Only a few families face firsthand the critical medical decisions surrounding care of a handicapped newborn, yet the “Baby Does” of America have been at the center of public debate and controversy throughout the 1980s. Looming ahead is a related challenge: caring for the incapacitated elderly and terminally ill at a time when high-tech medical options present bewildering treatment choices. Families facing this dilemma vastly outnumber those coping with handicapped infants.
Professionals in the fields of medicine, law, and ethics are scrambling to delineate realistic guidelines about treatment and care in the face of a growing popular movement supporting the “right to die,” as well as increasingly organized opposition to any decision that points in the direction of actively assisted euthanasia. It is a tension of special concern to the Christian community, as a primary provider of health care to the elderly through hospitals and nursing homes. However, the debate over treatment and its termination has not been joined by many Protestant ethicists, and at least one prominent ministry was caught off guard when the issue arose.
Crista Nursing Center, Seattle, Washington’s premier Christian home for senior citizens, is run by Crista Ministries as part of a far-reaching, $30 million nondenominational initiative that includes a relief organization (World Concern) and a service providing listings of Christian vocational opportunities, (Intercristo). In 1985, an elderly woman in the nursing center suffered strokes that left her unable to swallow food and water. The strokes made tubes necessary to assist her to take nutrition and hydration. Her family obtained medical certification that she had no chance of recovering, and a physician’s directive for the nursing center to remove her feeding tube.
Three nurses refused on ethical and religious grounds to go along with the decision. The nurses who objected were asked to resign. This demand was soon withdrawn and Crista refused the family’s instructions. A court order was obtained by the family and the patient was moved to another facility and died shortly thereafter.
Five months later, another patient’s family also ordered an end to artificial feeding. This time the patient was moved to another unit within the Crista facility where the nurses did not have any ethical or religious objection to the removal of the naso-gastric feeding tube. That patient lingered for a week.
Extensive media coverage followed, and contributions to Crista’s many ministries temporarily dropped. One nurse later resigned over the incident and filed an employment lawsuit against Crista that is still pending.
Despite the controversy, long waiting lists remain for admission to the nursing home. No patients have complained about the decision, according to Derrill Meyer, who is the executive director of Crista Senior Ministries. “Our patients and their families want to retain control over decisions about discontinuing life-sustaining treatment,” Meyer says.
Crista’s decision regarding food and water as “treatment” rather than “care” conforms to a position the Amerian Medical Association took in March 1986. Their policy statement includes “nutrition and hydration” in a list of life-prolonging medical treatments that may be discontinued “even if death is not imminent.”
Events at the quiet nursing home situated among the tall firs on Crista’s suburban campus portend disputes that are sure to rock other Christian medical facilities. Christian health-care providers increasingly will be forced to decide when to use life-sustaining treatments and when to turn them off.
Crista is attempting to ward off future disputes through extensive care conferences involving patients who are still able to make decisions for themselves. But as Crista has learned from experience, the patient and physician are not the only persons involved. Ultimately, Christians need to ask: On what basis do we decide to administer life-sustaining treatment?
Prolonging Versus Providing
Answering that question requires a concerted effort to untangle the misunderstandings that are rife in discussions of medical ethics. U.S. Surgeon General C. Everett Koop, long a champion of the right to life, has clarified the issue by drawing a distinction between providing a patient “all the life to which he or she is entitled,” and artificially “prolonging the act of dying.” This distinction involves the attitude of the care giver as well as the actual condition of the patient, so it is necessarily subjective.
Koop explains this distinction with an example of a mythical patient: “Suppose your daughter, age two, had a neuroblastoma, the most common tumor of childhood. I operated on her, gave her radiation therapy, and for two years she received chemotherapy. She did so well initially that you doubted the diagnosis could be cancer. But now you are seeing her slip, and we have to come to a decision. We can’t operate, she can’t take any more radiation, and I suggest we stop the chemotherapy.
“Why? Because if we continue the chemotherapy, she’ll live about three months. She will have severe pain we can control, but will be like a zombie and probably become blind and deaf. If we stop the chemotherapy, she will die in only six weeks, but will not have the pain or become blind and deaf. I think discontinuing treatment is good medicine for this patient, for her family, and for society.”
However, Koop is exceedingly cautious about granting anyone other than the patient (and perhaps the patient’s closest family members) the right to make such a decision. He is particularly concerned about the inroads made in professional medical circles and in the popular press by proponents of the “right to die.” Here Koop draws another crucial distinction. The language being used by advocates of “death with dignity” is eminently reasonable and compassionate. But their underlying ethical framework is considerably different from traditional understandings of a patient’s worth and a physician’s responsibility.
A publication from the New York-based Society for the Right to Die, The Physician and the Hopelessly Ill Patient, declares unequivocally that “the patient’s role in decision making is paramount.” When it comes to a patient who wants to kill himself, the publication states, “the physician cannot participate by assisting in the act (of suicide), for this is contrary to law. On the other hand, the physician is not obligated to assume that every such wish is irrational and requires coercive intervention.” The publication includes food and water in its list of treatments that may be withdrawn from a hopelessly terminal patient.
There is little in the society’s statement that would excite controversy. Yet, when it is read in light of statements made by its founder, Joseph Fletcher, the implications of its positions raise a host of ethical questions. Fletcher, best known for defining and defending “situation ethics,” is a proponent of assessing a patient’s “personhood” in light of perceived quality of life rather than the simple biological fact of life. This concept of conditioning full personhood on the quality of life stands in contrast to the more traditional Christian principle asserting the sanctity of all human life regardless of its “quality.”
For instance, according to Fletcher, a baby born with Down’s syndrome may not be entitled to all the civil rights and spiritual dignity of personhood because of his or her impaired ability to reason and think. Fletcher contends there should be no guilt associated with allowing such a baby, like Baby Doe in Indiana, to starve to death.
Richard M. Gula, a Catholic seminary professor of moral theology, places Fletcher at the far end of the “consequentialist” school of thought with regard to euthanasia. In his book What Are They Saying About Euthanasia?, Gula says Fletcher “places the highest good in personal integrity and human well-being.” Moreover, he erases the commonly held distinction between allowing a patient to die and deliberately causing a patient to die, because the “consequences” are the same in either case. He argues in favor of direct euthanasia for incurable, suffering patients, but stops short of promoting euthanasia for people determined to be burdens on society.
Gula, in assessing Fletcher’s position, notes that Fletcher’s advocacy of selective mercy killing “remains arbitrary, it is too risky, and it erodes the character of a helping community of trust and care.” It assigns no positive value to individual suffering, sets a precedent for far broader application of euthanasia, and releases society from its task of exploring other alternatives.
Ethicists who emphasize the sanctity of life include leading Protestant thinker Paul Ramsey, an emeritus religion professor at Princeton University. Ramsey bases his approach to the issue on God’s covenantal love for mankind. “To choose to assist the dying process actively is to throw the gift of life back in the face of the Giver,” he states.
Ramsey draws a clear distinction that says once a patient is beyond the reach of care and comfort, measures to prolong his dying may cease. “To stop some futile medical intervention does not of itself cause or hasten anyone’s death,” he observes. Ramsey is quick to add, however, that “nourishment is not a medical treatment. Death must be the aim of stopping food and water. Here, omission can only mean we intend death,” which Ramsey believes is always wrong.
Opponents of euthanasia tend to reject arguments that draw a distinction between physical life and personhood. In their view, writes Gula, physical bodily life is “intrinsic to human persons and contributes directly to human fulfillment.” Fletcher, on the other hand, would say the body is merely the means, or vehicle, a person uses to achieve his or her chosen goals and activities. Presupposing this division between physical life and personhood allows Fletcher and others to say that physical beings who lack the ingredients of cognitive personhood need not be kept alive.
These abstract ethical positions influence life-and-death decisions and serve to justify actions that once would have been kept secret. Betty Rollin, a national television news correspondent, wrote a best seller about how she actually assisted in her mother’s suicide. Last Wish is a compelling, matter-off-act description of Rollin’s aging mother being ravaged by uterine cancer. In extreme pain, she wants to kill herself. But because she is too weak to leave her bed, the mother convinces Rollin to assist her in her death wish by finding out how she can kill herself with pills.
Assisted suicide is illegal in the United States, so Rollin telephones a physician in Holland, where euthanasia is permitted. Obtaining the name of a drug and the necessary dosage, she and her mother carry out the plan. As her mother drifts into a medicated death, Rollin quotes her as saying, “Remember, I am the most happy woman. And this is my wish.”
Life, Death, And The Courts
Positions staked out by ethicists and accepted by individuals are applied in court cases pitting personal tragedy against the need for impartial societal guidelines. The legal debate begins with a clear but fine distinction that opens the way to confusion and controversy in many actual cases.
On the one hand, patients traditionally have the legal right to control their own medical treatment, including the right to refuse care. “Every human being of adult years and sound mind has the right to determine what should be done with his own body,” wrote American jurist Benjamin Cardozo 75 years ago in ruling against a doctor for performing a medically necessary operation on a patient who did not want it.
On the other hand, all states retain laws against helping people kill themselves. These two potentially conflicting rules of law are reconciled by barring doctors from assisting patients to commit suicide, such as by supplying poison, but by allowing patients to refuse medical treatment necessary to keep them alive. However, the case of Elizabeth Bouvia in California shows how hard it can be to draw this line.
Now 28 years old, Bouvia was born with cerebral palsy and is quadriplegic. Her handicaps have progressed to the point where she is completely bedridden and able to move only her head and a few fingers. She is physically helpless and wholly unable to feed, wash, or even turn herself. Suffering continual pain from crippling arthritis, Bouvia lies flat in bed and is expected to do so for the rest of her life.
Despite her severe physical handicaps, Bouvia is intelligent and mentally competent. She has earned a college degree, was married (her husband left her), and has suffered a miscarriage. Bouvia lived with her parents until her father told her they could no longer care for her. She now lives in a Los Angeles public hospital without financial means to support herself.
Since 1983, Bouvia has said she wants to kill herself. Since she cannot perform any act to take her own life, she resolved to starve herself to death. Fearful for her life, her physicians inserted a life-saving nasogastric feeding tube against her will. Bouvia then filed suit to have the tube removed.
The trial court refused her request, ruling that Bouvia was illegally trying to commit suicide with the hospital’s assistance. The appeals court reversed this ruling last April, declaring “a patient has the right to refuse any medical treatment, even when such treatment is labeled ‘furnishing nourishment and hydration.’ ”
Since the court ruling, Bouvia has yet to invoke her right to end tube feeding, so she continues to live with her hard-won freedom to die. But the question remains: Which court was right?
Concluding she could live 15 to 20 years with feeding, the trial court ruled that the preservation of Bouvia’s life outweighed her right to choose. The appellate court, in contrast, gave primary importance to Bouvia’s right to refuse treatment. “We do not believe it is the policy of this State that all and every life must be preserved against the will of the sufferer,” Judge Beach wrote. “It is incongruous, if not monstrous, for medical practitioners to assert their right to preserve a life that someone else must live, or, more accurately endure, for 15 to 20 years.”
This case is somewhat unusual, however, because Elizabeth Bouvia could express her own choice. Usually patients receiving life-sustaining medical treatment are comatose, brain damaged, or otherwise unable to refuse care. Traditionally, treatment would be provided to these patients. Recently, however, new laws and court decisions have pointed toward controversial means to end treatment for patients unable to decide for themselves.
How Much Treatment Is Too Much?
At the forefront of change are “living wills,” in which healthy people can authorize physicians not to use life-sustaining treatment if they become terminally ill and cannot participate in treatment decisions.
In 1976, California became the first state to authorize living wills. Thirty-five states have followed suit, including 13 in 1985 alone, so two-thirds of all Americans may now execute valid living wills. “As a result,” Koop states, “living wills can no longer be viewed as a temporary legislative experiment in the field of death and dying.”
While most people support the concept of a living will as applied to truly extraordinary medical treatment, many right-to-life advocates fear that such documents go too far. “By using vague or broadly defined terms, living will legislation typically provides the physician with significant latitude to withdraw even ordinary and beneficial treatment and food and water for patients in noncritical situations,” observes attorney James Bopp, Jr., general counsel for the National Right to Life Committee.
Some statutes, such as the Indiana Living Wills Act, state that food and water should be administered to all patients, but most leave this key issue up to the doctor. Statutes also vary greatly in defining the “terminal condition” under which the living will takes effect, ranging from Maryland’s narrow requirement that death be imminent even with treatment, to Montana’s broader clause requiring death “within a relatively short time” without treatment. Of course, individuals may specify in their own living will that food and water never be discontinued. They may also try to tighten the definition of terminal condition, but some ambiguity is inevitable.
“You have no idea, when you write that living will, what sort of death you will face,” Koop says. “Most people envision cancer with intractable pain. Even if that is the case, a lot can happen between now and the future concerning treatment.” If an elderly person with cancer, such as noted Christian author Francis Schaeffer, had been knocked unconscious in a car accident, Koop says a living will could have meant an earlier death. Yet, during the years Schaeffer was treated for cancer, he lectured extensively and wrote a dozen books.
A second statutory method of terminating treatment for incompetent persons is known as a “durable power of attorney.” States that adopt this approach authorize individuals to name someone else to make future treatment decisions for them, in case they become incompetent to do so. Here too, James Bopp objects, claiming a durable power of attorney is very dangerous since there is no real limitation on the right of the named party to withdraw treatment or care when the patient is incompetent.
Living wills and durable powers of attorney only cover the relatively few patients who have actually signed such documents. The vast majority of terminally ill patients are left under the newly developing judicial doctrine of substituted judgment. Under this doctrine, a court seeks to determine an incompetent person’s wish regarding medical treatment, and then implement it. Substituted judgment gained public notice ten years ago with the famous case of Karen Ann Quinlan. Quinlan’s father had requested court authority to disconnect a respirator from his comatose 21-year-old daughter, who was diagnosed as living in a “persistent vegetative state.”
Observing that Quinlan would have a legal right to refuse treatment if she were competent, the New Jersey Supreme Court empowered her father (as next of kin) to render his “best judgment as to whether she would exercise this right in these circumstances.” Even after the removal of the respirator at the father’s direction, however, Quinlan survived in a coma until June 1985.
While most state courts routinely allow family members and guardians to remove respirators and other intrusive medical treatment in certain situations, legal uncertainity remains on many key points, such as discontinuing food and water. Two current cases illustrate the confusion.
Paul Brophy was a 46-year-old Massachusetts firefighter when he underwent emergency brain surgery in 1983. He never recovered consciousness after the operation, and entered a vegetative state unable voluntarily to control his muscles or respond to verbal statements. Medical experts considered Brophy’s condition irreversible.
Apart from severe brain damage, Brophy’s health was good. He was not in danger of imminent death, and could have lived for years with continued feeding through a gastrostomy tube. Such a tube is not painful and is easily operated by a nurse or family member. All of his automatic bodily functions, such as digestion, breathing, and blood circulation, operated normally without mechanical assistance.
After Brophy persisted in this vegetative state for over a year, his wife requested that tube feeding end because he “had no quality of life remaining.” Mrs. Brophy is a practicing Catholic who attends mass daily and belongs to a prayer group. She made the decision to terminate care after extensive church counseling. Brophy’s four adult children, seven brothers and sisters, and elderly mother supported the decision. However, his doctor and the hospital staff refused the request on the basis that withdrawal of food and water constituted the willful taking of human life.
The family then sought a court order to end tube feeding. The trial court refused, acknowledging that, based on his earlier comments, Brophy would have wanted to end tube feeding. Nevertheless, Justice David Kopelman wrote, “It is ethically inappropriate to cause the preventable death of Brophy by the deliberate denial of food and water, which can be provided to him in a noninvasive, nonintrusive manner which caused no pain and suffering, irrespective of the substituted judgment of the patient. The proper focus should be on the quality of treatment furnished to Brophy, and not on the quality of Brophy’s life.”
A bitterly divided state supreme court recently reversed this ruling by shifting the focus from the quality of treatment to the patient’s own perception of his quality of life. Stressing the finding that Brophy would have wanted to end tube feeding, the majority based its decision on “an individual’s right to avoid circumstances in which the individual himself would feel the efforts to sustain life demean or denigrate his humanity.”
Three of seven justices dissented, noting, “If nutrition and hydration are terminated, it is not the illness which causes death but the decision (or act in accordance therewith) that the illness makes life not worth living.” Brophy died after eight days without food.
The majority relied heavily on a 1985 New Jersey Supreme Court decision granting a similar request in the case of Claire Conroy, an 84-year-old single retiree. Conroy was placed in a nursing home by her only relative, a nephew, in 1979. By 1983, she was confined to her bed in a semi-fetal position. She suffered from heart disease, hypertension, diabetes, eye infections, and bed sores. Her left leg was gangrenous. She could not speak, properly swallow, or control her bowels. And she received food and water through a nasogastric tube.
Yet Conroy could move her upper body somewhat, and would scratch herself or pull on her bandages. She moaned when moved or fed. And despite her greatly diminished mental capacity, her eyes sometimes followed individuals in the room, and she smiled when her hair was combed or her body rubbed.
Based on a medical diagnosis that Conroy’s physical and mental condition could never improve, her nephew asked for the tube feeding to end. Believing the resulting death would be painful, her doctor refused.
The nephew then sought court authorization to remove the nasogastric tube. Conroy died before the final court decision, but it ruled on the case anyway to clarify the doctrine of substitute judgment as applied to incompetent but not comatose patients whose life expectancies are relatively short. According to the ruling, where there is clear indication that an incompetent patient would have refused treatment, including tube feeding, then a family member or guardian can make the same decision on the patient’s behalf.
However, if there is no indication of the patient’s wish, then treatment should continue unless it is inhumanly painful. The court ruled that treatment must never be withdrawn from a patient who previously expressed a wish that it continue.
Fifteen Thousand “Granny Does”
These rulings underscore the need for decisions regarding future medical treatment to be made, whenever possible, before a final illness leaves a patient incapable of expressing his or her wishes. Not to decide may allow a substitute to decide instead, who may opt to discontinue food and water. On the other hand, a physician fearing malpractice litigation could decide to proceed with every available treatment. A publication of the Society for the Right to Die says, “Physicians do not easily accept the concept that it may be best to do less, not more, for a patient.”
For individuals, treatment choices can be made in advance by personalized living wills or other declarations specifying the desired care as precisely as possible. This declaration could spell out when treatment should be continued as well as when it should be ended. Another option is choosing the substitute decision maker by a durable power of attorney. By doing so, a person with similar values, such as a minister or relative, can be chosen rather than a court-appointed substitute.
After its difficult experience, Crista Nursing Center continues to sponsor individual care conferences involving the patient, family members, physicians, and spiritual counselors. The process allows the patient to make treatment decisions in advance. It has also convened a special committee to review the appropriate role for Crista. Guidelines have been recommended that include the creation of an ethics committee and use of the term “imminent death.”
Such treatment decisions will increasingly confront society and consequently the church. As Surgeon General Koop notes, “For every Baby Doe born today, there will be 15,000 Granny Does by the end of the 1990s.” What is now called for is compassionate guidance for both the infirm and the people making life-and-death decisions. As the church becomes involved, it can model a spirit of acceptance toward death and dying missing from the wider debate.
Ed Larson is a lawyer in Washington, D.C., with the U.S. House of Representatives subcommitte on education and labor.
