Most likely, Karen Ann Quinlin, Nancy Cruzan and Terri Schiavo assumed they would survive their parents and never gave sustained thought to the alternative. Yet after 22-year-old Quinlin fell into a “permanent coma;” after 24-year-old Cruzan was involved in a motor vehicle accident and resuscitated into a persistent vegetative state; and after 26-year-old Schiavo suffered cardiac arrest and massive tissue death in her blood-starved brain, each was the object of prolonged legal proceedings.
In each case, attention focused on what these young women would have wanted in these unforeseen circumstances, something they likely considered only in passing.
And yet the courts are not the only way out of these end-of-life conundrums. Another way begins with thinking seriously about what each of us would want the last day of our lives to be like:
Would I want to die in the hospital or at home?
Would I want to die tended by strangers in white, starched uniforms or by familiar faces of family and friends?
Would I want my dying life to be prolonged past my capacity for simple joys or for death to arrive promptly?
Like most Americans, I would want to die at home, surrounded by family and friends, and relatively quickly, not having been deprived of too many capacities.
If I could choose my last day, it would be springtime when my garden is preaching the resurrection or else autumn when leaves remind me even dying can be colorful and natural.
I would want to die in my hundred-year-old, midtown Memphis home, whose rooms evoke glad memories of my grandmother’s home in Washington, Ga.
I would want to die tended by Jonathan and Laura, my nephew and niece, who have been my growing delight. Though I would not want to burden them for long, I would not dread a chance to see my love come full circle.
And yet the system defaults push the vast majority of Americans to die in hospitals or nursing homes, often relatively isolated from family and friends, and only after prolonged and increasingly invasive technological assaults on their inevitably dying bodies.
In order to think and speak about these issues, we need to understand what dying too-often is like and imagine that living until we die can be different.
What are some of the issues we should think through?
Perhaps the most troubling is what do I fear most about dying? We each have our own worst fear. For some it would be fear of dying alone or among strangers; for others, to live no longer recognizing family and friends; for still others, the inability to communicate. For some their nightmare would be to die in intractable pain, or to die wholly dependent on others for personal care, or else to be trapped in a permanent coma. Speaking openly of our own hidden fears can alert others to our aversions, those circumstances we would avoid if at all possible.
Equally important is the question of how we want to live until we die. These are deeply personal matters that should reflect our own individual values.
When my father was dying, my mother and paternal grandmother were at odds over what experiences they wanted for him at end of life.
My father had suffered from debilitating headaches for years, so my mother wanted to spare him further pain, even if that meant sedation.
My grandmother and father had an often-tense relationship, so she wanted him alert so they could say what they had not said in a lifetime. His liver cancer had spread to his brain and he was mentally altered, so that hope was unrealistic.
Still, knowing what Daddy would have wanted could have eased the conflict.
My father’s last words to me were, “You two are running your mouths like a couple of red-assed mules!” He was frustrated because a nurse and I were pressuring him to drink some fresh-squeezed orange juice. It was the only nourishment he had been willing to take in the last few days.
As he was dying, my father taught me that forced feeding can be a burden, when appetite is absent and drink just provokes diarrhea. After that, we asked if he wanted anything. He said, “No,” and we respected his wishes.
I visited my aunt Anne in the hospital about two weeks before she died. She had recurrent colon cancer and her gastrointestinal tract was blocked. Her nasogastric tube was set to suction the bile accumulating in her stomach. She could swallow but not digest food, and the constant suctioning would just bring up anything she swallowed.
Anne understood that, yet she still asked me to feed her a bite of the dressing on my hospital tray. I fed her as you would a baby, as she had fed me in my infancy. She could not taste it, whether because of the smothering taste of bile or because she had lost that sense.
Then Anne asked for a cigarette–I do not smoke but she had a stash in her bedside table. And so we shared in this last communion over a morsel from my tray, sealed with a puff from a cigarette lit in my lips and pressed to hers.
For some, token feeding symbolizes solidarity with family. For others, any feeding near end-of-life is experienced as a burden. I cannot tell you what it means for you.
For some, medically provided nutrition and fluids for the permanently comatose are perceived almost as a sacrament that works ex opere operatus, apart from any response from the recipient.
Others see indiscriminate reliance on feeding technologies as a type of magical thinking that misjudges our human power to give life to the dying, at least not abundant life.
Some judge nutritional technologies as valuable only if they contribute to a patient’s own goals, for example, the goals of gaining strength and returning home to relatively independent living. These would welcome a therapeutic trial, a short-term test to see if the patient would experience benefit from the technology.
Others see dangers in any appeal to quality-of-life considerations. For them, all life should be protected (and prolonged). These critics are right to point out that our value as human beings transcends any merely instrumental value. We truly are more than what we can do. The dying are far more than just “useless mouths.”
I appreciate this. I continued to value my grandmother after she regularly confused me with my uncle Jim. Indeed, I valued her even after she was unable to converse with me. She still seemed to enjoy me, and would sometimes pat my leg as she had when, as a child, I would share her big chair.
During the first years of her dementia, I would sometimes stop at Randall’s Market to buy barbecue sandwiches or drive through the Big Chick for chicken breasts that I would share with Grandmother. She devoured these treats, and I took pleasure in her experiencing some simple joys. I am a Southerner; no one can tell me I do not grasp the importance of food or the significance of sharing in a meal with her.
However, medically provided nutrition and fluids are a different matter. With such there is no pleasure of taste and texture, no inviting aromas from the kitchen, no fellowship around the table. Whatever nutrition and fluid technologies may be, they are not ordinary eating and drinking. Critics of quality of life often err by neglecting to consider the burdens imposed by medically provided nutrition, both to patients and to their families.
A couple of months before her death, my grandmother lost the ability to swallow solid foods. She had been hospitalized for surgery to correct a painful bowel obstruction, an intervention that could improve her quality of life.
Her surgeon had planned a second surgery to correct a previous colostomy and rid her of the colostomy bag that caused her constant worry. While undergoing anesthesia, she barely escaped a heart attack and surgery was aborted. After that she could only be fed soft foods with some effort, but began to lose weight.
My grandmother had suffered from senile dementia for several years. During her last hospitalizations, she could not understand the need for IV treatments and attempted to pull out her line. Recalling this, we feared if we permitted placement of a feeding tube, Grandmother would try to dislodge it. We could not bear the thought of her living her remaining days a prisoner in physical restraints. Recalling her last reaction to anesthesia, we also feared Grandmother would not survive surgical placement of a PEG tube.
So we refused to permit the surgery, and her surgeon did not understand why. We did so precisely because we cared about the mother and grandmother who had showered us with love. We judged that this medical intervention would not further her interests. It would not allow her to live the way we wanted her to live before she died.
Still, our burden would have been lightened had we been able to say, “Grandmother said what she wanted.”
Many patients’ worst fear is how their dependency will affect their families. If some patients would freely choose not to impose grave burdens on their families, and if we ignore the value they place on their families’ wellbeing because of an ideological commitment to artificial feedings under all circumstances, have we not reduced those patients to means to our own ideological agenda?
Again, I cannot decide what value artificially provided nutrition and fluids holds for another, but I must respect her or his values when they are voiced. As love comes full circle for me, I trust that Jonathan and Laura will understand my values and respect my wishes.
Christopher Church is professor of philosophy and religion at the Baptist College of Health Sciences, chair of the clinical ethics committee at St. Jude Children’s Research Hospital, and chairman of the board of the Mid-South Center for Biomedical Ethics, a regional coalition of hospital ethics committee members and others interested in clinical ethics.