The Schiavo case, as it came to be known, has brought medical ethics to the forefront of the public consciousness. Much of the response to the situation seems to have fallen into one of two main camps, one privileging life no matter the circumstances and the other pursuing “death with dignity.”
Often, people on both sides seek to over-simplify the issue. Some claim that medical advancements should all be taken advantage of to prolong life and that there is no difference between withholding treatment and the physician assisted suicide they find reprehensible, while others argue that much treatment prolongs death, not life, and is inhumane. Is it barbaric to remove or withhold a feeding tube, with the result that someone dies, or is it barbaric to keep someone alive indefinitely by artificial means? The difference between life-prolonging and death-prolonging is not always clear.
When I was a teenager, my grandfather was dying in the hospital. For years, the doctor would say that his heart was slowing down. I dreaded his annual check-ups because they reminded me of mortality and made my stomach hurt. My parents, brother and I had moved from Massachusetts to Kentucky to care for my elderly grandparents, to whom I was very close. Their needs meant that in some respects, they dominated home life, and it was difficult to have visitors. One late summer weekend, though, a cousin of my father’s was visiting from out of town, so we planned a cook-out. The cook-out day was cloudy and unseasonably cool, but we were determined to make the best of it, build a bon-fire and play horse-shoes. When my grandfather got up late that morning, though, he was quite unwell. Our guests promptly went home, and the rest of us went to the hospital, where my grandfather had hernia surgery. He never came back home.
In surgery, the doctors ended up taking out his gallbladder but decided to ignore his cancerous pancreas. At eighty-six, he would probably die of something else before the slow-growing cancer caused him trouble. He came out of surgery looking great, but that artificial, after-surgery glow did not turn out to be lasting. His strength diminished and he struggled to breath. We began to feel that my grandfather was dying. All of us did the best we could weighing decisions, but at times, we wished that we had not been convinced of the wisdom of the surgery by well-meaning doctors.
One day, while I was spending the afternoon with my grandfather in the hospital, a nurse came in and announced to me, a lone fourteen-year old she probably took for twelve, "You know he's going to die without a feeding tube." I felt that she was accusing me of a terrible crime. I wondered at her motives. She obviously had his charts, access to his medical information. Did she not realize that with numerous health problems, including an inability to breath, a barely-beating heart, cancer and a hernia that required further surgery that he was not strong enough for, he was clearly dying anyway? As it happens, he had a living will and had stated his wish not to be put on a feeding tube. While some might argue that we should have proceeded with further surgeries, and a feeding tube of course, I ended up feeling that the first surgery was not such a great idea. My grandfather was dying. My mother has not gotten over the fact that he was not able to die at home, instead being shuttled back and forth between hospital and nursing home, run through numerous futile and expensive tests, largely because they were covered by his insurance.
A few years after my grandfather’s death, my great-aunt called to ask for help. She lived nearby, and I went with my mother to her house. I ended up trying to explain the severe rectal hemorrhaging she was experiencing to the 911 operator with some anxiety and without the appropriate medical vocabulary. She spent the next weeks in the ICU undergoing various medical procedures. She was clearly dying, and I already had enough experience to wonder what my cousins were thinking when they authorized invasive treatment, including a tracheotomy.
For some years, a lump grew in my grandmother’s breast. She had stopped having mammograms sometime in her 80s, and even her doctor agreed to let it slide. When it became apparent that my grandmother had breast cancer, her doctor graciously came to see her at home. We appreciated his realization of the wisdom of not pursuing aggressive treatment. At 90, she also developed diabetes, which we treated. She was able to spend the end of her life in her home of nearly fifty years, up in her living-room recliner the day before she died, watching the bird on the feeder and sneaking illicit treats to the dog. She died at 92, at home, surrounded by her family.
While I’m not trying to suggest that if you stay away from medical treatment, death will be transformed into a blissful experience, I believe that there are limits to the appropriateness of medical intervention and a measure of peace to be gained by recognizing them.
But the value of medical intervention should not be forgotten. Life is precious, and medical care can today give people who would otherwise be dead the opportunity to live. Terri Schiavo was one such person, unable to swallow but nourished through the use of a feeding tube.
The Schiavo case has probably been so much discussed that we’re all sick of it and ready to move on with our lives. The fact that we have lives to move on with indicates our responsibility to note the dangerous cultural trend that seems to be indicated by the outcome of the Schiavo case.
In some respects, the so-called Schiavo case was complicated: In the absence of written guidance, shouldn’t Schiavo’s husband, as next-of-kin, be allowed to direct her medical care? Or does the fact that he broke his marriage contract by moving in with another woman mean that he also gave up the right to control Schiavo’s fate? Should the Florida courts be left to their own devices, or is this a case, that, like desegregation, warrants federal involvement of some kind?
These considerations, while significant questions, have distracted us, allowed us to concentrate on our disagreements and divided us, as is all-too-often the case, along political lines. The fact that the Schiavo case has become a political one is truly pathetic. As Harriet McBryde Johnson, a South Carolina disability-rights lawyer, puts it, “The whole society has a stake in making sure state courts are not tainted by prejudices, myths, and unfounded fears—like the unthinking horror in mainstream society that transforms feeding tubes into fetish objects, emblematic of broader, deeper fears of disability that sometimes slide from fear to disgust and from disgust to hatred.”
The fact of the case is that while the line between life-sustaining and death-prolonging is often blurry, with the help of a feeding tube, Schiavo was not dying. An acquaintance of mine who survived throat-cancer has relied on a feeding tube for sustenance for many years. The idea that she should stop feeding herself and starve to death because she can’t swallow is ludicrous. If she were less cognitively or physically able, would it be best for her to be “allowed” to die?
As Johnson, points out, “Ms. Schiavo has a statutory right under the Americans With Disabilities Act not to be treated differently because of her disability. Obviously, Florida law would not allow a husband to kill a nondisabled wife by starvation and dehydration; killing is not ordinarily considered a private family concern or a matter of choice. It is Ms. Schiavo’s disability that makes her killing different in the eyes of the Florida courts.”
Some side with Mr. Schiavo, some with Terri Schiavo’s parents. Some argue about the involvement of Congress. Most of us say we wouldn’t want to live “like that.”
It is easy for most of us to distance ourselves from the severely disabled like Schiavo. In so doing, we easily fall into the dangerous tendency to make judgments that the “less than ideal” life is not worth living. If someone is unable to live a “normal” life, for whatever reason, and is not a “productive” member of society, we are too easily inclined to believe that death is a better option than life.
Many years ago, some friends of my parents adopted “Faith,” whose abilities are such that she requires a high degree of supervision and assistance. A host of physical problems are a part of her condition, resulting in endless consultations with doctors, trips to the hospital and medications over the years. As her care-givers, this couple has encountered much opposition to giving Faith medical care that would be standard treatment for a “normal” person. They describe themselves as her advocates and have fought for equal treatment standards in an environment in which the dominant view seems to be that for patients who fail to meet certain cognitive and physical standards, some medical treatment is not warranted.
We may be reluctant to admit it, but our cultural tendency is to make tacit determinations regarding who has enough “quality of life,” to make life worth living and who does not. Quality of life and death, also known as “dignity,” has become key. We make life and death decisions based on the amount of dignity a person is able to maintain in life. Under certain conditions, when life is not dignified enough for us, we choose “death with dignity.” In choosing death rather than life as the best option for those who differ too much from the norm, we are in danger of becoming a culture that privileges death over life.
We, the powerful, the comparatively healthy, don’t want to live “like that,” by which we mean artificially sustained, or powerless, or dependent. Is our utopian vision clouded by the powerlessness of others, which reminds us both of our inability to remedy the situation and of our fear of being next? Are we afraid of an “imperfect” life to the extent that we would rather end it, and convince ourselves that we have everyone’s best interests at heart?
Yes, health-care advances have opened a Pandora's box of bio-ethical problems. But in some cases, even though I recognize the complexity of the issue, I'm more alarmed than baffled.
Harriet McBryde Johnson is a South Carolina disability-rights lawyer and facing the distinct possibility that a congenital condition will force her to rely on a feeding tube. Her article on the Schiavo case can be found online:
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