PUBLIC COMMENT OF DIANE COLEMAN, JD PRESIDENT/CEO OF NOT DEAD YET
TO THE VIRGINIA JOINT COMMISSION ON HEALTH CARE
OPPOSING POLICY OPTION 2
WHICH WOULD RECOMMEND ASSISTED SUICIDE LEGISLATION
October 15, 2018
“If assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes, coercion and abuse. No safeguards have ever been enacted, or even proposed, that can prevent this outcome, which can never be undone.” – Marilyn Golden, Senior Policy Analyst, Disability Rights Education & Defense Fund
I am submitting this comment as a person with an advanced neuromuscular condition who uses breathing support 18-19 hours a day. I have personal experience with misdiagnosis and the uncertainty of terminal predictions by doctors. I am also the founder and President of Not Dead Yet, a national disability rights group, with members in Virginia, that opposes legalization of assisted suicide because it is discriminatory and poses unacceptable dangers to elders and people with disabilities with or without terminal diagnoses.
This comment uses the term “assisted suicide” for several reasons. Merriam Webster defines suicide as “The act or an instance of taking one’s own life voluntarily and intentionally.” As the AMA Council on Ethical and Judicial Affairs stated in its report on the issue this year, “The terms ‘aid in dying’ or ‘death with dignity’ could be used to describe euthanasia or palliative/hospice care at the end of life and this degree of ambiguity is unacceptable for providing ethical guidance.”[1] Assisted suicide proponents understandably prefer to call it “aid in dying” because it polls better. They attempt to justify the name change by asserting that the person is already dying. While some may be dying, others are not. More importantly, with assisted suicide, the cause of death is not a disease, but a lethal overdose.
My Personal Story of Mistaken Prognosis
At the age of six I was diagnosed as having muscular dystrophy and my parents were told that I would die by the age of 12. A few years later I was re-diagnosed with spinal muscular atrophy, a progressive neuromuscular condition which has a longer lifespan. Since age eleven, I have used a motorized wheelchair. Seventeen years ago I began using breathing support at night.
Over the years, the pressures required to sustain my breathing have increased. About three years ago, I went into respiratory failure. Since then I have used breathing support most of the day as well as at night. If I did not use this support, I would go into respiratory failure in a fairly short time.
I am now age 65. Four years ago, the doctors determined that I do not have spinal muscular atrophy. This year, with DNA testing, I was determined to have a different and relatively rare form of muscular dystrophy.
Throughout my adult life, I have worked full time, first as an attorney and then directing nonprofit disability related organizations. Over the last three years since beginning daytime breathing support, I have continued to run Not Dead Yet, which has four staff and numerous volunteers across the country. I have spoken at conferences, published articles, been interviewed by at least 25 press outlets, submitted testimony in legislatures, and provided the day-to-day management an organization requires. I’m not saying this to be “inspirational”, though many nondisabled people have that absurd reaction, but I’m describing my job to make it clear that people like me can and do work, and/or do lots of other worthwhile and enjoyable things, and should not be written off.
How Assisted Suicide Laws Endanger People Like Me
As a severely disabled person who depends on life-sustaining treatment, I would be able to qualify for assisted suicide at any time if I lived where assisted suicide is legal. If I became despondent, for example if I lost my husband or my job, and decided that I wanted to die, I would not be treated the same as a nondisabled and healthy person who despaired over divorce or job loss. Where assisted suicide is legal, I would be treated completely differently due to my condition.
If anyone doubted that someone like me would qualify in a state like Oregon, those doubts were laid to rest in December 2017 when an Oregon Public Health Department official clarified in writing the State’s interpretation of the word “terminal” under the Death With Dignity Act (“DWDA”):
Patients suffering from any disease (not just those that typically qualify one for the DWDA) 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. This is the patient’s decision and the law does not compel them to do otherwise. 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. I think you could also argue that even if the treatment/medication could actually cure the disease, and the patient cannot pay for the treatment, then the disease remains incurable.[2]
It’s now clear that mine is just one example of how expansive the definition of “terminal” really is. Under assisted suicide policies, many people with chronic conditions or disabilities would qualify for assisted suicide and be denied the suicide prevention and other supports that nondisabled people would take for granted if they expressed a desire to die. By denying equal suicide prevention and other supports to people deemed “terminal”, assisted suicide laws are inherently discriminatory against old, ill and disabled people.
In these days of managed care taking over government funded healthcare, where providing expensive care has a tendency to reduce profits, we should at least question whether there is an inherent conflict of interest in having healthcare providers act as the gatekeepers under assisted suicide laws.
The Oregon Assisted Suicide Data Substantiates Key Concerns
I’ve examined the Oregon state assisted suicide reports from a disability rights perspective, and want to share with you what I’ve learned. Although the Commission is looking at the California law as a model, it was based on the Oregon model and the differences between the two laws are not material to the concerns discussed below.
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 there has not been “a single documented case of abuse or misuse” in the 20 reported years. These claims are demonstrably false.
Regarding documented problem 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.[3] For an in-depth analysis of several cases by New York Drs. Herbert Hendin and Kathleen Foley, please read Physician-Assisted Suicide in Oregon: A Medical Perspective.[4]
The focus of the discussion below is the Oregon Public Health Division data.[5] These reports are compiled from self-report 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.[6]
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 Prescriptions In Oregon
The Oregon Public Health Division assisted suicide reports show that non-terminal people have received lethal prescriptions every year except the first.
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 11 of the 2017 annual report.[7] In 2017, at least one person lived 603 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. 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.
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.
Furthermore, as noted above, many conditions will or may become terminal if certain medications or routine treatments are discontinued – e.g. insulin, blood thinners, pacemaker, CPAP, etc. Any person who becomes terminal because they do not receive treatment for any reason, including lack of insurance coverage, even including those caused by cuts in Medicare and Medicaid, would qualify for assisted suicide under an Oregon type law. Each assisted suicide law in the U.S. and virtually all proposals use the same definition of “terminal” as Oregon’s law. This means that Oregon’s expansive interpretation of “terminal” would be given great weight under rules of statutory construction.
The state reports that the list of non-cancer conditions found eligible for assisted suicide has grown over the years, to 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, sclerosis, stenosis, kidney failure, and musculoskeletal systems disorders (pages 10-11).
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, the second-opinion doctor, and two witnesses.
In most cases over the years, the prescribing doctor is a doctor referred by assisted suicide proponent organizations. (See, M. Golden, Why Assisted Suicide Must Not Be Legalized,[8] section on “Doctor Shopping” and related citations). The Oregon state reports say that the median duration of the physician patient relationship was 10 weeks in 2017, and 13 weeks over all years (page 11). 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.[9])
The witnesses on the request form[10] 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 Public 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. Without an independent witness, there is no way to confirm whether the lethal dose was self-administered and consensual. The request for assisted suicide does not prove that the person wanted to go through with it, as shown by the reported decision of many not to do so.
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, including family members who are the most likely perpetrators.
Essentially, proponents of legalizing assisted suicide have taken what is fundamentally an immunity statute and marketed it deceptively as a personal rights statute.
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 and personal care issues that are well understood by the disability community: “loss of autonomy” (91%), “less able to engage in activities” (90%), “loss of dignity” (76%), “losing control of bodily functions” (46%), and “burden on others” (44%) (page 10).
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 (feeling a 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 4.9% 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 20 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 serious problems with the implementation of assisted suicide laws. Moreover, nothing in the even more limited data from other states, including California, addresses or alleviates these concerns and dangers.
For all these reasons, Not Dead Yet urges you to vote no on Policy Option 2 and decline to recommend that an assisted suicide bill be introduced in Virginia. The dangers of mistakes, coercion and abuse are simply too high.
[1] REPORT OF THE COUNCIL ON ETHICAL AND JUDICIAL AFFAIRS 5-A-18, Page 2, https://www.ama-assn.org/sites/default/files/media-browser/public/hod/a18-ceja5.pdf
[2] Stahle, Fabian, Hidden problems with the Oregon assisted suicide law uncovered, https://drive.google.com/file/d/1xOZfLFrvuQcazZfFudEncpzp2b18NrUo/view; Diabetics eligible for physician-assisted suicide in Oregon, state officials say, Jan 11, 2018, https://www.washingtontimes.com/news/2018/jan/11/diabetics-eligible-physician-assisted-suicide-oreg/
[3] https://dredf.org/wp-content/uploads/2015/04/Revised-OR-WA-Abuses.pdf
[4] https://dredf.org/wp-content/uploads/2012/08/Hendin-Foley-Michigan-Law-Review.pdf
[5]http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year20.pdf
[6] https://dredf.org/wp-content/uploads/2012/08/Oregon-DHS.pdf
[7]http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year20.pdf
[8] https://dredf.org/public-policy/assisted-suicide/why-assisted-suicide-must-not-be-legalized/
[9] http://www.nejm.org/doi/full/10.1056/NEJMra1404688
[10]http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/pt-req.pdf