- Email: [email protected]
Ethics committees and consultants
Handbook of Clinical Neurology, Vol. 118 (3rd series) Ethical and Legal Issues in Neurology J.L. Bernat and R. Beresford, Editors © 2013 Elsevier B.V. All rights reserved
Chapter 3
Ethics committees and consultants 1
C. CHRISTOPHER HOOK1, KEITH M. SWETZ2, AND PAUL S. MUELLER2* Division of Hematology, Department of Medicine, Mayo Clinic, Rochester, MN, USA
2
Division of General Internal Medicine, Department of Medicine, Mayo Clinic, Rochester, MN, USA
INTRODUCTION Life, health, illness, disability, and death are at the top of human concerns, and the focus of healthcare. These concerns are fundamental components of each person’s worldview. As such, healthcare is an ethically rich endeavor, so much so that the concept of the profession of medicine is inconceivable without a clear ethical framework. Yet, each individual patient and professional holds opinions regarding the larger issues based upon factual knowledge, subjective experiences, and varying philosophic and religious presuppositions. Differences in ethical conclusions about the appropriateness of a given approach to medical intervention are therefore not uncommon, particularly in the increasingly diverse natures of our society. To complicate things further, the rapid development of powerful biotechnologies that challenge existing paradigms and are increasingly more expensive and demanding upon limited resources introduces challenges to many worldviews requiring new reflection and ethical innovation. These challenges arise at all levels of the healthcare process – from the bedside to the boardroom – and at all levels of the healthcare organization. Two developments of the last 50 years have emerged to help address these ethical questions and challenges: clinical ethics consultation (EC) and institutional ethics committees. EC focuses at the bedside, active case level, whereas institutional ethics committees focus on the institutional, practice, and policy level. This chapter will describe the goals and possible structures for EC and committees, the training and institutional resources required for these activities, a review of reported experience with EC, and a review of the published experience demonstrating the value of EC. It is important to state that the activities and structures described in this chapter are separate from
Institutional Review Boards (IRBs), which focus entirely on research ethics and performance. IRBs function independently of other administrative structures of an institution and are governed by and answerable to federal authorities. EC and ethics committees deal with ethical questions beyond the purview of the IRB.
CLINICAL EC Clinical EC (CEC), or simply EC, is defined by the American Society for Bioethics and Humanities (ASBH) as “a set of services provided by an individual or group in response to questions from patients, families, surrogates, healthcare professionals, or other involved parties who seek to resolve uncertainty or conflict regarding value-laden concerns that emerge in health care” (ASBH, 2011). Notably, the Joint Commission (2009) requires healthcare institutions to have some methodology for addressing ethical concerns in patient care. In the only national survey of U.S. EC activities to date, it was concluded that in a given year (2006) approximately 29 000 ethics consultants provided more than 314 000 hours of service in 36 000 ECs (Fox et al., 2007).
Approaches to clinical EC Akin to any other form of medical consultation, the goal of EC is to provide timely access to individuals with the skills and knowledge necessary to assist patients and clinicians in addressing challenging ethical questions and dilemmas. For example, how should the care team respond to conflicts between the wishes expressed in the advance directive of a patient, now suffering from acute stroke and lacking decision-making capacity, and the demands of the patient’s surrogate decisionmaker? Or, how should the team respond to continued
*Correspondence to: Paul S. Mueller, M.D., Mayo Clinic, 200 First Street SW, Division of General Internal Medicine, Gonda 17, Rochester, MN 55905, USA. Tel: þ1-507-538-6341, E-mail: [email protected]
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requests from a patient with diminished capacity, who indicates that he or she wishes to receive ongoing aggressive interventions when there is little, if any, chance of the patient ever leaving the hospital? In general, there are three approaches to conducting CEC: (1) the individual ethics consultant model; (2) the ethics team model; and (3) the ethics committee model (LaPuma and Toulmin, 1989; Swenson and Miller, 1992; Sulmasy, 2001; Rushton et al., 2003; Orr and Shelton, 2009). The individual ethics consultant model involves a single ethics consultant performing the entire consultation process. This individual reports to some level of institutional leadership such as an ethics committee, the institution’s clinical practice committee, or some other governing body. The ethics team model employs a multidisciplinary team of several individuals, though one person may be the designated on-call member at a given time and the first responder, data collector, and meeting organizer for the team. Professionals included in the team often include a physician, nurse, social worker, chaplain, and occasionally legal counsel (though often in an educational capacity only). The ethics committee model requires that the case be brought by the requester(s) directly to a larger institutional ethics committee, which hears and addresses the dilemma in a group meeting. Some institutions use hybrids of these models. In the aforementioned national EC survey, 9% of institutions used the individual consultant model, 68% the small team model, and 23% the full ethics committee model, though many institutions reported they at times employed more than one or combined models depending on the nature and needs of the consultation (Fox et al., 2007). With the development of larger healthcare networks involving many sites under a single administrative umbrella, long-distance, teleconferencing or e-consultations are a growing method of providing EC, with combinations of the three historical models providing the staffing (Kon et al., 2009; Smith and Barnosky, 2011). The individual consultant EC model has the advantages of speed and efficiency (depending, of course, on whether the consultant is given protected time from other responsibilities in order to provide the service immediately). By not having to coordinate multiple schedules of members of a team, there is the potential for more timely response and resolution. However, the disadvantage of this approach is that the contributions of the collective expertise, different ways of perceiving and gathering information, and varied personal and professional perspectives brought by individuals from different disciplines are lacking. The team EC model provides multidisciplinary perspectives and is the model used at our institution (Mayo Clinic) and the authors can attest to its value. However,
this model has the potential downside of decreased timeliness, as it requires finding time in the midst of team members’ other responsibilities to meet with the healthcare team and patient/family, often resulting in meeting times outside standard work-day hours. The ethics committee EC model is the most cumbersome and inflexible because of the number of individuals involved and the fixed meeting schedules common to most committees. Because of the typical size of ethics committees, this method may become the victim of so-called “group-think” or “nonthink” (Scofield, 1993), and may also be unduly intimidating to consultation requestors, particularly patients and family members. However, it can provide the broadest number of disciplines and interests for adjudicating the case, as well as the collective response of the institution rather than the potentially more subjective conclusions of a few.
ETHICS COMMITTEES Ethics committees may provide support for, and/or may directly perform, clinical EC, as noted above. Ethics committees, however, usually perform other functions as well. These include establishing institutional policy and procedural guidelines for aspects of care with substantial ethical components. Examples include practices at the beginning of life, end-of-life care, institutional policy on resource allocation, and conflicts of conscience. The ethics committee, therefore, provides analysis and guidance to institutional leadership. Given the number of disciplines that have developed substantial volumes of their own ethics literature (e.g., transplantation, reproductive medicine, genetics, palliative medicine, regenerative medicine and neurology/ neuroscience, to name a few), larger institutions with substantial practices in these areas may also create field-, or topic-, specific ethics committees. For example, at Mayo Clinic we have a Reproductive Medicine Advisory Board and a Transplantation Ethics Advisory Board, and are in the early phases of creating a Neuroethics Advisory Board. These subspecialty ethics committees, along with our EC service, report to our Clinical Ethics Committee, which is a subcommittee of our enterprise-wide Clinical Practice Committee. An advantage of these subspecialty ethics committees is that they are able to develop substantial experience and expertise in their fields beyond what a general ethics committee might be able to acquire.
MAINTENANCE OF ETHICS COMMITTEES AND SERVICES Both EC services and ethics committees have requirements to function effectively, including knowledgeable personnel skilled in communication and mediation,
ETHICS COMMITTEES AND CONSULTANTS adequate time to perform the respective services, and institutional support.
Ethics education Because the knowledge involved in clinical ethics is complex and multidisciplinary (practical ethics, ethical theory, epistemology, logic, law, medicine, public health, theology, psychology, counseling, dispute mediation, history, economics), there has been decades-long debate as to what constitutes the core competencies of ethics consultants. Part of this discussion has been fueled by genuine clinical need, but there have also been efforts to establish these competencies as a means of trying to define EC as a separate profession, with independent certification. The authors of this chapter sympathize with the former goal, while the latter is dubious, as will be discussed below. ASBH has led the efforts to create a set of core competencies for EC, and recently released the second edition of its guidelines (ASBH, 2011). ASBH has also published a small book listing references and recommended reading to help institutions educate ethics consultants and committee members (ASBH, 2009). Other texts are also helpful (Beauchamp and Childress, 2008; Lo, 2009; Jonsen et al., 2010). Additionally, ASBH has recommendations about how EC should be performed, many of which are common sense, while some are controversial and have been criticized by members of the bioethics community (King, 1999; Bishop et al., 2009; Engelhardt, 2011). ASBH advocates a nonauthoritarian approach to CEC, promoting instead “ethics facilitation.” All parties involved and points of view expressed should be respected, culminating in a “principled ethical resolution”; i.e., the final recommendations should “comport with the bioethics literature, medical literature and other relevant scholarly literature, professional standards, statutes, judicial opinions and pertinent institutional policies” (ASBH, 2011, p. 6). While an ethics consultant may share objective experiences and knowledge, the consultant should not share his or her own beliefs or opinions. As much as possible, multiple options should be offered, but specific recommendations can be given if they clearly achieve identified common goals of the involved parties. Recommendations against actions that are illegal or violate policy should be articulated. Finally, if consensus cannot be reached among the parties, the process should identify the rightful decision-maker and support that individual. In other words, EC should promote a secular approach to understanding and facilitation of patient autonomy, which focuses more on who is the proper decision-maker rather than on what is decided, with the boundary being a proscription against violating secular law.
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The deficiency of this prescription is that ethics is as much about “the ought” as it is about “the permissible.” Indeed, history has demonstrated that policy and law may authorize the unethical. Should it not also be the duty of the ethicist to oppose what is unethical? ASBH guidelines, however, do not deal with this reality or questions of ought, raising the question: where did the ethics go? The ASBH prescription is also potentially problematic to a substantial portion of healthcare institutions and healthcare delivery in the United States. Twelve percent of U.S. general hospitals are religious nonfor-profit institutions. It is reported that one in six Americans is treated each year in a Catholic facility (CHAUSA, 2012). The Ethical and Religious Directives for Catholic Health Care Services (USCCB, 2009), which prescribe the ethical norms for conduct that is permissible within the boundaries of Roman Catholic institutions, maintains a different understanding of human autonomy from that of ASBH. According to this view, there are certain acts that an individual is never allowed to choose “autonomously,” some of which are legally permissible by secular law. Given that some acts, such as abortion, assisted suicide, sterilization, and contraception, are viewed as “intrinsically evil” by Catholic moral theology, they are never an acceptable choice, and thus cannot be advocated by ethics consultants within Roman Catholic institutions. The ASBH Core Competencies would specify that the ethics consultant should remain neutral on issues in which neutrality would be considered complicit facilitation by Catholic moral theology (Bedford, 2011). Beyond the criticism that the ASBH Core Competencies advocate a secular approach to EC, the other major concern is the insinuation that ethics and the outcomes of EC can be quantified and justified in traditional administrative metrics. For example, satisfaction with the consultation process can be statistically measured, but whether the right thing was done cannot. Given that ethics concerns itself with the right, the good, and the ought, the most important aspect of the whole endeavor is not a primary goal of the Core Competencies, nor something that is part of the evaluation of the success or failure of the process. If the Core Competencies process-over-content approach becomes dominant, then EC will have devolved into the nature of its least common denominator member, the legal profession, for contemporary law does not necessarily concern itself with truth, right, or justice, but rather procedure. (The “value” of EC is explored below.) These concerns aside, in the future it is likely that accrediting organizations such as Joint Commission, in conjunction with groups such as the National Working Group of the Clinical Ethics Credentialing Project
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(Dubler et al., 2009), will establish specific standards for adjudicating ethical concerns in healthcare institutions, and the ASBH Core Competencies presently are the only standards beyond individual institutional practices and policies. Institutions should, at the very least, be aware of the contents of the ASBH Core Competencies.
Maintenance of competencies Like other fields, ethics is dynamic. Every ethics consultant, EC service, and ethics committee must be as committed to maintaining up-to-date knowledge and skills as other healthcare professionals. The following are means that should be considered and, if possible, integrated in the practices of ethics consultants and committees.
LITERATURE REVIEW Each ethics consultant and/or ethics committee member should be aware of changes in healthcare technology, economics, delivery, and law relevant to their work. In addition, conversation within the ethics community may be helpful in learning how other colleagues are approaching and handling similar challenges. Ethics journal clubs and continuing education and research conferences are especially helpful.
INTERNAL CASE REVIEW The morbidity and mortality conference is a timehonored and indispensable component of medical education and quality improvement. At our institution, cases seen by our EC service are regularly reviewed at this important conference. In addition, regular postcase review provides another means of education and quality assessment. We carry out this process in two phases. First, the EC team has an immediate debriefing session at the conclusion of a case to discuss observations and concerns and provide immediate feedback. Second, cases are presented and discussed again at the EC service’s monthly meetings. This second review allows additional reflection and literature review, and provides an educational opportunity for all EC service members.
SKILLS PRACTICE AND CASE SIMULATION Mayo Clinic, like many academic institutions, has a simulation center. We have used our center as a tool for training new members of our EC service. Before the simulation center was available, we used case dramas to introduce the emotional and behavioral challenges inherent in EC. These dramas were written in house, based upon our cases or composites of similar situations. Either method invokes in the learners the visceral elements of an ethical dilemma that often influence the conduct and outcome of the consultation.
PERIODIC STATISTICAL REVIEW OF CASES We recommend that every EC service identify and label every case request by certain key questions and areas of concern (e.g., withdrawal of life-sustaining treatment, “futility,” artificial nutrition, and hydration) (Swetz et al., 2007a) and periodically review the types of issue that arise. This process identifies recurrent concerns within an institution that may require education programs for staff and/or patients, the development of practice guidelines, policy clarification, or new policy development. For example, when the EC service first began operations at the Mayo Clinic Rochester campus, we had a series of cases involving some neurologists demanding that all poststroke patients unable to eat or drink securely have a feeding tube placed. This practice approach led to frequent conflicts with family members refusing this intervention in light of patients’ previously expressed wishes or patients’ advance directives. These events occurred in the years immediately following the Cruzan decision (Cruzan v. Director, 1990) and issues regarding artificial nutrition and hydration were unclear, or contrary to years of previous practice, in the minds of many clinicians. Recognizing this cluster of cases around a specific topic enabled our EC service to propose additional educational efforts. Within a few months, the service was no longer receiving consultation requests related to this issue.
Resources for ethics consultants and committees Like neurology, the work of ethics is time-consuming. Yet, unlike other fields, charging fees for EC is controversial. While some independent ethics consultants charge for their consultations, we believe EC is a service that should be provided by an institution similar to chaplaincy, social services, or security. There are two main reasons for this conclusion: the absence of a charge reduces the perception, or reality, of financial conflicts of interest for the consultants, and many ECs involve decisions at the end of life, and the conclusions of the consultation may disagree substantially with the opinions of family members or the institution. It may be perceived as adding insult to injury to be charged for a consultation that led to actions of withdrawal of life support. Not charging for the service, however, introduces a challenge for ethics consultants: getting sufficient protected time to provide the service, particularly in a timely manner. Depending upon how many or how frequent are the requests for EC, it can be difficult to determine how much protected time to allocate for those on call. For example, we have had weeks when a single request did not occur, only to have four full consultations come up the following week. On the other hand, not providing
ETHICS COMMITTEES AND CONSULTANTS some degree of time protection for the activity, forcing them to add the service on top of already overburdened clinical schedules, is a good way to lose existing or prospective consultants. Consequently, we believe that time should be provided by institutions as a value-added component of patient care, similar to the aforementioned activities provided, but not directly charged for, by medical establishments.
Internal currency: institutional buy-in For an EC mechanism and ethics committee to benefit an institution, there must be strong support and endorsement from institutional leadership. As such, prospectively working with that leadership during the formative phases of the mechanism/committee is critical. Ideally, it is a service that will be announced and promoted, not only by the providers of the service, but also by institutional leadership. Maintaining that support, however, requires several things from the service members. First, transparency and frequent communication are essential. An ethics consulting mechanism and/or committee must always operate with the highest of ethical standards, and should keep institutional leadership aware of any activities, concerns, or challenges arising within and outside the institution. The quickest way for an ethics committee to lose credibility is for institutional leadership to be blind-sided by an ethical controversy.
THE ETHICS POLICE? Another concern that dogs many ethics consultants and committees is the perception that they are the “ethics police.” The reality is that most ethics consultants and committees don’t have sufficient time to attend to all their own responsibilities, much less be looking over others’ shoulders, or sitting in judgment of the rest of the institution. However, a sure way to disenfranchise institutional leadership or the rest of the staff is the perception of being ethical busybodies. For this reason, it is a policy for our ethics committee that, when approached with a complaint not related to patient care (i.e., “the ethics committee should look into this”), we first secure permission from institutional leadership. Make your services desired and collaborative, not surprising or intrusive.
Additional practical questions regarding the structuring of EC practice Who should have access to request an EC? The authors recommend that all individuals who have direct involvement with the care of a given patient should be allowed to request EC. This includes the primary physician, any consulting physicians, the patient or his/her surrogate or family members, involved nurses, therapists, social
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worker, chaplain, resident physicians, and/or medical students. Some institutions restrict requests only to the attending physician. We believe that such a restriction may prevent EC when it is most needed and valuable. In fact, many consultations in our institution are requested by nonphysicians. If a breakdown in communication has occurred, the healthcare team should be committed to restoring effective communication, and no one individual member of the team should be empowered to prevent that restoration, even if that individual is the primary physician.
SHOULD AN EC BE RECORDED IN THE MEDICAL
RECORD?
Yes. Any clinical consultation has the potential to influence the care of the patient. As such, ECs should be recorded in patients’ medical records in order to communicate the facts, issues, and reasoning leading to recommendations, as well as the subsequent actions of the treating team and outcome of the case (Dubler et al., 2009; ASBH, 2011). Formal and complete documentation in the record also facilitates case review for quality control, follow-up of case outcomes (e.g., whether or not recommendations followed and reasons), and education.
THE REPORTED EXPERIENCE WITH ETHICS CONSULTATION IN PATIENTS WITH NEUROLOGIC DISEASES A review of an institution’s ethics experience can provide valuable information regarding recurrent ethical issues and challenges within the institution. For example, a review of the initial 255 ECs at our institution showed that, despite advances in technology and pharmacotherapy, ethical concerns tended to focus on longstanding ethical challenges, including communication challenges, family members in conflict with each other or with the care team, or questions regarding futility or goals of care in patients with serious illnesses (Swetz et al., 2007a). In our experience, the numbers of ECs in patients with neurologic diseases have remained stable over the past two decades (Fig. 3.1). We have also identified the ethical issues arising in the care of these patients (Swetz et al., 2007b), as have authors from the Cleveland Clinic (Boissy et al., 2008). The findings of these studies are summarized in Table 3.1. Taken together, these reviews provide valuable information regarding patients with neurologic disease who undergo EC. The patients tended to be middle-aged (though younger patients were also encountered). About one-third to one-half of ECs involved patients in intensive care units (ICUs) and about one-quarter to one-half of patients died
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C.C. HOOK ET AL. before leaving the hospital. Although neurologic diagnoses varied, about one-half had ischemic stroke or intracranial hemorrhage. ECs most often focused on withholding or withdrawing life-sustaining treatments, decision-making capacity issues, and family conflict.
80 70 60 50 40 30
VALUE OF ETHICS CONSULTATION
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2011
2010
2009
2008
2007
2006
2005
2004
2003
2002
2001
2000
1999
1998
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1996
0
1995
10
Year Diagnosis other than Neurologic Neurologic Diagnosis
Fig. 3.1. Ethics consultations at Mayo Clinic, Rochester, MN, during 1995–2011.
The Joint Commission requires that healthcare institutions provide access to EC. This requirement suggests that EC is valuable to patients, providers, and institutions. How so? Webster defines “value” as “fair return or equivalent in goods, services, or money for something exchanged” (Merriam-Webster Online Dictionary, 2012). Given increasing healthcare costs and shrinking resources, policy makers, administrators, and payers demand that
Table 3.1 Published reports of ethics consultations involving patients with neurologic diseases
Number of consultations Time period of study Do not resuscitate code status (%) Advance directive (%) Died in hospital Neurologic diagnosis Ischemic stroke Intracranial hemorrhage Traumatic brain injury Dementia Amyotrophic lateral sclerosis Brain tumor Other Primary reasons for ethics consultation* Withholding/withdrawing treatments Futility Legal–ethics interface Competency, decisional capacity Psychiatric issues Patient autonomy Family conflict Staff/professional conflict Quality of life, end of life Advance directives Feeding tube issue Other
Swetz et al. (2007b) (patients with neurologic disease only)
Boissy et al. (2008)
47 1995–2005 28 (60) 12 (26) 12 (26)
49 1998–2004 – 43 (88) 21 (43)
15 (32) 10 (21) 7 (15) 3 (6) 2 (4) – 9 (19)
12 (24) 16 (33) – – 2 (4) 7 (14) 12 (24)
32 (68) 24 (51) – 40 (85) – 18 (38) 34 (72){ { 29 (62) 12 (26) 17 (36) –
15 (31){ { 1 (2) 12 (24) 3 (6) – 5 (10) 3 (6) – – 3 (6) 7 (14)
*The total of the percentages exceeds 100% since, for some cases, more than one reason for ethics consultation existed. { The number presented is the sum of the two cells.
ETHICS COMMITTEES AND CONSULTANTS expenditures be justified through measurable results (Fox and Arnold, 1996). In this section, we review the evidence that committing resources (e.g., salary and benefits for personnel) to EC and committees is valuable. Relatively few outcome studies on EC have been published (none specifically related to patients with neurologic diseases). Reasons for this state of affairs include that EC was implemented widely before appropriate outcome measures were contemplated and that such measures are complex (Pfafflin et al., 2009). For example, “hard” outcomes such as morbidity and mortality are easy to measure, but their relevance to EC is unclear (ASBH, 2009). Take, for example, two critically ill patients who are identical in every way (e.g., age, sex, disease), except for their wishes regarding the use of lifesustaining treatments: one patient desires such treatments under all circumstances, whereas the other wishes to avoid them. Ethical outcomes for both would be to adhere to their healthcare values and goals according to established medical standards. As such, ethical outcomes for both might have different effects on outcomes such as length of hospital stay and longevity. “Soft” outcomes, therefore, are likely better suited for assessing the value of EC. ASBH has identified four such outcomes: (1) ethicality; (2) satisfaction; (3) resolution of conflict; and (4) education (Fox and Arnold, 1996). Another outcome that has gained attention is cost containment or reduction. In this section, empirical studies that have assessed the value of EC using these outcomes are reviewed.
Ethicality Ethicality is “the degree to which clinical practices conform to established ethical standards (e.g., informed consent for medical interventions, assessing patients’ decision-making capacity, withdrawing life-sustaining interventions from a dying patient, and respecting patients’ advance directives)” (ASBH, 2011, p. 39). Assessing this outcome includes determining whether ethics consultants’ recommendations are consistent with established ethical standards and whether the recommendations are followed and the resulting clinical actions are consistent with these standards. Although ethicality has been studied in other arenas (e.g., whether patients’ written wishes are carried out; conformance to informed consent standards; surrogate– patient concordance on wishes), little is known about the effects of EC on clinicians’ actions and whether those actions adhere to ethical standards (Fox and Arnold, 1996). As a result, proxy measures of ethicality have been used, such as whether ethics consultants’ recommendations are
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consistent with established ethical standards (ASBH, 2011, pp. 39–40). For example, in one study involving hypothetical vignettes, ethics consultants’ recommendations regarding life-sustaining treatments in patients in a persistent vegetative state were assessed (and were varied) (Fox and Stocking, 1993). Notably, a leader in this arena has been the U.S. Department of Veterans Affairs (VA) National Center for Health Care Ethics, which has shown that, in nearly 90% of instances, ethics consultants’ recommendations are followed (ASBH, 2011, p. 41). Nevertheless, further research is needed to determine the associations between EC and ethicality. Means by which these associations can be studied include chart reviews (e.g., reviews of ethics consultants’ recommendations, whether these recommendations were followed, and other outcomes), questionnaires and interviews of involved parties (i.e., patients, providers, and ethics consultants), and so on (Fox and Arnold, 1996).
Satisfaction Satisfaction, the outcome that has been used most often to assess the value of EC, is “a subjective assessment of participants’ experiences with the EC” (ASBH, 2011, p. 40). Multiple studies have assessed satisfaction among patients, patients’ loved ones, providers, and ethics consultants (Banerjee and Kuschner, 2007; Pfafflin et al., 2009). Overall, these studies have shown that a majority of individuals involved in or affected by EC are satisfied. For example, several studies have shown not only high satisfaction among clinicians, but also that clinicians were predisposed to using EC again (LaPuma et al., 1992; Schneiderman et al., 2003; Duval et al., 2004). The aforementioned VA program has had similar results (ASBH, 2011, p. 40). Nevertheless, using satisfaction as a measure of the value of EC has limitations. Satisfaction with EC – as a general concept – has been used, but not satisfaction with specifics such as ethics consultants’ knowledge and skills, methods, and recommendations. Second, satisfaction alone is insufficient for evaluating EC; doing so might incentivize ethics consultants “to make recommendations that maximize the contentment of one (or both) parties” (Craig and May, 2006). For example, ethics consultants’ recommendations aligned with established ethical standards may result in low clinician or patient satisfaction. Dissatisfied individuals nonetheless may regard the service as helpful (Pfafflin et al., 2009). Overall, satisfaction as an outcome measure should be contextualized with other relevant outcomes of EC.
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Conflict resolution Conflict resolution is “the degree to which parties involved in an EC featuring a conflict in values or opinions perceive that the conflict has been appropriately resolved” (ASBH, 2011, p. 39). Assistance with conflict resolution is a common reason for EC (Orr, 2001). Several studies have explored conflict resolution as an outcome of EC. For example, a study of EC in the ICU showed that most patients/surrogates and clinicians thought the service was helpful in resolving conflict (Schneiderman et al., 2003). The aforementioned VA program has had similar results (ASBH, 2011, pp. 40–41). Conflict resolution, however, is not the only, or the most important, goal of EC (Fox and Arnold, 1996). As an outcome, it has limitations that are similar to satisfaction. Conflict may remain following an EC even though the recommendations and resultant clinical actions are consistent with ethical standards. For example, an incapacitated patient’s loved ones may disagree with an ethics consultant’s recommendation that it is permissible to carry out the patient’s wishes to withdraw life-sustaining treatment. Or, a clinician may disagree with an ethics consultant’s recommendation that it’s not permissible to administer blood products to a patient who refuses them for religious reasons (Orr, 2001). In such scenarios, conflict may persist despite adherence with ethical standards. Conflict resolution, like satisfaction, should be contextualized with other relevant outcomes of EC.
Education Although prior studies have assessed the effects of ethics education on gaining new knowledge, skills, and attitudes regarding clinical ethics, no study has directly measured education (i.e., change in knowledge, skills, and attitudes of clinical ethics among patients, surrogates, and clinicians) as an outcome of EC (Fox and Arnold, 1996). Several studies, however, have used proxy measures of education. In one study, clinicians found EC “to be important in. . .educating the team” (Orr and Moon, 1993). In a national survey, a majority of U.S. internists “reported that they learned something from the consultation that might prove helpful in the future” (Duval et al., 2004). In another study, clinicians and surrogates found EC “beneficial in helping to educate all parties” (Cohn et al., 2007). A study of EC in the ICU showed that most patients/surrogates and clinicians thought the service was helpful in educating (Schneiderman et al., 2003). Education can also involve identification of issues requiring institutional or health system intervention. EC is uniquely positioned to identify these issues. For example, at our institution, EC identified emerging
clinical issues such as withdrawal of cardiovascular implantable electronic device (e.g., pacemaker and implantable cardioverter-defibrillator) support from patients who no longer wanted device therapies (Mueller et al., 2003) and the ethical aspects of altruistic living organ donation by group associations (Mueller et al., 2008) as issues that required institutional attention, review, and education. EC ultimately resulted in proactive palliative medicine consultation for recipients of ventricular assist devices as “destination therapy” at our institution (Swetz et al., 2011). Furthermore, EC can guide ethics education. For example, a given institution may encounter specific ethical dilemmas more than other dilemmas. EC can be used to identify these common dilemmas and create ethics curricula for affected patients, clinicians, and others (Mueller and Koenig, 2006).
Cost containment or reduction EC as a means of cost containment or reduction – and therefore a measure of its value – has received attention in recent years. As the logic goes, EC may result in reduced utilization of unwanted (by patients) or nonbeneficial treatments (as perceived by clinicians) and, therefore, save money. Several studies have examined the effects of EC on utilization of life-sustaining treatments and length of stay in the ICU – outcomes that are associated with increased costs. For example, in a prospective controlled study, EC resulted in significantly reduced ICU days and more frequent decisions to forgo life-sustaining treatments (Dowdy et al., 1998). A randomized controlled trial showed that, compared with usual care, EC had no effect on mortality, but was associated with significantly reduced hospital and ICU days and use of life-sustaining treatments (Schneiderman et al., 2003). Using cost to assess the value of EC, however, has important limitations. First, other factors, such as patients’ quality of life and healthcare-related values and goals, may take priority over cost (Emanuel and Emanuel, 1994). For example, providing palliative care to a dying patient can be costly (e.g., intravenous narcotic analgesia), but is nevertheless medically and ethically indicated. Providing a time-limited trial of costly life-sustaining treatment to a patient who wants and may benefit from it is ethically preferable to unilaterally withholding such treatment. Another limitation of using cost to assess the value of EC is that ethics consultants would likely, as a result, be biased toward withholding and withdrawing healthcare resources regardless of patients’ values and goals – an obvious conflict.
ETHICS COMMITTEES AND CONSULTANTS
Measuring value in EC? Empirical evidence suggests that ethicality, satisfaction, conflict resolution, education, and cost containment or reduction are outcome measures that can be used to assess the value of EC. Each of these measures, however, has limitations and no measure alone is sufficient for assessing the value of EC. Instead, multiple measures should be used.
CONCLUSION EC and ethics committees are valuable assets for clinicians, patients, families, and institutions to deal with the increasingly complex environment and technologies of healthcare, and help achieve the best care for patients possible. As with other fields of medicine, clinical ethics has its own body of specialized and multidisciplinary knowledge, and ethics consultants must rigorously and continuously train to achieve and maintain competency. Medical institutions should commit necessary resources in protected time to allow ethics consultants and committee members to perform their unique jobs with excellence. We believe that that investment results in a win-win situation for patients, families, medical professionals, and medical institutions.
REFERENCES American Society for Bioethics and Humanities Clinical Ethics Task Force (2009). Improving Competencies in Clinical Ethics Consultation: An Education Guide. American Society for Bioethics and Humanities, Glenview, IL. American Society for Bioethics, Humanities Core Competencies Task Force (2011). Core Competencies for Healthcare Ethics Consultation, 2nd edn. In: American Society for Bioethics and Humanities (ASBH), Glenview, IL. Banerjee D, Kuschner WG (2007). Principles and procedures of medical ethics case consultation. Br J Hosp Med 68: 140–144. Beauchamp TL, Childress JF (2008). Principles of Biomedical Ethics, 6th edn. Oxford University Press, New York. Bedford ELE (2011). The Core Competencies: A Roman Catholic Critique. HEC Forum 23: 147–169. Bishop JP, Fanning JB, Bliton MJ (2009). Of goals and goods and floundering about: a dissensus report on clinical ethics consultation. HEC Forum 21: 275–291. Boissy AR, Ford PJ, Edgell RC et al. (2008). Ethics consultations in stroke and neurological disease: a 7-year retrospective review. Neurocrit Care 9: 394–399. Catholic Health Association of the United States (CHAUSA) (2012). Catholic Health Care in the United States – 2012. CHAUSA.org, Washington, DC. http://www.chausa.org/ Pages/About_CHA/Overview/ (accessed August 12, 2012). Cohn F, Goodman-Crews P, Rudman W et al. (2007). Proactive ethics consultation in the ICU: a comparison of value perceived by healthcare professionals and recipients. J Clin Ethics 18: 140–147.
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Craig JM, May T (2006). Evaluating the outcomes of ethics consultation. J Clin Ethics 17: 168–180. Cruzan v. Director, 497 U.S. 261 (1990). Dowdy MD, Robertson C, Bander JA (1998). A study of proactive ethics consultation for critically and terminally ill patients with extended lengths of stay. Crit Care Med 26: 252–259. Dubler NN, Mayris PW, Swiderski DM et al. (2009). Charting the future: credentialing, privileging, quality, and evaluation in clinical ethics consultation. Hastings Cent Rep 39: 23–33. Duval G, Clarridge B, Gensler G et al. (2004). A national survey of US internists’ experiences with ethical dilemmas and ethics consultation. J Gen Intern Med 19: 251–258. Emanuel EJ, Emanuel LL (1994). The economics of dying. The illusion of cost savings at the end of life. N Engl J Med 330: 540–544. Engelhardt HT (2011). Core competencies for health care ethics consultants: in search of professional status in a post-modern world. HEC Forum 23: 129–145. Fox E, Arnold RM (1996). Evaluating outcomes in ethics consultation research. J Clin Ethics 7: 127–138. Fox E, Stocking C (1993). Ethics consultants’ recommendations for life-prolonging treatment of patients in a persistent vegetative state. JAMA 270: 2578–2582. Fox E, Myers S, Pearlman RA (2007). Ethics consultation in United States Hospitals: a national survey. Am J Bioeth 7: 13–25. Joint Commission (2009). Leadership in Healthcare Organizations: A Guide to Joint Commission Leadership Standards. Section LD.04.02.03, Elements of Performance (EP) 1 and 2, p. 28, www.jointcommission.org/assets/1/18/ WP_leadership_standards.pdf (accessed August 9, 2012). Jonsen A, Siegler M, Winslade W (2010). Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, 7th edn. McGraw-Hill Medical, New York. King NM (1999). Who ate the apple? A commentary on the Core Competencies Report. HEC Forum 11: 170–175. Kon AA, Rich B, Sadorra C et al. (2009). Complex bioethics consultation in rural hospitals: using telemedicine to bring academic bioethicists into outlying communities. J Telemed Telecare 15: 264–269. LaPuma J, Toulmin SE (1989). Ethics consultants and ethics committees. Arch Intern Med 149: 1109–1112. LaPuma J, Stockling CB, Darling CM et al. (1992). Community hospital ethics consultation: evaluation and comparison with a university hospital service. Am J Med 92: 346–351. Lo B (2009). Resolving Ethical Dilemmas: A Guide for Clinicians, 4th edn. Lippincott Williams & Wilkins, Philadelphia. Merriam-Webster Online Dictionary. “Value” http://www. merriam-webster.com/dictionary/value (accessed August 12, 2012). Mueller PS, Koenig BA (2006). Systematic review of ethics consultation: a route to curriculum development in post-graduate medical education. Am J Bioeth 6: 21–23. Mueller PS, Hook CC, Hayes DL (2003). Ethical analysis of withdrawal of pacemaker or implantable cardioverter-defibrillator support at the end of life. Mayo Clin Proc 78: 959–963. Mueller PS, Case EJ, Hook CC (2008). Responding to offers of altruistic living unrelated kidney donation by group
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associations: an ethical analysis. Transplant Rev (Orlando) 22: 200–205. Orr RD (2001). Methods of conflict resolution at the bedside. Am J Bioeth 1: 45–46. Orr RD, Moon E (1993). Effectiveness of an ethics consultation service. J Fam Pract 36: 49–53. Orr RD, Shelton W (2009). A process and format for clinical ethics consultation. J Clin Ethics 20: 79–89. Pfafflin M, Kobert K, Reiter-Theil S (2009). Evaluating clinical ethics consultation: a European perspective. Camb Q Healthc Ethics 18: 406–419. Rushton C, Youngner SJ, Skeel J (2003). Models for ethics consultation: individual, team, or committee? In: MP Alusio, RM Arnold, SJ Youngner (Eds.), Ethics Consultation: From Theory to Practice. Johns Hopkins University Press, Baltimore, MD, pp. 88–95. Schneiderman L, Gilmer T, Teetzel HD et al. (2003). Effect of ethics consultations on non-beneficial life-sustaining treatments in the intensive care setting: a randomized controlled trial. JAMA 290: 1166–1172. Scofield G (1993). Ethics consultation: the least dangerous profession? Camb Q Healthc Ethics 2: 417–448.
Smith LB, Barnosky A (2011). Web-based clinical ethics consultation: a model for hospital-based practice. Physician Exec J, 62–64, November-December. Sulmasy DP (2001). On the current state of clinical ethics. Pain Med 2: 97–105. Swenson MD, Miller RB (1992). Ethics case review in health care institutions. Arch Intern Med 152: 694–697. Swetz KM, Crowley ME, Hook CC et al. (2007a). Report of 255 clinical ethics consultations and review of the literature. Mayo Clin Proc 82: 686–691. Swetz KM, Crowley ME, Hook CC et al. (2007b). Ethics consultation and patients with neurological diseases. Mayo Clin Proc 82: 1577–1579. Swetz KM, Freeman MR, AbouEzzeddine OF et al. (2011). Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy. Mayo Clin Proc 86: 493–500. United States Conference of Catholic Bishops (USCCB) (2009). Ethical and Religious Directives for Catholic Health Care Services, 5th edn. In: USCCB Publishing, Washington, DC.
Chapter 3
Ethics committees and consultants 1
C. CHRISTOPHER HOOK1, KEITH M. SWETZ2, AND PAUL S. MUELLER2* Division of Hematology, Department of Medicine, Mayo Clinic, Rochester, MN, USA
2
Division of General Internal Medicine, Department of Medicine, Mayo Clinic, Rochester, MN, USA
INTRODUCTION Life, health, illness, disability, and death are at the top of human concerns, and the focus of healthcare. These concerns are fundamental components of each person’s worldview. As such, healthcare is an ethically rich endeavor, so much so that the concept of the profession of medicine is inconceivable without a clear ethical framework. Yet, each individual patient and professional holds opinions regarding the larger issues based upon factual knowledge, subjective experiences, and varying philosophic and religious presuppositions. Differences in ethical conclusions about the appropriateness of a given approach to medical intervention are therefore not uncommon, particularly in the increasingly diverse natures of our society. To complicate things further, the rapid development of powerful biotechnologies that challenge existing paradigms and are increasingly more expensive and demanding upon limited resources introduces challenges to many worldviews requiring new reflection and ethical innovation. These challenges arise at all levels of the healthcare process – from the bedside to the boardroom – and at all levels of the healthcare organization. Two developments of the last 50 years have emerged to help address these ethical questions and challenges: clinical ethics consultation (EC) and institutional ethics committees. EC focuses at the bedside, active case level, whereas institutional ethics committees focus on the institutional, practice, and policy level. This chapter will describe the goals and possible structures for EC and committees, the training and institutional resources required for these activities, a review of reported experience with EC, and a review of the published experience demonstrating the value of EC. It is important to state that the activities and structures described in this chapter are separate from
Institutional Review Boards (IRBs), which focus entirely on research ethics and performance. IRBs function independently of other administrative structures of an institution and are governed by and answerable to federal authorities. EC and ethics committees deal with ethical questions beyond the purview of the IRB.
CLINICAL EC Clinical EC (CEC), or simply EC, is defined by the American Society for Bioethics and Humanities (ASBH) as “a set of services provided by an individual or group in response to questions from patients, families, surrogates, healthcare professionals, or other involved parties who seek to resolve uncertainty or conflict regarding value-laden concerns that emerge in health care” (ASBH, 2011). Notably, the Joint Commission (2009) requires healthcare institutions to have some methodology for addressing ethical concerns in patient care. In the only national survey of U.S. EC activities to date, it was concluded that in a given year (2006) approximately 29 000 ethics consultants provided more than 314 000 hours of service in 36 000 ECs (Fox et al., 2007).
Approaches to clinical EC Akin to any other form of medical consultation, the goal of EC is to provide timely access to individuals with the skills and knowledge necessary to assist patients and clinicians in addressing challenging ethical questions and dilemmas. For example, how should the care team respond to conflicts between the wishes expressed in the advance directive of a patient, now suffering from acute stroke and lacking decision-making capacity, and the demands of the patient’s surrogate decisionmaker? Or, how should the team respond to continued
*Correspondence to: Paul S. Mueller, M.D., Mayo Clinic, 200 First Street SW, Division of General Internal Medicine, Gonda 17, Rochester, MN 55905, USA. Tel: þ1-507-538-6341, E-mail: [email protected]
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requests from a patient with diminished capacity, who indicates that he or she wishes to receive ongoing aggressive interventions when there is little, if any, chance of the patient ever leaving the hospital? In general, there are three approaches to conducting CEC: (1) the individual ethics consultant model; (2) the ethics team model; and (3) the ethics committee model (LaPuma and Toulmin, 1989; Swenson and Miller, 1992; Sulmasy, 2001; Rushton et al., 2003; Orr and Shelton, 2009). The individual ethics consultant model involves a single ethics consultant performing the entire consultation process. This individual reports to some level of institutional leadership such as an ethics committee, the institution’s clinical practice committee, or some other governing body. The ethics team model employs a multidisciplinary team of several individuals, though one person may be the designated on-call member at a given time and the first responder, data collector, and meeting organizer for the team. Professionals included in the team often include a physician, nurse, social worker, chaplain, and occasionally legal counsel (though often in an educational capacity only). The ethics committee model requires that the case be brought by the requester(s) directly to a larger institutional ethics committee, which hears and addresses the dilemma in a group meeting. Some institutions use hybrids of these models. In the aforementioned national EC survey, 9% of institutions used the individual consultant model, 68% the small team model, and 23% the full ethics committee model, though many institutions reported they at times employed more than one or combined models depending on the nature and needs of the consultation (Fox et al., 2007). With the development of larger healthcare networks involving many sites under a single administrative umbrella, long-distance, teleconferencing or e-consultations are a growing method of providing EC, with combinations of the three historical models providing the staffing (Kon et al., 2009; Smith and Barnosky, 2011). The individual consultant EC model has the advantages of speed and efficiency (depending, of course, on whether the consultant is given protected time from other responsibilities in order to provide the service immediately). By not having to coordinate multiple schedules of members of a team, there is the potential for more timely response and resolution. However, the disadvantage of this approach is that the contributions of the collective expertise, different ways of perceiving and gathering information, and varied personal and professional perspectives brought by individuals from different disciplines are lacking. The team EC model provides multidisciplinary perspectives and is the model used at our institution (Mayo Clinic) and the authors can attest to its value. However,
this model has the potential downside of decreased timeliness, as it requires finding time in the midst of team members’ other responsibilities to meet with the healthcare team and patient/family, often resulting in meeting times outside standard work-day hours. The ethics committee EC model is the most cumbersome and inflexible because of the number of individuals involved and the fixed meeting schedules common to most committees. Because of the typical size of ethics committees, this method may become the victim of so-called “group-think” or “nonthink” (Scofield, 1993), and may also be unduly intimidating to consultation requestors, particularly patients and family members. However, it can provide the broadest number of disciplines and interests for adjudicating the case, as well as the collective response of the institution rather than the potentially more subjective conclusions of a few.
ETHICS COMMITTEES Ethics committees may provide support for, and/or may directly perform, clinical EC, as noted above. Ethics committees, however, usually perform other functions as well. These include establishing institutional policy and procedural guidelines for aspects of care with substantial ethical components. Examples include practices at the beginning of life, end-of-life care, institutional policy on resource allocation, and conflicts of conscience. The ethics committee, therefore, provides analysis and guidance to institutional leadership. Given the number of disciplines that have developed substantial volumes of their own ethics literature (e.g., transplantation, reproductive medicine, genetics, palliative medicine, regenerative medicine and neurology/ neuroscience, to name a few), larger institutions with substantial practices in these areas may also create field-, or topic-, specific ethics committees. For example, at Mayo Clinic we have a Reproductive Medicine Advisory Board and a Transplantation Ethics Advisory Board, and are in the early phases of creating a Neuroethics Advisory Board. These subspecialty ethics committees, along with our EC service, report to our Clinical Ethics Committee, which is a subcommittee of our enterprise-wide Clinical Practice Committee. An advantage of these subspecialty ethics committees is that they are able to develop substantial experience and expertise in their fields beyond what a general ethics committee might be able to acquire.
MAINTENANCE OF ETHICS COMMITTEES AND SERVICES Both EC services and ethics committees have requirements to function effectively, including knowledgeable personnel skilled in communication and mediation,
ETHICS COMMITTEES AND CONSULTANTS adequate time to perform the respective services, and institutional support.
Ethics education Because the knowledge involved in clinical ethics is complex and multidisciplinary (practical ethics, ethical theory, epistemology, logic, law, medicine, public health, theology, psychology, counseling, dispute mediation, history, economics), there has been decades-long debate as to what constitutes the core competencies of ethics consultants. Part of this discussion has been fueled by genuine clinical need, but there have also been efforts to establish these competencies as a means of trying to define EC as a separate profession, with independent certification. The authors of this chapter sympathize with the former goal, while the latter is dubious, as will be discussed below. ASBH has led the efforts to create a set of core competencies for EC, and recently released the second edition of its guidelines (ASBH, 2011). ASBH has also published a small book listing references and recommended reading to help institutions educate ethics consultants and committee members (ASBH, 2009). Other texts are also helpful (Beauchamp and Childress, 2008; Lo, 2009; Jonsen et al., 2010). Additionally, ASBH has recommendations about how EC should be performed, many of which are common sense, while some are controversial and have been criticized by members of the bioethics community (King, 1999; Bishop et al., 2009; Engelhardt, 2011). ASBH advocates a nonauthoritarian approach to CEC, promoting instead “ethics facilitation.” All parties involved and points of view expressed should be respected, culminating in a “principled ethical resolution”; i.e., the final recommendations should “comport with the bioethics literature, medical literature and other relevant scholarly literature, professional standards, statutes, judicial opinions and pertinent institutional policies” (ASBH, 2011, p. 6). While an ethics consultant may share objective experiences and knowledge, the consultant should not share his or her own beliefs or opinions. As much as possible, multiple options should be offered, but specific recommendations can be given if they clearly achieve identified common goals of the involved parties. Recommendations against actions that are illegal or violate policy should be articulated. Finally, if consensus cannot be reached among the parties, the process should identify the rightful decision-maker and support that individual. In other words, EC should promote a secular approach to understanding and facilitation of patient autonomy, which focuses more on who is the proper decision-maker rather than on what is decided, with the boundary being a proscription against violating secular law.
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The deficiency of this prescription is that ethics is as much about “the ought” as it is about “the permissible.” Indeed, history has demonstrated that policy and law may authorize the unethical. Should it not also be the duty of the ethicist to oppose what is unethical? ASBH guidelines, however, do not deal with this reality or questions of ought, raising the question: where did the ethics go? The ASBH prescription is also potentially problematic to a substantial portion of healthcare institutions and healthcare delivery in the United States. Twelve percent of U.S. general hospitals are religious nonfor-profit institutions. It is reported that one in six Americans is treated each year in a Catholic facility (CHAUSA, 2012). The Ethical and Religious Directives for Catholic Health Care Services (USCCB, 2009), which prescribe the ethical norms for conduct that is permissible within the boundaries of Roman Catholic institutions, maintains a different understanding of human autonomy from that of ASBH. According to this view, there are certain acts that an individual is never allowed to choose “autonomously,” some of which are legally permissible by secular law. Given that some acts, such as abortion, assisted suicide, sterilization, and contraception, are viewed as “intrinsically evil” by Catholic moral theology, they are never an acceptable choice, and thus cannot be advocated by ethics consultants within Roman Catholic institutions. The ASBH Core Competencies would specify that the ethics consultant should remain neutral on issues in which neutrality would be considered complicit facilitation by Catholic moral theology (Bedford, 2011). Beyond the criticism that the ASBH Core Competencies advocate a secular approach to EC, the other major concern is the insinuation that ethics and the outcomes of EC can be quantified and justified in traditional administrative metrics. For example, satisfaction with the consultation process can be statistically measured, but whether the right thing was done cannot. Given that ethics concerns itself with the right, the good, and the ought, the most important aspect of the whole endeavor is not a primary goal of the Core Competencies, nor something that is part of the evaluation of the success or failure of the process. If the Core Competencies process-over-content approach becomes dominant, then EC will have devolved into the nature of its least common denominator member, the legal profession, for contemporary law does not necessarily concern itself with truth, right, or justice, but rather procedure. (The “value” of EC is explored below.) These concerns aside, in the future it is likely that accrediting organizations such as Joint Commission, in conjunction with groups such as the National Working Group of the Clinical Ethics Credentialing Project
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(Dubler et al., 2009), will establish specific standards for adjudicating ethical concerns in healthcare institutions, and the ASBH Core Competencies presently are the only standards beyond individual institutional practices and policies. Institutions should, at the very least, be aware of the contents of the ASBH Core Competencies.
Maintenance of competencies Like other fields, ethics is dynamic. Every ethics consultant, EC service, and ethics committee must be as committed to maintaining up-to-date knowledge and skills as other healthcare professionals. The following are means that should be considered and, if possible, integrated in the practices of ethics consultants and committees.
LITERATURE REVIEW Each ethics consultant and/or ethics committee member should be aware of changes in healthcare technology, economics, delivery, and law relevant to their work. In addition, conversation within the ethics community may be helpful in learning how other colleagues are approaching and handling similar challenges. Ethics journal clubs and continuing education and research conferences are especially helpful.
INTERNAL CASE REVIEW The morbidity and mortality conference is a timehonored and indispensable component of medical education and quality improvement. At our institution, cases seen by our EC service are regularly reviewed at this important conference. In addition, regular postcase review provides another means of education and quality assessment. We carry out this process in two phases. First, the EC team has an immediate debriefing session at the conclusion of a case to discuss observations and concerns and provide immediate feedback. Second, cases are presented and discussed again at the EC service’s monthly meetings. This second review allows additional reflection and literature review, and provides an educational opportunity for all EC service members.
SKILLS PRACTICE AND CASE SIMULATION Mayo Clinic, like many academic institutions, has a simulation center. We have used our center as a tool for training new members of our EC service. Before the simulation center was available, we used case dramas to introduce the emotional and behavioral challenges inherent in EC. These dramas were written in house, based upon our cases or composites of similar situations. Either method invokes in the learners the visceral elements of an ethical dilemma that often influence the conduct and outcome of the consultation.
PERIODIC STATISTICAL REVIEW OF CASES We recommend that every EC service identify and label every case request by certain key questions and areas of concern (e.g., withdrawal of life-sustaining treatment, “futility,” artificial nutrition, and hydration) (Swetz et al., 2007a) and periodically review the types of issue that arise. This process identifies recurrent concerns within an institution that may require education programs for staff and/or patients, the development of practice guidelines, policy clarification, or new policy development. For example, when the EC service first began operations at the Mayo Clinic Rochester campus, we had a series of cases involving some neurologists demanding that all poststroke patients unable to eat or drink securely have a feeding tube placed. This practice approach led to frequent conflicts with family members refusing this intervention in light of patients’ previously expressed wishes or patients’ advance directives. These events occurred in the years immediately following the Cruzan decision (Cruzan v. Director, 1990) and issues regarding artificial nutrition and hydration were unclear, or contrary to years of previous practice, in the minds of many clinicians. Recognizing this cluster of cases around a specific topic enabled our EC service to propose additional educational efforts. Within a few months, the service was no longer receiving consultation requests related to this issue.
Resources for ethics consultants and committees Like neurology, the work of ethics is time-consuming. Yet, unlike other fields, charging fees for EC is controversial. While some independent ethics consultants charge for their consultations, we believe EC is a service that should be provided by an institution similar to chaplaincy, social services, or security. There are two main reasons for this conclusion: the absence of a charge reduces the perception, or reality, of financial conflicts of interest for the consultants, and many ECs involve decisions at the end of life, and the conclusions of the consultation may disagree substantially with the opinions of family members or the institution. It may be perceived as adding insult to injury to be charged for a consultation that led to actions of withdrawal of life support. Not charging for the service, however, introduces a challenge for ethics consultants: getting sufficient protected time to provide the service, particularly in a timely manner. Depending upon how many or how frequent are the requests for EC, it can be difficult to determine how much protected time to allocate for those on call. For example, we have had weeks when a single request did not occur, only to have four full consultations come up the following week. On the other hand, not providing
ETHICS COMMITTEES AND CONSULTANTS some degree of time protection for the activity, forcing them to add the service on top of already overburdened clinical schedules, is a good way to lose existing or prospective consultants. Consequently, we believe that time should be provided by institutions as a value-added component of patient care, similar to the aforementioned activities provided, but not directly charged for, by medical establishments.
Internal currency: institutional buy-in For an EC mechanism and ethics committee to benefit an institution, there must be strong support and endorsement from institutional leadership. As such, prospectively working with that leadership during the formative phases of the mechanism/committee is critical. Ideally, it is a service that will be announced and promoted, not only by the providers of the service, but also by institutional leadership. Maintaining that support, however, requires several things from the service members. First, transparency and frequent communication are essential. An ethics consulting mechanism and/or committee must always operate with the highest of ethical standards, and should keep institutional leadership aware of any activities, concerns, or challenges arising within and outside the institution. The quickest way for an ethics committee to lose credibility is for institutional leadership to be blind-sided by an ethical controversy.
THE ETHICS POLICE? Another concern that dogs many ethics consultants and committees is the perception that they are the “ethics police.” The reality is that most ethics consultants and committees don’t have sufficient time to attend to all their own responsibilities, much less be looking over others’ shoulders, or sitting in judgment of the rest of the institution. However, a sure way to disenfranchise institutional leadership or the rest of the staff is the perception of being ethical busybodies. For this reason, it is a policy for our ethics committee that, when approached with a complaint not related to patient care (i.e., “the ethics committee should look into this”), we first secure permission from institutional leadership. Make your services desired and collaborative, not surprising or intrusive.
Additional practical questions regarding the structuring of EC practice Who should have access to request an EC? The authors recommend that all individuals who have direct involvement with the care of a given patient should be allowed to request EC. This includes the primary physician, any consulting physicians, the patient or his/her surrogate or family members, involved nurses, therapists, social
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worker, chaplain, resident physicians, and/or medical students. Some institutions restrict requests only to the attending physician. We believe that such a restriction may prevent EC when it is most needed and valuable. In fact, many consultations in our institution are requested by nonphysicians. If a breakdown in communication has occurred, the healthcare team should be committed to restoring effective communication, and no one individual member of the team should be empowered to prevent that restoration, even if that individual is the primary physician.
SHOULD AN EC BE RECORDED IN THE MEDICAL
RECORD?
Yes. Any clinical consultation has the potential to influence the care of the patient. As such, ECs should be recorded in patients’ medical records in order to communicate the facts, issues, and reasoning leading to recommendations, as well as the subsequent actions of the treating team and outcome of the case (Dubler et al., 2009; ASBH, 2011). Formal and complete documentation in the record also facilitates case review for quality control, follow-up of case outcomes (e.g., whether or not recommendations followed and reasons), and education.
THE REPORTED EXPERIENCE WITH ETHICS CONSULTATION IN PATIENTS WITH NEUROLOGIC DISEASES A review of an institution’s ethics experience can provide valuable information regarding recurrent ethical issues and challenges within the institution. For example, a review of the initial 255 ECs at our institution showed that, despite advances in technology and pharmacotherapy, ethical concerns tended to focus on longstanding ethical challenges, including communication challenges, family members in conflict with each other or with the care team, or questions regarding futility or goals of care in patients with serious illnesses (Swetz et al., 2007a). In our experience, the numbers of ECs in patients with neurologic diseases have remained stable over the past two decades (Fig. 3.1). We have also identified the ethical issues arising in the care of these patients (Swetz et al., 2007b), as have authors from the Cleveland Clinic (Boissy et al., 2008). The findings of these studies are summarized in Table 3.1. Taken together, these reviews provide valuable information regarding patients with neurologic disease who undergo EC. The patients tended to be middle-aged (though younger patients were also encountered). About one-third to one-half of ECs involved patients in intensive care units (ICUs) and about one-quarter to one-half of patients died
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C.C. HOOK ET AL. before leaving the hospital. Although neurologic diagnoses varied, about one-half had ischemic stroke or intracranial hemorrhage. ECs most often focused on withholding or withdrawing life-sustaining treatments, decision-making capacity issues, and family conflict.
80 70 60 50 40 30
VALUE OF ETHICS CONSULTATION
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2011
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2008
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2006
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2003
2002
2001
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0
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Year Diagnosis other than Neurologic Neurologic Diagnosis
Fig. 3.1. Ethics consultations at Mayo Clinic, Rochester, MN, during 1995–2011.
The Joint Commission requires that healthcare institutions provide access to EC. This requirement suggests that EC is valuable to patients, providers, and institutions. How so? Webster defines “value” as “fair return or equivalent in goods, services, or money for something exchanged” (Merriam-Webster Online Dictionary, 2012). Given increasing healthcare costs and shrinking resources, policy makers, administrators, and payers demand that
Table 3.1 Published reports of ethics consultations involving patients with neurologic diseases
Number of consultations Time period of study Do not resuscitate code status (%) Advance directive (%) Died in hospital Neurologic diagnosis Ischemic stroke Intracranial hemorrhage Traumatic brain injury Dementia Amyotrophic lateral sclerosis Brain tumor Other Primary reasons for ethics consultation* Withholding/withdrawing treatments Futility Legal–ethics interface Competency, decisional capacity Psychiatric issues Patient autonomy Family conflict Staff/professional conflict Quality of life, end of life Advance directives Feeding tube issue Other
Swetz et al. (2007b) (patients with neurologic disease only)
Boissy et al. (2008)
47 1995–2005 28 (60) 12 (26) 12 (26)
49 1998–2004 – 43 (88) 21 (43)
15 (32) 10 (21) 7 (15) 3 (6) 2 (4) – 9 (19)
12 (24) 16 (33) – – 2 (4) 7 (14) 12 (24)
32 (68) 24 (51) – 40 (85) – 18 (38) 34 (72){ { 29 (62) 12 (26) 17 (36) –
15 (31){ { 1 (2) 12 (24) 3 (6) – 5 (10) 3 (6) – – 3 (6) 7 (14)
*The total of the percentages exceeds 100% since, for some cases, more than one reason for ethics consultation existed. { The number presented is the sum of the two cells.
ETHICS COMMITTEES AND CONSULTANTS expenditures be justified through measurable results (Fox and Arnold, 1996). In this section, we review the evidence that committing resources (e.g., salary and benefits for personnel) to EC and committees is valuable. Relatively few outcome studies on EC have been published (none specifically related to patients with neurologic diseases). Reasons for this state of affairs include that EC was implemented widely before appropriate outcome measures were contemplated and that such measures are complex (Pfafflin et al., 2009). For example, “hard” outcomes such as morbidity and mortality are easy to measure, but their relevance to EC is unclear (ASBH, 2009). Take, for example, two critically ill patients who are identical in every way (e.g., age, sex, disease), except for their wishes regarding the use of lifesustaining treatments: one patient desires such treatments under all circumstances, whereas the other wishes to avoid them. Ethical outcomes for both would be to adhere to their healthcare values and goals according to established medical standards. As such, ethical outcomes for both might have different effects on outcomes such as length of hospital stay and longevity. “Soft” outcomes, therefore, are likely better suited for assessing the value of EC. ASBH has identified four such outcomes: (1) ethicality; (2) satisfaction; (3) resolution of conflict; and (4) education (Fox and Arnold, 1996). Another outcome that has gained attention is cost containment or reduction. In this section, empirical studies that have assessed the value of EC using these outcomes are reviewed.
Ethicality Ethicality is “the degree to which clinical practices conform to established ethical standards (e.g., informed consent for medical interventions, assessing patients’ decision-making capacity, withdrawing life-sustaining interventions from a dying patient, and respecting patients’ advance directives)” (ASBH, 2011, p. 39). Assessing this outcome includes determining whether ethics consultants’ recommendations are consistent with established ethical standards and whether the recommendations are followed and the resulting clinical actions are consistent with these standards. Although ethicality has been studied in other arenas (e.g., whether patients’ written wishes are carried out; conformance to informed consent standards; surrogate– patient concordance on wishes), little is known about the effects of EC on clinicians’ actions and whether those actions adhere to ethical standards (Fox and Arnold, 1996). As a result, proxy measures of ethicality have been used, such as whether ethics consultants’ recommendations are
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consistent with established ethical standards (ASBH, 2011, pp. 39–40). For example, in one study involving hypothetical vignettes, ethics consultants’ recommendations regarding life-sustaining treatments in patients in a persistent vegetative state were assessed (and were varied) (Fox and Stocking, 1993). Notably, a leader in this arena has been the U.S. Department of Veterans Affairs (VA) National Center for Health Care Ethics, which has shown that, in nearly 90% of instances, ethics consultants’ recommendations are followed (ASBH, 2011, p. 41). Nevertheless, further research is needed to determine the associations between EC and ethicality. Means by which these associations can be studied include chart reviews (e.g., reviews of ethics consultants’ recommendations, whether these recommendations were followed, and other outcomes), questionnaires and interviews of involved parties (i.e., patients, providers, and ethics consultants), and so on (Fox and Arnold, 1996).
Satisfaction Satisfaction, the outcome that has been used most often to assess the value of EC, is “a subjective assessment of participants’ experiences with the EC” (ASBH, 2011, p. 40). Multiple studies have assessed satisfaction among patients, patients’ loved ones, providers, and ethics consultants (Banerjee and Kuschner, 2007; Pfafflin et al., 2009). Overall, these studies have shown that a majority of individuals involved in or affected by EC are satisfied. For example, several studies have shown not only high satisfaction among clinicians, but also that clinicians were predisposed to using EC again (LaPuma et al., 1992; Schneiderman et al., 2003; Duval et al., 2004). The aforementioned VA program has had similar results (ASBH, 2011, p. 40). Nevertheless, using satisfaction as a measure of the value of EC has limitations. Satisfaction with EC – as a general concept – has been used, but not satisfaction with specifics such as ethics consultants’ knowledge and skills, methods, and recommendations. Second, satisfaction alone is insufficient for evaluating EC; doing so might incentivize ethics consultants “to make recommendations that maximize the contentment of one (or both) parties” (Craig and May, 2006). For example, ethics consultants’ recommendations aligned with established ethical standards may result in low clinician or patient satisfaction. Dissatisfied individuals nonetheless may regard the service as helpful (Pfafflin et al., 2009). Overall, satisfaction as an outcome measure should be contextualized with other relevant outcomes of EC.
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Conflict resolution Conflict resolution is “the degree to which parties involved in an EC featuring a conflict in values or opinions perceive that the conflict has been appropriately resolved” (ASBH, 2011, p. 39). Assistance with conflict resolution is a common reason for EC (Orr, 2001). Several studies have explored conflict resolution as an outcome of EC. For example, a study of EC in the ICU showed that most patients/surrogates and clinicians thought the service was helpful in resolving conflict (Schneiderman et al., 2003). The aforementioned VA program has had similar results (ASBH, 2011, pp. 40–41). Conflict resolution, however, is not the only, or the most important, goal of EC (Fox and Arnold, 1996). As an outcome, it has limitations that are similar to satisfaction. Conflict may remain following an EC even though the recommendations and resultant clinical actions are consistent with ethical standards. For example, an incapacitated patient’s loved ones may disagree with an ethics consultant’s recommendation that it is permissible to carry out the patient’s wishes to withdraw life-sustaining treatment. Or, a clinician may disagree with an ethics consultant’s recommendation that it’s not permissible to administer blood products to a patient who refuses them for religious reasons (Orr, 2001). In such scenarios, conflict may persist despite adherence with ethical standards. Conflict resolution, like satisfaction, should be contextualized with other relevant outcomes of EC.
Education Although prior studies have assessed the effects of ethics education on gaining new knowledge, skills, and attitudes regarding clinical ethics, no study has directly measured education (i.e., change in knowledge, skills, and attitudes of clinical ethics among patients, surrogates, and clinicians) as an outcome of EC (Fox and Arnold, 1996). Several studies, however, have used proxy measures of education. In one study, clinicians found EC “to be important in. . .educating the team” (Orr and Moon, 1993). In a national survey, a majority of U.S. internists “reported that they learned something from the consultation that might prove helpful in the future” (Duval et al., 2004). In another study, clinicians and surrogates found EC “beneficial in helping to educate all parties” (Cohn et al., 2007). A study of EC in the ICU showed that most patients/surrogates and clinicians thought the service was helpful in educating (Schneiderman et al., 2003). Education can also involve identification of issues requiring institutional or health system intervention. EC is uniquely positioned to identify these issues. For example, at our institution, EC identified emerging
clinical issues such as withdrawal of cardiovascular implantable electronic device (e.g., pacemaker and implantable cardioverter-defibrillator) support from patients who no longer wanted device therapies (Mueller et al., 2003) and the ethical aspects of altruistic living organ donation by group associations (Mueller et al., 2008) as issues that required institutional attention, review, and education. EC ultimately resulted in proactive palliative medicine consultation for recipients of ventricular assist devices as “destination therapy” at our institution (Swetz et al., 2011). Furthermore, EC can guide ethics education. For example, a given institution may encounter specific ethical dilemmas more than other dilemmas. EC can be used to identify these common dilemmas and create ethics curricula for affected patients, clinicians, and others (Mueller and Koenig, 2006).
Cost containment or reduction EC as a means of cost containment or reduction – and therefore a measure of its value – has received attention in recent years. As the logic goes, EC may result in reduced utilization of unwanted (by patients) or nonbeneficial treatments (as perceived by clinicians) and, therefore, save money. Several studies have examined the effects of EC on utilization of life-sustaining treatments and length of stay in the ICU – outcomes that are associated with increased costs. For example, in a prospective controlled study, EC resulted in significantly reduced ICU days and more frequent decisions to forgo life-sustaining treatments (Dowdy et al., 1998). A randomized controlled trial showed that, compared with usual care, EC had no effect on mortality, but was associated with significantly reduced hospital and ICU days and use of life-sustaining treatments (Schneiderman et al., 2003). Using cost to assess the value of EC, however, has important limitations. First, other factors, such as patients’ quality of life and healthcare-related values and goals, may take priority over cost (Emanuel and Emanuel, 1994). For example, providing palliative care to a dying patient can be costly (e.g., intravenous narcotic analgesia), but is nevertheless medically and ethically indicated. Providing a time-limited trial of costly life-sustaining treatment to a patient who wants and may benefit from it is ethically preferable to unilaterally withholding such treatment. Another limitation of using cost to assess the value of EC is that ethics consultants would likely, as a result, be biased toward withholding and withdrawing healthcare resources regardless of patients’ values and goals – an obvious conflict.
ETHICS COMMITTEES AND CONSULTANTS
Measuring value in EC? Empirical evidence suggests that ethicality, satisfaction, conflict resolution, education, and cost containment or reduction are outcome measures that can be used to assess the value of EC. Each of these measures, however, has limitations and no measure alone is sufficient for assessing the value of EC. Instead, multiple measures should be used.
CONCLUSION EC and ethics committees are valuable assets for clinicians, patients, families, and institutions to deal with the increasingly complex environment and technologies of healthcare, and help achieve the best care for patients possible. As with other fields of medicine, clinical ethics has its own body of specialized and multidisciplinary knowledge, and ethics consultants must rigorously and continuously train to achieve and maintain competency. Medical institutions should commit necessary resources in protected time to allow ethics consultants and committee members to perform their unique jobs with excellence. We believe that that investment results in a win-win situation for patients, families, medical professionals, and medical institutions.
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