Terminal Illness | Introduction
William Bergman, a retired railroad detective from Hayward, California, was diagnosed with terminal lung cancer in February 1998. According to his daughter, Beverly, Bergman’s two final wishes were to be free of pain and to live out the rest of his days at home with his family. Although Bergman arranged a release from the hospital and a return to his home, the drugs his internist prescribed for pain were largely ineffective. “He died at home,” states Beverly Bergman, “but in miserable pain.”
Beverly Bergman filed a complaint with the Medical Board of California, asking that her father’s physician be penalized for failing to prescribe stronger drugs that could have alleviated the dying man’s pain. While the board agreed that Mr. Bergman had received inadequate pain treatment, no disciplinary actions were taken.
The Bergman case exemplifies a recent trend in health care advocacy. As New York Times reporter Sheryl Stolberg writes,
For decades, doctors have worried that they might be disciplined, or even face criminal prosecution, for the aggressive use of morphine and other narcotics to control pain. Now, some advocates are trying to swing the pendulum in the other direction, by pressing authorities to punish doctors for not using pain medicine aggressively enough.
Doctors’ wariness about administering pain-killing opiates is understandable, commentators point out. In an attempt to curb drug trafficking and narcotics abuse and addiction, many states require physicians to keep detailed records of prescriptions for controlled substances. Dr. Wing Chin, William Bergman’s internist, lives in a state where special prescription pads are required for the administering of certain drugs. The pads make copies in triplicate—one for the doctor, one for the pharmacist, and one for drug en- forcement officials. Chin maintains that when Beverly Bergman requested narcotics for her dying father, he was unable to quickly comply because he did not have the special pad with him. Instead, Chin prescribed a milder pain reliever that did not fall under the triplicate requirement.
Such occurrences reveal a need for the medical and legal communities to re-evaluate attitudes and policies that can result in the undertreatment of pain in the terminally ill, patients’ advocates argue. “Terminally ill patients are in special situations,” contends R. Henry Capps Jr., a medical student at East Carolina University. “Clearly, pain control is far more important for them than a nebulous avoidance of potentially harmful properties of pain medication.”
Physicians’ fears about overprescribing narcotics are not the only reasons that dying people often receive inadequate pain treatment, health care experts claim. The mainstream medical community in the United States has a tendency to emphasize “curing” over therapeutic “healing,” critics argue. A patient’s cure is perceived as success, while a patient’s death is seen as a medical failure. Since a terminal patient cannot be cured, efforts to heal their pain are often halfhearted because the patient’s impending death is considered a medical defeat.
Patients’ advocates point out, moreover, that many of today’s doctors and nurses acquired little or no training in end-of-life care while they were students. According to Ira Byock, president of the American Academy of Hospice and Palliative Medicine, education in end-of-life care is “woefully insufficient because it is often taught in electives, or given only small amounts of time within the standard curriculum.” Just six out of the 125 medical schools in the United States offer a separate course in death and dying, and only 24 percent of the leading medical textbooks provide helpful information about end-of-life issues, reports the Robert Wood Johnson Foundation. One survey of a New York hospital found that almost all the medical residents who had had their first experience telling a patient about a terminal diagnosis had never witnessed a senior physician engage in such a conversation. Byock insists that medical curricula must change so that future standards of care for the dying will be more compassionate. In his opinion, “education about how to care for people when they’re dying should be proportional to the amount of time devoted to obstetrics in medical and nursing schools.”
In response to the calls for improvement in terminal care, a few medical schools and teaching hospitals have begun to offer more training in end-of-life issues. Some medical curricula are devoting more attention to palliative care, a medical specialization in the care of patients with incurable illnesses. Palliative-care physicians and nurses are trained to relieve pain and other symptoms associated with serious illness; they also address the psychological, emotional, and spiritual aspects of chronic and fatal disease. Such issues are capturing the interest of a growing number of medical students, palliative-care supporters maintain. One elective course in end-of-life care at Harvard, offered since 1994, is regularly oversubscribed and receives accolades from student evaluators. In 1999, New York’s Mount Sinai School of Medicine opened a new Institute of Palliative Care. And in the year 2000, the U.S. Medical Licensing Exam included updated questions on palliative care. Proponents hope that this burst of interest in palliation and endof- life issues will herald a new era of merciful care for the terminally ill.
Pain management for the dying is just one of many issues surrounding the care of the terminally ill that have arisen in recent years. Conflicting opinions about life support technologies, living wills, and physician-assisted suicide are also generating heated debate among health care experts and medical ethicists. Terminal Illness: Opposing Viewpoints explores these controversies in the following chapters: How Can Care of the Terminally Ill Be Improved? How Should the Physical and Emotional Pain of Terminal Illness Be Addressed? Should Physicians Be Permitted to Hasten the Deaths of Terminally Ill Patients? Do the Terminally Ill Have the Right to Die? The various answers to these questions present a compelling overview of the complex and difficult challenges faced by the fatally ill.
