Compassion — Lives at Risk
Quite often when I am asked to speak on the subject of assisted suicide, my introduction includes ... "and she is a resident of Michigan, the Jack Kevorkian state." I consider that quite a dubious distinction.
Yes, I live in the state where an unemployed pathologist and his irreverent attorney have created a media sensation time and again. I have read, heard or seen those two pat themselves on the back for being "the compassionate ones."
But herein lies the peril. They are part of a subtle seduction of society into believing that the paramount compassionate act is helping a person with a disability die. Not heard through the clamor of the media circus are the voices of the individuals assisted suicide would directly and imminently impact—persons with disabilities.
I know compassion is a beautiful gift to receive. I know compassion is a beautiful gift to give. The current desecration of the word "compassion" symbolizes a devaluation of the lives of persons with disabilities, and serves as societal justification for assisted suicide. Because of this development, persons with disabilities believe quite rightly that their lives are at risk.
Devaluation—Lives at Risk
As an attorney who represented persons with disabilities, I learned firsthand how the long history of societal prejudice against people with disabilities can influence a person's decision about suicide, and also influence what others think they should decide. What I heard from people with disabilities is that they can never make an informed and unbiased decision to end their life by assisted suicide. From the time they are born with a disability or acquire a disability, they are bombarded with negative societal messages. These messages hurtfully and continuously tell them that they are a physical or financial burden on their family or friends, that they are a burden on taxpayers and "using up precious health care dollars." In this prejudicial environment, the nebulous "right to" die easily becomes a duty to die.
Sound far-fetched? Janet Adkins, the first woman Mr. Kevorkian assisted in suicide, had only recently been diagnosed with Alzheimer's disease. Her physician told her she had at least ten good years left. Indeed, she had played tennis with her son a couple of days earlier. Ms. Adkins, worried that she might be a burden on her family, suggested to them that they might be better off without her. Her family did not disagree. Soon after, with her family's consent, she sought Mr. Kevorkian's help to end her life, and he readily agreed that she was a good candidate for death.
Janet Adkins' tragic fate brings to mind a passage in Rita Marker's book Deadly Compassion: "Knowing someone wants you dead is more lethal than cancer."
Equally lethal is the current lack of support for persons with disabilities. Lack of adequate medical care, including pain management, can lead a person to suicidal despair. Lack of mental health services can lead people to, or fail to rescue them from, such despair. Many of the women Mr. Kevorkian assisted in suicide, for example, did not have an imminently fatal condition, but did have a clinical level of depression. Just as critical for persons with disabilities, is the often complete lack of support to enable independent living in the community and a means of transportation to make outside employment possible. These two factors can enhance exponentially the quality of life for a person with a disability.
Elizabeth Bouvia was in her early 20's, had earned a college degree, and was working on a master's degree when her desire for physician aid in starving herself to death led her through the California court system. If Ms. Bouvia had not had a disability, the courts would never have allowed it. No doctor would have assisted her. The state would have intervened with suicide prevention or mental health services. But, Ms. Bouvia had cerebral palsy and used a wheelchair, so the courts granted her the right to starve herself. It was only after the disability community rallied around her and helped her meet her physical and emotional needs, that she changed her mind about dying. It was revealed that Ms. Bouvia had been placed in an institution by her mother when she was ten. Prior to her request to die she had suffered a miscarriage, separation from her new husband, the death of her brother, serious financial distress, and withdrawal from graduate school when told that no one would hire her after she received her degree. The story is a chilling example of how lack of community supports and disparate treatment by the courts, the medical profession and the state can heavily influence a person's decision to end his or her life.
The Slippery Slope — Lives at Risk
Some believe the concept of a "slippery slope" toward killing the non-terminally ill is mere hysteria. But the slippery slope is here, and we are headed down hill at a fast clip. Take this statement from the book Final Exit by the well-known proponent of assisted suicide Derek Humphry:
What can those of us who sympathize with a justified suicide by a handicapped person do to help? When we have statutes on the books permitting lawful physician aid-in-dying for the terminally ill, I believe that along with this reform there will come a more tolerant attitude to the other exceptional cases.
Jack Kevorkian's activities have proven that Mr. Humphry is not the only one with such an agenda.
One of Kevorkian's cases involved a father and son who are both physicians. Dr. Klooster Sr. had Alzheimer's disease, that had advanced to a point where he was mentally incompetent. His life insurance policy was to terminate at the end of 1996. His wife contacted Mr. Kevorkian for assistance in hastening her husband's death. When the wife told the plan to some long-time friends, they helped Dr. Klooster Jr. to thwart his mother's plan by getting his father safely to Northern Michigan. Dr. Klooster Jr. called me for assistance in his ensuing custody dispute with his mother. The doctor told me he had called Mr. Kevorkian and asked how he could consider helping a man to commit suicide who was not even competent to consider suicide. Mr. Kevorkian accused Dr. Klooster Jr. of manipulating his medical colleagues into assessing his father as incompetent. Kevorkian told Dr. Klooster Jr. that, as far as he was concerned, his father was competent and he intended to assist him. Kevorkian had no basis for that evaluation because he had neither met Dr. Klooster Sr. nor even spoken with him over the telephone.
Another case involved an elderly woman with rheumatoid arthritis. Mr. Kevorkian and his attorney Geoffrey Feiger showed a videotape of the woman sitting in a wheelchair and saying, "I'm full of despair because the pain can't be controlled." Together they announced that if no physician could come forward to control her pain, Kevorkian would assist in her death. After that media conference, I spoke with some of the Michigan media who knew I had rheumatoid arthritis. They were surprised to learn that it is not a fatal disease. When my name was mentioned in a subsequent Associated Press story, physicians from around the country called me, hoping to learn how to contact the anonymous woman so that they could offer to treat her. Most of them were pain management specialists. They offered to fly her to their clinic or even come to her and treat her for free. Their common belief was that her level of pain was unnecessary because there are medical technologies to alleviate much of the pain of rheumatoid arthritis. They also believed her despair would resolve once the pain was controlled.
I gave these physicians Mr. Feiger's phone and fax numbers. Some of them later told me that no matter what they tried, no one from Mr. Feiger's office ever returned their calls. Members of the media also found that no matter how hard as they tried, they could not discover the identity of the woman in despair. They believed Mr. Feiger and Mr. Kevorkian were setting the woman up for an assisted suicide. They desperately wanted to find her to make sure she was receiving the help she needed. The physicians sincerely wanted to reach out to her and treat her. None were granted the opportunity. We learned that the woman's name was Margaret Garrish—but only after Kevorkian helped her end her life later that year.
An additional irony is that Kevorkian later revealed he had treated Ms. Garrish for two years prior to her assisted suicide. The medical professionals I know refer patients who have conditions outside their expertise. Kevorkian, a retired pathologist, had never treated a live patient in his medical career. It is heartbreaking and inexcusable to think this woman suffered needlessly for two years before her life was taken. Yet Kevorkian calls himself the voice of "compassion" in these cases.
A Voice of Experience
Helping people to die because they have the non-fatal disease of rheumatoid arthritis hits too close to home for me. This is a slope that places my own life at risk.
I used to be a runner. I ran three to five miles a day before I was diagnosed with rheumatoid arthritis. It hit hard and fast. As I was applying to medical schools I became totally incapacitated. I was confined to bed and needed someone to lift a glass to my mouth to drink. I had to use a bedpan and someone had to clean me after each use. But I never felt a loss of dignity.
My care givers were my mother and grandmother. They loved me and valued me—I could tell. The feeding, bathing, and toileting of their adult family member was just another part of daily life, exercised with genuine care and not begrudgingly. They encouraged me to continue to prepare for medical school. They affirmed my worth and gave me support. Because of them, I know there can be dignity in infirmity.
But I have also seen the other side. When I was getting well enough to move around in a wheelchair, my mother and grandmother were killed in an accident. Shortly thereafter, I was diagnosed with another disease—this time a neuromuscular disease that was much more imminently fatal. Because I had no family members residing near me, and because I needed day-long dialysis sessions, I went into a nursing home close to the hospital. I believe I was the only patient there who was competent. I was placed in a room with the patient closest to me in age—a woman about ten years older than I, who was in a persistent vegetative state.
I wanted to be in medical school. Instead, I was grieving deeply for a mother who had been my dearest friend, spiritual sister and advocate ... and waking up to see the woman next to me staring straight at me with uncomprehending eyes ... and regularly waiting 45 minutes for a bedpan call to be answered by an impatient aide. I argued with nurses who could not speak English when they tried to force me to take medication that was not mine, and wondered what sweet, unsuspecting elderly resident was getting my medication. I looked forward to the seven-to eight-hour-long painful dialysis sessions because they allowed me to leave.
I relate these events not for pity, but to say that I know how a person could want to end her life under such external conditions. I know the difference between being treated with dignity, and being treated with prejudice and as a burden. I know the effect the latter can have on even the strongest human psyche. I would not be alive today if I had not left that nursing home relatively quickly. My demise would not have been caused by my disabilities, but from the environment, an environment that society has control over and can change.
Unfortunately, both my diseases are chronic and may become incapacitating again. I am not afraid of that possibility. But I am afraid of the fact that I live in an era when assisted suicide is prescribed for such situations, and my mother is no longer alive. She was the one in the past who said, "no one is going to harm my daughter." What will happen to me without my advocate and my defender?
I am also living in an era of health care rationing. I am going to stay as far away as I can from Oregon whose Medicaid program has instituted rationing on "cost-effectiveness" grounds. An ethicist in Michigan who promotes rationing has said that "as a just and caring society we must decide who will get health care." As someone with two serious and chronic illnesses, I can guess where that leaves me. And if I hang on ... will assisted suicide be encouraged or even required of me someday in this just and caring society?
Just as Derek Humphry and Jack Kevorkian are not alone in their dismissive attitude toward life with a disability, I am far from alone in fearing and opposing their agenda. Many people with disabilities have joined together to form the group "Not Dead Yet," which opposes the assisted suicide agenda and its negative view of life with a physical illness or impairment. One of the closely guarded secrets of this debate is that the people most often displayed as "beneficiaries" of assisted suicide—people who are frail, elderly or in pain from terminal illness—are far more opposed to this agenda than the young and able-bodied are. What a tragedy it would be if this lethal solution were accepted in our society out of misguided altruism—ignoring the fact that the people most directly affected are almost literally scared to death of this trend.
Challenge to a Compassionate Society
"All life is valuable" is the mantra of the community of persons with disabilities. A truly compassionate society is one that values every single person regardless of health condition. The message of the pro-assisted suicide part of society is that it is more convenient and humane to offer assisted suicide than to support and value the lives of people with serious illnesses and disabilities.
People with disabilities, including myself, have heard and seen that message and believe our lives are at risk. It frightens me to contemplate a society that has determined it is more economical to assist in suicide than to care for me, to listen to me talk about my pain and troubles, to administer a healing touch to my disfigured, disabled body.
Our challenge today is to expose and reject the false "compassionate society" that offers the convenient and economical solution: death by assisted suicide. To be a truly compassionate society, we must embrace and value the lives of people with disabilities.
Ms. Gigliotti, an attorney, serves as a policy advisor to the Michigan State senators on issues of assisted suicide, mental health and human services. Prior to that, Ms. Gigliotti has worked in the area of disability rights law, specializing in end of life decision-making.