Prevalence of and Factors Related to Discordance About Prognosis Between Physicians and Surrogate Decision Makers of Critically Ill Patients.

IMPORTANCE: Misperceptions about prognosis by individuals making decisions for incapacitated critically ill patients (surrogates) are common and often attributed to poor comprehension of medical information. OBJECTIVE: To determine the prevalence of and factors related to physician-surrogate discordance about prognosis in intensive care units (ICUs). DESIGN, SETTING, AND PARTICIPANTS: Mixed-methods study comprising quantitative surveys and qualitative interviews conducted in 4 ICUs at a major US medical center involving surrogate decision makers and physicians caring for patients at high risk of death from January 4, 2005, to July 10, 2009. MAIN OUTCOMES AND MEASURES: Discordance about prognosis, defined as a difference between a physician's and a surrogate's prognostic estimates of at least 20%; misunderstandings by surrogates (defined as any difference between a physician's prognostic estimate and a surrogate's best guess of that estimate); differences in belief (any difference between a surrogate's actual estimate and their best guess of the physician's estimate). RESULTS: Two hundred twenty-nine surrogate decision makers (median age, 47 [interquartile range {IQR}, 35-56] years; 68% women) and 99 physicians were involved in the care of 174 critically ill patients (median age, 60 [IQR, 47-74] years; 44% women). Physician-surrogate discordance about prognosis occurred in 122 of 229 instances (53%; 95% CI, 46.8%-59.7%). In 65 instances (28%), discordance was related to both misunderstandings by surrogates and differences in belief about the patient's prognosis; 38 (17%) were related to misunderstandings by surrogates only; 7 (3%) were related to differences in belief only; and data were missing for 12. Seventy-five patients (43%) died. Surrogates' prognostic estimates were much more accurate than chance alone, but physicians' prognostic estimates were statistically significantly more accurate than surrogates' (C statistic, 0.83 vs 0.74; absolute difference, 0.094; 95% CI, 0.024-0.163; P = .008). Among 71 surrogates interviewed who had beliefs about the prognosis that were more optimistic than that of the physician, the most common reasons for optimism were a need to maintain hope to benefit the patient (n = 34), a belief that the patient had unique strengths unknown to the physician (n = 24), and religious belief (n = 19). CONCLUSIONS AND RELEVANCE: Among critically ill patients, discordant expectations about prognosis were common between patients' physicians and surrogate decision makers and were related to misunderstandings by surrogates about physicians' assessments of patients' prognoses and differences in beliefs about patients' prognoses.

The uncommon case of Jahi McMath.

A 13-year-old patient named Jahi McMath was determined to be dead by neurologic criteria following cardiopulmonary arrest and resuscitation at a hospital in Oakland, California. Her family did not agree that she was dead and refused to allow her ventilator to be removed. The family's attorney stated in the media that families, rather than physicians, should decide whether patients are dead and argued in the courts that the families' constitutional rights of religion and privacy would be violated otherwise. Ultimately, a judge agreed that the patient was dead in keeping with California law, but the constitutional issue was undecided. The patient was then transferred to a hospital in New Jersey, a state whose laws allow families to require on religious grounds that death be determined by cardiopulmonary criteria. Although cases such as this are uncommon, they demonstrate public confusion about the concept of neurologic death and the rejection of this concept by some families. The confusion may be caused in part by a lack of uniformity in state laws regarding the legal basis of death, as reflected in the differences between New Jersey and California statutes. Families who reject the determination of death by neurologic criteria on religious grounds should be given reasonable accommodation in all states, but society should not pay for costly treatments for patients who meet these criteria unless the state requires it, as only New Jersey does. Laws that give physicians the right to determine death by neurologic criteria in other states probably can survive a constitutional challenge. Physicians and hospitals faced with similar cases in the future should follow state laws and work through the courts if necessary.

Chronic disorders of consciousness following coma: Part one: medical issues.

Increasing numbers of patients survive traumatic brain injury (TBI) and cardiopulmonary arrest and resuscitation and are admitted to the ICU in coma. Some of these patients become brain dead; others regain consciousness. Still others become vegetative or minimally conscious, conditions called chronic disorders of consciousness and ultimately are cared for outside the ICU. Comatose patients lack the wakefulness and awareness that distinguish consciousness from unconsciousness. Vegetative patients are awake in that they manifest sleep-wake cycles, but they are unaware of their environment and cannot respond to stimuli. Minimally conscious patients are awake, aware to a limited extent, and somewhat responsive. The diagnosis of the vegetative and minimally conscious states has been based largely on their behavioral and pathologic features, and it has been believed that vegetative patients remain in that condition permanently. Nevertheless, EEG and neuroimaging studies suggest that the traditional diagnostic approach is imprecise. Moreover, clinical investigations have revealed that some vegetative patients can become minimally conscious and that some minimally conscious patients can gain increased awareness. Few therapies for patients with chronic disorders of consciousness have been subjected to randomized trials. Furthermore, although a small number of patients have improved neurologically with or without treatment, their overall prognosis for neurologic recovery remains poor.

Chronic disorders of consciousness following coma: Part two: ethical, legal, and social issues.

Increasing numbers of patients survive traumatic brain injury and cardiopulmonary arrest and resuscitation and are admitted to the ICU while in coma. Some of these patients become brain dead; others regain consciousness. Still others become vegetative or minimally conscious, conditions called chronic disorders of consciousness and ultimately can be cared for outside the ICU. Whether these patients would want life-sustaining therapy is difficult to determine because most have not articulated their wishes before becoming comatose. Ethics and law recognize that patients with decision-making capacity have a right to refuse such therapy and that surrogates can exercise this right for them through the principle of substituted judgment as was established by the Supreme Court of New Jersey in the case of Karen Ann Quinlan. In its decision regarding Nancy Cruzan, the US Supreme Court determined that states may require clear and convincing evidence of a vegetative patient's prior wishes before life-sustaining therapy may be withdrawn; this standard has been applied to minimally conscious patients by state supreme courts in some cases. Nevertheless, cases such as these only come to the legal system because end-of-life decisions are contested, which is unusual, and most end-of-life decisions for specific patients with chronic disorders of consciousness are made by surrogates with recommendations from physicians without court involvement. Recent advances in neuroimaging may influence both end-of-life decision-making and legal deliberations. Targeting vegetative and minimally conscious patients in medical resource allocation remains ethically unacceptable and untested in the law.

A strange new disease in San Francisco:a brief history of the city and its response to the HIV/AIDS epidemic.

Advancements were made in the understanding of the human immunodeficiency virus (HIV) and the management of patients with the acquired immunodeficiency syndrome (AIDS) in many parts of the United States after such patients were first identified in 1981. Nevertheless, the relatively small city of San Francisco contributed a disproportionate share of them, due largely to the city's inclusive political and community response to the HIV/AIDS epidemic, including the activities of its Department of Public Health and San Francisco General Hospital (SFGH). San Francisco's colorful history, multicultural character, and tradition of tolerance attracted many patients who would develop HIV/AIDS to the city. The same factors underlaid the community's compassionate response when large numbers of these patients needed medical services. These factors also motivated the physicians, nurses, and other health professionals at SFGH who cared for the patients on the world's first inpatient AIDS ward.

A history of resolving conflicts over end-of-life care in intensive care units in the United States.

OBJECTIVES: To present a case of conflict over end-of-life care in the intensive care unit (ICU) and to describe how such conflicts have been resolved in the United States since the inception of ICUs. DATA SOURCES: A nonsystematically derived sample of published studies and professional and lay commentaries on end-of-life care, ethical principles, medical decision-making, medical futility, and especially conflict resolution in the ICU. STUDY SELECTION: Some of those studies and commentaries dealing specifically with conflicts over end-of-life care in the ICU and their resolution. DATA SYNTHESIS: An historical review of conflict resolution over end-of-life issues in U.S. ICUs. RESULTS AND CONCLUSIONS: Conflict at the end of life in ICUs in the United States is relatively rare because most families and physicians agree about how patients should be treated. Nevertheless, conflict still exists over some patients whose families insist on care that physicians consider inappropriate and hence inadvisable, and over other patients whose families object to care that physicians prefer to provide. When such conflict occurs, mediation between families and physicians is usually successful in resolving it. Consultation from ethics committees also may be helpful in achieving resolution, and one state actually allows such committees to adjudicate disputes. Physicians who act unilaterally against family wishes run the risk of malpractice suits, although such suits usually are unsuccessful because the physicians are not shown to have violated standards of care.

"It's not just what the doctor tells me:" factors that influence surrogate decision-makers' perceptions of prognosis.

OBJECTIVE: Physicians and surrogate decision-makers for seriously ill patients often have different views of patients' prognoses. We sought to understand what sources of knowledge surrogates rely on when estimating a patient's prognosis. DESIGN: Prospective, mixed-methods study using face-to-face, semistructured interviews with surrogate decision-makers. SETTING: Four intensive care units at the University of California, San Francisco Medical Center in 2006 to 2007. PARTICIPANTS: Participants were 179 surrogate decision-makers for 142 incapacitated, critically ill patients at high risk for death. MAIN RESULTS: Less than 2% (3 of 179) of surrogates reported that their beliefs about the patients' prognoses hinged exclusively on prognostic information provided to them by physicians. The majority cited other factors in addition to physicians' predictions that also contributed to their beliefs about the patients' prognoses, including perceptions of the patient's individual strength of character and will to live; the patient's unique history of illness and survival; the surrogate's own observations of the patient's physical appearance; the surrogate's belief that their presence at the bedside may improve the prognosis; and the surrogate's optimism, intuition, and faith. For some surrogates, these other sources of knowledge superseded the importance of the physician's prognostication. However, most surrogates endeavored to balance their own knowledge of the patient with physicians' biomedical knowledge. CONCLUSIONS: Surrogates use diverse types of knowledge when estimating their loved ones' prognoses, including individualized attributes of the patient, such as their strength of character and life history, of which physicians may be unaware. Attention to these considerations may help clinicians identify and overcome disagreements about prognosis.

End-of-life decision making in the intensive care unit.

Increasingly in the United States and other countries, medical decisions, including those at the end of life, are made using a shared decision-making model. Under this model, physicians and other clinicians help patients clarify their values and reach consensus about treatment courses consistent with them. Because most critically ill patients are decisionally impaired, family members and other surrogates must make end-of-life decisions for them, ideally in accord with a substituted judgment standard. Physicians generally make decisions for patients who lack families or other surrogates and have no advance directives, based on a best interests standard and occasionally in consultation with other physicians or with review by a hospital ethics committee. End-of-life decisions for patients with surrogates usually are made at family conferences, the functioning of which can be improved by several methods that have been demonstrated to improve communications. Facilitative ethics consultations can be helpful in resolving conflicts when physicians and families disagree in end-of-life decisions. Ethics committees actually are allowed to make such decisions in one state when disagreements cannot be resolved otherwise.

Are physicians' recommendations to limit life support beneficial or burdensome? Bringing empirical data to the debate.

RATIONALE: Although there is a growing belief that physicians should routinely provide a recommendation to surrogates during deliberations about withdrawing life support, there is a paucity of empirical data on surrogates' perspectives on this topic. OBJECTIVES: To understand the attitudes of surrogate decision-makers toward receiving a physician's recommendation during deliberations about whether to limit life support for an incapacitated patient. METHODS: We conducted a prospective, mixed methods study among 169 surrogate decision-makers for critically ill patients. Surrogates sequentially viewed two videos of simulated physician-surrogate discussions about whether to limit life support, which varied only by whether the physician gave a recommendation. MEASUREMENTS AND MAIN RESULTS: The main quantitative outcome was whether surrogates preferred to receive a physicians' recommendation. Surrogates also participated in an in-depth, semistructured interview to explore the reasons for their preference. Fifty-six percent (95/169) of surrogates preferred to receive a recommendation, 42% (70/169) preferred not to receive a recommendation, and 2% (4/169) felt that both approaches were equally acceptable. We identified four main themes that explained surrogates' preferences, including surrogates' perceptions of physicians' appropriate role in life or death decisions and their perceptions of the positive or negative consequences of a recommendation on the physician-surrogate relationship, on the decision-making process, and on long-term regret for the family. CONCLUSIONS: There is no consensus among surrogates about whether physicians should routinely provide a recommendation regarding life support decisions for incapacitated patients. These findings suggest that physicians should ask surrogates whether they wish to receive a recommendation regarding life support decisions and should be flexible in their approach to decision-making.

Informed consent for clinical research involving patients with chest disease in the United States.

The concept of informed consent was applied to clinical research in the United States after research abuses were documented in Nazi Germany and this country. The concept is imbedded in the Nuremberg Code, the Declaration of Helsinki, and the Belmont Report. Federal regulations governing clinical research require both the consent of subjects and peer review of research proposals by institutional review boards (IRBs). Subpart A of the Code of Federal Regulations contains basic provisions for the protection of research subjects and requirements for informed consent by subjects or their surrogates; surrogate consent may or may not be allowed under state law. Other subparts contain further protections for subjects with diminished capacity, such as children, that limit the kind of research in which they can participate. Whether these protections should be extended to decisionally impaired adults, including those who are critically ill, remains to be determined. Consent can be deferred or waived for emergency research only rarely in the United States, in contrast to other countries.

A history of ethics and law in the intensive care unit.

Because they provide potential benefit at great personal and public cost, the intensive care unit (ICU) and the interventions rendered therein have become symbols of both the promise and the limitations of medical technology. At the same time, the ICU has served as an arena in which many of the ethical and legal dilemmas created by that technology have been defined and debated. This article outlines major events in the history of ethics and law in the ICU, covering the evolution of ICUs, ethical principles, informed consent and the law, medical decision-making, cardiopulmonary resuscitation, withholding and withdrawing life-sustaining therapy, legal cases involving life support, advance directives, prognostication, and futility and the allocation of medical resources. Advancement of the ethical principle of respect for patient autonomy in ICUs increasingly is in conflict with physicians' concern about their own prerogatives and with the just distribution of medical resources.

Who should receive life support during a public health emergency? Using ethical principles to improve allocation decisions.

A public health emergency, such as an influenza pandemic, will lead to shortages of mechanical ventilators, critical care beds, and other potentially life-saving treatments. Difficult decisions about who will and will not receive these scarce resources will have to be made. Existing recommendations reflect a narrow utilitarian perspective, in which allocation decisions are based primarily on patients' chances of survival to hospital discharge. Certain patient groups, such as the elderly and those with functional impairment, are denied access to potentially life-saving treatments on the basis of additional allocation criteria. We analyze the ethical principles that could guide allocation and propose an allocation strategy that incorporates and balances multiple morally relevant considerations, including saving the most lives, maximizing the number of "life-years" saved, and prioritizing patients who have had the least chance to live through life's stages. We also argue that these principles are relevant to all patients and therefore should be applied to all patients, rather than selectively to the elderly, those with functional impairment, and those with certain chronic conditions. We discuss strategies to engage the public in setting the priorities that will guide allocation of scarce life-sustaining treatments during a public health emergency.

Surrogate decision-makers' perspectives on discussing prognosis in the face of uncertainty.

RATIONALE: Many physicians are reluctant to discuss a patient's prognosis when there is significant prognostic uncertainty. OBJECTIVES: We sought to understand surrogate decision makers' views regarding whether physicians should discuss prognosis in the face of uncertainty. METHODS: We conducted semi-structured interviews with 179 surrogates for 142 incapacitated patients at high risk of death in four intensive care units at an academic medical center. The interviews explored surrogates' attitudes about whether physicians should discuss prognosis when they cannot be certain their prognostic estimates are correct. We used constant comparative methods to analyze the transcripts. Validation methods included triangulation by multidisciplinary analysis and member checking. MEASUREMENTS AND MAIN RESULTS: Eighty-seven percent (155/179) of surrogates wanted physicians to discuss an uncertain prognosis. We identified five main reasons for this, including surrogates' belief that prognostic uncertainty is unavoidable, that physicians are their only source for prognostic information, and that discussing prognostic uncertainty leaves room for realistic hope, increases surrogates' trust in the physician, and signals a need to prepare for possible bereavement. Twelve percent (22/179) of surrogates felt that discussions about an uncertain prognosis should be avoided. The main explanation was that it is not worth the potential emotional distress if the prognostications are incorrect. Surrogates suggested that physicians should explicitly discuss uncertainty when prognosticating. CONCLUSIONS: The majority of surrogates of patients that are critically ill want physicians to disclose their prognostic estimates even if they cannot be certain they are correct. This stems from surrogates' belief that prognostic uncertainty is simultaneously unavoidable and acceptable.

Hope, truth, and preparing for death: perspectives of surrogate decision makers.

BACKGROUND: Although many physicians worry that openly discussing a poor prognosis will cause patients and families to lose hope, surrogate decision makers' perspectives on this topic are largely unknown. OBJECTIVE: To determine surrogate decision makers' attitudes toward balancing hope and telling the truth when discussing prognosis. DESIGN: Prospective, mixed-methods cohort study. SETTING: 4 intensive care units at the University of California, San Francisco, Medical Center, San Francisco, California. PARTICIPANTS: 179 surrogate decision makers for incapacitated patients at high risk for death. MEASUREMENTS: One-on-one, semistructured interviews with surrogates were conducted on the patients' 5th day of receiving mechanical ventilation. Constant comparative methods were used to inductively develop a framework to describe participants' responses. Validation methods included multidisciplinary analysis and member checking. RESULTS: Overall, 93% (166 of 179) of surrogates felt that avoiding discussions about prognosis is an unacceptable way to maintain hope. The main explanatory theme was that timely discussion of prognosis is essential to allow family members to prepare emotionally and logistically for the possibility of a patient's death. Other themes that emerged included surrogates' belief that an accurate understanding of a patient's prognosis allows them to better support the patient and each other, a moral aversion to the idea of false hope, the perception that physicians have an obligation to discuss prognosis, and the notion that some surrogates look to physicians primarily for truth and seek hope elsewhere. A few surrogates (6 of 179) felt that physicians should withhold prognostic information because of a belief that discussing death could be emotionally damaging to the family or could negatively affect the patient's health. LIMITATION: The authors did not longitudinally assess whether early disclosure about prognosis predicts fewer adverse bereavement outcomes. CONCLUSION: Most surrogates of critically ill patients do not view withholding prognostic information as an acceptable way to maintain hope, largely because timely discussions about prognosis help families begin to prepare emotionally, existentially, and practically for the possibility that a patient will die.

Medical malpractice and the chest physician.

The US malpractice system is based on tort law, which holds physicians responsible for not harming patients intentionally or through negligence. Malpractice claims are brought against physicians from most medical disciplines in proportion to their numbers in practice and to the frequency with which they perform procedures. Claims against chest physicians most commonly allege injuries caused by the following: (1) errors in diagnosis, (2) improper performance of procedures, (3) failure to supervise or monitor care, (4) medication errors, and (5) failure to recognize the complications of treatment. Most of these injuries occur in hospitals, and many of the injured patients die. The social goals of the medical malpractice system include the following: (1) compensating patients injured through negligence, (2) exacting corrective justice, and (3) deterring unsafe practices by creating an economic incentive to take greater precautions. Some patients injured through negligence are compensated, but most are not. Claims are brought against some negligent physicians but also some who are not negligent, and being negligent does not guarantee that a claim will be brought. The deterrent effect of medical malpractice is unproven, and the malpractice system may prompt defensive medicine and increase health-care costs. And by stressing individual accountability, it conflicts with a systems-oriented approach to reducing medical errors.