Linda L. Emanuel

Advance Directives for Medical Care — A Case for Greater Use

UNLABELLED BACKGROUND. Advance directives for medical care and the designation of proxy decision makers to guide medical care after a patient has become incompetent have been widely advocated but little studied. We investigated the attitudes of patients toward planning, perceived barriers to such planning, treatment preferences in four hypothetical scenarios, and the feasibility of using a particular document (the Medical Directive) in the outpatient setting to specify advance directives. METHODS We surveyed 405 outpatients of 30 primary care physicians at Massachusetts General Hospital and 102 members of the general public in Boston and asked them as part of the survey to complete the Medical Directive. RESULTS Advance directives were desired by 93 percent of the outpatients and 89 percent of the members of the general public (P greater than 0.2). Both the young and the healthy subgroups expressed at least as much interest in planning as those older than 65 and those in fair-to-poor health. Of the perceived barriers to issuing advance directives, the lack of physician initiative was among the most frequently mentioned, and the disturbing nature of the topic was among the least. The outpatients refused life-sustaining treatments in 71 percent of their responses to options in the four scenarios (coma with chance of recovery, 57 percent; persistent vegetative state, 85 percent; dementia, 79 percent; and dementia with a terminal illness, 87 percent), with small differences between widely differing types of treatments. Specific treatment preferences could not be usefully predicted according to age, self-rated state of health, or other demographic features. Completing the Medical Directive took a median of 14 minutes. CONCLUSIONS When people are asked to imagine themselves incompetent with a poor prognosis, they decide against life-sustaining treatments about 70 percent of the time. Health, age, or other demographic features cannot be used, however, to predict specific preferences. Advance directives as part of a comprehensive approach such as that provided by the Medical Directive are desired by most people, require physician initiative, and can be achieved during a regular office visit.

Assistance from Family Members, Friends, Paid Care Givers, and Volunteers in the Care of Terminally Ill Patients

BACKGROUND In addition to medical care, dying patients often need many types of assistance, including help with transportation, nursing care, homemaking services, and personal care. We interviewed terminally ill adults and their care givers in six randomly selected areas of the United States (five metropolitan areas and one rural county) to determine how their needs for assistance were met and the frequency with which they received such assistance from family members and paid and volunteer care givers. METHODS The patients, whose physicians estimated them to have less than six months to live and who had clinically significant illness other than human immunodeficiency virus infection or the acquired immunodeficiency syndrome, were referred to the study by their physicians. Of the 1131 eligible patients, 988 (87.4 percent) consented to a detailed in-person interview conducted in English, as did 893 of the 915 eligible primary care givers (97.6 percent). RESULTS Of the 988 terminally ill patients, 59.4 percent were over the age of 65 years, and 51.5 percent were women. The most frequent terminal illness was cancer (in 51.8 percent of the patients), followed by heart disease (18.0 percent) and chronic obstructive pulmonary disease (10.9 percent). Four percent of the patients were in an institution, such as a nursing home, residential hospice, or hospital; the rest were living in a private residence. A need for assistance was reported by 86.8 percent of the patients; they required help with transportation (reported by 62.0 percent), homemaking services (55.2 percent), nursing care (28.7 percent), and personal care (26.0 percent). Of the care givers, 72.1 percent were women. Primary care givers were family members in 96.0 percent of cases; only 4.0 percent were unrelated. Most patients relied completely on family members and friends for assistance. A total of 15.5 percent of patients relied only on paid assistance for more than half of the types of care that they needed. Volunteers (that is, unpaid helpers who were not family members or friends) provided less than 3 percent of all care. CONCLUSIONS In our survey of terminally ill patients, family members, usually women, provided the majority of assistance with nonmedical care. Although many people received assistance from paid care givers, very few had assistance from volunteers.

Medical professionalism in society.

Today, at the dawn of a new century, genuine medical professionalism is in peril. Increasing-ly, physicians encounter perverse financial incentives, fierce market competition, and the erosion of pa...

What Is Accountability in Health Care

Occasionally, a single word comes to dominate discussions about a topic, becoming what the British critic Raymond Williams called a keyword [1]. This single word develops a fundamental role in organizing related ideas on the topic; it serves as a short-hand expression for an entire view; and persons with diverse perspectives affirm its importance. Indeed, the entire topic somehow seems incomplete without that term. In matters of justice, equality is a keyword. In medical ethics, autonomy is a keyword. In health policy, accountability has become a keyword. In President Clintons Health Security Act, accountability was made a critical part of the program [2]. In addition, the advocates of managed competition renamed health maintenance organizations accountable health plans [3]. Notions about accountability are more than descriptions of the current system; they are also normative guides to determine the institutional structures for health care organizations and the type of health care delivery system we should have. Indeed, much of the conflict surrounding managed care plans can be viewed as a debate about what constitutes the appropriate form of accountability for them. At its most general, accountability is about individuals who are responsible for a set of activities and for explaining or answering for their actions. Accountability therefore entails procedures and processes by which one party provides a justification and is held responsible for its actions by another party that has an interest in the actions [4, 5]. Many questions about specifics remain. Who are the parties that should be held accountable? By whom? What are the issues for which these parties are held accountable? What are the standards for accountability? How and by what procedures should the parties be held accountable? To help elucidate the concept of accountability, we consider the components of accountabilitythe who, what, and howby defining the parties in health care that can be held accountable, the issues for which a party can be held accountable, and the appropriate mechanisms for accountability in health care. We then delineate three models of accountabilitythe professional, the economic, and the politicalelucidating the role of the patient and the physician, the manner in which health care is valued, procedures for expressing disagreement, and institutional structures established to implement accountability. Finally, we critically evaluate the models and consider the institutional arrangements necessary to realize a preferred model of accountability. The Components of Accountability WhoThe Locus of Accountability In health care, at least 11 distinct parties can be held accountable or hold others accountable: individual patients; individual physicians; nonphysician health care providers such as nurses and physical therapists; hospitals; managed care plans; professional associations; employers, such as General Motors; private payers, such as Blue Cross; the government; investors and lenders of capital; and lawyers and courts. This list is neither exhaustive nor immutable. There may be other parties, such as pharmaceutical companies; as health care evolves, other parties may develop important roles in health care, and some of the listed parties may play less important roles. In addition, some of the parties play multiple roles. For example, through the Health Care Financing Administration, the government acts as a payer; through Veterans Affairs Hospitals, it acts as a health care institution; and through Congress and other elected bodies, it can act as a community advocate and representative. WhatThe Domains of Accountability A domain of accountability is an activity, practice, or issue for which a party can legitimately be held responsible and called on to justify or change its action. Accountability in health care consists of at least six domains: professional competence, legal and ethical conduct, financial performance, adequacy of access, public health promotion, and community benefit. Some domains of accountability such as competence and legal and ethical conduct are well accepted; others are more contested. For instance, most agree that the financial matters for which [providers are] (or could be) held accountable include the price of services, the efficiency with which they are provided, assurance that services billed for were delivered, and the overall financial performance and economic health of the [providers] [5]. However, adequacy of access has been even more controversial. Medical associations and prominent physicians have argued for a physicians duty to care for the poor, but efforts have not been systematically supported and have never been required for licensure or certification [6-8]. Similarly, public health promotion, although often supported by physicians and medical associations, has never been a component of physician licensure or certification [9-11]. Some also doubt whether community benefit is part of accountability in health care. Yet, some physicians and health care organizations have viewed their mission to be as much community development as reduction in morbidity and mortality, and others have tried to define a community benefit standard by which to assess hospital performance [12-16]. Thus, we include even the contested areas in the nosology of domains for accountability. Operationally, within any domain, a party will be held accountable for specific content areas based on substantive criteria, which some commentators call managerial accountability [4]. For example, within the area of competence, a physician might be held accountable for risk-adjusted mortality rates for a particular disease, complication rates for certain procedures, screening test rates, or overall patient satisfaction. For each content area, criteria are established for evaluating performance. The criteria can be either explicit or implicit. Existing explicit criteria for professional competence have included hospital mortality rates collected and published by the Health Care Financing Administration and malpractice claims filed in the National Practitioner Data Bank. Similarly, explicit criteria for the financial performance of physicians in some managed care plans have included the number of specialist referrals and test-ordering patterns. In the realm of legal and ethical conduct, nonbinding resolutions by professional organizations can be substantive criteria. Implicit criteria for professional competence might include perceived quality based on press reports. Over time, implicit criteria can evolve into explicit criteria [4, 5]. HowThe Procedures of Accountability In general, there are two components to the procedures of accountability. The first is evaluation of the adherence to or compliance with the criteria for specific content areas. The second is dissemination of the evaluation and responses or justifications by the accountable party or parties. Different procedures for evaluation and dissemination are appropriate to the different domains. In addition, the procedures for evaluation and dissemination can be formal or informal. Formal procedures of evaluation may include inspection of facilities, records, and policies by the Joint Commission for the Accreditation of Healthcare Organization and review of surgery-related mortality and morbidity data of hospitals and surgeons. The latter has been done for cardiac surgery in New York State. Importantly, many of the mechanisms for evaluation are underdeveloped and need substantial innovation, research, and refinement. In the domain of professional competence, for example, it is often desirable to assess risk-adjusted mortality and morbidity for physicians, hospitals, managed care plans, and others. However, the technical capacity for risk adjustment and other assessment standards, necessary formal accountability procedures, is still lacking. Similarly, formal procedures are available for disseminating evaluations and responses, including public hearings, certification and licensure, and, with increasing prominence, report cards. Informal procedures for evaluation and dissemination include comments during consultations between physicians for professional competence, selections of providers in the marketplace for financial performance, and evaluations by the press, such as the ranking of hospitals by U.S. News and World Report. Bradford Gray [5] has stated that the matters for which an institution is accountable to patients differ from those for which it is accountable to payers, or physicians, or providers of capital, or regulatory agencies. Moreover, the mechanisms of accountability vary substantially in their formality, ranging from the detailed contractual arrangements that are part of the capital acquisition process (for example the issuance of bonds, or the minutiae of the accreditation process) to the informal influences on hospitals of physicians and patients via the accountability of the marketplace. The selection of content areas, substantive criteria, and the procedures for evaluation and dissemination can be controversial both on the basis of the technical ability to accurately evaluate performance and on the basis of values, which are often framed in terms of appropriateness [4]. Much of the current debate on evaluation, such as that on defining quality criteria or the components of a report card, can be viewed as a contest over the proper content areas, criteria of accountability, and ability to assess the fulfillment of the criteria. In the accompanying article in this issue [17], the Working Group on Accountability characterizes within the domain of ethical conduct the substantive content areas and evaluation and dissemination procedures for which physicians and health care institutions should be held accountable. An autonomous or self-regulating profession is one that determines which domains are primary, specifies the specific content areas and substantive criteri

Understanding the experience of pain in terminally ill patients

BACKGROUND Terminally ill patients commonly experience substantial pain. Unresolved pain has been cited as evidence that end-of-life care is of poor quality. However, the data on which that conclusion is based are limited. We aimed to provide additional data on the experience of pain in such patients. METHODS We interviewed 988 terminally ill patients from six randomly selected US sites. We asked them who had treated their pain in the previous 4 weeks (primary-care physician, pain specialist, or both), and whether they wanted more pain medication than they were receiving, or why they did not want more. FINDINGS 496 (50%) terminally ill patients reported moderate or severe pain. 514 (52%) individuals had seen a primary-care physician for treatment of pain in the previous 4 weeks and 198 (20%) saw a pain specialist. Of those who had been treated by their primary-care physician, 287 (29%) wanted more therapy, 613 (62%) wanted their pain therapy to remain the same, and 89 (9%) wanted to reduce or stop their pain therapy. Several reasons for not wanting additional therapy were offered-fear of addiction, dislike of mental or physical side-effects, and not wanting to take more pills or injections. We saw no association between disease and amount of pain between disease and the desire for more treatment. Black patients were more likely to seek additional pain therapy, see a pain specialist, and refuse additional medication because of fear of addiction than other populations. INTERPRETATION Although half of terminally ill patients experienced moderate to severe pain, only 30% of them wanted additional pain treatment from their primary-care physician. The number of patients experiencing pain remains too high. However, the number is not as large as perceived. Additionally, most are willing to tolerate pain. Furthermore, the experience of pain is constant across major terminal diseases.

Planning for the end of life

of more than 100 research articles advance care planning and AD forms, Miles and colleagues concluded, “Advance treatment preferences have been shown to be difficult to form, communicate, and implement”. The key question is why? One answer may be that the traditional conceptual framework underlying advance care planning and use of AD forms is not rooted in the needs and experiences of patients. Traditionally, advance care planning was thought to help people prepare for treatment decisions in times of incapacity, to be based on the ethical principle of autonomy, and to focus on completing written AD forms within the context of the physician/patient relationship. However, from the perspective of patients, advance care planning also helps patients prepare for death, is influenced by personal relationships, is a social process, and occurs within the context of family and loved ones. 11

Competency in End-of-Life Care: Last Hours of Life

Clinical competence, willingness to educate, and calm and empathic reassurance are critical to helping patients and families in the last hours of living. This review adapted from the Education for Physicians on End-of-Life Care (EPEC) Curriculum describes the predictable course that occurs as well as approaches to management. Management principles are the same at home or in a health care institution. However, death in an institution requires accommodations to assure privacy, cultural observances, and communication that may not be customary. In anticipation of the event, it helps to inform the family and other professionals about what to do and what to expect. Care does not end until the family has been supported with their grief reactions and those with complicated grief helped to get care. Care at the end of life is a core competency.

Knowledge: insufficient for change.

145 WE HAVE LEARNED (once again) that education alone does not change patient and family experience. Or, to be more precise, education targeted to improve knowledge and attitudes does not change behavior. Allard et al.1 analyzed 33 studies of educational interventions for cancer pain control. They found that attitudes and knowledge about cancer pain could be improved. Unfortunately there was minimal change in patient’s pain. The conclusions of Allard et al.1 will come as an unwelcome surprise to many. We can hear the moans now. “They didn’t look at enough studies.” “They didn’t do them right.” “I’m sure it is different in our education program.” Although the conclusions are discouraging, they shouldn’t be surprising. We have learned the same things from education about tobacco, alcohol, sex, diet, hand-washing, hypertension, advance directives, etc. The investigators who have reported their work in all of these areas suffer from a grand and prevalent delusion. They believe that knowledge alone changes behavior. As a professor of psychiatry once told one of us “Knowledge is the booby prize . . . it doesn’t change behavior.” We can understand what we do, why we do it and how we should do it better, but the information alone won’t lead to a change in behavior. More precisely, attitudes and knowledge are necessary, but insufficient, to change behavior. If it is our goal to change the patient and family experience, we need to adopt a more precise way of understanding education. Dixon described a cascade of steps of education evaluation that remains helpful.2 We have adapted this to assist our understanding of the components or steps of education (Fig. 1). Knowledge and attitudes precede the learning of new skills. Those skills must be translated into behavior if desired outcomes are to be seen. When enough people are experiencing the desired outcomes, there will be social improvement. If we use this framework to understand the necessary steps of cancer pain education, we would say that the attitude that “it is important to control cancer pain” and the knowledge of how to control it come first. Then the skills of assessing pain, prescribing appropriate medications and teaching patients and families must be learned. Then, the clinician must change his or her behavior and implement the knowledge, attitudes and skills on a permanent basis in order for the desired outcome. Patients must also change their attitudes, knowledge, skills and behavior to control cancer pain. When these behaviors are exhibited by both clinicians and patients, the outcome will be improved reports of pain by patients. When all patients with cancer pain get good relief, we will have achieved a social good. Fortunately, there is work afoot using this framework to achieve the desired ends. There are numerous projects to disseminate education about necessary attitudes and knowledge to health care professionals. The Role Model Project is a successful model for teaching pain management.3 The Education for Physicians on End-oflife Care (EPEC) Project focusses on the attitudes and knowledge of physicians.4 The End-of-Life Nursing Education Consortium (ELNEC) is focusing on the attitudes and knowledge of nurses.5

How living wills can help doctors and patients talk about dying

Papers p 1640 Many people are unaware of living wills but are highly interested once they hear about them. In this weeks BMJ Schiff et al (p 1640) find that elderly inpatients are confused by the term living will, but most would welcome the chance to discuss issues about facing the end of life, and many would want to limit their health care if they were terminally ill.1 An assessment of the understanding of living wills in the United States some time ago found a similar state of affairs.2 This juxtaposition of ignorance and interest raises an important question: what is this apparent appetite to discuss and prepare for dying? When lawyer Louis Kutner proposed the notion of a living will in 1969, he was responding to the fear that technology was driving doctors to impose life sustaining treatment on patients who might not want it. The living will was seen as a simple device to allow patients to say no, even if they were too ill to …

Does the DNR order need life-sustaining intervention? Time for comprehensive advance directives

T he “do not resuscitate” (DNR) order has been an important restraint on the inappropriate use of cardiopulmonary resuscitation (CPR) for terminal patients. It is increasingly appreciated that there is a wide range of other interventions which, like CPR, might be deemed inappropriate at times. Thus, a reconsideration of the DNR order is needed. How has it served its purpose and how can we develop a process for making wise decisions for all types of life-sustaining interventions? In the following pages, it is argued that we must subsume the DNR decision into comprehensive and early health care directives. Empiric studies and pedagogic and policy work to inform physicians how and where these deliberations and determinations might best occur are just beginning [l31. Different approaches to early comprehensive directives are outlined, and at the conclusion of this article, there is a case report that illustrates one of the approaches, that of discussion initiated during an office visit.