The contemporary American approach to end-of-life care is captured in an essay by Atul Gawande, M.D., in The New Yorker (8/2/10) entitled: “Letting Go! What Should Medicine Do When It Can’t Save Your Life?” Dr. Gawande, a surgeon at Boston’s Brigham and Women’s Hospital and a professor at Harvard Medical School, regrets what is occurring in medical practice. Yet he feels helpless to resist.
In his beautifully written essay, Dr. Gawande tells the story of Sara Monopoli, a young woman who was eight months pregnant with her first child when doctors diagnosed her lung cancer. Her husband assured her, “This is going to be O.K. We are going to work through this.” The next day she delivered a healthy baby. That same day her oncologist informed Sara that the non-small cell lung cancer had metastasized. Her condition was non-operable. There was, however, the possibility of chemotherapy. She was started on an experimental drug that targets a gene mutation found in females with lung cancer.
Tests subsequently revealed Sara did not have the mutation that drug targets. She was then changed to a more standard drug. That drug also failed. A third regimen was tried, but it too failed to slow the tumor. All known interventions, including the use of a drug in a Phase I trial, had been utilized without success. Dr. Gawande then asks: “What do we do now?” The question was not about science or medicine. It was, “What does the patient want?” Patient autonomy, for weal or woe, has become the fundamental value in American medicine. It trumps all other values. Gone is the tradition that prevailed from the time of Hippocrates until the middle of the 20th century that the physician determines what should be done in the face of an overwhelming disease.
How did we get to this state of affairs? The late Edmund D. Pellegrino, M.D., described in an essay in The Journal of the American Medical Association what he labeled “three eras of medicine:” Hippocrates to 1960; 1960 to 1990; 1990 onward. In the first era physician paternalism prevailed. The doctor decided what was to be done. In later centuries the physician was readily identified by his small black bag. It contained everything the physician needed to practice—very little. Little could be done and little was attempted. Most people succumbed to death at an early age from an intractable infection. In that era, the rules for the practice of medicine were relatively simple. They were laid out as far back as the Hippocratic Corpus: Alleviate suffering, treat disease where possible and do not impose treatment on the patient “overmastered by disease,” because in such cases medicine proves powerless.
Three developments occurred in the years 1960 to 1990 that changed medical practice: technology, third-party payment and loss of trust in institutions. That final factor led to the rise of rights language. The predecessor of the emphasis on the rights of patients is found in Justice Benjamin Cardozo’s opinion in the landmark Schloendorff case in 1914 that “every human being of adult years and sound mind has the right to determine what shall be done with his own body.” The Schloendorff ruling recognized the competent adult’s right to refuse an unwanted medical intervention. It did not confer on a patient the right to determine or demand a treatment, nor was there an obligation on the part of the physician to honor such requests.
Dr. Pellegrino noted that the rise of autonomy transformed the doctor-patient relationship from a joint venture of trust and dependency into a commercial model in which the patient (or proxy) alone determines what is to be done. The furthest reach of “autonomy” is found in several recent cases in which parents requested and physicians continued life support on an infant born with anencephaly, a condition in which the infant has no brain, or congenital dwarfism such that the child’s small rib cage prevented lung expansion, thus causing suffocation. The most extreme cases were those of a brain-dead child whose parents refused to accept the diagnosis and insisted on continued ventilator support of the child. In all of these cases the treating physicians believed, much like Dr. Gawande, that absent a court ruling to the contrary, they had no option but to follow the treatment decision of the mother.
The morphing of the right of the competent patient to decline an unwanted medical intervention into the right to be provided whatever medical intervention—indifferent to efficacy or cost—the patient (or proxy) demands results in what Dr. Pellegrino described as “the chaos” of present day health care delivery in the United States. It also led doctors like Dr. Gawande to lament the fact that when physicians today confront patients and families like Sara and her husband, who believe that there is a technological fix for every medical problem, they feel powerless to resist their demands.
The Catholic Mindset
The assessment that patient autonomy is the dominant value in medical practice as well as in bioethics is correct. The Catholic approach to bioethics operates out of a different mindset. Richard McCormick, S.J., the most influential Jesuit moral theologian of the late 20th century, noted in an essay entitled “Bioethics: A Moral Vacuum” (America, 5/1/1999) that in our age autonomy has consumed the entire range of bioethics. In doing so, he argued, we have excluded from consideration those goods and values that make choices right or wrong. But those are precisely the factors that make bioethics a moral enterprise. When the rightness or wrongness of a decision is reduced to an individual’s choice, the result is autonomy run amok.
This is captured in a statement by Jack Kevorkian, M.D., (sometimes called Dr. Death) on physician assisted suicide: “In my view the highest principle in medical ethics—in any ethics—is personal autonomy, self-determination.” His approach gives no consideration to the impact of individual choice on family and friends, the medical profession or society.
When contemporary bioethics talks about patients as autonomous persons, it is mostly talking of a pipedream. Such talk leaves the impression that desperately ill and dying patients are in Olympian control. But as we have all experienced, even with something as minor as the flu, illness inevitably means dependence. We rely on others for whatever we need. This is all the more true of the seriously ill.
Lost in the clutter of clinical details are the “big-picture” issues that concern the patient. Medical costs, for example, have an enormous impact on the sick. But that issue is generally passed over in silence. What are the patients’ fears, hopes and doubts? These rarely appear in the medical chart. Clinical details are noted, but to paraphrase T. S. Eliot, do we measure out our lives in data?
An emphasis on bioethics that reduces the patient to medical details or to the patient’s desires—ignoring big-picture issues like the common good, distributive justice and the spirituality of the patient—misses an understanding of who the patient really is. To achieve that big picture, Catholic moral theology insists we focus on the patient viewed in all his or her complexity—physical, financial, social and spiritual. Patients are not reducible to organ systems, like the heart, liver, lungs or kidneys or, worse, to biochemistry. Rather, we ought to look at what Paul Ramsey famously called “the patient as person” (2002).
A Catholic approach to bioethics begins not with the patient’s autonomous will but with a theological understanding of “the meaning, source and goal of life.” This is seen in Father McCormick’s landmark article in America, “To Save or Let Die” (7/7/1974). Although the essay was published simultaneously in a medical journal (JAMA), it is replete with theological presuppositions, language and conclusions. The article is a commentary on a legal case in which Judge David Roberts of the Maine Superior Court ruled that if a patient has a medical need and there is a medically feasible response, that medical treatment must be provided. In Judge Roberts’s words, “The most basic right enjoyed by every human being is the right to life itself.” That pro-life stand might be taken by many as the orthodox Catholic approach to life-death decisions. In utterly unflinching language Father McCormick rejected that reading of the Catholic moral tradition. In his words, such a standard is nothing short of “idolatry.” Human life, he tells us, is a gift of God given for a limited purpose. Its raison d’etre is not our earthly life but eternal life. As Father McCormick understood the Catholic moral tradition, it is an attempt to formulate a balanced middle ground between “medical vitalism” that acts to preserve life at any cost and “medical pessimism” that kills when life seems frustrating, burdensome or useless.
Both alternatives, in Father McCormick’s view, are idolatries. In support of that opinion he quoted Pope Pius XII’s famous allocution to the International Congress of Anestheologists, entitled “Prolongation of Life” (Nov. 24, 1957), stating that we are normally obliged to use only ordinary means to preserve life. In over 500 years of consistent Catholic moral thought, the terms ordinary and extraordinary refer not to hardware or technique but to moral obligation. Ordinary are those things one is obliged to do. Extraordinary are those things one may do but is not obliged to do in order to save one’s soul. Failure to act appropriately is a sin. The punishment for such failure, if not absolved, is eternal damnation. The question then put to the moral theologians was, What exempts an individual from the obligation to undergo a medical technique? The response was that one would be exempt if the treatment were too costly, too burdensome or too painful or if the procedure did not offer a reasonable expectation of benefit to the patient.
A Cog in a Machine
The 1980 Vatican “Declaration on Euthanasia,” aware that today the terms ordinary and extraordinary are confused, misused and abused, proposed substituting “proportionate and disproportionate” burden and benefit to the patient. The opening statement of Part IV of the declaration applies that analysis to end-of-life care: “Today it is very important to protect, at the moment of death, both the dignity of the human person and the Christian concept of life against a technological attitude that threatens to become an abuse.” An example of such abuse would be the intensive care unit described in Dr. Gawande’s “Letting Go,” where a patient, tethered to a ventilator with tubes coming from every orifice, is reduced to little more than a cog in a machine.
More morally problematic in today’s world of high tech medicine is the notion that “once we start, we cannot stop.” It is believed by some that while it might be acceptable to withhold certain treatments, once they have been initiated it would be unethical to shut off a ventilator, stop dialysis or withdraw artificial nutrition and hydration. In the now famous 1973 Quinlan case, for example, both the attorney general of New Jersey and the local district attorney denounced the proposal to withdraw a ventilator from the patient in a persistent vegetative state as state-sanctioned murder.
In the subsequent case, Barber (1993), the Los Angeles district attorney brought first degree murder charges against the chief of surgery and the chief of medicine at Kaiser Permanente Long Beach Hospital for removing, at the request of a patient’s wife and seven children, a ventilator and then a feeding tube from a man for whom the physicians had no realistic expectation of restoration to cognitive functioning existence. After a preliminary hearing, a judge dismissed the charges. The district attorney appealed. The California Court of Appeals upheld the dismissal. It framed the question before it thus: “Does a doctor have a duty to keep his patient alive through forced respiration and nutrition?” It responded “No.” In doing so the California Court of Appeals determined as a matter of law that artificial respiration as well as artificial nutrition and hydration—are extraordinary means of medical support. Further, it ruled that the decision to withdraw support should be determined in terms of a benefits-versus-burdens analysis as seen from the patient’s perspective. Since the patient had indicated he did not want to be maintained by extraordinary means, the court ruled the physician had no duty to provide such measures.
A Jesuit Approach
The Catholic approach to these cases is “back to basics.” We reflect on such fundamental questions as “Who are we?” and “Why are we here?” The answer to these questions is found in the old Baltimore Catechism, a standard Catholic school textbook from 1855 to the late 1960s. The responses found there are: “God made us” and “God made us to know love and serve him in this world and to be everlastingly happy with him in the next.”
Unpack those penny catechism statements. What do they imply with regard to use of medical interventions to prolong the life of a dying patient? The purpose and goal of life is not the mere prolongation of biological existence. It is rather the attainment of everlasting life with God in heaven. How is that goal achieved? Scripture tells us it is based on “love of God and love of neighbor.” Father McCormick’s insight in his now classic 1974 essay is that to achieve that goal one must have the capacity to relate. That capacity is severely truncated if all one’s energy is expended on clinging to life in an intensive care unit.
When, one might ask, do life-supporting technologies become so burdensome as to cease to be a moral obligation? The use of an I.C.U. makes sense if it serves to restore the patient to a cognitive functioning, integrated existence. It makes no Christian or human sense when it functions as a high tech hospice. Such a practice, in the words of Ivan Illich’s Medical Nemesis, is “a world gone mad.”
The Jesuit approach to bioethics goes by the sometimes pejorative term casuistry. As Albert R. Jonsen and Stephen Toulmin demonstrate in The Abuse of Casuistry, casuistry is not, as Pascal characterized it, a sly way in which Jesuits twist things to get whatever result is desired. Rather, it is the application of basic theological or philosophical principles to cases or actual situations to discern whether there is a way out of an apparent dilemma.
An example will suffice to see this application in practice. A 75-year-old patient had a recurrent, large cancerous growth on his tongue. The tumor was surgically removed, but it reoccurred. The patient declined further surgery. The problem was that with a tumor the size of an orange on his tongue, if the patient lay on his back and fell asleep, the tumor would block his trachea, which would cause him to cough and wake up. As a result the patient was always sleep deprived. The patient and his family asked if there was anything that could be done to relieve the patient’s distress. The medical resident caring for the patient recommended morphine to keep the patient pain free so he would be able to sleep. With the medication the patient was able to sleep even with the tumor blocking his trachea. But in that position his air supply was inadequate and he died. The nurses believed the resident had “caused” the patient’s death. They wanted to the call the police to report a homicide.
In an age in which there is widespread public support for patient autonomy, even to the point of physician-assisted suicide, some argue that the patient’s or proxy’s request for sedation is warrant enough to end the patient’s life. That view contradicts the long tradition in medicine to “do no harm” and the tradition of society’s high barrier against one individual terminating the life of another human being. A Catholic approach to the problem would be to apply the traditional principles of medicine and moral theology to the patient’s situation. Do we accept with utter indifference the suffering of the dying patient? That would not only be inhumane; it would violate the physician’s obligation to “do no harm.” Using the traditional Catholic principle of “double effect,” relief from pain and distress may be provided even if one can foresee, but does not intend, the possible foreshortening of life. Respect for God’s design for life and the God-given dignity of each human being, not deference to the “autonomy” of the patient, is the norm in a Catholic approach to such cases.