Testimony of Anne Sommers
Chairwoman, Not Dead Yet
In OPPOSITION to B21-38 “The Death with Dignity Act of 2015”
Committee on Judiciary and Public Safety
Council of the District of Columbia
Public Hearing, Room 500
Friday, July 10, 2015, 11:00 AM
Committee Chair Alexander and Council Members Nadeau, Cheh, May, and Grosso:
Thank you for the opportunity to testify before you today regarding B21-38, “The Death with Dignity Act of 2015,” which seeks to legalize assisted suicide in the District of Columbia.
Introduction
My name is Anne Sommers, and I am the Chairwoman of Not Dead Yet, a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill, and disabled people. Not Dead Yet’s opposition is based on universal human rights and principles of equality that apply to everyone, whether disabled or not. Our board as well as our broad base of supporters includes people with a wide variety of disabilities, many of whom have been told by confident and perhaps well-intending doctors at one point or another that they would not live to see another birthday or who have questioned or even lamented their perceptions of our quality of life. And years, if not decades later, we’re not dead yet, just like our name, and we know we’re the real experts on the front lines of the health care system that serves (and, sadly, often underserves) dying people. We have an adage in the disability community – “Nothing about us without us.” Although people with disabilities aren’t usually terminally ill, the terminally ill are almost always disabled. And that is why we’re here testifying today.
Make no mistake. Despite the bill’s baseless assertion within its own text that no action taken in accordance with the act constitutes suicide, assisted suicide, mercy killing, or homicide under the law, B21-38 would establish government-sanctioned support for the idea that in some instances, doctor-prescribed suicide is the best medical treatment.
Allow that to sink in.
In the wake of the diagnosis and death of Brittany Maynard, much has been made in the media about the need to have an “honest conversation” about end-of-life topics. Indeed, Not Dead Yet agrees. However, we arrive early at points of divergence with those who support this and similar bills, for if we are to have the honest conversation so clamored for in sound bites, myriad myths – assisted suicide “urban legends,” as it were – must be confronted head on. In the brief pages that follow, I will present several of those myths and debunk them in turn, showing in each instance why B21-38 is a dangerous bill that should not become law in the District of Columbia.
Myth #1: This Bill Is a Public Policy Response to Intractable Pain.
The first myth is that legalizing assisted suicide is a merciful public policy response as an additional option to those facing intractable pain. Although this whole ugly business seems far more palatable when such noble aims are headlined, the available data does not bear out this claim, however reasonable it may sound. As proponents themselves admit, and as Oregon’s physician reporting form demonstrates, it is social factors that make up the suffering this bill talks about. Doctors report people choosing suicide because of loss of dignity, loss of autonomy, feeling like a burden, and loss of control of bodily functions.
If one looks at Oregon, the state in which assisted suicide has been legal the longest, the top five reasons reported for issuing the lethal prescriptions since the start of the annual reports are the “loss of autonomy” (92%), “less able to engage in activities” (89%), “loss of dignity” (80%), “loss of control of bodily functions” (50%), and “feelings of being a burden” (40%).[1] Pain does not even break the top five reasons given. And if one is inclined to decry the Oregon data, and wishes to nonetheless contend that pain relief really is at the heart of these legislative initiatives, then why not fulsomely invest efforts to make palliative care and pain management services the very best they can be rather than offering a government-sanctioned suicide option that removes the necessity in doing so?
As renowned palliative care expert Dr. Ira Byock has testified,
If I thought lethal prescriptions were necessary to alleviate suffering, I would support them. In 34 years of practice, I have never abandoned a patient to die in uncontrolled pain and have never needed to hasten a patient’s death. Alleviating suffering is different from eliminating the sufferer. Allowing a person to die gently is importantly different from actively ending the person’s life.[2]
Whatever else assisted suicide is, it is not about pain.
Myth #2: This Bill Provides Dignity and Control to People Who Are Suffering.
The second myth follows this flawed logic flow:
Acquiring certain disabilities means one has lost his or her dignity.
Losing one’s dignity is ample justification for ending one’s life with the assistance of a physician.
Ergo, having a certain type of disability justifies a public policy that permits (and in a profit-driven health care system, some may argue encourages) physicians to assist people in taking their lives.
After all, isn’t that what people are arguing with “dignity” arguments? I cannot toilet independently anymore, help me die. I cannot mountain climb anymore, help me die. I cannot transfer from my bed into my chair without assistance, help me die. (And more than help me die. Sanction my suicide. Approve of it.) With that kind of thinking, suddenly, your elderly parents or your neighbor’s disabled kid look like they could benefit from these policies, too, and indeed, that’s the next logical step several countries have pursued for lack of an arguable distinction otherwise. Would anyone supporting this bill actually care to argue that a person with six months to live who can no longer toilet by themselves lacks dignity while someone who was born without the ability to toilet by themselves possesses it and believe their argument will be persuasive in any manner? Even if that argument were to be made, does anyone believe it would provide a legally comforting distinction?
In a society that prizes physical ability and stigmatizes impairments, it is no surprise that able-bodied or previously able-bodied people may tend to equate disability with a loss of dignity. However unsurprising it may be, it makes it no less insulting and misguided a societal judgment for people with disabilities who deal with incontinence or other losses in bodily function every day and who know that these things have no more correlation with dignity than does the purchase of athletic equipment with a guarantee of athletic prowess.
It is a dangerous business for public policy to tether dignity to independence. Such a linkage renders scores of people with disabilities who are dependent on others for personal care, as well as those who age into or acquire disabilities that necessitate similar dependence, branded with society’s pronouncement of living undignified lives. Legalizing assisted suicide sends the wrong message to anyone who depends on caregivers – the message that feeling like a burden is not only an acceptable reason for suicide, but a justification for our health care system to provide you the lethal means.
Myth #3: This Bill Is Only for Those Who Are Terminally Ill.
Nearly everyone knows someone personally or vicariously who has vastly outpaced or outlived a medical prediction. It should not surprise the Committee to learn that within the disability community, the prevalence of this phenomenon is quite high.
Society loves these “inspirational” stories – stories of triumph and overcoming odds – when they’re contextualized with athletic prowess or doing something deemed heroic – be it scaling Mt. Everest as an amputee or mastering martial arts as a blind individual. We clap, we applaud, we wipe a tear. These people, we think, picked themselves up by their bootstraps and “overcame” their unfortunate state of affairs. But how quickly the attitudes change when the individual’s life with a disability is more run-of-the-mill, less glorious in its distinction. Then, it seems, society is more prone to view disability as a fate worse than death. If disability can’t be made glorious somehow, it defaults to being a tragedy – human suffering to be avoided at all costs. Bills like B21-38 only perpetuate these dogged attitudinal barriers that people with disabilities face and battle throughout our whole lives.
An established body of research demonstrates that physicians underrate the quality of life of people with disabilities compared with our own assessments.[3] Nevertheless, the physician’s ability to render these judgments accurately remains unquestioned. For a patient seeking a lethal prescription, steps that could address concerns, such as home care services to relieve feelings of burdening family, need not be explored under bills like this one. In this flawed world view, suicide prevention is irrelevant.
Although society esteems doctors as nigh infallible, when it comes to predicting the future, of course doctors, too, are constrained to be human and operate on limited information and conjecture. For example, Massachusetts Senator Ted Kennedy was diagnosed with aggressive brain cancer in 2008, the same kind of cancer that Brittany Maynard had. One has to believe that Senator Kennedy would have availed himself of the very best medical care money could buy. His widow Victoria described his story in a powerful op-ed, writing:
When my husband was first diagnosed with cancer, he was told that he had only two to four months to live, that he’d never go back to the U.S. Senate, that he should get his affairs in order, kiss his wife, love his family and get ready to die. But that prognosis was wrong. Teddy lived 15 more productive months.[4]
Were this bill to become law, someone in the District of Columbia receiving a similar diagnosis could be dead in days, based on the tragically mistaken belief that death was imminent.
For those who would retort, “Four versus fifteen months, what’s the difference? He died soon after,” there are plentiful examples of the instances in which the doctors are wrong by years, even decades.
In a 2011 letter to the Boston Globe, Oregonian Jeanette Hall wrote that she voted for “death with dignity” in her state, and when she received a terminal diagnosis, asked for a lethal prescription. “I didn’t want to suffer,” she wrote. Fortunately, she had a doctor who persuaded her to try more treatment. Now, more than 14 years later, she wrote that she is “so happy to be alive.”[5]
In this age of cost-cutting, policy discussions often revolve around healthcare cost containment. In the state of Oregon, Barbara Wagner and Randy Stroup received letters from Oregon Medicaid denying coverage for prescribed chemotherapy. The letters noted, however, that the state would cover the $100 cost of suicide.[6] Because assisted suicide will always be the cheapest “treatment,” its availability will inevitably affect medical decision-making. Should we trust insurance companies to do the cheap thing or the right thing? Should D.C.’s laws assist one in ending his/her life or in fighting for it?
Myth #4: The Bill Has Adequate Safeguards Against Abuse.
B21-38, like many similar pending bills and enacted laws, is ripe for abuse in any number of ways.
First, the mere availability of legalized assisted suicide creates pressure to consider the “treatment option” by people already feeling vulnerable by a doctor’s diagnosis and prognosis. We already see people feeling pressured and pushed towards assisted suicide for the sake of their family. In Oregon, 40% of those who utilized assisted suicide reported feeling like a burden on family and caregivers.
Oregonian Kathryn Judson tells of bringing her seriously ill husband to the doctor: “I collapsed in a half-exhausted heap in a chair once I got him into the doctor’s office, relieved that we were going to get badly needed help (or so I thought),” she wrote. “To my surprise and horror, during the exam I overheard the doctor giving my husband a sales pitch for assisted suicide.’ Think of what it will spare your wife, we need to think of her’ he said, as a clincher.”[7]
Second, depressed people will be harmed by this bill. Oregonian Michael Freeland easily obtained a lethal prescription for his terminal diagnosis, despite a 43-year history of severe depression, suicide attempts, and paranoia. Fortunately, other doctors and counselors intervened to address his real needs and he died a natural death about two years later. When this story came to light, the prescribing doctor said he didn’t think a psychological consult was “necessary.”[8] And this is not an anomaly. Oregon’s statistics for the last five years show that barely 2% of patients were referred for a psychological evaluation,[9] so the notion that B21-38’s provisions would yield any better is unfounded based on the lived experience of the state that has had legalized assisted suicide the longest.
Third, if one doctor declines to approve of a prescription, families can simply go “doctor shopping,” circumventing the bill’s purported safeguards. When a consulting psychologist found that 85-year old Oregonian Kate Cheney lacked the “level of capacity” necessary to weigh her options, and that Kate’s daughter was pushing harder for suicide than she was, the angry daughter got the insurance company to find a second opinion. The second psychologist had the same concerns, and in fact noted that “choices may be influenced by her family’s wishes and her daughter, Erika, may be somewhat coercive,” but ruled that Kate was competent anyway.[10] On the day that she got back from a nursing home stay as respite for her family, Kate offered to take the lethal overdose. Her family facilitated her death that same day.[11] People with disabilities who have spent any time in a nursing home out of necessity can tell you — choosing between a nursing home and a family who sees you as a burden is not a true choice.
There is nothing in this or any other assisted suicide bill that can protect people like Kate Cheney. Every year in DC, it is estimated that out of 100,000 people 60 years old or older, there are 11,000 cases of abuse, some reported and some unreported.[12] For every case that is reported, it is estimated that many more cases are not.
Just north of the District in Montgomery County, Maryland, according to the chief of the Family Violence Division state’s attorney’s office, only four percent of elder abuse cases that are reported are done so by the elderly individual him or herself; 96 percent of reported cases come from other sources.[13] It is only in a fantasy world that all families, including the thousands of criminally abusive ones, happily gather around the peaceful and willing suicide.
Fourth, because assisted suicide bills like B21-38 do not grant departments of public health investigatory authority and resources, investigations are foreclosed. All reporting about doctor-assisted deaths is self-reported, which is sort of like asking drivers to let their home state know each year whether or not they ever rolled a stop sign or drove above the speed limit. This explains the absurd and disproven claim by proponents that there has been not one case of abuse in Oregon.
Myth #5: This Bill Is Not an Affront to People with Disabilities.
While perhaps unintendedly, B21-38 communicates some pretty awful messages to people with disabilities about our worth and our dignity and compromises the equalizing spirit of the legislation most important to us.
This year marks the 25th anniversary of the signing of the Americans with Disabilities Act (ADA). Numerous American disability rights laws declare that “disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society.”[14] However, here we are today, giving testimony about a proposed piece of legislation that would legalize disability discrimination in health care.
The ADA stands shoulder-to-shoulder with other landmark civil rights laws, acknowledging the immutability of disability and the equality under the law of all persons regardless of such characteristics. The immutability of the characteristic is what creates the prohibition of discrimination on the basis of disability. In this way, disability is viewed the same as race or gender and legal protections attach for the same reasons. Making a mockery of the basic civil rights premises underlying the ADA is the idea that based upon the presence of certain disabilities alone, a doctor’s duty to care and to treat can instead focus on facilitating suicide. B21-38 reinforces the very societal prejudice that disability rights laws were meant to dismantle and alters societal focus from respecting and accommodating people with disabilities to assisting them to die.
Conclusion
So yes, let’s be brave and have the conversation about these topics, but let’s do it honestly. Let’s talk about the fact that at $100, assisted suicide will be the cheapest “treatment” in a profit-driven healthcare system. Assisted suicide saves insurance companies lots of money. Let’s talk about how abuse of elders and people with disabilities is on the rise, and how an abusive caregiver could easily steer someone towards assisted suicide, witness the request, pick up the lethal dose, and even administer the drug – without witnesses required at death, who would know? Let’s talk about the fact that no psychological evaluations are required of those requesting the lethal doses, so people with history of depression and suicide attempts can receive the lethal doses with ease. Let’s talk about the lack of any true safeguards or enforcement or investigation authority. Finally, let’s finish the conversation talking about the fact that absent the presence of a physical disability and dependence on others for everyday needs, doctors and public policies would dictate an entirely different intervention for an able-bodied suicidal person. For this reason, there is no way to argue around the reality that assisted suicide laws give government-sanctioned approval to discrimination on the basis of disability within health care. If this were any other protected class other than disability – race or gender, for example – would anyone have even a moment’s hesitation in decrying the legislation as discriminatory?
What disabled people see in legalizing assisted suicide is that some people get suicide prevention, while others get suicide assistance, based on value judgments and prejudice.
Let’s make sure that people have the choice and support to live comfortably at home with supports rather than offering hastened death. Please continue to think about District residents, elders and disabled people who may be vulnerable and without the sort of support and control that assisted suicide proponents take for granted; innocent people who would be impacted by this piece of bad social policy.
In two weeks, the nation will celebrate the 25th anniversary of the Americans with Disabilities Act, acknowledge the contributions and struggles of Americans with disabilities, and offer recommitment to its aims of ending disability discrimination.
B21-38 is an affront to the civil rights of people with disabilities. Reject B21-38 and the disability discrimination it promotes.
Thank you very much for the opportunity to provide this testimony.
[1] Oregon Health Authority, “2014 Death with Dignity Act Annual Report,” accessed July 9, 2015, https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf.
[2] Testimony of Ira Byock, M.D. before the Vermont Senate Committee on Health and Welfare, Hearing on End of Life Choices (January 31, 2013), accessed July 9, 2015, http://notdeadyet.org/2013/01/vermont-testimony-of-ira-byock-md-to-vermont-senate-committee-on-health-and-welfare-hearing-on-end-of-life-choices.html.
[3] For example, (Gerhart, K. A., Kozoil-McLain, J., Lowenstein, S.R., & Whiteneck, G.G. (1994). Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers. Annals of Emergency Medicine, 23, 807-812; Cushman, L.A & Dijkers, M.P. (1990). Depressed mood in spinal cord injured patients: staff perceptions and patient realities, Archives of Physical Medicine and Rehabilitation, 1990, vol. 71, 191-196).
[4] Victoria Reggie Kennedy, “Question 2 insults Kennedy’s memory,” Cape Code Times (October 27, 2012), accessed July 9, 2015, http://m.capecodtimes.com/article/20121027/OPINION/210270347&cid=sitesearch&template=wapart.
[5] Jeanette Hall, “She pushed for legal right to die, and –thankfully – was rebuffed,” Boston Globe, Letter to the Editor (October 4, 2011), accessed July 9, 2015, http://www.boston.com/bostonglobe/editorial_opinion/letters/articles/2011/10/04/she_pushed_for_legal_right_to_die_and___thankfully___was_rebuffed/.
[6] Susan Donaldson James, “Death Drugs Cause Uproar in Oregon” ABCNews.com (August 6, 2008), accessed July 9, 2015, http://abcnews.go.com/Health/story?id=5517492.
[7] Kathryn Judson, “Assisted Suicide? ‘I was afraid to leave my husband alone again with doctors and nurses,’” Hawaii Free Press, Letter to the Editor (February 2011), accessed July 9, 2015, http://hawaiifreepress.com/ArticlesDailyNews/tabid/65/ID/3647/February-2011-Letters-to-the-Editor.aspx.
[8] N. Gregory Hamilton, M.D. and Catherine Hamilton, M.A., “Competing Paradigms of Responding to Assisted-Suicide Requests in Oregon: Case Report,” presented at the American Psychiatric Association Annual Meeting, New York, New York, May 6, 2004.
[9] Oregon Health Authority, “Death with Dignity Act Annual Reports” Years 13-17, accessed July 9, 2015, http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ar-index.aspx.
[10] Barnett EH. A family struggle: is mom capable of choosing to die? The Oregonian, 17 October 1999:G01.
[11] Id.
[12] Peck Law Group, “Elder Abuse Data and Statistics” (January 26, 2013), accessed July 9, 2015, http://www.premierlegal.org/elder-abuse-data-and-statistics/.
[13] Gazette.net (Maryland), “A safe place for abused seniors” (February 9, 2015), accessed July 9, 2015, http://www.gazette.net/article/20150225/OPINION/150229551/-1/eldersafe-is-sound&template=gazette.
[14] As expressed in the U.S. Developmental Disabilities Act, 42 U.S.C.A. §15001 (2000), which, in Congressional findings, states: “[D]isability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society”