital beds using external breathing assistance.

Symonds shows her fear of becoming disabled when she says: “The only thing you’ll be able to move in the end are your eyeballs. I don’t want to go through that horror. And I certainly don’t want to put my kids through that.”

Her husband Teddy Symonds adds: “She doesn’t want to sit back and be taken care of and be wiped and be fed. She wants to go ‘I’m done.’ It’s not getting any better. Whatever was gonna work is not working anymore and that’s where I draw the line.’ And if you have that ability, it’s power.”

Ned Delojsi from the California Catholic Conference is quoted twice, for a total of just over a minute (46 seconds then 20 seconds). Though he devotes most of his time speaking about the danger for vulnerable persons, his remarks about faith are used first, to discredit him to the secular audience. Later, Theo Boer raises questions about the dramatic increase in euthanasia in the Netherlands during his 40-second on-screen appearance.

Nelojsi’s interview is followed by a quote from Christy O’Donnell, a person with cancer who uses a wheelchair and states “When they are sitting in this chair with a stage IV diagnosis and a child that they’re leaving or a husband that they love, then they can make their own decision.” Unfortunately the producers did not speak to those disabled people who are “sitting in this chair” yet still oppose assisted suicide.

Howard Glick, another person with a degenerative disease (frontal temporal degeneration) also expresses his fears over becoming disabled. “What do I want to do, waste away in a wheelchair? Not even recognizing my children? Never mind the cost involved.”

As in many similar documentaries, the producers had their minds made up on the issue before they began to explore it, and so neglected to portray the arguments against assisted suicide and euthanasia fairly. They played upon public fears of becoming disabled, using the term “dignity” as the opposite of disability, and implying that the only way to retain control in one’s life was to have assisted death.

In addition, the producers made it clear that usual methods of suicide were unacceptable substitutes for the help of a medical practitioner, nor did they describe what happens when complications arise during assisted suicides and euthanasia. Instead, they promoted the suicide kits marketed by Derek Humphry. The segment also downplayed the objections of doctors who oppose the practice as a violation of the principles of palliative care, lumping them in with the religious community.

This is an excellent piece of propaganda, but not journalism.

 

Disability Advocates Push for Better Healthcare for Jerika Bolen

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Many have heard of 14-year-old Jerika Bolen’s plans to die, which received extensive news coverage over the summer. Disability advocates may have wondered why the story didn’t appear in the NDY blog sooner. The short answer is that, behind the scenes, we were trying to push for better health care, especially expert quality pain relief to address the primary reason Jerika stated for wanting to die. We were trying to respond to her comments about her life.

On Sunday, Jerika was scheduled to go into hospice, even though her disability is no where near the “terminal” stages. For twelve hours a day, at night, she uses breathing support, a biPAP, similar to the more common CPAP, with a breathing mask. (I use one about 20 hours a day for a similar neuromuscular condition.) As Carrie Lucas of Disabled Parents Rights wrote in our letter to the Wisconsin Department of Children and Families:

This non-terminally ill child is reportedly going to be placed into hospice sometime in August. While Ms. Bolen maintains optimal respiratory health using a bipap machine with a mask to assist breathing at night, she is able to breathe to sustain life without that device for a very long period of time daily. The only way her breathing will stop is to discontinue any form of breathing support, including her bipap, while administering a sufficient dose of morphine to suppress her breathing – in short euthanasia. If this plan goes forward, it goes beyond the allowed “double effect” of making a hospice patient comfortable even if it may also shorten life. Ms. Bolen is not terminal and being comforted through the dying process, but rather her death could only be induced with medication.

Many of those who joined in our letter are adults with Jerika’s specific diagnosis, SMA Type II, leaders in NMD United. Many of us remember middle school as a difficult time, combining the usual teenage issues with the experience of a highly stigmatized identity in our image conscious society.

And we have big questions about her reported 38 surgeries and high levels of pain, questions about the competence of her doctors. So we urged the state agency to intervene and secure better quality health care and pain relief for Jerika, as well as disability competent mental health counseling.

Based on news coverage of our August 4th letter, Disability groups seek to intervene in teen’s plan to die, the Wisconsin protection and advocacy organization reportedly made the same request.

But as of today, we don’t know whether Jerika and her mother decided to continue with the plan to enter hospice, we don’t know whether the Wisconsin Department of Children and Families decided to intervene and secure better health care for Jerika, and we don’t know whether the hospice provider is willing to deliver enough medication over a sufficient period of time to produce total respiratory failure in a 14-year-old disabled girl who only uses non-invasive breathing support 12 hours a night and is not really terminally ill.

Face To Face: Challenging the “Better Dead Than Disabled” Message

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Two video projects led by people with disabilities, one in the U.S. and one in Canada, are challenging the mainstream message that it’s better to be dead than disabled. We all know that personal stories are often the most effective forms of communication, and that’s exactly what these projects offer in face-to-face communication.

The U.S. video project is called “Live On!” and is led by Dominick Evans through the Center for Disability Rights. Our readers were first introduced to Live On! through its video produced in response to the Me Before You film and disability rights protests. While the initial video included many faces, subsequent pieces will be short 3-4 minute takes by an individual with a disability.

If you would like to learn more about the project or consider submitting a video, here’s a message from Dominick with what you should know:

The #LiveOn project is a way to send the message that disabled lives are worth living, and for disabled people to be proud of their disability. The #LiveOn project is loosely based upon the It Gets Better campaign, which sent the message to LGBTQIA individuals that life is worth living, and it is okay and important to be proud of who you are. We would like to give a similar message to people with disabilities.

Our target audience is anyone with an acquired disability or progressive disability, individuals with mental health disabilities and/or suicidal ideation, young people who may be angry about their disabilities thanks to bullying or abuse, and anyone with a disability who may be struggling, depressed, dealing with internalized ableism, or who might be thinking about giving up on life. Disabled people do not often receive suicide prevention when they show signs of wanting to give up or have suicidal thoughts. With very little disability representation that is visible and positive, living life with a disability can often seem daunting and lonely.

So, you may be wondering how you can help. We are asking anyone with a disability to make a video for the #LiveOn project. The videos are directed at our target audience, and will feature disabled individuals explaining how times can be rough, but things can and will improve. Life with a disability is not only worth living, but it can be quite fulfilling. Feel free to talk about a difficult time in your life, and how you were able to move past that, and don’t forget to discuss how much disability pride you have, and how being disabled is an important part of your identity.

Here are the video guidelines:

  • Videos should be filmed in vlog style. This means you talk directly to the camera as though you are talking to the target audience.
  • Keep videos around 3 minutes in length.
  • Introduce yourself and say what your disability is at the beginning of your video.
  • Add in the #LiveOn message by trying to work in the expression “Live on” near the end of the video.

DO NOT UPLOAD YOUR VIDEOS TO YOUTUBE. Put the videos in Dropbox or use Google Drive to send the videos in .mov or .mp4 format.

Please send all videos to: liveonprojectcdr@gmail.com

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The Canadian Project is well underway already, led by Catherine Frazee and others. As reported in New Mobility, Project Value Asserts Disability Is Not Worse Than Death:

A group of Canadians are out to testify that there’s so much more to life with a disability than one of “suffering that could last decades,” as recent media coverage would have you believe.

Project Value is founded by five prominent members of Canada’s disability community meant to counter act the narrative that disability is a fate worse than death through a series of videos by people with disabilities testifying to how truly fulfilling and exquisitely varied their lives are.

“There is more, much much more, to our lives than misery, helplessness, and pain. We want to counteract the dangerous effects of those stereotypes and the prejudice that they fuel, by projecting the energy, vitality, resilience and contribution of disabled people’s lives,” says co-founder Catherine Frazee, a 62-year-old professor emerita and professor of distinction in the School of Disability Studies at Ryerson University in Toronto who has spinal muscular atrophy type 2. . . .

In addition to the New Mobility article, Project Value has received mainstream press coverage here and here, among others. A number of very powerful and moving videos are already posted, with more to come in this important effort.