What medical care will I receive if I am too sick to make decisions about my care? Many people worry about this question, particularly about how they can retain control over such decisions. The portrayal in this case of physicians who fail to prescribe adequate pain relief and who feel threatened by active family participation in decision-making only reinforces such concerns. It seems that the hospice movement has had no effect on these physicians. Traditional advice, from wise grandmothers, might be to have a child who is a doctor or who marries a doctor. A more modern suggestion might be to give advance directives about future care. At first reading, this case illustrates the usefulness of both suggestions. But on closer reading the case reveals serious problems with both approaches.

The wish of many to die with dignity in the face of medical technology, which holds out the hope of continued life but can dehumanize those whom it sustains, is played out countless times in hospitals and nursing homes every day. Each day, hundreds, if not thousands, of decisions must be made about administering or withholding life-sustaining treatment for critically ill patients. Occasionally it spills over into the courtroom and the press, creating the impression that there is a large volume of such litigation. In fact, the number of litigated cases is relatively small–approximately 50 reported cases since the Quinlan case in 1975, and possibly a few times that number in unreported cases.

Betty's case did not wind up in the courts, though it is the kind that could have, given the combination of her physicians not talking to Betty and her family, not listening to them, and not hearing them, and their apparent unwillingness to let Betty die peacefully without aggressive treatment.

The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research undertook a study of “Deciding to Forego Life-Sustaining Treatment” because this issue seemed to the commissioners “to involve some of the most important and troubling ethical and legal questions in modern medicine,” even though it was not part of the commission's original legislative mandate. In submitting the report to the President, Morris Abrams, the chairman of the commission, noted: “Although our study has done nothing to decrease our estimation of the importance of this subject to physicians, patients, and their families, we have concluded that the cases that involve true ethical difficulties are many fewer than commonly believed and that the perception of difficulties occurs primarily because of misunderstandings of the dictates of law and ethics.”

Since the Quinlan decision in 1976, courts and legislatures have made substantial progress in defining rules to govern nontreatment of dying and debilitated patients. For example, the right of the competent patient to refuse necessary care is now widely established, and the legality of withdrawing respirators and even nutrition and hydration from permanently unconscious patients is increasingly recognized.

More difficult questions arise, however, when the patient is neither competent nor permanently unconscious, but instead is in a conscious, severely demented and debilitated state, with experiences that appear quite limited. Thousands of patients in this condition are cared for in private homes, hospitals, and nursing homes, the victims of stroke, senility, Alzheimer's disease, and other illnesses. Even though they usually require only low-tech, minimally supportive care, such patients can impose great stress on their families and high financial costs on the health care system.

The issuance of do-not-resuscitate orders was one of the first dilemmas scrutinized by lawyers, health care professionals and philosophers in the field of bioethics. In 1983, the President's Commission articulated the basic principles that should guide decisions about CPR: respect for the choices of patients capable of deciding for themselves, recognition of family members as appropriate surrogates for decisionally incapable patients and the importance of an open dialogue with the physician as a predicate to informed consent.

Six years have passed since the President's Commission issued its landmark report. More than a decade of discussion and written commentary has clarified the ethical and social questions presented by resuscitation decisions. In many states, judicial decisions and legislation have addressed some of the legal uncertainties associated with do-not-resuscitate (DNR) orders. Nonetheless, the gulf between recognized ethical principles and clinical practice remains broad and resistant to change. Nowhere is this gap more evident than in decisions about cardiopulmonary resuscitation (CPR) for competent patients.

The issuance of do-not-resuscitate orders was one of the first dilemmas scrutinized by lawyers, health care professionals and philosophers in the field of bioethics. In 1983, the President's Commission articulated the basic principles that should guide decisions about CPR: respect for the choices of patients capable of deciding for themselves, recognition of family members as appropriate surrogates for decisionally incapable patients and the importance of an open dialogue with the physician as a predicate to informed consent.

Six years have passed since the President's Commission issued its landmark report. More than a decade of discussion and written commentary has clarified the ethical and social questions presented by resuscitation decisions. In many states, judicial decisions and legislation have addressed some of the legal uncertainties associated with do-not-resuscitate (DNR) orders. Nonetheless, the gulf between recognized ethical principles and clinical practice remains broad and resistant to change. Nowhere is this gap more evident than in decisions about cardiopulmonary resuscitation (CPR) for competent patients.

A decision not to hospitalize, dialyze or resuscitate a dying, elderly, nursing home resident is regarded as “possible abuse.” Any physician, nurse, administrator, social worker, aide or other staff member who learns of plans to withhold treatment is required to report this fact to a state official. That official will conduct an investigation “to determine whether the legal guidelines...are satisfied.” While the often protracted investigation is pending, “the facility itself (must) preserve the patient's health.”

A letter declaring this to be the requirement of current New Jersey law was recently sent to administrators of all nursing homes and psychiatric hospitals by the state's Office of the Ombudsman for the Institutionalized Elderly.

The policy has provoked strong protests from health professional organizations and advocates for the privacy of patients and families. Alert clinicians are reportedly maneuvering to place their patients beyond the Ombudsman's reach.

High U.S. health costs have been one of the main barriers to enacting universal access to care in recent decades. It is therefore surprising that Massachusetts, with the nation's highest per capita health spending, last year promised health insurance to all citizens. Declaring that “the access of residents of the Commonwealth to basic health care services is a natural, essential, and unalienable right” protected by the Massachusetts Constitution, the new health law, Chapter 23 of the Acts of 1988, legislates a promise that insurance be offered to all by 1 April 1992.

The law was the product of almost three years of bargaining. One closely involved person said this was “the most controversial and heavily fought battle in the past 25 years in the Massachusetts State House.” Deals had to be struck. Perhaps the most important of the law's compromises is embodied in its title: “An Act to Make Health Security Available to All Citizens of the Commonwealth and to Improve Hospital Financing.” Obtaining the votes for the law's universal access provisions required promising Massachusetts hospitals substantially higher revenues.