Kathy Faber-Langendoen

Process of forgoing life-sustaining treatment in a university hospital: an empirical study.

ObjectivesThe difficult decision to forgo (withhold or withdraw) life-sustaining treatment has received extensive commentary. Little attention has been paid to how physicians do, and should, care for dying patients once this decision is made. This study describes the characteristics of patients who forgo treatment, determines the range and sequential process of forgoing treatment, and suggests ethical and public policy implications. DesignThe charts of all patients who died at the University of Minnesota Hospital during a 2-month period were reviewed. The patient information that was collected included age and sex, diagnoses, mental status, location in the hospital, length of hospital stay, method of payment, the timing of the first decision to forgo treatment, and the range and sequence of interventions forgone. SettingAll ICUs and general wards in a 586-bed tertiary care university hospital. PatientsAll patients who died at the University of Minnesota Hospital during May and June 1989. Main ResultsA total of 52 (74%) of 70 patients who died had some intervention withheld or withdrawn before death. Those patients in whom treatment was forgone were more likely to have an underlying malignancy or impaired mental status and longer hospital stays. Thirty-two (62%) of 52 patients who declined some treatment were in an ICU; 26 (50%) of 52 patients required mechanical ventilation. On average, 5.4 separate interventions were forgone per patient. Resuscitation and/or endotracheal intubation were generally the first measures withheld; once a patient required a ventilator, withdrawing the ventilator was a late decision. Precise methods of ventilatory and vasopressor withdrawal varied considerably among patients. ConclusionsForgoing life-sustaining treatment is not a single decision but it often occurs in a sequential manner over several days. A strict analysis of the benefits and burdens of various interventions may be inadequate in deciding what interventions are appropriate in the care of the dying patient. (Crit Care Med 1992; 20:570–577)

Dying Patients in the Intensive Care Unit: Forgoing Treatment, Maintaining Care

Up to 60% of deaths in the United States occur in acute care hospitals (1), and of these, 75% occur after decisions to forgo treatment (2, 3). Although such decisions are common in the intensive care unit (ICU), the care of dying patients raises both clinical and ethical difficulties. For example, in one survey, most ICU nurses and physicians stated that ICU interventions were often burdensome and used inappropriately (4). Although ICUs present many challenges to providing excellent end-of-life care, they also have special resources available (for example, a low patientnurse ratio that allows careful titration of intravenous medication to control dyspnea during ventilator withdrawal). This paper aims to help clinicians improve the care provided to ICU patients and families when decisions are made to limit life-sustaining treatment. It challenges the misconception that such decisions are decisions to withdraw care (5). In addition, it challenges physicians and nurses to care for dying patients with the same attention to detail, critical thinking, and compassion that they use in caring for ICU patients who are expected to survive. Patient Case Mr. McGee is a 79-year-old minister admitted with acute abdominal pain. He has been well except for complete heart block, which requires a permanent pacemaker. He lives at home and cares for his disabled wife. A perforated bowel is diagnosed, and he undergoes emergency surgical repair. Postoperatively, in the ICU, he develops the acute respiratory distress syndrome, renal failure, and candidal peritonitis. Mechanical ventilation and hemodialysis are begun. During the next 3 weeks, his mental status deteriorates so that he can no longer engage in conversations or follow commands. The ICU physician tells Mrs. McGee that her husbands chance of surviving is less than 10% and that even if he does survive, he will need long-term ventilator support and dialysis. Although Mr. McGee has no written advance directive, his family is certain that he would not want ICU care continued given these prospects. Deciding To Withdraw Life-Sustaining Interventions Although the basic values underlying end-of-life decision making (6-8) are not unique to the ICU, the setting presents unique challenges to the process. The ethical aspect of forgoing treatment resides in the legal and ethical right of the patient to determine what should happen to his or her own body. An adult patient with decisional capacity must be informed of reasonable treatment options and their possible outcomes. Patients who decide to forgo life-sustaining treatment should have these decisions honored. As a rule, a patients considered decision should override contrary opinions of family or physicians, no matter how well-intentioned the opposing views may be. When patients who cannot make decisions are concerned, the issues become more complicated. Before admission, Mr. McGee was fully capable of decision making, and conversations about his preferences for life support may have helped his family make decisions on his behalf. However, 60% to 70% of seriously ill patients, like Mr. McGee, are unable to speak for themselves when decisions to limit treatment are considered (3, 9). Although advance directives allow patients to specify preferences in advance, they have limited usefulness, and only 10% to 20% of patients even complete them. Living wills generally apply only if a patient is terminally ill or permanently unconscious, categories that are inapplicable to many ICU patients. Moreover, patients with advance directives may receive the same care as those without them (8) or may not want them followed literally (10). In the absence of a proxy designated by the patient, it is helpful to identify a single surrogate decision maker [or, if decisions are made by consensus within the family, a single spokesperson]. The surrogate should know the patient well and be willing to serve as the patients representative. In order of preference, decisions should be made on the basis of 1) the patients previously stated wishes; 2) inferences based on the patients values or life goals; or 3) the patients best interests, as judged by weighing the benefits and burdens of treatment. Many states stipulate surrogates by using a legal hierarchy. However, the legally mandated person and the ethically appropriate person may sometimes differ. For example, a daughter may know much more about her fathers preferences than a separated wife. For this reason, all capable patients should be urged on admission to the ICU (if not before) to advise caregivers about how to make decisions and should designate a health care proxy. Clinicians in the ICU should guide the proxy or surrogate through the decision-making process. Information should be given by using understandable terms and avoiding jargon. In addition, ample time should be allowed for discussion and repeated conversations. If a patient is expected to remain in the ICU for more than 2 days, holding a meeting with the patient and family within 48 hours of admission (and periodically thereafter) can help identify the appropriate goals of ICU treatment. These goals should be reevaluated by considering the patients course and determining whether current interventions remain consistent with the treatment goals. Participants in such meetings vary but often include the patients ICU and primary care physicians, nurses, consultants, family, close friends, religious advisor, and, most important, the patient (if possible). Spiritual Needs and Cultural Values Spiritual and religious issues are often significant factors for patients and families who are confronted by the possibility of death. An overwhelming sense of personal loss, with associated emotional and spiritual suffering, are often at the core of a dying persons and familys experience (11). Clinicians should routinely ask patients and families whether spiritual needs are being met and, if not, how the hospitals resources might be more helpful. Chaplains, social workers, and others skilled in supporting people through personal loss can be invaluable. The importance of dealing with the grief, spiritual issues, and emotions of family members emphasizes the need for multidisciplinary approaches. In addition, clinicians in the ICU should be aware of cultural differences in making decisions at the end of life. People from some cultures may be less willing to discuss resuscitation status or to forgo life-sustaining treatment (12-14) and may be less likely to complete advance directives (15, 16). Cultural and religious knowledge, sensitivity, and respect are essential when ICU staff discuss limiting life support. Use and Limits of Prognostic Models Recent advances in the use of prognostic models have improved objective predictions of hospital mortality rates for ICU patients. However, difficulty in determining if and when an individual patient will die remains a major obstacle to providing end-of-life care in the ICU. For example, the Acute Physiology and Chronic Health Evaluation (APACHE) III prognostic system (17) provides point estimates of mortality with 95% confidence intervals for the day of ICU admission, with updated predictions for subsequent ICU days. This and other models have been validated to predict outcomes of groups of patients (17-19). No controlled evidence, however, shows that prognostic models improve end-of-life decision making for individual patients. The prognostic model developed for the Study to Understand Prognoses and Preferences for Outcomes and Risk of Treatments (SUPPORT) provides 2- and 6-month estimates of survival, but this information has been shown to have minimal impact on end-of-life care for patients with serious illnesses (20). Given these limitations, would sophisticated ICU prognostic models have aided decision making for Mr. McGee? Possibly. However, most clinicians already incorporate some type of probabilistic reasoning when discussing prognosis with patients and families. Having objective estimates of survival may complement physician estimates and may help plant the seed in the minds of family members who have difficulty accepting that their loved one may die in the ICU. Because current prognostic models have considerable limitations, however, clinicians should use them only as an adjunct to the process of shared decision making (Table 1). Table 1. Limitations of Prognostic Models for End-of-Life Decision Making in the Intensive Care Unit Withdrawing Life-Sustaining Interventions After discussions with Mrs. McGee, a do-not-resuscitate order is written and dialysis is stopped. The ICU attending physician suggests that the ventilator also be discontinued, and the family agrees. Before ventilator support is stopped, vasopressors and all medications except morphine and midazolam are withdrawn. The resident discontinues enteral feedings but restarts them an hour later at the attendings request. Practice Variations Mr. McGees care presented physicians and family with many decisions. Was the ICU the best place to care for him? Which interventions should be continued, and which should be stopped? Is artificial nutrition different from other life-sustaining treatment? The practice of withdrawing treatment in ICUs has evolved during the past 20 years. When initial recommendations for discontinuing ventilator support were published in 1983, withdrawing ventilators was rare (21). Since then, withdrawing dialysis, ventilators, and other interventions has become much more common (22, 23). A study of 136 ICUs found that 74% of 5910 dying patients had some form of treatment withheld or withdrawn before death (2). However, interinstitutional variation was striking. Individual ICUs reported that anywhere from 21% to 96% of deaths were preceded by treatment limitation, and some ICUs reported no instances of withdrawing life support. This variation raises the question of whether these practice differences reflect physician or

Deception, discrimination, and fear of reprisal: lessons in ethics from third-year medical students.

Purpose To systematically examine ethical conflicts reported by all State University of New York Upstate Medical University third-year students, compare them with conflicts reported in the literature, and identify content areas that compel new or renewed emphasis in national educational objectives, standard curricula, and texts. Method From 1999 to 2002, all third-year students submitted papers for a required bioethics course. These papers depicted ethical issues arising during clinical clerkships. The authors devised a checklist of ethical issues; after analyzing the students’ papers, the authors applied the checklist to the papers to create a taxonomy. Results Three hundred twenty-seven students submitted 688 cases involving 40 ethical issues. The most common issues were deliberate lies or deceptions (n = 68), patients’ right to refuse recommended treatment (n = 48), and insistence on futile treatment (n = 46). Students perceived overt and subtle discrimination toward patients, reflected in substandard or excessive treatment. In 81 cases (12%), students expressed reluctance to speak up about moral conflict for fear of reprisal. This fear was expressed in 18 (45%) of the 40 issues—particularly student-specific (36 [52% of 69]) and quality of care (7 [24% of 29])—and most frequently in cases involving surgery (p < .025) and obstetrics–gynecology patients (p < .01). Conclusions Students discerned ethical dilemmas in both “usual and customary” and seemingly incidental situations. Students who described fear of speaking up perceived a tradeoff between academic survival and patients’ interests. The cases demonstrated that students still lacked the tools to navigate ethical dilemmas effectively. The authors propose that moral courage is within the realm of professional expectations for medical students; its cultivation is an appropriate formal objective for medical education.

The Role of Guidelines in the Practice of Physician-Assisted Suicide

Proponents and opponents of physician-assisted suicide can agree on at least one thing: the importance of regulatory guidelines if the practice is to be legal. However, there is much disagreement about the moral import of even trying to formulate guidelines; about how guidelines can affect physician practice, health care providers, patients, or families; and about whether guidelines can really protect against harm or abuse. Questions once only of theoretical interest have taken on new urgency since Oregon legalized physician-assisted suicide. The debate about guidelines swirls around several interrelated questions. What has been the experience of efforts to implement physician-assisted suicide using consensus guidelines? What goals are guidelines intended to serve? Who should formulate them? Can guidelines be practical? Are there obstacles to creating or implementing guidelines? Is dying a process amenable to direction under guidelines by physicians, departments of health, blue ribbon panels, or other regulatory bodies? What Is Known about the Value of Guidelines for Physician-Assisted Suicide? The Netherlands, where euthanasia and physician-assisted suicide are decriminalized, is the only place where guidelines have existed for any significant period. These guidelines were created by the national medical association, along with groups such as pharmacologist organizations (1-4). Americans often invoke data from the Netherlands to support their positions on guidelines for physician-assisted suicide (5-7), but there are limits to what can be learned from the Dutch experience. Although the Dutch people value guidelines for a practice that is still technically illegal there, the force and precision of guidelines are not what would be expected were the practice legal. Dutch physicians note that many physicians do not follow guidelines (8), and formal studies have reported high rates of noncompliance (9). How well Dutch guidelines regulate the practice of physician-assisted suicide is a matter of dispute (1, 5, 6-8, 10). Reports of euthanasia without an unambiguous request to die prompted a re-examination of prevailing guidelines. The Netherlands has adopted more restrictive rules, with tougher reporting and witness requirements (8, 9). Studies comparing practices in 1995 with those in 1990 have found that involuntary euthanasia continues to occur at a minimally lower rate. However, many deaths with assistance are not reported to the authorities (11). Differences in the health systems and social structure between the Netherlands and the United States further complicate comparisons. What Is the Purpose of Guidelines for Physician-Assisted Suicide? The first published proposals for U.S. guidelines to govern the implementation of legal physician-assisted suicide appeared in the early 1990s. The movement to create guidelines has been a key component in efforts toward legalization and has focused on how to implement a decision to proceed with physician-assisted suicide (rather than on how to decide that physician-assisted suicide is the right course for an individual patient). Some of the efforts have created model statutes or legislation, but most talk has focused on providing practical guidance about implementing physician-assisted suicide in an authoritative document. Legalization is not a prerequisite for the creation of guidelines. Many who initially called for guidelines noted that physician-assisted suicide was already occurring in the United States. They argued that it would be better to have some sort of guidance for physicians rather then leaving physicians and patients to their own devices. Those favoring legalization thought that the cause of legalization would be advanced by promoting practical guidelines. This created a situation in which guidelines were often viewed as nothing more then a stalking horse for efforts to legalize physician-assisted suicide. Jack Kevorkians actions and advocacy brought new urgency to guideline writing efforts. Lonnie Shavelson (12) documented several cases in which he felt that persons had assisted others to die for morally dubious reasons. The popularity of books such as Final Exit (13) and Last Wish (14) made it clear that the public was interested in assisted suicide. Sherwin Nulands book How We Die (15) reinforced the view that the prevailing standard of clinical care for the dying was often not what patients and their families wanted. The inadequate state of end-of-life care became further evident in the findings of the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) (16, 17). It was obvious that something had to be done to standardize and improve the overall care of dying patients. If such improvements did not take place, assisted suicide might become commonplace, without input from those most experienced in caring for the terminally ill. Those calling for regulation of physician-assisted suicide often made analogies to the effect that law and regulation had had on the practice of forgoing, withdrawing, and withholding life support. The willingness of society to accept the cessation of ventilator use, renal dialysis, antibiotic therapy, and other life-sustaining interventions on the basis of policies, guidelines, and review by ethics committees made many believe that what had worked effectively for forgoing life-sustaining treatment could work for physician-assisted suicide (5, 18). Finally, in several opinion surveys of the early 1990s, it became clear that many patients and physicians would consider undertaking physician-assisted suicide for reasons that experts in end-of-life care found troubling or simply erroneous (19). Those polled said that they would consider physician-assisted suicide if they were in terrible pain or had to depend on machines. This made some proponents think that regulation was essential to ensure that persons who were disabled or in pain would not prematurely seize upon physician-assisted suicide. Who Should Write Guidelines? Despite all the efforts directed toward guideline development, there has been relatively little discussion of who should create them. In Oregon, responsibility for guideline development fell to the Department of Health, although a medical society (20) and a blue ribbon panel also offered guidance (21). Other organized groups that have issued guidelines have tended to consist of professors and academics, with or without clinicians. Political necessity, more than expertise or clinical involvement with terminally ill patients, may have motivated these groups to formulate guidelines (22, 23). One notable exception was the Bay Area Network of Ethics Committee, which in 1997 issued guidelines to help clinicians respond to requests for assisted suicide (24). In part, these guidelines were created in response to numerous requests for physician-assisted suicide from San Francisco residents dying of AIDS. Obviously, persons favoring legalization are most likely to write guidelines. In the few instances in which medical groups (Michigan Medical Society and New York Academy of Medicine) tried to write guidelines without previous agreement about the desirability of physician-assisted suicide, the efforts collapsed (25). Critics sometimes address the specifics of proposed guidelines but more often reject guidelines on general grounds (for example, no guidelines could ever be sufficient to prevent the inclusion of inappropriate cases [7, 25]) or as an opportunity to engage in further debate about the general moral merits of legalization (25-27). Of interest, when proponents write guidelines, the intended audience is clinicians or public policymakers rather than the general public. Although religious groups have spoken about the morality of physician-assisted suicide, none has issued specific guidelines on its implementation or monitoring (28). The Task Force to Improve the Care of Terminally-Ill Oregonians, formed to provide guidance in implementing the Oregon law, was composed mostly of physicians, nurses, and attorneys (21). No patient or consumer groups have issued specific guidelines. This is especially noteworthy given the growing interest in the spiritual and psychological dimensions of dying, as reflected in the enormous popularity of books focusing on these aspects of dying (29-35). Guidelines have mostly been seen as norms or rules for physicians, not as general principles about how Americans ought to think about, control, or implement physician-assisted suicide. In fact, the U.S. debate about assisted suicide seems to focus on the presumption that the persons who should be most concerned about implementing assisted suicide are physicians (36). Perhaps this stance is partly fueled by the vociferous opposition to assisted suicide by organized medicine and nursing throughout the 1990s on the grounds that such behavior violates norms of professional ethics. But the centrality of clinicians as the audience for guidelines may also reflect a deeply held U.S. view that dying is a matter with which health care professionals and biomedical science must contend (15, 35). Content of Guidelines for Physician-Assisted Suicide A sample of the guidelines reveals consistent core content (Table). In examining the first set of guidelines published in a major medical journal (37), other guidelines reported in prominent publications (22-24), and state requirements (Oregon), many common themes emerge. All require the individuals informed consent for participation, and most recommend a waiting period to ensure the authenticity of a request. Most guidelines call for consent to be written and witnessed. Table. Guidelines for Implementing Physician-Assisted Suicide Guidelines that involve more physician input include references to conscientious objection. These guidelines also try to capture the importance of good physicianpatient relationships with discussions of meaningful or established relationships. T

Remediating Lapses in Professionalism

This chapter describes how medical educators can use measures of moral reasoning and professional identity formation to provide students with a diagnostic assessment of strengths and shortcomings in their understanding of the ethical and moral dimensions of professionalism. In addition to providing examples of programs designed to address an event for an individual or group (e.g., cheating, subpar behavior in practice), the authors highlight strategies they have found effective in therapeutic interactions with students who present particular challenges.

Common Variable Immunodeficiency and Breast Cancer

We describe two women with early onset breast cancer (at ages 31 and 38) who were found to have common variable immunodeficiency (CVID). Both women had a history of frequent and unusual bacterial infections. The incidence of breast cancer in young women and of CVID are both low, and the coincident diagnosis in two patients from a relatively small population base suggests the possibility of a pathophysiologic or causal relationship.

Casting Off the Perishable

In this narrative, the author, a physician, recounts her mothers courageous, controversial final decisions and the interior struggles that subsequently confront the daughter-doctor. Family dynamics are outlined in this journalistic format, and tensions including the daughters commitment to defending her mothers choice and the daughters own grief, are presented.