In April 1994, First Things magazine published an article titled “The Sanctity of Life Seduced: A Symposium on Medical Ethics”. The article consisted of an essay by Daniel Callahan, then president of the Hastings Center, on the so-called “persistent vegetative state” and the issue of tube feedings. The article also contained several responses by some prominent ethicists.
I wrote my my own lengthy response to Mr. Callahan in a letter to the editor and, to my surprise, it was published in the August edition of the magazine along with his response to my letter.
Here is the published exchange:
An Exchange on Life and Death
While I was fascinated by Daniel Callahan’s article in “The Sanctity of Life Seduced” and the responses to it (April), I was concerned by the automatic acceptance of some facts and conclusions that do not hold up under scrutiny. As we all know, good ethics must be backed by accurate facts.
Take the “persistent vegetative state,” an offensive and dehumanizing term coined in 1972 and used to describe a level of brain injury that assumes the permanent loss of upper brain function. Proponents of not feeding the “vegetative” have long been frustrated by the lack of a diagnostic test for this condition and the surprising number of reports of “vegetative” people who recover, sometimes even to full mental function. This includes not only media stories about people such as Carrie Coons, but also studies like the one reported in the June 1991 issue of Archives of Neurology which found that 58 percent of people with a firm diagnosis of PVS recovered consciousness within the three-year follow-up interval of the study. Just as importantly, the researchers were unable to identify factors that could predict in advance which patients will ultimately wake up. It is hard to escape the conclusion that PVS has become a political, rather than a medical, diagnosis.
As a nurse who has personally witnessed the recovery of supposedly hope less patients, I am not surprised by these studies and reports. What has surprised and frightened me is the practical reality that many brain- injured people are no longer even given the chance to recover. For example, families have been told that their brain-injured loved one has a nil or virtually nil chance of recovery within hours after the precipitating event despite the lack of certitude. The false picture of Nancy Cruzan as an unmoving, unresponsive corpse hooked up to an array of machinery is a powerful and terrifying image to these families in crisis. It does a terrible injustice to people for us doctors, nurses, and ethicists to pretend to know things we cannot know- presumably in order to spare patients and their families potential further suffering. Have we become so callous about death that we can be comfortable with denying a person even a chance at recovery?
Another fact Mr. Callahan’s article fails to mention is that the controversy over assisted feeding has spilled over to other care and other conditions. For example, the non-technological spoon-feeding of the supposedly “vegetative” Christine Busalacchi was considered just as ethically useless as tube feeding by Fr. Kevin O’Rourke, the director of the Center for Health Care Ethics at St. Louis University . . . . It has proved both legally and ethically impossible to limit non-feeding to just the “vegetative.” The result has been the opening of a virtual Pandora’s box of ethically rationalized death decisions such as rationing and even, in some cases, physician-assisted suicide.
I also must take issue with the anti-technology conclusions of Mr. Callahan. I fear he forgets that medical innovations, both technological and non-technological, result from a desire to cure, treat, or palliate suffering conditions, not out of a desire to torture people. For example, feeding tubes were not invented over one hundred years ago to “cure death” or interfere with the peaceful, painless deaths our ancestors supposedly had. Feeding tubes were invented to relieve real cases of real suffering. For example, it would be maddening to watch a three-year-old starve to death because his throat was irreparably burned. It is thus not surprising that some compassionate person would invent a way to feed people who cannot swallow.
Mr. Callahan is right when he describes an “inability to eat” or “a failing desire to eat” as a part of the natural dying process. This is true, for example, in end-stage cancer when, as organs fail, the body cannot assimilate or excrete food and fluids. In these cases, we do not deny food and fluids, but rather we give people what little they desire or need. Feeding tubes are not instituted in these cases because food and water are futile and would cause more discomfort as fluids build up in the body. These people do not dehydrate to death; they die of their cancer.
However, it is a very different matter in situations of anorexia nervosa, obstruction, paralysis, diminished consciousness, etc. To equate the inability to walk to a refrigerator or to get food past a damaged esophagus, etc., with a true dying process is patently false. Moreover, while truly dying people experience little if any discomfort from a reduced intake, dehydration is a miserable condition for the non- dying. I often care for people with an admitting diagnosis of dehydration. Quite frankly, these people feel and look rotten. They are weak, frightened, and often confused. After successful treatment, they perk up and are elated with the change in their condition. We are not prolonging death, we are treating an uncomfortable condition.
After twenty-five years of nursing, dealing with bioethical issues on both a personal and professional basis, and serving on both medical and nursing ethics committees, I have witnessed a sea change in ethics from what is right to what is legal to now what is cost-effective . Even the newly sacrosanct ethic of family or individual “choice” regarding a right to die is fast eroding under the juggernaut of new ethical thought that redefines “futility” and agonizes over “wasting” health care resources. Witness the recent case where a young Detroit couple were replaced as guardians after failed attempts by health care providers to induce them to discontinue the treatment of their critically ill, brain-damaged two-month-old.
Recovery is now being redefined as full or near-normal return of mental and physical function, which flies in the face of the reality all of us in health care know and reinforces the unhappy bias that the disabled have long tried to dispel.
Mr. Callahan presents us a false choice between either an awful, technologically prolonged death or a simple, painless passage into the Great Beyond without “technology.” Instead, I have often presided at the deaths of people where the only medical interventions employed were to provide comfort. I have often silently blessed the discoverers of morphine, oxygen tubes, and air beds as I held hands with the dying patient and his or her family.
I have also silently wondered at the great gift of life as I fed, washed, and talked to the comatose, the confused, the severely disabled, and the truly dying. I have often sat with families and patients discussing do-not-resuscitate orders, the pros and cons of treatments, hopes and dreams, and inevitably, in some cases, how death will come. Not once did I feel that the patient or I was diminished in dignity or wasting health care resources.
Thus, I must take exception to Mr. Callahan’s view that health care providers are prone to a “technological seduction.” I am just one of many doctors and nurses who advocate against overtreatment just as strongly as we advocate against undertreatment. But medicine is not perfect; mistakes do happen. Just as some people die during a simple appendectomy, outcomes are often unpredictable. Decisions about technology are not automatically wrong if the outcome is less than hoped for or expected.
Rather than fighting a supposed “technological seduction,” I submit that the biggest problem in ethics today is a “death seduction.” I suspect that it is a fear of loss of control and a disdain for dependency, as well as a fascination with cost/benefit analysis, rather than an acceptance of inevitable death that leads many ethicists to support the so-called “right to die.” (Oddly, the development of newer and exotic technologies such as in vitro fertilization have been virtually immune from a similar cost/analysis and criticism of technological seduction.)
Sadly, Mr. Callahan’s views inevitably distort the reality of inevitable death for all of us into a “duty to die” for some of us.
Nancy Guilfoy Valko, R.N.
St. Louis, MO
Daniel Callahan replies:
I find Ms. Valko’s letter somewhat baffling, uncertain whether we disagree as much as she implies or whether I have made the factual errors she attributes to me. She begins by talking about the persistent vegetative state, noting that there have been many mistaken diagnoses. But at no place in my article did I discuss the special problem of diagnosing the condition. In fact, I fully agree with her about the many mistakes that have been made, and no less agree that it’s wrong to give up on patients too quickly; of course every patient should have a chance at recovery.
I think she is herself wrong, however, to say that “PVS has become a political, rather than a medical, diagnosis.” The problem is that any diagnosis of the syndrome (it is not a specific disease) must be probabilistic and based on indirect evidence. This is also true of Alzheimer’s Disease, definitively diagnosable only in a postmortem autopsy-but no one doubts the existence of such a condition. As Ms. Valko herself says at the end of her letter, “medicine is not perfect; mistakes do happen.” Why does she not apply her own standard in the case of mistaken diagnoses of PVS, instead of implying it is a fictitious condition?
It is quite true that I did not mention that “the controversy over assisted feeding has spilled over to other care and other conditions.” I was not trying to write an article on the full range of conditions under which it might, or might not, be justified to terminate treatment. I have done that in The Troubled Dream of Life and, with her, I do not believe it right to limit feeding under any of the circumstances she mentions. I also agree that a person who cannot walk to a refrigerator is not dying and I have explicitly denied there is evidence to show we are “wasting” money on the dying (in Setting Limits , pp. 130-133).
I do not believe that I come to anti-technological conclusions. Technology can not only helpfully and validly save and extend life, but it can also provide many means of comfort for the critically ill and dying. My concern is our culture’s obsession with technology, which too often leads us to use it unthinkingly and insensitively. As I said in the article, “If technology threatens to leave us worse off, and we nonetheless feel obliged to use it, we have then indeed become its slaves.” I also argued that “doctors should feel as great an anxiety that a patient will die a poor death from technological excess as the present anxiety that the patient will die because there is too little technology.” When she says that she worries both about undertreatment as well as overtreatment, it seems to me that Ms. Valko and I are not that far apart.
Finally, I find no basis whatever in the article I wrote for saying that my “views inevitably distort the reality of inevitable death for all of us into a ‘duty to die’ for some of us.” I reject totally the idea of a duty to die, and always have. It is unwarranted and insulting to attribute that view to me.