Refusing Medical Treatment
Refusing Medical Treatment
While assisted suicid e is the m ost hotly debated form of euthanasia, other kinds of euthanasia have also had their share of contentious arguments. The refusal of lifesaving treatment or the stoppage of treatment, both passive forms of euthanasia, involve several issues. The hospice, or palliative care, approach is seen as a viable and acceptable alternative to physician-assisted suicide because it provides pain management and an end to overtreatment of terminal illness. Right-to-die supporters are adamant that someone who is terminally ill should be able to choose whether to continue treatment or stop it.
Another type of passive euthanasia is the refusal of treatment on religious grounds. These religious groups are, for the most part, exercising their right to practice their religion. This refusal of treatment, however, also is hotly debated as a right-to-die versus right-to-life issue. Right-to-die supporters contend that all mentally competent adults have the right to choose a time and place of their own death. These supporters, for the most part, have no problem with adult members of religious groups’ choosing to refuse any form of potentially lifesaving medical treatment. Right-to-life groups and many right-to-die supporters, however, draw the line when it comes to the care of children. They contend that the refusal of treatment that could potentially save a child from a nonterminal illness is a tragedy. A parent who chooses not to obtain medical treatment for his or her child for religious reasons, while protected by law, has been hotly criticized for decades by both groups as well as the medical profession.
An anonymous article in Atlantic Monthly in 1957 stated: “If you are very ill, modern medicine can save you. If you are going to die it can prevent you from so doing for a very long time.”65 The article further contended that in many cases, especially those
Not everyone is ready to accept death as the end of life. Scientists have worked for years to develop a method that could preserve the body for possible future reanimation. This science is called cryonics. Cryonics (from the Greek word kryos, meaning “cold”) is the low-temperature preservation of human beings by means of a freezing process that maintains the body after death. The premise of this practice is that sometime in the distant future, technology will become available that can bring these people back to life. Author James Haley explains, “Advocates of cryonics believe that in the next fifty to two hundred years, scientists will have developed the technology to restore these frozen bodies to life.” Critics of the process doubt the feasibility of the plan. Cryobiologist John Bischof of the University of Minnesota states that cryonics is “science fiction at its worst” and has “no hope of reviving dead bodies.”
The modern era of cryonics, however, began in 1962 when a Michigan college physics teacher named Robert Ettinger in his book The Prospect of Immortality advocated the freezing process for extending life into the future. As a result of his work, the American Cryonics Society was founded in 1969. The first actual suspensions were performed in 1974. Writers James Hoefler and Brian Kamore explain the process: “Cryonic suspension . . . involves infusing the body with glycerine, then super-cooling it in a vat of liquid nitrogen.” The procedure can only be done after the person is dead.
There are three organizations where this technology is available: The Alcor Life Extension Foundation in Arizona, the Cryonics Institute in Michigan, and the American Cryonics Society in California. There are approximately 180 people in cryonic suspension at these sites. Family members paid exorbitant amounts of money to have their loved ones stored and suspended.
James Haley, ed., Opposing Viewpoints: Death and Dying. Farmington Hills, MI: Greenhaven, 2003, p. 150.
Quoted in Monte Reel, “Frozen for the Future,” Washington Post, July 22, 2002.
James M. Hoefler and Brian E. Kamore, Deathright: Culture, Medicine, Politics, and the Right to Die. Boulder, CO: Westview, 1994, p. 8.
involving terminal illnesses, doctors were often guilty of over-treatment despite their patient’s wishes to be allowed to die naturally. Over a decade later, as public interest in the dying process intensified, a poll was taken in 1973 to evaluate public opinion about treatment at the end of life. The poll showed that over 60 percent of Americans believed that they should be able to tell their doctors when to stop treatment—to let them die rather than continue treatment. Shortly thereafter, medical experts and ethicists began discussing the right of patients to refuse medical treatment.
“It Is a Disgrace”
“It is a disgrace that the majority of our health care providers lack the knowledge and the skills to properly treat pain and other symptoms of terminal disease.” —Hospice physician David Cundiff.
david cundiff, euthanasia is not the answer: a hospice physician’s view. totowa, nj: humana, 1992, p. 9.
The central question in this discussion was whether continued treatment in terminally ill patients was truly beneficial to the patient. When the average patient suffers from a treatable illness, life support and other extraordinary measures are temporary procedures that are utilized for a short period of time until the patient’s body can function on its own. In some conditions, however, such as terminal disease, such measures are viewed differently. They are seen by much of the public and many social commentators as prolonging the inevitable and often causing more suffering than is warranted. Author George M. Burnell concludes: “Dying is no longer a simple matter. … There are worse things than dying. … You could get stuck with treatments you don’t want and procedures that won’t let you die in peace.”66
“Unfortunately, many patients with advanced cancer [and other terminal diseases,]” hospice physician David Cundiff explains, “are needlessly resuscitated and placed on life support systems when there is no reasonable hope of recovery.”67 This
happens in many cases because physicians are reluctant to give up; instead they continue aggressive treatment even though a patient’s chances of recovery are miniscule. In addition, sometimes families want continued treatment because they are reluctant to give up hope for a miraculous cure. Author Burnell explains, “In the medical setting, busy doctors sometimes continue to treat because the technology is available or because families continue to pressure them and insist that everything possible be done.”68 Many of these patients end up in hospitals or nursing homes, where unwanted and often unnecessary treatments continue endlessly.
Thus, among the primary questions that arise when a patient is diagnosed with a terminal illness are how much treatment that patient should receive and when treatments should be stopped. Norman J. Geisler in his book Christian Ethics writes: “Keeping a comatose person who has an incurable disease alive on a machine when he is irreversibly dying is unnecessary. In fact, it could be viewed as unethical. … Extraordinary efforts to fight the divinely appointed limits of our mortality are really working in opposition to God.”69
The use of aggressive treatment was tested in the courts in May 1976. A nursing home patient, Joseph Saikewicz, was sixty-seven years old but had the equivalent of a ten-year-old’s intelligence because of severe mental retardation. He was unable to make decisions on his own behalf. When he was diagnosed with leukemia, the question arose as to whether he was a candidate for chemotherapy. A probate court appointed a guardian to decide this issue. It was decided that, for this particular patient, chemotherapy was not an appropriate treatment, primarily
because there was no way to explain to Saikewicz about the treatment’s side effects. In addition, the guardian realized that the patient would have to be physically restrained during treatment, thus causing further suffering. After talking with the patient’s physicians, the guardian suggested that the doctors refrain from further treatment and told the court: “Not treating Mr. Sai-kewicz would be in his best interest.”70 The court agreed, and further treatment was suspended.
As more people considered such incidents and the overtreat-ment of some terminally ill individuals, a grassroots movement began that changed how terminally ill patients were treated. Author William H. Colby elaborates, “Modern hospice began as a grassroots movement in the 1970s, growing originally from the dissatisfaction of the families and some caregivers of cancer patients with their care and dying.”71 Hospice care often begins where traditional treatment ends: when it becomes apparent that a patient will not survive his or her illness. Whether the patient has one week or several months to live, hospice professionals work with the patient and family to make those last months pain free.
“An Underlying Need”
“There is considerable evidence which suggests that a request for assistance in suicide may mask an underlying need for pain relief.” —Legal and medical journalist Philip King.
philip king, “washington v. glucksberg: influence of the court in the care of the terminally ill and physician-assisted suicide,” journal of law and health, june 22, 2000.
The word hospice comes from the Latin word hospis, which means “host.” In the Middle Ages, tired and sick travelers who were returning from the Crusades were often given shelter along the way in hospice houses that had been set up by the church. Since that time, the word has taken on a slightly different meaning. Hospice care is also called palliative care, meaning that treatment is focused on relief of symptoms only. Journalist King
explains, “The goal of palliative care is to relieve suffering and place the utmost importance on the quality of the patient’s life.”72 It focuses on the process of dying, rather than the prevention of death. Hospice physician David Cundiff further elaborates, “With excellent palliative care, the dying process can . . . be associated with profound emotional and spiritual growth for the patients, as well as for the loved ones and caregivers.”73 As such, hospice care is widely accepted by both the medical profession and the public.
While a hospice was once associated with a building, today, according to former hospice director Linda Koeppen, “hospice . . . refers not to a place but rather to a program of care, based on a philosophy that recognizes dying as part of the normal process of living and focuses on enhancing the quality of remaining life.”74 Hospice organizations stress that their care affirms life, including the need for patients to be given all the necessary and available
Cicely Saunders was the founder of Great Britain’s first modern hospice and is credited with being the first modern doctor to devote his or her practice to the care of the dying. Saunders began work as a registered nurse during World War II, but a back problem led her to pursue a career in social work. In the course of her work, she helped care for a dying Polish patient named David Tasma. Together, the two of them conceived an idea for a place where the dying could be properly treated. Using a sum of money left her by Tasma, Saunders began to work on the idea.
Doctors who worked at the hospital where Saunders was assigned were supportive but suggested she might have better luck if she, herself, were a physician. At age thirty-three, she enrolled in medical school and eventually qualified as a physician. She was given a research scholarship to study pain management in the terminally ill and gained important experience in caring for terminally ill patients.
She put her expertise to work when she opened St. Christopher’s Hospice. The hospice was put on the national registry as a charity in 1961. The first patient was admitted in 1967, and by 1970 Great Britain’s National Health Service was providing two-thirds of the cost for operation. By providing excellent pain control and a home-like environment, Saunders revolutionized the care of the terminally ill.
The news of her hospice spread throughout the world. Hospices based on her concept now exist in North America and throughout the English-speaking world.
support during the process of dying. Hospice physician Cundiff summarizes, “Hospice seeks to optimize the quality of life.”75
The modern hospice movement was begun by English physician Cicely Saunders in 1967 when she opened St. Christopher’s Hospice in Great Britain. Saunders, while working in other hospitals, had been shocked by the treatment received by dying patients and the emotional and physical suffering that most patients endured.
Hospice came to America in the 1970s. One of Cicely Saun-ders’s nurses was Florence Wald, later the dean of Yale University Nursing School. In 1974 Wald helped open the first hospice in the United States—Connecticut Hospice in Branford. That same year the National Cancer Institute began providing funds to all hospices in the United States, and in the mid-1980s Medicare and Medicaid joined other insurance companies in covering hospice care. As a rule, this coverage takes care of providing medication, equipment, and care for the terminally ill.
In 1993, 11 percent of U.S. deaths occurred in hospices; by 2004 that number had risen to 31 percent. Currently, 450,000 patients die each year while under hospice care provided by over three thousand American hospices. This represents about 20 percent of all deaths, which number around 2.5 million annually. Writer Colby summarizes, “Hospice today is a major health care field with extensive government regulation.”76
There are two basic kinds of hospice care. The most common is home care, where nurses and other health care professionals visit patients in their homes and provide support to the caregivers, who are often family members. When home care becomes impossible because of caregiver fatigue or unrelieved pain or other symptoms, the patient is often brought to an inpatient facility. These facilities have eased the burden for nonprofes-sional caregivers and offer twenty-four-hour care by nurses and other professionals.
Hospice care also offers an alternative way for dying patients to end their lives. Rather than resorting to suicide or assisted suicide or enduring the dying process in an institutionalized setting, patients and their families can choose hospice care. Joe Lo-conte, in an article titled “Hospice, Not Hemlock” written in 1998, opined, “Hospice care is an important option for patients who do not wish to die a depersonalized death in a hospital or attempt assisted suicide.”77 Loconte’s opinion is one that is shared by the majority of hospice professionals.
Hospice experts cite that the main reason it is such a good alternative is that hospice care provides good pain control and an end to needless suffering. Psychiatrist and best-selling author M. Scott Peck elaborates, “Nothing fuels the euthanasia debate so much as the fear of intractable physical pain.”78 Peck, like many medical personnel, believes the answer lies not in euthanasia but in better pain management. “Until such improvement occurs,” Peck concludes, “the issue of physical suffering will remain a factor in the euthanasia debate.”79
One of the first problems that hospices tackled, in fact, was pain control. Acute, short-term pain is viewed as a signal that something is wrong. This kind of pain usually results from a disease process or injury that can be readily treated and resolved within a relatively short period of time.
The pain associated with terminal cancer is far different. Author Cundiff explains: “The pain of cancer is particularly meaningless, serving no useful purpose such as warning the sufferer of imminent harm. … Cancer pain usually grows more rather than less severe.”80 In addition to the physical agony that severe pain can cause, it also has other components. These include psychological pain, fear, anxiety, and spiritual pain from a life that suddenly seems to have no meaning.
A Constitutional Right
“From a legal standpoint, patients in the United States have a constitutionally recognized right to refuse any and all forms of medical intervention, whether or not they are terminal and whether or not such refusal may lead to their death.” —Medical journalists Paul S. Mueller and C. Christopher Hook.
paul s. mueller and c. christopher hook, “the terri schiavo saga: the making of a tragedy and lessons learned,” mayo clinic proceedings, november 1, 2005.
Prior to the development of hospices, pain control of the terminally ill, as well as cancer patients in general, was sadly ineffectual. Said one patient: “They used to see how long I could go without an injection. I used to be pouring with sweat because of the pain. I couldn’t speak to anyone and I was having crying fits.”81 The same patient, hospitalized in a hospice, reported to his hospice caregivers much better pain control.
Hospice professionals believe that pain control is one of the most important issues for the dying patient. From the beginning of the hospice movement, the alleviation of pain was addressed. Within a short time, pain ceased to be a problem for the majority of hospice patients. The reason for the improvement was the
use of continuous doses of medication, rather than waiting for the patient to ask for them. The hospice philosophy contends that constant pain needs constant pain control. This aggressive use of opiates has become the standard for all hospice care. Author James Haley summarizes, “Once the pain and symptoms of an illness are under control, people rarely talk about taking their own lives.”82 This argument is made not only by hospice professionals but many right-to-life advocates as well.
Pain control is now part of many specialty areas of medicine, and many medical schools now offer courses to help physicians understand the reasoning behind aggressive use of narcotics in patients with cancer. Many medical associations, explains journalist King, advocate that it is “morally appropriate to increase the dosage to levels needed even to the point where death is hastened, provided that the primary objective of the necessary treatment plan is to relieve pain.”83
Hospice makes the argument that assisted suicide is thus unnecessary. Registered nurse Rosemary Ferdinand elaborates, “In nearly all patients, they say, pain and other symptoms can be relieved if they are carefully assessed and treated.”84 Hospice physician David Cundiff agrees: “In my view, improved care of the terminally ill will make the question of euthanasia and assisted suicide moot.”85
The passive euthanasia that is practiced by hospice in its support of refusing aggressive treatment is widely accepted by nearly all physicians and the public. The passive euthanasia practiced by various religious groups that involves the refusal of medical treatment is not so acceptable to the medical profession and much of the public. Critics contend that members of the religious communities are not terminally ill. Instead the members have readily treatable illnesses that sometimes become fatal because of nontreatment.
The refusal of medical care, particularly in the case of children, by some religions has become, in many eyes, a conflict and a source of grave concern in American society. Critics of this practice argue that hospice patients die from the disease, not from the refusal of treatment. However, the children of these religious groups die not so much from the disease, but from the lack of medical treatment. While the refusal of treatment by adults is often considered ill-advised, the nontreatment of children is considered tragic. Even those who support the most basic tenets of an individual’s right to die consider such deaths as violating a child’s right to live.
Critics of the refusal of treatment on medical grounds point most often to the practitioners of Christian Science. Journalist Larry May explains, “Since the Christian Science Church was founded over a century ago by Mary Baker Eddy, Christian Scientists have been locked in a struggle with the medical profession.”86
Christian Scientists believe that each person should be his or her own physician. In addition, they believe that all illness has an emotional component. The Christian Science Church explains: “Christian Science teaches that all problems . . . have a mental basis. … Therefore, a quick solution through medicine would not address the real issue, since such a treatment doesn’t deal with the mental aspect of the condition.”87
Most physicians disagree, claiming that it is a violation of their professional duties and oath to “do not harm” to allow suffering that could be prevented by medical treatment. Christian Scientists, however, claim that it contravenes their religious freedom to be forced to subject their children to medical treatment in violation of their religious beliefs. Furthermore, the Christian Science Church has frequently claimed that its method of healing through the use prayer is as effective or superior to medicine in healing all childhood illness. Heather Hayward, a Christian Science practitioner, explains: “I’ve faced some severe physical situations of my own . . . but my instinctive reaction, based on previous experiences of spiritual healing, has been to always
trust God for the resolution.”88 This has led to heated arguments between physicians and practitioners of the religion.
While the judicial system has upheld the right of members of religious groups to refuse treatment for themselves and their children, critics of the practice cite numerous examples of children who could have been saved from death by modern medical treatment. These incidents fuel the fire of opposition to allowing such religious groups to refuse treatment. Religious groups are protected by a federal law enacted in 1974 as an addendum to the Child Abuse and Treatment Act that states, “A parent or guardian who does not provide medical treatment to a child because of the parent’s religious beliefs is not considered, for that reason alone, to be a negligent parent or guardian.”89
One state group, Massachusetts Citizens for Children, a grassroots, nonpartisan, nonprofit group whose goal is to prevent child abuse through electoral and legislative action, asserts, “Unfortunately there is a tragic public record of Christian Science’s failure to save children from a number of normal non-fatal illnesses.”90 The group points specifically to two children in the late 1980s who died of juvenile diabetes, a childhood illness that is normally nonfatal when treated with medication. The children received no medical treatment, only prayer.
These cases were not isolated incidents. In April 1986 one child, Robyn Twitchell, ate dinner and then experienced severe pain and vomiting. His symptoms continued for two days, during which he was treated by Christian Science health practitioners with prayer. Five days after the initial attack, the child died. An autopsy showed that Robyn had a bowel obstruction, something that could have been corrected with surgery and hospital treatment. Robyn’s case did not involve diabetes, but critics of Christian Science healing used it to illustrate that, in many cases, simple hospital treatment by skilled medical professionals could save the lives of many children within the Christian Science faith.
Such cases shock the general public and anger medical practitioners. Members of the public, especially those who are parents, are sickened by stories of an innocent child losing his or her life due to what they perceive as neglect for failure to pursue medical treatment. Author Larry May elaborates, “It seems clear to most physicians that respecting the beliefs and choices of Christian Scientists meant that Robyn’s right to life and his right to minimally adequate health care were jeopardized.”91 The American medical establishment has long been critical of and opposed to the refusal of medical care by religious groups.
The Christian Science religion counters these arguments with stories of the many people who have been cured by religious
healing and faith. Virginia S. Harris, former chair of the Christian Science Board of Directors, relates the story of one such healing that she was involved in: “When I first met a girl called Linda, she was fourteen years old. She suffered from what her doctors had diagnosed as arterial venous malformation [a congenital condition in which a person’s veins and arteries do not connect in the proper manner]. She’d had piercing head pains since childhood and had missed a lot of school.” Her doctors had given a dire prognosis: She would suffer pain her entire life unless she had surgery that offered only a 50 percent chance of survival. Harris intervened at the mother’s request and met with Linda for several weeks, offering prayer and counseling. At the end of four weeks, Linda was off her medication; at the end of two months she was healed. Harris continues: “That was eighteen years ago. Today she’s married and has two children.”92
“[Many feel that a line] needs to be drawn at the point where respecting a religious minority culture clearly jeopardizes the well-being of children.” —Ethicist Larry May.
larry may, “challenging medical authority: the refusal of treatment by christian scientists,” hastings center report, january 1, 1995.
The Jehovah’s Witness religion also views some medical intervention as contrary to its religious beliefs. This is particularly evident in members’ refusal to allow blood transfusions. They point to the Bible as their reason for this abstention and cite Acts 15:29: “keep abstaining from . . . blood.” Other than blood products, Jehovah’s Witnesses, however, allow medical treatment when appropriate, due to their nonbelief in faith healing. Like Christian Scientists, these religious followers have been criticized by the medical profession when a child or adult dies when a blood transfusion may have prevented the death.
The American Academy of Pediatrics has led a campaign to remove the religious exemptions to child neglect and endanger-ment statutes. This group is fueled, writes May, by the “belief that Christian Scientists and Jehovah’s Witnesses should be forced to subject their children to the full range of curative powers at the disposal of modern medicine. … The religious exemption is seen as a major impediment to providing the best health care to all American children.”93
Massachusetts Citizens for Children is also very vocal in its opposition to the laws that protect religious groups. It states:
The state cannot regulate religious healing. It cannot set standards for the training of faith healers or certify their credentials to take life and death responsibility for helpless children . . . the Christian Science Church has presented no scientifically credible evidence that its methods can heal serious childhood illness. … Christian Science parents should not be exempted from the legal responsibility of all other Massachusetts parents to provide their seriously ill children with necessary medical care.94
Christian Science practitioners counter this argument by claiming that it would be hypocritical for their followers to rely on mainstream medicine when they have faith in the power of prayer.
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