I wrote an essay in 1998 for one of my graduate classes that dealt with legal and ethical issues in my profession. At the time I was battling an episode of major depression which was made more acute that year by: a significant loss, and an unwisely created emotional attachment to someone completely unavailable as I grieved that loss.

I’m pondering issues of life and death again, in part because my fiancé’s father is gravely ill, and also because transitions of any kind — even good ones, such as my move — bring reminders of the ultimate passage we humans face. I’m applying to volunteer at The Centre for Living With Dying. Answering the application questions reminded me that I’d written a paper on the topic. Since a blog is the writer’s forum for inflicting expounding one’s views, I’m laying it out here. It’s very long (don’t say I didn’t warn you). I’m also closing comments due to the personal nature of this essay. Comments can be emailed to me directly. Without further ado…

I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite well that just to be alive is a grand thing.

–Agatha Christie

On my bleak days, when I struggle with my own depression, I cling to this quote as a reminder that soul pain is deceptive. Having sat with the darkness of depression, and having managed to move through it into periods of light, my desire is to automatically cling to the concept that being alive should be promoted at all costs. Reading Dax has thrown all of this into question. In addition, the poignancy of that quote has resonated in a very personal way recently with regard to a decision and a personal loss. In order to explore Dax, I want to set the stage with my experience.

Two and a half years ago, I adopted a six-month old purebred Siamese cat from a woman who suddenly discovered her allergy to cats. Shortly after I brought him home, I learned he had a destructive eating behavior. Namely, he would literally consume wool, spongy cotton, socks, underclothes, hosiery, bits of fuzz, used tissues, and Q-tips. He would either regurgitate or excrete (with difficulty) what he consumed. My vet said it was a genetically inherited disorder and that the solutions were to give him a sedative, euthanize him, or keep a clean house. Since he was young and incredibly affectionate, I decided the third option was most acceptable and hoped he would grow out of it. This was a most unusual cat. He would sleep under the covers as long as I was in bed, lick my face in the mornings, play fetch with a foam ball, and jump into my arms or onto my back from the floor. He was incessantly needy, always wanting to be on me if possible. From the moment I drove my car up at home, he would vocalize his welcome; when at home, if I would sit on my porch, he meowed constantly at me through the windows.

Last year, when I returned to work in December, he began manifesting his distress at my absence by eating the kitchen sponge. He regurgitated it, and I strategized ways to reduce the temptation. He also took to eating the bindings of my books. Increasingly, his high-strung nature and demand for interaction was something I could not fulfill. My life is such that I am hardly home. A few weeks ago, I came home to find the couch chewed. This alarmed me; I cannot hide the couch in the closet or hang it up off the floor.

Having realized I was at the end of my ability to deal with it, I began to search for a solution. My vet thoroughly reviewed this and gave the diagnosis of OCD–obsessive compulsive disorder. The solution, he said, would require an EKG, blood tests, use of psychoactive drugs, and behavior modification. He advised me that the medication would have side-effects, such as lethargy, and that it could take weeks before this would become effective, if at all. This very same vet who lightly suggested euthanasia when this problem first manifested now declared that he would not consider it unless the animal is a danger to humans. I searched for other solutions, since I had grave reservations about the fact that I cannot be around for behavior modification without stopping all my life activities, about putting an animal on a medication that would significantly alter its personality, and about the general cost in relation to my own limited income.

I tried to locate a home, but the animal rescue leagues were full. The Humane Association would not take him because with this problem, he was considered not adoptable. I would not abandon him or lie about his problem, because I did not want to put him in a situation where he might be abused or abandoned later. My vet suggested making him an outdoor cat even though declawed, and that experiment failed miserably when he was attacked within two hours and bitten five times. Putting him in a portable kennel was unthinkable, because merely shutting him in the bedroom drove him crazy. I called a number of other vets, none of whom would euthanize him. One said she did not want to be known as the Kervorkian for cats. Through this entire ordeal, I was sick with grief, angry at the inferred judgment from vets, and desperately wishing I could find a better solution.

In the end, on March 26, I went alone to the Town Lake Animal Shelter. With dread-heavy limbs, I presented my little friend to them. They took him back and would not permit me to be with him. The stress, which had been building, was triggered by the finality of this act, and I could not withhold the sobs as I sat there. I wanted to run back, and yet knew that any second it would be too late to retrieve him alive. I had committed to this. They brought him out wrapped in a towel I brought. I carried him to my car and blindly drove home. When I unwrapped him, his body was so soft and still. Grief washed through me as I realized that I, as surely as if I had held the needle, had killed him. I wrapped him in a wool sweater he used to love to try to eat when I wore it, along with some of his toys, a can of his favorite cat food, and a photo of myself with a farewell note. I then drove to the house of a woman I have never met–to whom my sister-in-law referred me and who tried to help me locate a vet–who had offered her backyard as a burial site. She even dug the hole and then left her home so I could say good-bye privately.

In the weeks since this event, I have moments of relief and peace, and moments of acute sadness. I feel as though a part of my body is missing. As I reflexively look for my cat in places he used to wait for me, or listen for his steps, I feel the palpable emptiness in my apartment. I wrestle the ambivalence of taking the life of a being who was not suffering physical pain, who was not terminally ill, who had not lived a long, full life. I experience the impotence of having failed to give him what he needed, and at being unable find someone in the community willing to take him in. I am angry that the veterinary community preferred to protect their reputation than to support my decision and provide the means I needed. I resent that they, while refusing to offer their help free of cost, insisted that I follow what they prescribe as the moral action to take. I take responsibility for having ended a life, and I will carry that with me until I die. When I held his dead body, I wondered how a being that is so active and vital one moment can be so quickly extinguished. Where does being go? It was an irrevocable and irretrievable act. My own spiritual beliefs have been in flux since last year, and I have no comforting paradigm on which to rely.

All of this agony over a “mere” animal. How does this translate to Dax’s case? The questions which present themselves are so numerous that I can only begin with where I first find a foothold. I want to be able to declare that Dax should have been allowed to die. I wish I had a clearly defined argument to support this. But I do not have this. I want to be able to state a generalized position, such as “Life should be upheld at all costs,” or “Autonomy should be honored regardless.” But I cannot. I am not a lawyer or an ethicist, and while I can be analytical, in this case it is my heart that I must listen to.

On one hand, I find the insistence on treating Dax against his wishes repugnant to that part of me that wants control over my own life. This man, through the happenstance of being in a wrong place at a wrong time, suffered excruciatingly. Because the medical community can treat such burns, they insisted they must. Dax did not want to live. The self he knew existed no longer. The incomprehensible pain he suffered was not his choosing; it was forced on him. Part of me declares that he should not have been made to suffer simply because we can prolong life and re-create people. Yet, even though years ago he would have died, and we would have made this as comfortable as possible (and would have acted ethically in doing so), the question arises: is it ethical to not treat an injury when one has the capacity? Clearly, if the patient wants to be treated, it is unethical to deny this. But when the patient wants to refuse, is it ethical to override his wishes? This depends, I suppose, on what we put first: the general principle called Life, the patient’s desire, or the community’s desire.

Presuming that my cat could decide, he would have probably expressed a desire to live. I overrode that. Had he been human, I would be guilty of murder. (In a general sense, I still am. However, we value life differently depending on the nature of that life. And perhaps we value the act of ending it depending on the motivation of the killer. Had I wantonly and destructively killed my cat, that would be heinous; whereas, my actions were taken after I sought other solutions, and I acted with extreme reluctance. Therefore, my actions may be seen as regrettable but morally acceptable.)

When I look deeper into myself and examine my motivation for wanting to support Dax, I am unnerved. Underlying my desire to support his autonomy are several questions: Do I think that a person who is burned horribly, to the extent of losing his hands, sight, and hearing, and who is, in turn, repulsive to my own sight–is that the real reason I support his wish to die? Do I agree with him that his life is worthless because it has drastically and irrevocably changed? Does he have nothing to offer us now that he is no longer whole? The reason I cannot support his desire to die is because I must guard against acting based on those reasons.

In other words, my intentions are not pure. If I were to support Dax’s wish to die, I would be doing so in response to my own fears about what my life would be like were I in his shoes, and in response to my own discomfort about bodies that do not fit the norm. I do not want to take the position that life loses value when our bodies no longer serve us. Largely, this is because I believe that life consists of more than the body. Humans have something to offer existence regardless of their ability to be productive. In fact, because our culture is so focused on functionality, our support of people’s “right to die” may spring from the underlying belief that people who are “useless” should not make demands on us. It is a small leap from supporting people who express a desire to die to removing that choice from individuals and ending lives of those we deem valueless.

It strikes me as ironic that Dax, having been thwarted by his mother, lawyer, and doctors in his desire to die, is using the life they salvaged to argue his position. Had they granted him his wish, he would not be here to shake us up with his stance. And I view this as a gain. As thorny as this issue is, Dax is our catalyst. Perhaps it is a case of Dax coming to terms with his new self, and finding value in life in the aftermath. He argues that he should have been allowed to die, but he is not now attempting to end his life. In fact, he apparently has found purpose and value in life.

Another concern arises from supporting Dax’s case. If I say yes to Dax’s request, what do I do when, for example, someone who has become a quadriplegic from a car accident makes the same request? If I agree that Dax should be able to end his life because he deems it not worth living due to a radically altered body, then I must hold this position for all. In fact, this reminds me of a movie in which Richard Dreyfuss plays a sculptor who becomes a quadriplegic, and because he has lost use of his hands, wants to die (Who’s Life Is It, Anyway?). The Dreyfuss character argued eloquently that as an artist, his body was the means through which he expressed his existence, for which he was created. Since he was so thoroughly this, and his means of expression were extinguished, he argued his life could not be enjoyable to him nor anyone else. The conclusion of the movie escapes me at this moment, but my sense is this protagonist won. Yet, I also recall the story of Joni Eareckson Tada, who as a teen became a quadriplegic from a diving accident. Through this devastating loss, she survived the pain, depression, and radical limitations imposed by paralysis and, through a deeply-held Christian belief, has proceeded to recreate a vibrant and fulfilling life as an artist, writer, speaker, and wife.

As I write this, my own position becomes clearer. In the case of treatable illnesses and injuries, I cannot willingly support the termination of life. Yes, I realize that I speak from a position of not having suffered extreme physical pain, but I do not believe one must experience every aspect of life in order to express a position on it. I believe that being extends beyond our body. We humans have a natural response of repulsion to that which we deem grotesque in the human body.

I’m not certain why. From a religious perspective, one could say that this is indicative of our mortal flaw. We reject others because we fail to move beyond the superficial, and because we judge and are selfish. From an evolutionary viewpoint, this rejection could be an evolutionary response, where survival of the fittest may have been effective in human physical progression and mental development. Perhaps the paradigm is irrelevant. I do know that we are now self-aware and self-reflective; we are not animals mating and surviving. Because we possess intellect, but carry within certain physical impulses (such as fight or flight), we must fight that intrinsic desire to push away that which offends our senses or makes us uncomfortable. When we support the idea that one person’s body renders his life useless and respond to his wish to die, then we are on dangerous ground.

So now I have apparently carved one foothold for myself. I have identified that human life is precious, and that human life has value beyond the body. Now I must qualify this and state some exceptions. A person who is in an unconscious, persistent vegetative state that is irreparable and degenerative, who is unable to interact at all with the world, is not, in my definition, alive. To sustain a body by artificial means of a respirator, dialysis, tube feeding, and other extreme measures is to force life where it naturally would not exist. I believe in cases such as this, the soul, which is inactive within the body (since the brain is dead), is not entirely able to release itself until the body is at rest. Where does such a soul linger? I can only speculate. As one who was raised Catholic, perhaps this is a modern example of purgatory. To keep a body alive when consciousness is gone is degrading and makes a caricature of life.

Another case of an exception regards the issue of terminal illness. I realize that the definition of a terminal illness is a thorny one. First, what qualifies as a terminal illness? Generally speaking, I refer to illness in which a person has been given six months or less to live. I am aware that a prognosis is not engraved in stone. People do not die according to a schedule; they sometimes surprise doctors and themselves. (In fact, a prognosis in one case might influence one person to fight less and die earlier, while another might respond by fighting harder and living longer. Belief in the words spoken by those we invest with authority can alter our lives, and thus it is wise to remember this.) Second, what type of illness qualifies as terminal? Often it is cancer, but there are other debilitating diseases. Even in this case, I am tentative in my support of suicide. I believe at some point aggressive treatment should end, and that the patient is the best judge to decide. She should be given that control and all efforts should be made to make the dying as comfortable and possible.

A third area that I believe deserves more contemplation regards mental illness. We find physical illness easier to legitimize, both in validating its existence and in considering euthanasia; we stigmatize mental illness. We fear it because we do not understand its causes, and because those suffering certain disorders may express themselves strangely. Yet we automatically assume that because a person is mentally ill, if he expresses his desire to end his life, it is a symptom of the illness. We then automatically oppose suicide; if the patient cannot assure us he will not attempt suicide, we commit him in a hospital until he convinces us he will not kill himself. The truly suicidal patient has little alternative to honestly explore his illness and his life.

It is quite possible that a schizophrenic patient, for example, may want to escape the torture of hallucinations and the destruction the illness has wrought on his life. The medication which controls the illness can render equally debilitating side-effects and can even kill the patient. Yet we insist that someone with a mental illness should not be supported in their desire to die. I suggest that such people need someone willing to sit with them and empathetically explore whether their lives are worth living. I am not suggesting here that people with mental disorders should automatically be encouraged to kill themselves. I am, however, recognizing that a knee-jerk reaction to the issue does not resolve it, and that we might offer better treatment if we would examine the cultural prohibition.

While I have explored the validity of upholding life, and I am also aware that I need to question my perception of death. Our culture is deeply afraid of death. We cling to life, regardless of our paradigm. Scientists, generally an agnostic community, hold that this is the only life we know of, and therefore we should maintain it. Western religionists, believing in a God who is supreme creator, believe we should not act as God; only God can give and take life. In this paradigm, we are permitted only to save lives. But what do we do when we have technical ability to maintain life “beyond the pale?” I wonder if we are in danger of playing God when we insist on prolonging life by machines and medicines. I believe there is a distinction between accepting death and promoting death. In our effort not to do the latter, we are guilty of refusing the former, as well. That we now have increasingly sophisticated medical techniques serves only to entrench us in our avoidance.

In sum, right-to-die activists are attempting to address the thorny issue of how we avoid playing God over other peoples’ lives and in doing so prolong their agony. The danger lies in the fact that we are equally vulnerable to the temptation to play God by ending lives of people we view as burdensome. With regard to my own life, I do draw a distinction between the lives of other animals and humans. I maintain that my responsibility at a pet owner is to treat my companion lovingly and with dignity. And yet, as it is my responsibility to provide for this dependent being, and as its life is qualitatively different from human life, I maintain my “dominion” over it. Animals, no matter how much we anthropomorphize them, are not people. To animal rights activists my position would be perceived as “homocentric” and arrogant. Maybe so. Yet the pragmatist in me says that promoting the life of an animal at any cost to myself, and without knowing whether that animal is truly benefiting because he is unable to communicate directly, is not an acceptable stance to me.

With regard to Dax, I maintain that I am grateful his desire was not fulfilled. I see Dax’s existence as a triumph, not only of medical expertise, but of the mysterious, indomitable human spirit. His horrific experience demands much of him–creativity and adaptability among them. His existence shakes me out of complacency, forces me to recognize my own prejudice and shallowness, and beckons me to move beyond my notions of “quality of life.” I do not see it as contradictory that Dax advocates for his right to die. I do believe we all have a cosmic purpose, and that the traumas we experience can mature and deepen us, and prepare us to serve others with compassion. In the inexplicable evils we experience, some good can be salvaged. I believe perhaps Dax’s purpose in life is to raise these issues, and to catalyze us into exploring our well-accepted notions of life and death.

References:
Kliever, L.D., editor (1989). Dax’s case: Essays in medical ethics and human meaning (1st ed.). Dallas: Southern Methodist University Press.