Last week, this blog shared the news that the Connecticut Office of Protection and Advocacy for Persons with Disabilities (OPA) has filed a motion to intervene in the Connecticut assisted suicide case, Blick v. Division of Criminal Justice. The motion included several affidavits submitted with the motion to intervene. Today and tomorrow, I’ll share the affidavits of James D. McGaughey, Executive Director of the Connecticut OPA and Nancy B. Alisberg, the Managing Attorney of the Connecticut OPA.
I’ll lead off today with the affidavit submitted by James D. McGaughey. The text below is a retyped copy of the affidavit, but you can access a scanned pdf copy of the affidavit here. Text of affidavit follows:
GARY BLICK, M.D., and
RONALD N. LEVINE, M.D.V.
OFFICE OF THE DIVISION OF CRIMINAL JUSTICE, et al.
SUPERIOR COURT
JUDICIAL DISTRICT OF HARTFORD
AT HARTFORDAPRIL 8, 2010
AFFIDAVIT OF JAMES D. MCGAUGHEY
1. My name is James D. McGaughey. I am over the age of 18 and I understand the obligations of an oath.
2. I am employed as the Executive Director of the Office of Protection and Advocacy for Persons with Disabilities. I have served in that position since November 1, 1994. Prior to becoming Executive Director, I was employed at the Office of Protection and Advocacy for Persons with Disabilities for 12 years, serving in various other capacities including Acting Assistant Director, Advocacy Program Director, Staff Attorney, Human Services Advocate, and Law Student Intern.
3. During my service at the Office of Protection and Advocacy for Persons with Disabilities, the agency has represented individuals with significant disabilities who faced the prospect of, or actually experienced discriminatory denial of beneficial, life-sustaining medical treatment. In most such cases physicians or others involved in treatment decisions did not understand or appreciate the prospects of people with disabilities to live good quality lives, and their decisions and recommendations sometimes reflected confusion concerning the distinction between terminal illness and disability. In a number of those cases, despite the fact that the individuals with disabilities were not dying, decisions had been made to institute Do Not Resuscitate orders, to withhold or withdraw nutrition and hydration, to withhold or withdraw medication or to not pursue various beneficial medical procedures. In my experience, people with significant disabilities are at risk of having presumptions about the quality of their lives influence the way medical providers, including physicians, respond to them.
4. Over the past twenty years I have participated with disability and elder advocates, state agency representatives, healthcare professionals, legislators, the Probate Court Administrator and staff from the Connecticut General Assembly’s Law Revision Commission on several committees that studied and drafted proposed amendments to state statutes governing the powers of substitute decision makers and end of life decisions making. In addition, on January 22, 2010, in partnership with the Connecticut Council on Developmental Disabilities and the A.J. Pappanikou Center for Excellence in Developmental Disabilities, my agency co-sponsored an informational conference on “Disability and Medical Decision Making; Ethical Issues in Policy and Practice.”
5. Through my involvement in our office’s casework, and in researching and preparing for my policy advocacy roles, it has become apparent to me that people with significant disabilities are uniquely at risk of having the quality and value of their lives underestimated, that they are often perceived as “suffering” and that circumstances under which they may have to live in order to receive care sometimes leave them feeling despondent and hopeless. In fact, I have met a number of people with disabilities who have told me that at various points in their lives they had “just wanted to die” before coming to realize that they could lead satisfying and contributing lives.
6. In my role as Executive Director of the Office of Protection and Advocacy for Persons with Disabilities I have become aware of widespread opposition amongst disability advocacy groups to legalizing assisted suicide. More specifically, I am aware that a number of well respected disability rights advocacy organizations, including the National Council on Disability, the American Association of People with Disabilities (AAPD), the National Council on Independent Living (NCIL), the National Spinal Cord Injury Association, the World Institute on Disability, Justice For All, TASH (formerly called The Association of the Severely Handicapped), the Disability Rights Education and Defense Fund (DREDF), and grass roots groups such as ADAPT and Not Dead Yet, have all adopted positions opposing legalization of physician assisted suicide.
7. Opposition to physician assisted suicide amongst these disability advocacy organizations is rooted in the realities of the disability experience. It is not uncommon for newly disabled people to experience a period of depression, or even for people who have lived with significant disabilities to become despondent over loss of function, support and important relationships. While adjustment reactions of this sort are certainly understandable, for people with significant disabilities they are often compounded and prolonged by a general scarcity of accessible, relevant supports that would enable them to live with autonomy and independence. Faced with the prospect of indefinite confinement in an institution, and with no visible alternatives to offer hope, understandable adjustment reactions often transform into a sense of permanent hopelessness, and, sometimes, a desire to die. This reality is reflected in a number of “right to die” cases that were brought in different states several decades ago where individuals with significant disabilities asked facilities to stop feeding them, or to have life support equipment disconnected.
8. In my capacity as Executive Director of the Office of Protection and Advocacy for Persons with Disabilities I am very concerned that if physician assisted suicide is legalized, the practice of prescribing lethal doses will not be limited so as to exclude people with significant disabilities who are despondent or depressed. Disability advocacy groups know, and my personal experience confirms that amongst health care providers, the distinction between disability and “terminal disease” is often more a matter of perception than objective diagnosis. For example, the various manifestations of muscular dystrophy, multiple sclerosis, or any number of other chronic conditions may be considered by some to be progressive disabilities, while others see them as “terminal diseases.” Some people are born with disabilities that that involve multiple, complex medical issues or genetic syndromes that can, but do not always, result in shortened life expectancies. Other people with physical disabilities may experience repeated, life-threatening infections or various other serious health issues. Some even depend on life-support technologies, such as respirators or dialysis, or receive nutrition and hydration through feeding tubes and central line catheters. It is not clear at what point these people would be considered “terminally ill” or how much such decisions would be influenced by pervasive stereotypes about “quality of life” and frank ignorance about the possibilities of living a good life with a disability.
9. My concerns in this regard are heightened by the literature I have reviewed regarding the unreliability of medical prognostications concerning timeframes in which death will occur for individuals who are considered to be terminally ill.
10. Based on my experience advocating on behalf of individuals with significant disabilities, I have concluded that categorically exempting physicians from criminal liability if they prescribe lethal doses of drugs will increase the risk of doctor assisted suicide amongst people with disabilities who may have years of life ahead of them. I further believe that de-criminalizing physician assisted suicide will foster perceptions that living with a significant disability involves suffering and inherently poor quality of life, and that removing the current legal proscription will serve to legitimize the view that life with a significant disability is not worth living. This, in turn, will impact perceptions of the general public about disability, and will likely influence individuals with disabilities who are struggling with adjustment issues, who cannot readily access options for independent lifestyles, and who are concerned about burdening family members with cost and care.
If readers didn’t take notice of the statements in item 3, please reread the comments. They touch on the battles that OPA has had to fight in preventing the wrongful deaths of people with nonterminal disabilities – fighting against guardians/conservators and medical professionals. Tomorrow, I’ll share another affidavit, that goes into detail about some of those cases. –Stephen Drake