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lthough most Americans die in hospitals, there is considerable uncertainty about the appropriate role of hospital legal counsel in decisions about care at the end of life. This report describes the results and implications for action, in New York and elsewhere, of a study of the roles that legal counsel play in these decisions in six hospitals in New York City.
The two foundations that collaborated on this report have for many years addressed significant issues in health care. The Milbank Memorial Fund is a national foundation that supports nonpartisan analysis, study, research, and communication on significant issues in health policy. The United Hospital Fund is a nonprofit health services research and philanthropic organization, actively working to shape New York's health care through information, philanthropy, and policy initiatives.
Both foundations are committed to improving care at the end of life. The United Hospital Fund's Hospital Palliative Care Initiative is a multi-year effort that since 1996 has gathered information about end-of-life care in New York City hospitals and is helping to support improvements in hospitals' provision of care to dying patients and their families. The Milbank Memorial Fund has since 1994 worked with decision makers in the federal government and the states, as well as the private sector, to improve policy for financing end-of-life care and to address legal constraints on the provision of appropriate care.
This report is a joint effort of persons associated with both foundations' projects to improve care at the end of life. Connie Zuckerman took the lead in interviewing hospital counsel and clinicians and writing the report as project director of the Hospital Palliative Care Initiative. Robert Burt, of Yale Law School, and Christine Cassel, of The Mount Sinai Medical Center, who introduce the report, are leaders of the Milbank Memorial Fund's work on policy for care at the end of life. They collaborated with Zuckerman in designing the inquiry and convened meetings to review drafts of the report and assess its implications for clinical, institutional, and public policy. Other persons contributed to this report by attending meetings and reviewing drafts; they are listed in the Acknowledgments.
Daniel M. Fox
President, Milbank Memorial FundDavid Gould
Senior Vice President for Program
United Hospital Fund
AcknowledgmentsThe following persons participated in meetings and/or reviewed this report in draft. They are listed in the positions they held at the time of their participation.
Karen Bonuck, Assistant Professor, Department of Social Medicine, Montefiore Medical Center/ Albert Einstein College of Medicine; Marilyn Bookbinder, Nurse Educator, Department of Pain Medicine and Palliative Care, Beth Israel Medical Center; Kathleen M. Burke, Corporate Secretary, The New York Hospital; Robert A. Burt, Alexander M. Bickel Professor of Law, Yale Law School; Joel Cantor, Director of Research, United Hospital Fund; Carol Capello, Communications Director, Department of Geriatrics and Adult Development, The Mount Sinai Medical Center; Christine K. Cassel, Professor and Chairman, Department of Geriatrics and Adult Development, The Mount Sinai Medical Center; Carl Coleman, Executive Director, New York State Task Force on Life and the Law; Nancy Dubler, Director, Division of Bioethics, Montefiore Medical Center; Susan Fiske, Assistant Counsel, Saint Vincents Hospital and Medical Center; Alan Fleischman, Senior Vice President, New York Academy of Medicine; Karen Gallinari, Director of Legal and Regulatory Affairs, Staten Island University Hospital; David Gould, Senior Vice President for Program, United Hospital Fund; Deborah Halper, Director, Division of Education and Program Initiatives, United Hospital Fund; Navah Harlow, Director, Ethics in Medicine, Beth Israel Medical Center; Alice Herb, Hospital Ethicist, Brooklyn Hospital Center; Marshall Kapp, Director, Office of Geriatric Medicine and Gerontology, Department of Community Health, Wright State University; Eliot J. Lazar, Chief, Department of Internal Medicine, Brooklyn Hospital Center; Patty Lipschutz, General Counsel, St. Luke's/Roosevelt Hospital Center; Marina Lowy, Assistant General Counsel, The Mount Sinai Medical Center; Coreen McGowan, Assistant General Counsel, Greater New York Hospital Association; Alan Meisel, Dickie, McCamey & Chilcote Professor of Bioethics, Law and Psychiatry, School of Law and School of Medicine, Director, Center for Medical Ethics, University of Pittsburgh; Kathryn C. Meyer, Senior Vice President, Legal Affairs and General Counsel, Beth Israel Medical Center; Tracy Miller, Clinical Associate Professor, Department of Health Policy, The Mount Sinai Medical Center; Mike Mulvihill, Director of Research, Department of Family Medicine, Albert Einstein College of Medicine, Montefiore Medical Center; Thomas Nero, Department of Medicine, Beth Israel Medical Center; Kathleen Perry, Manager, Supportive Care, Saint Vincents Hospital and Medical Center; Brian Regan, Vice President, Professional Services, Brooklyn Hospital Center; Noreen Rosa, Clinical Nurse Specialist, Gerontology, Consultant, Saint Joseph's Hospital; Fenella Rouse, Executive Director, The Emily Davie and Joseph S. Kornfeld Foundation; Eugenia Siegler, Chief, Geriatric Medicine, Brooklyn Hospital Center; Lynn Stansel, Associate General Counsel, Office of Legal Affairs, Montefiore Medical Center; Charlene Visconti, Risk Manager, Lutheran Medical Center; Susan C. Waltman, Senior Vice President and General Counsel, Legal, Regulatory and Professional Affairs, Greater New York Hospital Association.
Introduction
In most parts of the country, most people die in hospitals. Notwithstanding the success of hospice programs and other, newer palliative care programs in facilitating end-of-life care in patients' homes, it is likely that hospitals will continue to be the place where death comes for considerable numbers of patients because of many complex clinical and social factors. Patients who die in hospitals often have very acute illnesses, which may involve considerable high-technology interventions like intensive care, mechanical ventilation, or major surgical procedures. In recent years, legislation and court decisions have made clear that patients have the legal right to decide whether to receive any medical treatment, even when the refusal of such treatment could lead to death. Translating this legal right into actual practice is, however, a complicated enterprise.
During the past twenty-five years, in response to the extensive growth of legal regulations regarding all aspects of hospital practice, many hospitals have hired full-time staff attorneys. Such hospital counsel have played significant roles in many high-profile legal cases involving decisions about end-of-life care. From these highly publicized cases, some medical professionals have drawn pejorative conclusions about the role of law and of hospital counsel in superseding clinical judgments. There has, however, been virtually no systematic attention to the role of hospital counsel in the day-to-day practices that affect seriously or terminally ill patients. This report is a pioneering and illuminating account.
Although the report examines evidence from New York City, its findings have broader relevance. New York State is one of the most highly restrictive jurisdictions in the country regarding legal rules affecting end-of-life decisions, especially for incompetent patients who have not either provided prior formal indications of their treatment wishes or appointed health-care proxies to speak for them. Nonetheless, we know of similar evidence from other places, although of no other formal report, about the role of the law generally, and of hospital counsel specifically, in end-of-life decisions.
The basic picture that emerges from this account is paradoxical. On the one hand, there is considerable variability among hospitals (and even within hospitals, from one case to the next) about the role that hospital counsel see for themselves in clinical decision making. On the other, there is a high degree of consistency revealed among all the hospitals in the study regarding physicians' attitudes toward the law generally and hospital counsel specifically.
This report documents a striking disconnect on both sides of the relationship between physicians and hospital counsel. The clinicians say that legal considerations are highly important in their decisions regarding end-of-life care. Yet the same clinicians are frequently confused about the law, are unaware of institutional policies and mechanisms in their own hospital settings regarding end-of-life care, and have very little (often no) contact with hospital counsel either in general educational forums about the law and institutional requirements or in specific cases. This finding is puzzling. One might think that because clinicians regard the law as important, if not dispositive in their decision making, they would seek out the professionals within their institutions whose special expertise is the law. Equally, one might think that hospital counsel would actively seek engagement with clinicians to dispel confusion and ensure compliance with institutional policies.
Both physicians and hospital counsel may bear responsibility for this disconnect. Would it be wrong to suspect that, on the clinicians' side, the law is frequently being invoked, not realistically or based on readily obtainable clarification, but as a kind of mythic beast to justify avoiding personal engagement in the wrenching decisions involved in the care of terminally ill patients? Would it be wrong to suspect, on the hospital counsel side, that their remoteness from clinical decision making is pursuant to an implicit policy of "don't ask, don't tell"––an effort, that is, to avoid their own engagement in the complicated and sensitive issues of terminal care?
At a meeting we chaired to obtain preliminary reactions to this report, some hospital counsel said that they had little time available to consult with clinical staff about the multiple confusions documented here and that they believed their previous educational initiatives had been of minimal value. These are real problems, to be sure––time is short for busy professionals, and it is not certain that greater effort by hospital counsel (or by committed physicians) would yield clear gains for patient welfare. The fact is, however, that dying patients and their families are not well served by the existing arrangements. Time and energy are required to bring about constructive changes that would improve the care of patients and their families.
Whatever the explanation for the empirical finding of a disconnect between two professions whose collaboration is essential, this report opens a new and important window on the day-to-day practice of the role of the law and hospital counsel in end-of-life decision making in hospital settings. Adoption of its sensible suggestions for general educational efforts and specific case engagement between hospital counsel and clinical staff appears likely to yield improved outcomes for patients and their families. In any event, it seems unlikely that the current fog about the law, as documented here, serves anyone's true interests.
Robert A. Burt
Christine K. Cassel
End-of-Life Care and Hospital Legal CounselOver the past several years society's attitudes toward care at the end of life have undergone a sea change at the same time that the options for providing such care have dramatically expanded. Advances in medical research, more sophisticated ethical analysis, new legislation, judicial rulings, and vigorous public debate have made the issue a topic of professional and public scrutiny. At local, state, and national levels, and in diverse arenas like professional schools, courtrooms, clinical settings, and congressional hearings, we have largely abandoned our hesitation about candidly examining the care we provide patients at the end of life and have begun to explore ways to improve its quality. Never before has such a degree of concentrated professional and public attention been focused on this intensely personal event. Care at the end of life has arrived on the national agenda.
Many of the most profound transformations in our attitudes toward end-of-life care have come about as a result of activities in the legal arena. The law has been a catalyst and a tool for constructive, even at times provocative, changes in how we articulate our obligations to dying patients and define appropriate care for them. From the early efforts exemplified by the Quinlan case to the most recent Supreme Court pronouncements in the case of Vacco v. Quill, the search for constitutional clarity and principled reasoning from courts of law and the creation of new care options and guidelines through legislative and regulatory activities have constituted an effective strategy for stimulating new ideas and attitudes about end-of-life care. These efforts have led to sometimes dramatic changes in public policy, professional governance, and clinical care for dying patients. The law has been an active participant in these efforts to redefine our medical, moral, and social commitments to dying patients and their families.
The activities in the legal arena, however, have exacted a cost. Virtually every aspect of end-of-life care has become entangled in a complex, sometimes messy, web of legislative enactments, regulations, case law, and organizational policies and protocols. Although these initiatives were well motivated and enacted as a response to legitimate problems and dilemmas, they have often introduced their own set of formidable challenges, particularly for clinicians who strive to deliver quality care that is consistent with their patients' choices while remaining within the boundaries of the law.
Clinicians often struggle to define their legal and ethical obligations to patients. In addition to trying to keep abreast of legal rulings, they must act according both to the most current medical knowledge and their own clinical judgment and abide by what they know of their patient's wishes. Few have received any formal training in the legal aspects of end-of-life care, and the information they receive from other clinicians is often based on myth and misperception. Although the legal framework of end-of-life care differs in both formality and complexity from one state to another, concern about the law and lack of information about its precise details influence clinical practice in every setting nationwide.
Despite apparently widespread anxiety about the law among clinicians, which may intensify when a patient's death is imminent, little has been done to counteract their fears. Clinicians caring for hospitalized patients at the end of life are particularly concerned about the legal aspects of such care. Often in the hospital setting a troubling mix of patient choice, family concerns, clinical uncertainties, and institutional interests converge to produce a crisis-ridden environment, making thoughtful consideration and reasonable calculation about end-of-life care options difficult to achieve. Although most hospitals have not created educational programs or institutional protocols to counteract this anxiety-driven decisional process, many do have on hand one powerful, as yet untapped, resource available: the attorneys who function as their legal, in-house counsel.
The position of hospital legal counsel came of age in the late 1960s and early 1970s, when the business of hospitals became more complicated and diverse and legal considerations in the delivery of health care became more prominent. Although most hospitals still maintain strong relations with outside law firms, which handle much of their complex litigation, in-house legal counsel now commonly oversee matters as diverse as employment concerns, contractual obligations, regulatory and compliance issues, and patient care matters. These attorneys often act in both administrative and advisory capacities, and they provide accessible information and judgment on a diverse range of issues encompassing the legal aspects of health care delivery.
In the arena of patient care, particularly when it occurs at the end of life, the degree to which counsel should be involved in clinical decisions has not been clarified. Although most difficult end-of-life cases are rarely decided outside the hospital, on occasion either a family member, or even a hospital administrator, will seek judicial involvement to gain legal clarity or judicial relief in cases that are emotionally charged and balanced on uncertain legal and ethical footing. Except for a few isolated cases (the Linares case in Chicago comes to mind), the involvement of hospital counsel in such cases, especially their advice or interpretation of existing law, has not been scrutinized.
The popular perception of hospital counsel is that their primary concern is to protect the interests of the hospital (particularly from institutional liability), even when fundamental patients' rights are at stake. This view of hospital counsel as "biased" has occasionally made its way into articles that decry the presence of hospital counsel on institutional ethics committees. More frequently, it is the hospital risk managers (who often report to hospital counsel) who are described as biased, although clearly their jobs require them to assess situations with an eye to potential institutional liability. It is unclear, however, whether hospital counsel really view patient care matters primarily through the same risk-aversive lens or whether they can play a more reflective, thoughtful role within the facility, particularly regarding end-of-life care issues. It is possible for hospital counsel to act as educators and advisors, using their professional knowledge to elucidate the legal aspects of this area of care and to correct clinicians' misperceptions or misunderstandings of the law. In the interviews that were conducted with counsel and clinicians for this report, it soon became apparent that such efforts might be not only possible but also welcome in many hospitals. This report, then, will explore the potential for hospital counsel to take up such a role.
During the interviews, several themes emerged that suggest the need for more clinical education on the legal aspects of end-of-life care and indicate opportunities for counsel to become involved in such an initiative. The most important themes were the following:
- Legal considerations, and the procedural decision framework created through the law, strongly influence how clinicians think about end-of-life care.
- Concern and confusion about what is, and is not, legally permissible are common components of clinical decision-making.
- Hospital clinicians are often unaware of the institutional policies and protocols that were created to assist them in end-of-life care decision making and delivery.
- Hospital clinicians have little formal education in the legal aspects of end-of-life care. Instead they often rely on a variety of informal educational outlets that often transmit inaccurate or incomplete information about the law in the acute-care setting.
- Hospital legal counsel are engaged in a variety of responsibilities and activities within the hospital, but their involvement in the hospital's clinical or educational activities related to end-of-life care is limited. These attorneys also differ in their level of comfort with, and interest in, being involved with such issues.
- Hospital legal counsel currently have little contact with hospital clinicians, despite clinicians' concerns about the law. Various approaches within hospital settings are being used to address and resolve legal concerns related to end-of-life care, and these rarely involve hospital counsel.
- Clinicians have high regard for hospital counsel and report that their legal advice and recommendations influence their own decisions about patient care.
Each of these themes is explored in more detail below. Together, they reflect gaps in the awareness of both clinicians and counsel about end-of-life care, and they suggest organizational strategies for enlisting counsel in efforts to promote more informed decision making. Whether hospital counsel can assume such a role and become effective advocates for better end-of-life decision making may depend on the organizational culture of the particular hospital, which could either support or inhibit creative educational and policy endeavors. The interviews conducted for this report, however, suggest exciting possibilities for engaging counsel, in collaboration with clinicians, to promote more informed attitudes toward, and better clinical care of, dying patients and their families.
Common Themes: Observations and Insights from Hospital-Based InterviewsLegal considerations, and the procedural decision framework created through the law, strongly influence how clinicians think about end-of-life care.
Perhaps the strongest impression to emerge from the interviews conducted for this project was the close connection between legal considerations and decisions about delivering care to dying patients. Indeed these considerations dominate the concerns of clinicians who care for these hospitalized patients. At the beginning of each meeting, the interviewer was careful not to predefine what was meant by "end-of-life care" but, rather, to let the interviewee's own perspective emerge untainted. In virtually all encounters (not just those with hospital legal counsel), interviewees launched immediately into a discussion of care in the last days of life by addressing the legal framework for such care and their perceptions of its limitations. Without prompting from the interviewer, success stories and problem cases were framed as matters of process, rather than issues of substantive clinical care.
The legal issues that were unhesitatingly raised by all interviewees centered on the components of the state law framework for advance care planning (e.g., health care proxies, do-not-resuscitate orders, and living wills) and the options that, in their opinion, either were, or were not, permissible by law. Although it was not unexpected that hospital counsel would focus on such legalities, it was surprising to discover how frequently the clinicians also seemed most comfortable in concentrating on these legalities when they addressed end-of-life care.
All those interviewed turned immediately to discussions of the law rather than clinical concerns related to the dying process, like inadequate symptom control or respect for patient autonomy. Clinicians were more interested in discussing proxies than pain, and in the clear and convincing evidence of patients' wishes rather than their comfort and quality of life. Clearly, one reason for the focus on legal issues is that they are concrete and "objective." The legal process represents something tangible to grasp onto in clinical circumstances that are often fraught with medical and moral uncertainty and emotional turmoil. It seemed easier to focus on how to arrive at a decision and who is empowered to do so than on what clinical care ought to be provided and why. This focus on the law was consistent across interviewees, from hospital counsel to administrator to hands-on clinician.
Concern and confusion about what is, and is not, legally permissible are common components of clinical decision making.While most interviewees instinctively turned to legal issues as the interviews began, it is important to note that these same individuals (excluding counsel) were not comfortable with their understanding of the legal requirements that so strongly anchored their thinking about this care. For example, although terms like "health care proxy," "do-not-resuscitate orders," and "clear and convincing evidence" (all components of New York's legal framework for considering end-of-life care decisions) frequently surfaced in conversation, few interviewees felt confident that they precisely understood the details of these concepts, nor had they tried very hard to educate themselves further.
In general, the interviewees expressed a sense of insecurity when they spoke about these concepts in particular and about the law more generally. They were unsure about their grasp of the law and anxious about their potential for incurring liability. This sense of anxiety pervaded the interviews, despite the fact that no interviewee had ever been threatened with legal action or litigation resulting from his/her clinical judgments or actions.
When asked what kinds of end-of-life care situations were the most confusing or anxiety provoking, respondents cited one factor: families. More specifically, lack of consensus or agreement among family members was reported to be a major problem. Respondents gave many examples of family members who disagreed with each other and with clinicians. Many respondents were confused about family members' status and legal right to make decisions about the patient's care.
Although many interviewees were sympathetic with the plight of family members whose loved one is dying, many were quick to criticize family members as being part of the problem rather than viewing them as a necessary component of the solution. They perceived families as causing the decision system to break down and interrupting the flow and efficiency of the clinical process. A few senior physicians described their own efforts to engage families and interact with them in a respectful manner. Most respondents, however, bemoaned the inability of families to deal with their loved one's circumstances. In one particularly telling comment, a resident said, "Families are very emotional . . . they don't understand what's going on."
Few interviewees described problematic legal concerns that involved patients without family members or patients with the capacity to participate in care decisions. In fact, a striking aspect of the interviews was how little discussion was actually focused on the substantive medical and clinical challenges of caring for dying patients. The patients themselves almost seemed secondary to the end-of-life case scenarios and the legal concerns they raised. There are any number of reasons for this. It could be that the situations involving decisionally capable patients have now been so routinely integrated into the clinical care process and go so smoothly (at least from a procedural perspective) that few problems arise when dealing directly with these patients (although undoubtedly there are challenging problems arising from differences over patient values or aspects of palliative care). It could also be that in so many cases when decisions about the end of life must be made, the patient has already lost the capacity to participate, so that negotiations with families come to dominate the clinical landscape. Even when this happens, however, what emerged strikingly from these interviews is that the person who is the patient becomes a minor player in the rush to focus on the more practical aspects of the decision process.
Hospital clinicians are often unaware of the institutional policies and protocols that were created to assist them in end-of-life care decision making and delivery.Despite their focus on the legal aspects of end-of-life care, the clinicians who were interviewed were often unfamiliar with their own institution's policies and protocols, which were developed in response to state and federal judicial and legislative initiatives. Virtually all clinicians were unaware of their hospital's policies on care at the end of life. Furthermore, most clinicians expressed the sentiment that institutional policies had little, if any, impact on how they thought about or provided care for dying patients.
Hospital counsel and administrative staff spoke of hospital policies as shaping and reflecting their institution's approach to end-of-life care. Yet clinicians who were on the front lines, especially house staff and nursing staff, downplayed the influence of specific hospital policies and protocols. They also revealed their limited knowledge of the institutional resources that were in place to assist them with dilemmas arising out of this area of care. For example, many interviewees knew little about the availability of the hospital's ethics committee or individual ethicist (in the hospitals that had such a professional) for individual case consultation and for more general advice and information. Few could identify by name any members of the hospital's legal counsel office. Moreover, some interviewees expressed the belief that their hospital had no policies on matters like surrogate decision making or withdrawal of care at the end of life, despite the fact that all the participating hospitals have existing policies in place. Thus, although interviewees were familiar with some general legal concerns related to end-of-life care, they had little awareness of the policies developed by their own institutions to guide and instruct clinicians through the nuances of the law within their hospital setting.
Hospital clinicians have little formal education in the legal aspects of end-of-life care. Instead they often rely on a variety of informal educational outlets that often transmit inaccurate or incomplete information about the law in the acute-care setting.Coinciding with their anxiety and concern about the law and their own admitted confusion about specific aspects of the law that pertain to end-of-life care, the clinician interviewees indicated that they had received little formal education about these legal issues. Although they eagerly volunteered that they would welcome educational sessions on various legal topics, none was currently making any effort to become more familiar with this legal area. Some clinician interviewees expressed the view that many patients and families whom they see in the clinical setting appear to be more informed about legal mechanisms such as health care proxies than they were previously, but this enhanced awareness among patients and their families did not seem to apply to the clinicians. House staff and nursing staff, in particular, expressed concern about the limited nature of their formal education regarding the law. When asked about their current sources of information about such issues, many mentioned the occasional journal article passed on by a colleague or an informational notice circulated through their department. It also became clear that more junior house staff and nursing staff seek advice from their senior colleagues on legal considerations related to end-of-life care. No one, however, mentioned seeking information or advice from hospital legal counsel. Nor did anyone describe formal efforts within their facilities to provide timely informational or educational sessions about the legal aspects of end-of-life care. One house-staff officer stated succinctly, "It is hard to stay current" on the law. Most seemed resigned to their lack of knowledge in this area. One clinician stated that he had "informal knowledge of the law––a doctor's familiarity of the law," as though incomplete knowledge of the law was the accepted norm among his physician colleagues. Because much of the information physicians do seek and receive about the law is likely to come from fellow physicians, this comment suggests that physicians receive fragmented, even inaccurate, information when they do seek advice in this area.
Hospital legal counsel are engaged in a variety of responsibilities and activities within the hospital, but their involvement in the hospital's clinical or educational activities related to end-of-life care is limited. These attorneys also differ in their level of comfort with, and interest in, being involved with such issues.Hospital legal counsel function both as administrators and as consultants, and they act both to represent the institution as a corporate entity and in relation to administrative and clinical staff, who may seek their advice, direction, or even approval for professional activities and judgments. Counsel address and are responsible for a range of activities within the hospital: contractual obligations; labor relations issues; and regulatory and compliance matters. Most counsel reported that a small percentage of their work time is devoted to matters directly related to patient care, and even less time is spent on end-of-life decisions and care delivery in the hospital.
Counsel generally hold senior positions in the hospital's administrative hierarchy. Although they do not necessarily set the administrative tone for the institution, they reflect the style and outlook of the senior administration and the general hospital " on matters like management style, degree of comfort with clinical staff, discretion in patient care matters, and assessment of the interests of the institution versus those of the individual patients and families who are its "customers."
For example, several counsel mentioned that their chief executive officers, boards of trustees, or the corporate sponsors of their hospital set the limits on the degree to which they can exercise their own authority and judgment. Some counsel focused on the concept of the institution's mission and were concerned with how their actions fit into it. Others spoke of the institutional tone and sense of direction transmitted by their chief executive officers, particularly on matters of patient care and interests. Still others expressed a strong need to control the exercise of individual discretion and risk taking within the institution, which they viewed as potentially harmful to the interests of the institution.
All counsel who were interviewed spoke of the additional professional responsibilities and the stress resulting from changes in the health care marketplace, shifts in institutional affiliations, and limitations placed on the resources within their facilities. Nevertheless, counsel in all the institutions where interviews were conducted were enthusiastic about discussing their own hospitals' experiences with end-of-life care.
Counsel Involvement in End-of-Life Care
Most counsel stressed that their involvement with end-of-life care decisions was limited and occasional; many said that the time they spent on matters of actual patient care was more frequently devoted to issues of psychiatric patients. However, all counsel stated that they assign a high priority to situations raising end-of-life care concerns when such cases are brought to their attention.
Counsel reported that their participation in end-of-life care situations is usually in response to a crisis that rises through the ranks of clinicians and eventually reaches their offices. Such cases may be referred to them through several sources: another administrative colleague; the hospital ethics committee; the patient advocate's office; and, on rare occasions, directly from an involved clinician.
Several counsel suggested that they were uncomfortable with involvement in ongoing clinical care issues. Many rarely visit the clinical floors in the hospital, preferring to avoid direct contact with clinicians, patients, or families. Whereas virtually all counsel described themselves as maintaining an "open door" policy, many limited their involvement with clinicians. The degree of interchange between counsel and medical staff varies according to the attorneys' own personalities, the clinical alliances (if any) they have forged, and the degree to which the institutional environment encourages relations between administrative and clinical staff.
Most counsel reported that they have established a procedure for handling the end-of-life cases that are referred to them, beginning with thorough fact finding in order to obtain a complete picture of the case scenario and its particular problematic aspects. While a few counsel described their own involvement in such fact finding, including calls to involved attending physicians or even on rare occasions direct contact with an involved family member, most described a fact gathering process that would precede their own direct involvement. Normally, the hospital's risk management office or patient advocacy office completes this preliminary phase, but the protocol varies widely, both from one institution to another and even within the same facility.
In most hospitals, counsel described a system––which could be formal or informal––that they had developed to provide guidance to clinical staff who were confronting problematic cases involving dying patients. Some counsel were confident that their process works and is followed within their hospitals (although interviews with clinicians from those hospitals suggested otherwise); other counsel were less sure of how well their protocols were being followed, and many estimated that only a certain percentage of cases in which they could be appropriately involved actually reach their offices. This latter group seemed resigned to the fact (and even comfortable with it) that many end-of-life cases, even those with legal implications, are probably settled within the clinician-patient-family triad, particularly when the patients are under the care of senior attending faculty or voluntary physicians. This situation was not viewed as a problem, but rather as just a reality of how things work when more senior clinicians are involved.
When clinical cases involving the care of dying patients actually reach the office of hospital counsel, their responses vary, as do the responsibilities they assume as a result. For example, some counsel willingly enter into the case discussion and resolution, participate in family meetings, act as members of the ethics committee's clinical consultation team, or even work directly with families to gather the evidence required by New York law to withhold or withdraw life-sustaining treatment when no health care proxy is in place. These counsel are comfortable providing legal guidance, advice, and suggestions, and they view themselves as members of a team of concerned caregivers that is trying to resolve the problems in the case. This hands-on role appears to derive from counsels' perspective that the interests of the patient and his or her family are of uppermost concern in such cases and that the hospital (with counsel representing the institution) has the obligation to facilitate an acceptable resolution as best and as quickly as possible. Whereas the attorneys who willingly participate in such cases are clearly concerned about compliance with existing law, they also appear to be comfortable responding to, and interpreting, that law in a flexible, thoughtful manner in order to promote the wishes and interests of the patients and their families to the degree possible.
Other counsel, who are equally sensitive to the plight of patients, families, and clinicians facing such dilemmas, approach these cases more cautiously, as they are constrained by their sense of responsibility to the institution. For example, they might wait for such cases to wend their way up the administrative hierarchy before cautiously interpreting the information presented to them, mindful of the theoretical liability of not carefully following the letter of the law, even when adopting this measured approach could lengthen the time frame of the process and add to the level of anxiety and agony experienced by the families and clinicians. Even in circumstances where there is some latitude in interpreting the law (for example, on the extent and type of evidence necessary to meet New York's clear and convincing evidence standard), this type of counsel tends to err on the side of caution and conservatism, as they consider themselves to be primarily the guardians of the interests of the institution, which they must shield from legal risk. Particularly in cases where a patient has lost decisional capacity and family members seek to have treatments withheld or withdrawn in keeping with their knowledge and understanding of the patient's previous wishes, these counsel may be very sensitive to the patient's vulnerability and thus view their role as much to "protect" him or her as to promote a wish that the patient had expressed at an earlier time. Although some counsel see no conflict between the promotion of the patient's interests (as interpreted by the family) and the protection of the interests of the facility (expressing the opinion that advocating for patients' interests is integral to the mission of the institution), other counsel view the potential for a conflict of interest with more concern. This latter category wants to ensure that all steps taken to resolve a case are clearly beyond reproach and completely within the letter of the law.
Hospital counsel had almost no experience with litigation on end-of-life matters. Virtually none of the attorneys interviewed had been involved in such litigation, and they all made it clear that they preferred to resolve these problematic cases through institutional mechanisms rather than through a court of law. Nonetheless, some counsel were clearly concerned about the theoretical potential for liability and litigation, no matter how unlikely; several even said that the jury pool within their county and the perspective of their district attorney influenced their approach to such cases. Although some counsel acknowledged and accepted the fact that risk and uncertainty, of a medical, ethical, and legal nature, were inherent to end-of-life situations, others were less comfortable about accepting and incorporating risk in their advice and strategies, and they tried to control it to the extent possible. For example, one attorney does not permit treatment to be withheld or withdrawn within the institution without knowing the patient's definitive diagnosis and prognosis, which is not always an easy task. Another attorney expressed the view that hospital counsel should be notified about all cases within the institution that involve the withholding or withdrawal of life-sustaining treatment.
In contrast, other hospital counsel stated the opinion that they had to accept diagnostic and prognostic uncertainties, even possible legal risks; they acknowledged that some clinicians use their own individual standards of "medical futility" to decide when to withdraw or withhold a treatment without notifying or involving counsel. These attorneys suggested that they could not control these decisions, which they viewed as most appropriately left within the realm of professional medical judgment and discretion. Whereas some counsel believe that such cases ultimately rest on the exercise of clinician judgment, in concert with patient and family values, others saw themselves as playing a critical, even a determinative, role in these cases.
When counsel do become involved in clinical cases, they often differ in how they perceive and frame their role and responsibilities. Although a few hospital counsel reported that they sometimes help determine and approve the decision that ultimately shapes the course of end-of-life care, others view themselves more as consultants and advisors, regardless of whether they are acting as hospital counsel or in another capacity (e.g., as a member of the hospital's ethics committee). However, even those who view themselves only as advisors admitted that their advice would be taken very seriously by clinicians, who would be highly unlikely to contradict or ignore it. One counsel simply stated that whenever attorneys are involved in an actual clinical case, "We win." While not suggesting the adoption of an adversarial tone, this attorney candidly admitted that counsel input, when requested, was often critical to the outcome of a case. All counsel concurred that they wield considerable influence and authority when they become involved.
Counsel's contribution, however, is unlikely to be directly reflected in a patient's medical record. All attorneys commented that they would never document their own participation in the patient's chart, although many said that clinicians are eager to enter a chart note stating that their clinical decisions or judgments have been approved or affirmed by counsel. Furthermore, when counsel were asked if they ever follow up the results or outcome of a case, or participate in a postcase review of the events or results, virtually all interviewees conceded that it would be rare for them to stay in touch with a case once they had rendered an opinion or offered their advice. Therefore, the attorneys had only a limited impression at best of how such difficult cases ended and of the impact of the process and the decision on the patients, their families, and the clinicians.
The Educational Role of Counsel
Not only do counsel rarely follow up on the clinical cases in which they are involved; they also seldom initiate educational outreach to instruct clinicians on the legal aspects of end-of-life care. A few counsel mentioned their participation in annual house-staff orientation sessions, which cover a range of issues. On very rare occasions, counsel are invited to participate in an unusual clinical case conference. Although none who were interviewed felt it would be wrong or inappropriate to conduct clinically based educational sessions on end-of-life care, few appeared inclined (or perhaps lacked the time and expertise) to initiate such sessions. One counsel said, "If we're asked (to conduct an educational session) we'll go, but we're not often asked." Thus, counsel rarely position themselves as a hospital resource, either for individual clinical cases or, more generally, as educators about the legal aspects of end-of-life care.
Hospital legal counsel currently have little contact with hospital clinicians, despite clinicians' concerns about the law. Various approaches within hospital settings are being used to address and resolve legal concerns related to end-of-life care, and these rarely involve hospital counsel.Most clinicians interviewed have had little, if any, contact with hospital legal counsel. A few had met counsel while serving as members of the hospital's ethics committee or in connection with other administrative activities or responsibilities within the institution. House staff and nursing staff often were not able even to identify the chief hospital counsel by name. Although senior clinicians knew counsel and generally held favorable opinions of them, they also confirmed that their contact with the legal staff was limited.
Although hospital clinicians mentioned an occasional case involving a psychiatric patient that they referred to counsel, as well as several instances when they had referred cases involving care of the dying, these were clearly exceptional circumstances, despite references during the interviews to numerous cases with problematic end-of-life care components. Clinicians' accounts of minimal counsel contact underscore the comments of counsel themselves regarding their limited participation in end-of-life cases and their view that many more cases of troubling end-of-life situations with legal complications occur than they are aware of or are consulted about.
Many decisions regarding end-of-life care in the hospital remain within the confines of the patient-family-clinician triad. Although this dynamic may include numerous participants beyond a single family member or one primary care physician, only a few cases grow to crisis proportions, requiring other institutional resources. Many cases that pose difficult choices in emotionally trying circumstances nonetheless proceed in a relatively smooth, noncontroversial manner.
Often, in the "smooth" cases, the patients had previously appointed a health care proxy, which suggests some earlier consideration of these difficult issues had taken place between the patient and the family. Clinicians and counsel alike commented that the relatively small percentage of instances in which patients have executed health care proxies tend to proceed the most smoothly. Counsel and clinicians were very comfortable with the proxy mechanism as a way to facilitate resolution and to bring closure to end-of-life care decisions. Interestingly, however, despite the small number of appointed health care agents and the high level of satisfaction reported when these mechanisms were in place, neither clinicians nor counsel voiced any sense of responsibility or desire to initiate the vigorous effort that would be required to increase the number of health care proxies executed for patients within the institution.
Once problems begin to emerge in a clinical case involving end-of-life care, each institution has its own resources, protocols, strategies and mechanisms, of various degrees of formality, to help clinicians resolve them. These vary significantly from one institution to another, as do the courses of action that are pursued. Even within one institution, similar cases are dealt with differently, depending upon the mix of factors and the experience of the involved clinicians.
Certain factors appear to influence how such cases are handled within an institution: the stature and experience of the clinicians handling the case; the clinicians' and the institution's comfort with medical, legal, and ethical uncertainty and risk; the level of institutional support for the use of individual discretion and professional judgment in such circumstances; clinicians' awareness of the available institutional resources to assist in such cases; the type of problem that arises (i.e., one that is clearly a legal concern versus one that implicates a blend of medical, ethical, and legal considerations); and the formality of existing institutional procedures for addressing such situations. In any given case, the mix of factors, and their relative strength will influence how a problem is addressed and brought to resolution.
Generally, the clinicians, patients, and families who are facing particularly difficult end-of-life circumstances are aided by departments of patient advocacy, ethics committees or consultants, risk managers, and hospital legal counsel. At each institutional interview site, members of these departments often collaborate to resolve problematic cases. The authority assigned to these professionals in such cases also differed from one institution to another. For example, in certain facilities, patient advocates are the first to be called on; counsel involvement is solicited only when a particular scenario clearly implicates a legal concern. In other facilities, problem cases are relayed first to a consultation subgroup of the ethics committee, which might include hospital counsel in its membership.
Even within one institution there is no standard method or mechanism that is exclusively used for addressing problematic end-of-life cases. A crisis that would compel a house officer to contact risk management might be handled very differently by a senior attending faculty member in the same institution, who might be more comfortable relying on his or her own judgment after making a phone call to the hospital ethicist for confirmation of his or her decision. In fact, the house officer might not even be aware of the existence either of a hospital ethicist or of a formal hospital protocol for handling such cases. Whereas counsel and administrative staff can identify such a protocol within their hospitals, it is apparent that many clinicians are either unaware that such a resource exists or choose not to invoke it when the occasion arises.
The clinicians and other professionals who become involved in such problematic cases act in various ways. They gather facts from a multitude of sources to gain an accurate picture of the particular details of the situation. Meetings are convened of the various parties with a stake in the decision process and in the outcome. Sometimes, there are one-on-one meetings with family members, especially when a patient lacks capacity, when there is no health care proxy, and when a request is made for life-sustaining treatment to be withheld or withdrawn. Usually, some particular participants are responsible for carefully reviewing evidence provided by the family of the patient's wishes in order to ensure that it meets the rigorous legal standards that exist in New York.
Each institution assigns these activities to different players. For example, in certain facilities, counsel view it as their responsibility to determine the adequacy of evidence pertaining to a patient's wishes for treatment before the loss of decisional capacity occurred. The source of such evidence is usually the family, although occasionally it can be found in the medical record or in the primary care physician's report of earlier conversations with the patient. In other institutions, however, the hospital's ethics committee reviews the evidence. In fact, certain interviewees from the same institution had conflicting descriptions of the players who are assigned the authority to undertake this role at their facility. In certain hospitals, risk managers were responsible for fact gathering; in others, patient advocates carried out this task. One counsel even said that she herself often researched the facts.
The determinants of the mix of participants and responsibilities are unique to each institution, reflecting the personalities of the individuals involved, the "lens" through which they consider these situations (i.e., as potential sources of risk and financial liability or as serious incidents that bring up issues of patients' rights), and the available resources within the facility. Some hospitals have ethics consultants with the time, interest, and expertise to shepherd these cases through to completion, even when they entail legal concerns. Other hospitals do not assign dedicated individuals consistently to such cases. Still others have established hierarchical reporting systems, in which one group of professionals does the preliminary work and then refers the case to someone higher in the chain of command.
The interviewees also attested to the need for flexibility, as it is difficult, and not necessarily appropriate in any given situation, to sort out a priori the proper domain of a problem case. Often the real source of dilemma only becomes clear after the facts have been uncovered and the parties have met with each other for a period of time. For example, at the outset, a case may appear to implicate primarily legal concerns, but this perception may later evolve to be, in reality, more a matter of miscommunication or misunderstanding. In the more successful examples of case resolution, professionals with different responsibilities recognize that collaboration and multidisciplinary input result in a satisfying outcome for both the institution and the participating patients, families, and clinicians. However, jealousy of professional turf, institutional and clinical caution, and inadequate resources can sometimes discourage, if not preclude, this collaborative approach to end-of-life dilemmas.
A common theme to emerge from these interviews, however, was the acknowledgment that when hospital counsel are brought into problematic cases, they exercise considerable authority. Counsel, administrators, and clinicians all affirmed that the advice and perspective of counsel on how the case ought to proceed almost always determine its outcome. One clinician said, "If counsel told us to go left, we would never go right." This degree of authority and power offers counsel the opportunity to improve end-of-life care within the facility. It also prompts a warning about the inappropriate use, or even abuse, of this authority when counsel's concerns do not account for the range of interests involved, particularly in cases where patient and family concerns may conflict with the institution's own interests.
Clinicians have high regard for hospital counsel and report that their legal advice and recommendations strongly influence their own decisions about patient care.Despite the reported infrequency of contact between hospital counsel and clinicians, the clinicians generally voiced very positive views of their hospital's attorneys and acknowledged the benefit of having them as a resource when problems developed in the course of patient care. When asked to describe the role of hospital counsel in their facility, most clinicians portrayed counsel as being a positive resource for helping clinicians (and the institution more generally) to remain within the bounds of the law and "stay out of trouble." This was looked upon as a favorable and valuable service within the hospital. Clinicians described the valuable advice, assurance, and confirmation of counsel's judgment on questions relating to the law. Many went on to describe further functions of counsel, noting that they acted as sources of authority to "clear" a decision, "confirm" its acceptability, or to "approve" a particular clinical decision. However, most clinicians were hard pressed to cite examples of these activities based on their own clinical experiences. In a particularly telling comment, a house officer stated, "We never have contact with counsel because we never get into trouble." Thus, although clinicians may view counsel in the abstract as a source of support, in fact they are more likely to seek their help only in response to problems or troubling situations. Clinicians may equate counsel with "trouble," and therefore conclude that less contact is better.
Clinicians were consistently concerned about their grasp of the law. No clinician, however, mentioned turning to hospital counsel for general legal advice, information, or clarification. House staff and nursing staff clearly looked to more senior clinicians for legal advice.
Clinicians' sense of frustration with the law, and its perceived impact on their clinical practices, did not, however, extend to their feelings about the lawyers in their own hospitals, whom they viewed very favorably. Few clinicians seemed to recognize that their hospital counsel may at times interpret the law as it is applied to activities within the institution, and thus possibly shape its influence on particular clinical scenarios. In fact, one clinician stated, "Hospital counsel are not our adversaries, but the law does constrain us at times." Another commented, "The legal interpretation will carry the day, even if it's not clinically relevant." Such comments suggest that clinicians are unaware that hospital counsel may choose how to interpret the law in a given situation in order to advance a particular agenda.
Few clinicians voiced disapproval of specific aspects of the law, including the law relating to end-of-life care. Rather, they tended to be more generally frustrated with having to practice within the boundaries of the law and to be insecure in their knowledge of how those boundaries are defined. They were resigned to accepting what they perceived as the significant influence of legal concerns on their clinical practices, and they focused on their exposure to legal liability, despite the fact that none had ever incurred legal liability or been involved in litigation.
All clinicians stressed that in the rare instances that counsel become involved in an end-of-life case, their contribution strongly influences, even determines, clinical decisions. One clinician commented, "Whatever they (counsel) say, we know that is the way to go." This mirrors counsel's own perception of themselves as exerting tremendous influence over the direction of clinical care decisions and delivery.
Recommendations: Opportunities for Hospital Counsel to Improve End-of-Life Care Decisions and Delivery in HospitalsCaring for dying patients and helping them and their families make appropriate treatment decisions are not easy tasks for clinicians. Many pressures, which include the uncertainty of clinical conditions, intensified interpersonal relationships, and perceptions of policy and legal limitations, add to the challenge and, not infrequently, compound the inherent difficulties of such cases. Despite occasional references in the literature and a few anecdotal cases about situations that have been aggravated by the involvement of hospital counsel in the clinical arena where these dramas are usually played out, the interviews reported here do not support concern about such eventualities. Instead, the interviews pointed to positive opportunities to enlist hospital counsel in efforts to promote better end-of-life decision making within the hospital. Throughout almost all interviews, counsel were described as helpful and supportive. Although they currently play a limited, primarily reactive, role in clinical care of patients at the end of life, their participation could be expanded to include more opportunities for them to become involved, particularly in the education of clinical staff. Provided that their own knowledge of the legal aspects of end-of-life care is current and accurate, their authority and stature within the institutions would make them important collaborators in efforts to improve the quality of a hospital's end-of-life care delivery.
However, counsel cannot be the sole force of institutional change around end-of-life care, and they are certainly not the only hospital professionals whose role in this endeavor is critical. Institutional attitudes and behaviors toward dying patients are often deep seated and will require considerable time and effort to change. These interviews, however, suggest a more prominent, pro-active role for hospital counsel in accomplishing necessary changes. First, clinicians acknowledge their insufficient understanding of the law and the anxiety that this limitation arouses. They are also enthusiastic about becoming better educated about the law, especially as it applies to end-of-life care. Second, clinicians express a high level of respect for the advice and authority of legal counsel and report that the information and advice they receive from these attorneys strongly influence their clinical judgment and care decisions. If, therefore, the stature of counsel could be utilized to create a systematic method of imparting accurate information to clinicians and to dispel or correct myths or misunderstandings about the law, it would constitute a major contribution to hospital care at the end of life. The following recommendations are made with that goal in mind.
Recommendation 1: Create Educational Opportunities
Counsel should become better educated about, and oriented to, the attitudes, perceptions, and care practices of clinicians who provide end-of-life care, which would permit them to understand the clinical reality in which policies and procedures are carried out, to fill in the gaps where clinicians' knowledge is lacking, and correct their misperceptions about legal matters.
Compounding clinicians' ignorance of hospital policies and resources related to end-of-life care and their anxiety about the legal implications of such care were counsel's own misperceptions about the decision making and the clinical reality that go into providing such care. A better appreciation of clinicians' limitations and misperceptions, and of the pressures and constraints imposed by the clinical environment would enable counsel to develop appropriate educational programs and opportunities that would be responsive to the needs within each particular institution.
- Counsel can survey clinical staff and/or convene focus groups of front-line clinicians in order to understand the state of existing knowledge, attitudes, and perceptions within the particular institution about the legal aspects of end-of-life care and the impact of hospital policies on clinical practice patterns.
- Counsel can initiate a system of routine follow-up procedures with clinical teams whenever their office has been involved in problematic end-of-life situations in order to gain a better understanding of the clinical resolution to the difficulty, particularly its impact on the involved clinicians and families. Such follow-up also could take advantage of "teachable moments."
- Counsel could participate in occasional teaching or noontime rounds, both to familiarize themselves with clinical difficulties in managing and providing end-of-life care and to make themselves more visible as accessible resources.
Recommendation 2: Promote Enhanced Communication and Advance Care Planning
Good communication and advance care planning are essential elements of quality end-of-life care. Existing laws and legal mechanisms support and promote these concepts, yet all too often poor communication and lack of planning lead to problems when decisions need to be made. Hospital counsel have the authority to encourage administrative and clinical leaders to support and promote these components of quality care delivery for patients at the end of life.
All interviewees stressed that better communication among clinicians, patients, and families is critical to improving end-of-life care. Laws and legal mechanisms to promote informed consent, respect for patient autonomy, and advance care planning all exist, yet clinical practice patterns generally fail to integrate these critical factors into clinical care. Counsel can promote the idea that such communication and advance care planning are part of the professional responsibility of clinicians in the institution and integral to the standard of clinical care that the hospital promotes. To accomplish this goal, there must exist a climate of support for such communication and planning and an acknowledgment that they are important, primarily through the visible endorsement of senior administrative leaders and the actual practice of clinical leaders within the facility. Although counsel are considered sources of authority and influence, senior clinicians provide the living example and the hands-on mentoring so critical to shaping actual clinical practice. Counsel can actively collaborate with senior clinical leaders to encourage and support improved communication within clinical teams, and with patients and families, and to guide their junior colleagues accordingly. Although better communication and greater use of health care proxies will not prevent all problems in the clinical decision process, they will promote care that is more patient and family centered and signal potential areas of difficulty before they escalate into a crisis.
- Their influence within the institution enables counsel to promote better communication and advance care planning efforts, both as a matter of better compliance with existing laws and ethical guidelines and as a vehicle for improving the quality of care and reducing the likelihood of clinical crises in the delivery of care at the end of life. These efforts could include grand round presentations in collaboration with senior clinical leadership and public awareness campaigns, orchestrated by the hospital leadership, to promote advance care planning as a part of provider responsibilities to patients and families. Senior hospital leadership must visibly demonstrate the importance of this issue to clinical staff.
- In collaboration with senior clinical leaders, counsel could stimulate the development of educational and role-playing programs that would enhance the skills and confidence of clinicians so that they are better prepared for advance care planning and for communicating with patients and their families about end-of-life issues.
Recommendation 3: Translate Between the Clinical and Policy Arenas
Hospital counsel are ideally positioned to make legal concepts and requirements clinically meaningful and relevant to clinicians who are on the front lines. They are equally well positioned to educate legislators and other policy makers about the ability of clinical practice to absorb and respond to new legislation or regulations. Working through professional organizations, hospital counsel have the opportunity to comment on and critique legislative and policy initiatives, and to help clinical practice better reflect the intent of laws and guidelines related to end-of-life care.
Hospital counsel often stand at the crossroads of two very different cultures: the legislative and regulatory arena, where theories and concepts are often set out in elegant, definitive certainty, and the clinical arena, where practice patterns often lag behind ideals and aspirations and uncertainty holds sway. As professionals with a window into both worlds, hospital counsel may be ideally positioned to make each world more familiar to the other. Clinicians need to understand why certain laws are promulgated, their relevance to clinical practice, how to integrate them into good patient care, and how to coordinate professional judgment within the boundaries established by the law. They often need to have the stiff formality of the law translated into clinically meaningful terms.
Hospital counsel have the opportunity to make the pressures and tensions of clinical practice a reality for colleagues in the government or policy arena so that they will consider this aspect when they are formulating new legislative and regulatory initiatives. Legislators must come to understand the challenge of implementing complicated practice management protocols (like New York's "do-not-resuscitate law," which is still the source of frequent difficulty in the clinical setting, even years after its passage) in a setting often characterized by too little information, too little time for communication, and too much uncertainty concerning the precise clinical picture.
- Through professional organizations, hospital counsel could collaborate to bridge the legislative and the clinical arenas. Through sponsorship of forums, legislators and regulators could come into contact with clinicians, who could convey a picture of the complex challenges they face in delivering end-of-life care.
- In the clinical arena, counsel could hold regular sessions for clinicians to ask questions and raise concerns about existing laws and regulations in a friendly and supportive environment, removed from the atmosphere of anxiety and confusion that often surrounds an actual problematic case.
ConclusionTranslating these recommendations into concrete activities within particular clinical environments would be a challenging task, requiring a supportive institutional environment and hospital counsel who are comfortable with a more visible, clinical presence. It would also require the support and collaboration of other professionals within the facility, like patient advocates and ethics committees and consultants, who already play an active role in end-of-life care issues. These professionals, however, would also benefit from the enhanced clinical presence of counsel, as they too would become better acquainted with, and more confident of, the legal aspects related to end-of-life care. They would gain an important, and influential, ally in their own efforts to promote a better quality of care. The role of hospital counsel in the clinical care setting would have to be reconceptualized, perhaps with the help and advice of professional organizations or associations that address and represent the interests of hospital counsel, and through the forging of stronger collegial relationships with clinical leaders within the hospital.
There are now many educational, policy, and clinically oriented projects to reform and improve end-of-life care in the clinical setting, and efforts to integrate considerations of the role of hospital legal counsel might well fit within some of them. Much work must be done to improve clinicians' understanding and awareness of the legal aspects of end-of-life care and the proper perspective they should adopt toward legal considerations when they are making clinical decisions. Clinicians need a balanced perspective and a translation of concepts. Hospital counsel may be ideally positioned to provide such information in a clinically relevant, meaningful way, and their involvement in efforts to improve end-of-life care in the hospital setting could have a significant, positive influence on clinical practice patterns in the hospital setting.
Hospital Counsel and New York's Clear and Convincing Evidentiary Standard In the state of New York, patients who lack decisional capacity and who have not previously appointed a health care proxy constitute most of the end-of-life cases and are often the source of significant problems within the hospital setting. New York law requires "clear and convincing" evidence of the patient's wishes in such clinical circumstances before life-sustaining treatment can be withheld or withdrawn. Because this evidentiary standard is found in only a few other states the strategies described here for addressing this specific legal requirement are particular to New York end-of-life cases. However, the way that various institutions and hospital counsel address this issue reflects the complexities that arise when a hospital attorney must deal with clinical situations that do not fit into "hard and fast" legal categories, while trying to strike a balance between patient and institutional interests. How counsel orchestrate the players and the components of this evidentiary determination speaks more broadly to their role in interpreting the law and influencing clinical decision making. Therefore, we include a brief description of this particularly New York phenomenon.
When a hospitalized patient without decisional capacity is sustained on life-prolonging interventions, the family members sometimes grow weary of the situation or begin to express ambivalence about the continuation of treatment. Sometimes this ambivalence, and requests to withhold or withdraw treatment, reflect values or statements that were explicitly articulated by the patient before losing capacity. More likely, patients and families did not explicitly discuss such matters, but nonetheless family members have decided views about what the patient's preferences would be, or what would be in the best interests of the patient.
A family member who is not a formally appointed health care agent in New York can have life-sustaining treatment withheld or withdrawn only if there is "clear and convincing" evidence that this is what the patient would have wanted. Although the law suggests that this evidence must directly relate to the intervention in question and the condition in which the patient currently exists, courts of law in recent years have ruled that hospitals have the discretion to determine the amount of evidence a family must produce to meet this requirement. Resort to a court of law is theoretically possible but practically unnecessary in most cases because hospitals have the authority to make this judgment on their own.
Few patients have left explicit, written evidence of their treatment wishes, especially for unanticipated circumstances. In cases where vagueness is more the norm than specificity, determining whether the evidence of prior wishes is sufficient becomes a matter of judgment, flexibility, interpretation, and, perhaps, theoretical legal risk taking. Here, the environment of the institution and the perspective taken by legal counsel become most interesting to consider.
Even families who previously did discuss these issues need guidance in bringing forth evidence consistent with the requirements of the institution and of the law more generally. For example, most hospitals require that where there is no written evidence, families must produce a written affidavit attesting to the evidence. For most families, this is not an easy task: thoughtful reflection is required to recall earlier conversations (if such took place) and then to formulate carefully the language that documents those conversations in order to satisfy the specific legal requirements as the hospital chooses to interpret them.
This is a daunting task, exacerbated by the stress, anxiety, and emotional burden the family has already endured during the course of the patient's illness. Although each hospital offers support, the personnel who supply it, the extent of the help, and the involvement of counsel vary considerably. On their own, many families simply could not produce the evidence required by the hospital. Therefore, the extent of assistance they receive from the hospital becomes critical to their ability to carry out what they believe their loved one would want.
What transpires in these situations, then, might be called the "clear-and-convincing-evidence dance." Families and hospitals begin a slow, steady rotation around the issue of what is known about the patient's wishes and what must become known before treatment can be withheld or withdrawn. In each hospital, the personnel and resources brought in to assist families in this effort differ. Clearly, in every institution a degree of "coaching" occurs. Language and scenarios are suggested to families as a way to "assist with their recollections." As one interviewee stated, "We give them ways to search their minds."
All counsel spoke about this process with greater or less degrees of comfort. In some hospitals, it is seen as part of information-gathering and so becomes the task of the ethics committee, the patient advocate's office, or even of the risk managers. In others, counsel themselves become involved, although the extent of this assistance varies tremendously. Some counsel see it as a conflict of interest to advise families on matters in which they may later have to make a "ruling," whereas others see this advisor role as integral to the task of helping families.
Although no interviewee suggested that families were encouraged to "make up" evidence, they made it clear that hospitals adopt varying levels of rigor and flexibility on this issue. One counsel stated that she scrutinizes the information brought forth very carefully, as she believes family members should not have the authority to interpret what a patient would have wanted. She views it as her obligation to "protect patients" by not allowing life-sustaining treatment to be withheld or withdrawn unless she is thoroughly convinced of the sufficiency and validity of the evidence. Yet other counsel felt that the hospital ethics committee or the ethics consultant could decide about the sufficiency of such evidence without direct counsel involvement, unless a controversy arose (thus blurring the question of whether this kind of determination is strictly a legal matter).
What is clear is that differences in approach to assisting family members reflect the particular institutional culture: that is, how the hospital and its legal counsel view and assess patient interests; how the hospital's interests are defined and the lengths to which it will go to protect them; and the hospital's degree of comfort with concepts of discretion and risk taking in situations involving uncertainty and end-of-life care.
Related BibliographyChristiansen, E.J. 1984. The Role of In-House Counsel. Topics in Health Care Financing (summer):80-5.
Dubler, N.N. 1993. Commentary: Balancing Life and Death––Proceed with Caution. American Journal of Public Health 83(1):23-5.
Dying Well in the Hospital: The Lessons of SUPPORT. (special supplement) Hastings Center Report 25(6):51-3. 1995.
Franey, S. G. 1996. Three Factors Critical for End-of-Life Care. Health Progress (Sept-Oct.): 30-44.
Hafemeister, T.L., and P.L. Hannaford. 1996. Resolving Disputes over Life-Sustaining Treatment: A Health Care Provider's Guide. Williamsburg, Va.: National Center for State Courts.
Jennings, B. 1996. Legal Counsel and Decisions Near the End of Life. Final Report of the Decisions Near the End of Life Task Force on Law and Clinical Care. As reprinted in New Jersey Institute for Continuing Legal Education, End-of-Life Decision Making: How to Advise Your Health Care Clients. (seminar materials):13-24.
Kapp, M. 1996. As Others See Us: Physicians' Perceptions of Risk Managers. Journal of Healthcare Risk Management 16(4):4-12.
Kapp, M. 1997. Treating Medical Charts Near the End of Life: How Legal Anxieties Inhibit Good Patient Deaths. University of Toledo Law Review 28 (3):521-46.
Kapp, M., and B. Lo. 1986. Legal Perceptions and Medical Decision Making. Milbank Quarterly 64 (suppl. 2):163-202.
McCary, S.V., J.W. Swanson, H.S. Perkins, and W.J. Winslade. 1992. Treatment Decision for Terminally Ill Patients: Physicians' Legal Defensiveness and Knowledge of Medical Law. Law, Medicine & Health Care 20 (4):364-76.
Meisel, A. 1991. Legal Myths about Terminating Life Support. Archives of Internal Medicine 151:1497-1502.
Quill, T.E. 1994. Risk Taking by Physicians in Legally Gray Areas. Albany Law Review 57:693-708.
Schermer, B. 1990. A Practical Guide for Hospital Counsel in Decisions to Withhold or Withdraw Medical Treatment. Journal of Health and Hospital Law 23 (9):264-66, 286.
Scofield, G.R. 1988. The Hospital Lawyer's Obligation to the Terminally Ill Patient. Hospital Law Newsletter 6(1):1-7.
Solomon, M.Z., L. O'Donnell, et al. 1993. Decisions Near the End of Life: Professional Views on Life-Sustaining Treatments. American Journal of Public Health 83(1):14-23.
Interview MethodologyThe interviews on which this report is based were conducted by Connie Zuckerman, who at the time of the interviews was project director of the United Hospital Fund's Hospital Palliative Care Initiative (HPCI), a multi-million dollar research and demonstration initiative seeking to improve the quality of hospital care for persons at the end of life. An academic health care attorney, Zuckerman has more than a decade of experience teaching and consulting in New York City hospitals and academic health centers on matters of health law and bioethics. Zuckerman conducted a total of 42 interviews for this report, with the assistance of Lynn Rogut, a consultant to the United Hospital Fund and project director of its Hospital Discharge Preparation Initiative, as well as earlier United Hospital Fund hospital-based projects.
In collaboration with Joel Cantor, director of research at the United Hospital Fund, Deborah Halper, director of the United Hospital Fund's Division of Education and Program Initiatives, and Rogut, Zuckerman developed a preliminary set of topics and corresponding questions for potential interviewees. The questions addressed such issues as the role of counsel in end-of-life decisions; clinicians' perceptions of counsel's role; more general concerns of clinicians about the legal aspects of end-of-life decisions; and the broader decision-making framework found in each clinical setting. These preliminary questions were piloted with two counsel from a nonparticipating New York hospital, which led to revisions in the format and focus. The pilot process made it clear that conversation and dialogue, rather than rigidly guided questioning, would better elicit the type of information and illustrations useful for the goals of this project. Therefore, a list of discussion topics was developed and distributed to interviewees before their interviews in order to set a discussion framework without limiting or predetermining the precise content of each conversation.
Interviews were conducted on site at six of the twelve hospitals participating in the HPCI. These six hospitals were selected to reflect the characteristics of the range of institutional participants in the HPCI––size of the institution, diversity of patient population, and affiliation status––and included two major academic medical centers, two teaching hospitals, and two smaller community hospitals with limited residency programs. Hospitals were located in four of the five boroughs of New York. Municipal hospitals were purposefully excluded from the interview process, out of a concern that the unique administrative and organizational structure of the New York City Health and Hospitals Corporation might influence the clinical decision-making process in a manner not able to be generalized to the more typical hospital environment.
All six sites provided full cooperation and assisted Zuckerman in the selection of interview candidates and in the scheduling and facilitation of the interviews themselves.
In order to gain the perspective both of counsel and of clinicians who may interact with counsel in the course of particular clinical cases, whenever possible the following individuals were interviewed at each of the six hospitals: the hospital counsel; the chair of the hospital's bioethics committee; a senior attending physician with frequent clinical exposure to end-of-life decisions; a floor nurse who is frequently exposed to end-of-life decisions; and a medical resident. As well, at each institution, efforts were made to identify and interview other hospital personnel whose clinical or administrative responsibilities would provide significant insight into the framework for end-of-life decisions within that particular facility. Thus, in several institutions additional staff-risk managers, directors of social work, and patient advocates were also interviewed.
All interviewees were promised confidentiality, and no recordings were made of the interviews. However, Zuckerman took extensive notes, and Rogut accompanied her on most interviews to provide a second set of notes. The materials provided in this report thus reflect the interviews as recorded by both Zuckerman and Rogut. Each interview lasted approximately one hour, and participants were encouraged to provide examples of common scenarios or frequently encountered situations. Most often, just one interviewee was present, although occasionally joint interviews were undertaken.
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