Public Comment of Bruce Darling
National Organizer, ADAPT
To The Virginia Joint Commission on Health Care
Opposing Policy Option 2 Which Would Recommend Assisted Suicide Legislation
October 12, 2018
Chair Dance, Vice-Chair Garrett and the respected members of the Commission,
My name is Bruce Darling, and I am a National Organizer for ADAPT, a national, grassroots organization comprised of disabled people and our allies who work to promote the civil and human rights of people with disabilities, so that we may live freely and with dignity. I am writing to you at the request of our DC Metro ADAPT chapter, whose membership includes many Virginians, to register the strongest possible objection to even the consideration of introducing legislation to legalize physician assisted suicide.
For more than 35 years, ADAPT has been committed to changing discriminatory laws, dismantling access barriers, and fighting policies and practices that take aim at our personal liberties. Throughout our existence we have been heavily involved in the legislative process. We helped craft and implement the ADA and are currently working to pass the Disability Integration Act. We have long recognized that opposing legislative and judicial efforts to legalize physician assisted suicide is central to our mission of protecting the civil and human rights of disabled Americans. For this reason, we have built a close working relationship with Not Dead Yet, the leading national organization focused on opposing physician assisted suicide. I am aware that Diane Coleman, President and CEO of Not Dead Yet, has already submitted a public comment to this Committee on behalf of Not Dead Yet and I would like to offer a full endorsement of that statement.
As an organization working to ensure disabled people’s right to build our lives in the community, legislation making it legal for physicians to help end our lives is deeply troubling to ADAPT. While the proponents of this legislation will tell you that it is not about disabled people, only people with terminal illness, let me assure you that every single person who qualifies under that definition is a disabled person. Not every person with a disability is terminally ill, but every person who is terminally ill is or will eventually become a person with a disability. There is no person with a terminal prognosis who does not also have, or acquire, an impairment which significantly affects their ability to perform a major life function (such as eating, sleeping, toileting, or walking).
Accordingly, physician assisted suicide is only provided to people with disabilities, by definition. This is discrimination. People with disabilities have fought hard for the right to live as equals, to
live and receive services in the community, to have equal access to housing and transportation and employment opportunities. In an ableist society, these rights are continually denied to us. Yet this same society wishes to extend to us the “right” to end our lives. Equal rights, means equal access to suicide prevention, not the false “compassion” of suicide assistance.
It is too easy to qualify for assisted suicide.
In legislation that we have seen to date, it is far too easy to qualify for assisted suicide. Most set the bar at anyone who, with or without treatment, would have six months to live. Using myself as an example, if I were to stop managing my diabetes, I would easily meet this standard. I am not alone; this expansive definition includes a great many people with disabilities who will happily live for decades with proper treatment. This is a definition which leaves disabled people wide open to potential abuse.
There are no adequate safeguards.
People with disabilities experience domestic abuse and violence at the hands of family members and “caregivers” at twice the rate of the general population. Federal authorities state that one in ten older adults experience elder abuse. Disabled people, and older adults, are at great risk of this abuse turning deadly. In Oregon, where assisted suicide has been legal for twenty-one years, family members have been able to get around “safeguards” which fail to protect people from assisted suicide coercion, abuse, and potential homicide.
Even where a doctor has refused to write the lethal prescription to end a patient’s life, suspecting that the patient was being manipulated by a family member, those family members have taken the patient to doctor after doctor until they found a doctor willing to kill the person. The majority of assisted suicide prescriptions in Oregon have been written by doctors referred through the assisted suicide lobby group, yet the state has no authority to investigate why the patients’ own doctors did not write such lethal prescriptions.
Some disabled people who have died of a lethal prescription in Oregon were physically unable to take the lethal drugs without assistance. That means that another person administered the drugs: there is no way to prevent an attendant or a family member from doing this when a lethal prescription is in the house of a person with a disability. Advocates for assisted suicide point to the fact that many people keep the lethal prescription in their home but never take it, wishing only to feel that they are in control of their situation, however, with the lethal prescription in the home and no independent witness required at death, people with disabilities and older adults can be murdered by family members or attendants. Furthermore, the legal system will do nothing because the initial request provides the alibi and throws a blanket of immunity over whatever happens behind closed doors.
Assisted suicide is a deadly way to cut costs.
We live in a time when health care is a commodity, when insurance companies and managed care organizations base decisions as much on cost as effectiveness of treatment. It is inevitable that assisted suicide will be used to cut costs if it is legalized. In Oregon there have been several recorded cases in which insurers denied people access to life extending treatment while offering a lethal prescription instead. Only weeks after California passed its assisted suicide law, Stephanie Packer, a mother of four and a cancer patient was denied her previously approved chemotherapy treatment, and offered low cost suicide pills instead. In a profit driven health care system assisted suicide offers a far too appealing way to cut costs.
Physicians misjudge quality of life.
Nondisabled people who express a desire to commit suicide to a doctor are almost always referred to suicide prevention or mental health services. By contrast, when a disabled person requests assisted suicide, doctors conclude that our disabilities are sufficient grounds to treat us differently, and that suicide should be an option for us. Doctors often underrate the quality of life of people with disabilities compared with how we rate our own lives. Yet a doctor’s ability to make this determination is considered a key safeguard in this law. Some doctors are likely to provide the assisted suicide instead of taking the additional steps that could address a person’s concerns, such as discussing home care services to relieve feelings of burdening family, or palliative care to address pain, or referring a suicide-seeking disabled person to suicide prevention or mental health services.
For instance, when an athlete is given an ALS diagnosis, doctors should tell them about the many people who live with ALS and who live happy, fulfilling lives. Doctors should tell them about the availability of community based services that will enable them to live with their family. Doctors should give them time to grieve, as appropriate, the loss of physical abilities. Doctors should recognize that a person who has recently acquired a disability deserves support and the best information about community based options, not a hasty and false choice between being a stereotype of disability, trapped in an institution, on the one hand, or refusing treatment and dying on the other.
Effective alternatives, such as palliative care, exist to relieve the suffering of those truly in their last days of life.
Pain management in the form of palliative care is already available and is highly effective at relieving the suffering of people in physical pain at the end of their lives, even to the point of palliative sedation in cases that are otherwise intractable. Advocates who wish to relieve the pain of the dying already have effective options that do not create a legal way to kill people with disabilities and older adults without consequences. Assisted suicide is not about relieving the suffering of the dying: it is an expression of the most toxic and deadly form of ableism, which
holds that life with a disability is not worth living. The lives of people with disabilities, whether terminal or non-terminal, do matter, and are worth living.
Ensure that we get to live with dignity, not die with it!
“Death with dignity” is a false promise in a world that denies the reality that disabled people can live with dignity. Right now, many disabled people are forced to live in poverty and leave our homes and communities if we want to receive the supports we need to live our lives. Our society treats the Disability Community so badly that it is not surprising many nondisabled people would prefer death to what little they know of disabled lives. But that is reason to improve society, not to allow people with disabilities to be killed.
We already live in a world that devalues disabled lives. Disabled people face discrimination, violence, and abuse at higher rates in every corner of our society. When disabled people are able to live our lives free of forced institutionalization, and over-reliance on family support; when we do not have to fight for improved palliative care; when society no longer portrays us as burdens, there will be no call for doctors to kill us except for those pushing hate. Support us in living dignified lives and there will be no need to discuss dignified deaths.
Sincerely, Bruce Darling