Policies for Mandatory Ethics Consultations at U.S. Academic Teaching Hospitals: A Multisite Survey Study.

OBJECTIVES: To determine the number of top-ranked U.S. academic institutions that require ethics consultation for specific adult clinical circumstances (e.g., family requests for potentially inappropriate treatment) and to detail those circumstances and the specific clinical scenarios for which consultations are mandated. DESIGN: Cross-sectional survey study, conducted online or over the phone between July 2016 and October 2017. SETTING: We identified the top 50 research medical schools through the 2016 U.S. News and World Report rankings. The primary teaching hospital for each medical school was included. SUBJECTS: The chair/director of each hospital's adult clinical ethics committee, or a suitable alternate representative familiar with ethics consultation services, was identified for study recruitment. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: A representative from the adult ethics consultation service at each of the 50 target hospitals was identified. Thirty-six of 50 sites (72%) consented to participate in the study, and 18 (50%) reported having at least one current mandatory consultation policy. Of the 17 sites that completed the survey and listed their triggers for mandatory ethics consultations, 20 trigger scenarios were provided, with three sites listing two distinct clinical situations. The majority of these triggers addressed family requests for potentially inappropriate treatment (9/20, 45%) or medical decision-making for unrepresented patients lacking decision-making capacity (7/20, 35%). Other triggers included organ donation after circulatory death, initiation of extracorporeal membrane oxygenation, denial of valve replacement in patients with subacute bacterial endocarditis, and posthumous donation of sperm. Twelve (67%) of the 18 sites with mandatory policies reported that their protocol(s) was formally documented in writing. CONCLUSIONS: Among top-ranked academic medical centers, the existence and content of official policies regarding situations that mandate ethics consultations are variable. This finding suggests that, despite recent critical care consensus guidelines recommending institutional review as standard practice in particular scenarios, formal adoption of such policies has yet to become widespread and uniform.

Ethics Consultation Quality Assessment Tool: A Novel Method for Assessing the Quality of Ethics Case Consultations Based on Written Records.

Although ethics consultation is offered as a clinical service in most hospitals in the United States, few valid and practical tools are available to evaluate, ensure, and improve ethics consultation quality. The quality of ethics consultation is important because poor quality ethics consultation can result in ethically inappropriate outcomes for patients, other stakeholders, or the health care system. To promote accountability for the quality of ethics consultation, we developed the Ethics Consultation Quality Assessment Tool (ECQAT). ECQAT enables raters to assess the quality of ethics consultations based on the written record. Through rigorous development and preliminary testing, we identified key elements of a quality ethics consultation (ethics question, consultation-specific information, ethical analysis, and conclusions and/or recommendations), established scoring criteria, developed training guidelines, and designed a holistic assessment process. This article describes the development of the ECQAT, the resulting product, and recommended future testing and potential uses for the tool.

A Pilot Evaluation of Portfolios for Quality Attestation of Clinical Ethics Consultants.

Although clinical ethics consultation is a high-stakes endeavor with an increasing prominence in health care systems, progress in developing standards for quality is challenging. In this article, we describe the results of a pilot project utilizing portfolios as an evaluation tool. We found that this approach is feasible and resulted in a reasonably wide distribution of scores among the 23 submitted portfolios that we evaluated. We discuss limitations and implications of these results, and suggest that this is a significant step on the pathway to an eventual certification process for clinical ethics consultants.

"A Shell of My Former Self": Using Figurative Language to Promote Communication About Patient Suffering.

While the relief of suffering is an important goal of medicine, suffering is often missed or ignored in clinical practice. We believe that this occurs for two reasons. First, clinicians often approach suffering by focusing on the causes of suffering rather than the experience of suffering. Second, the subjective nature of suffering makes it difficult to discuss. To address these gaps, we read 52 relevant works of literature and performed qualitative analysis to categorize figurative language into themes of psychological (i.e., non-physical) suffering. We identified 254 excerpts of figurative language characterizing psychological suffering. Among these excerpts, 13 salient themes recurred, including: brokenness, diminishment, disorientation, drowning, emptiness, imprisonment, battle, darkness, isolation, invisibility, lifelessness, punishment, and torture. The development of a shared language of suffering can foster a therapeutic patient-clinician relationship and improve clinicians' ability to recognize and address a patient's experience of suffering.

Signature Informed Consent for Long-Term Opioid Therapy in Patients With Cancer: Perspectives of Patients and Providers.

CONTEXT: Signature informed consent (SIC) is a part of a Veterans Health Administration ethics initiative for patient education and shared decision making with long-term opioid therapy (LTOT). Historically, patients with cancer-related pain receiving LTOT are exempt from this process. OBJECTIVES: Our objective is to understand patients' and providers' perspectives on using SIC for LTOT in patients with cancer-related pain. METHODS: Semistructured interviews with 20 opioid prescribers and 20 patients who were prescribed opioids at two large academically affiliated Veterans Health Administration Medical Centers. We used a combination of deductive and inductive approaches in content analysis to produce emergent themes. RESULTS: Potential advantages of SIC are that it can clarify and help patients comprehend LTOT risks and benefits, provide clear upfront boundaries and expectations, and involve the patient in shared decision making. Potential disadvantages of SIC include time delay to treatment, discouragement from recommended opioid use, and impaired trust in the patient-provider relationship. Providers and patients have misconceptions about the definition of SIC. Providers and patients question if SIC for LTOT is really informed consent. Providers and patients advocate for strategies to improve comprehension of SIC content. Providers had divergent perspectives on exemptions from SIC. Oncologists want SIC for LTOT to be tailored for patients with cancer. CONCLUSION: Provider and patient interviews highlight various aspects about the advantages and disadvantages of requiring SIC for LTOT in cancer-related pain. Tailoring SIC for LTOT to be specific to cancer-related concerns and to have an appropriate literacy level are important considerations.

Ethical challenges within Veterans Administration healthcare facilities: perspectives of managers, clinicians, patients, and ethics committee chairpersons.

To promote ethical practices, healthcare managers must understand the ethical challenges encountered by key stakeholders. To characterize ethical challenges in Veterans Administration (VA) facilities from the perspectives of managers, clinicians, patients, and ethics consultants. We conducted focus groups with patients (n = 32) and managers (n = 38); semi-structured interviews with managers (n = 31), clinicians (n = 55), and ethics committee chairpersons (n = 21). Data were analyzed using content analysis. Managers reported that the greatest ethical challenge was fairly distributing resources across programs and services, whereas clinicians identified the effect of resource constraints on patient care. Ethics committee chairpersons identified end-of-life care as the greatest ethical challenge, whereas patients identified obtaining fair, respectful, and caring treatment. Perspectives on ethical challenges varied depending on the respondent's role. Understanding these differences can help managers take practical steps to address these challenges. Further, ethics committees seemingly, are not addressing the range of ethical challenges within their institutions.

Ethics consultation in United States hospitals: a national survey.

CONTEXT: Although ethics consultation is commonplace in United States (U.S.) hospitals, descriptive data about this health service are lacking. OBJECTIVE: To describe the prevalence, practitioners, and processes of ethics consultation in U.S. hospitals. DESIGN: A 56-item phone or questionnaire survey of the "best informant" within each hospital. PARTICIPANTS: Random sample of 600 U.S. general hospitals, stratified by bed size. RESULTS: The response rate was 87.4%. Ethics consultation services (ECSs) were found in 81% of all general hospitals in the U.S., and in 100% of hospitals with more than 400 beds. The median number of consults performed by ECSs in the year prior to survey was 3. Most individuals performing ethics consultation were physicians (34%), nurses (31%), social workers (11%), or chaplains (10%). Only 41% had formal supervised training in ethics consultation. Consultation practices varied widely both within and between ECSs. For example, 65% of ECSs always made recommendations, whereas 6% never did. These findings highlight a need to clarify standards for ethics consultation practices.

Improvements in advance care planning in the Veterans Affairs System: results of a multifaceted intervention.

BACKGROUND: Advance care planning (ACP) aims to guide health care in the event of decisional incapacity. Interventions to promote ACP have had limited effectiveness. We conducted an educational and motivational intervention in Department of Veterans Affairs outpatient clinics to increase ACP use and proxy and health care provider understanding of patients' preferences and values. METHODS: We recruited 23 providers and up to 14 of each of their patients; the patients were randomized to the control or intervention group. Eligibility criteria included a preexisting relationship with the provider, age 55 years or older, chronic health condition(s), and no recorded advance directive. The intervention group (n = 119) received an ACP workbook, motivational counseling by social workers, and cues to providers to discuss ACP. The control group (n = 129) received an advance directive booklet. RESULTS: The intervention patients reported more ACP discussions with their providers (64% vs 38%; P<.001). Living wills were filed in the medical record twice as often in the intervention group (48% vs 23%; P<.001). Provider-patient dyads in the intervention group had higher agreement scores than the control group for treatment preferences, values, and personal beliefs (58% vs 48%, 57% vs 46%, and 61% vs 47%, respectively; P<.01 for all comparisons). The agreement scores for the proxy-patient dyads did not differ between groups for treatment preferences and values, but were higher in the intervention than the control group for personal beliefs (67% vs 56%). CONCLUSION: This intervention demonstrates mixed results and highlights the ongoing challenges of helping health care providers and potential proxy decision makers represent patient preferences and values.

How do surrogate decision makers describe hospice? Does it matter?

We interviewed 71 surrogate decision makers of older, chronically ill veterans to explore their knowledge of hospice and their role in helping loved ones access hospice services. We asked them to describe hospice and any previous hospice experiences. Of the group, 24 percent with hospice experience and 14 percent without hospice experience correctly described three key aspects of hospice: who hospice cares for, where the care is provided, and the goal of the care. Additionally, we found evidence that surrogates who correctly described the three key aspects of hospice were inclined to pursue hospice care for loved ones in the future, and surrogates who provided less complete descriptions of hospice might not access it. Since surrogates often help dying patients access care, incomplete knowledge of hospice may be an important barrier to hospice services. We advocate that clinicians discuss the three key aspects of hospice during routine advance care planning sessions with patients and their future surrogate decision makers.

Integrating clinical and organizational ethics. A systems perspective can provide an antidote to the "silo" problem in clinical ethics consultations.

Traditionally, ethics consultations are conducted one case at a time. This typical approach addresses immediate needs pertinent to the case, but seldom looks toward preventing recurrences. The underlying problem is that clinical ethics and organizational ethics are still often regarded as separate areas with separate concerns. When it comes to ethics in health care, nothing helps clarify ideas like a case study. The autopsy case mentioned in this article demonstrates that clinical cases coming before an ethics committee are impeded in and influenced by a larger organizational context. The authors say that a "systems-oriented" perspective toward ethics consultation would help committee members view cases through the widest possible lens. This would enable committees to look at the larger system and thereby propose strategies for anticipated repeat problems.

Motivations for physician-assisted suicide.

OBJECTIVE: To obtain detailed narrative accounts of patients' motivations for pursuing physician-assisted suicide (PAS). DESIGN: Longitudinal case studies. PARTICIPANTS: Sixty individuals discussed 35 cases. Participants were recruited through advocacy organizations that counsel individuals interested in PAS, as well as hospices and grief counselors. SETTING: Participants' homes. MEASUREMENTS AND RESULTS: We conducted a content analysis of 159 semistructured interviews with patients and their family members, and family members of deceased patients, to characterize the issues associated with pursuit of PAS. Most patients deliberated about PAS over considerable lengths of time with repeated assessments of the benefits and burdens of their current experience. Most patients were motivated to engage in PAS due to illness-related experiences (e.g., fatigue, functional losses), a loss of their sense of self, and fears about the future. None of the patients were acutely depressed when planning PAS. CONCLUSIONS: Patients in this study engaged in PAS after a deliberative and thoughtful process. These motivating issues point to the importance of a broad approach in responding to a patient's request for PAS. The factors that motivate PAS can serve as an outline of issues to explore with patients about the far-reaching effects of illness, including the quality of the dying experience. The factors also identify challenges for quality palliative care: assessing patients holistically, conducting repeated assessments of patients' concerns over time, and tailoring care accordingly.

Why now? Timing and circumstances of hastened deaths.

We interviewed 35 families to understand the timing and circumstances of hastened deaths. We estimated life expectancy for the 26 patients who hastened their deaths and used content analysis to identify patterns in their decisions. On average, patients had lived with their illness for 2.5 years and had actively planned their deaths for 3 months. Those with less than a week to live (n = 10) were 'dying and done,' having experienced a final functional loss that signaled the end. Those with <1 month (n = 8) were 'dying, but not fast enough.' Those with 1-6 months (n = 5) saw a 'looming crisis' on their horizon that would prohibit following through with their plans. The 3 patients with >6 months were 'not recognized by others as dying, but suffering just the same.' Clinicians should regularly assess where patients perceive they are in the dying process and ask about their comfort with the pace of dying to identify opportunities for intervention.

Good and bad dying from the perspective of terminally ill men.

BACKGROUND: Understanding the range of patients' views about good and bad deaths may be useful to clinicians caring for terminally ill patients. Our current understanding of good and bad deaths, however, comes primarily from input from families and clinicians. This study aimed to learn how terminally ill men conceptualize good and bad deaths. METHODS: We conducted semistructured interviews with 26 men identified as having terminal heart disease or cancer. Participants described good and bad deaths in a section of open-ended questions. Participants also answered closed-ended questions about specific end-of-life scenarios. The open-ended questions were tape recorded, transcribed, and analyzed using grounded theory methods. The closed-ended questions were analyzed using descriptive statistics. RESULTS: We found heterogeneity in responses to questions about good deaths, bad deaths, and preferred dying experiences. Participants voiced multiple reasons for why dying in one's sleep led to a good death and why prolonged dying or suffering led to a bad death. Participants did not hold uniform views about the presence of others at the very end of life or preferred location of dying. CONCLUSIONS: In discussing the end of life with terminally ill patients, clinicians may want to identify not only their patients' views of good and bad deaths but also how the identified attributes contribute to a good or bad death. The discussion can then focus on what might interfere with patients' attainment of their preferred dying experience and what may be available to help them achieve a death that is most consistent with their wishes.

Clinician-patient interactions about requests for physician-assisted suicide: a patient and family view.

BACKGROUND: Responding effectively to a patient request for physician-assisted suicide (PAS) is an important clinical skill that involves careful evaluation. Clinician responses to PAS requests, however, have only been described using data obtained from clinicians. OBJECTIVE: To describe qualities of clinician-patient interactions about requests for PAS that were valued by patients and their family members. PARTICIPANTS AND METHODS: Intensive qualitative case study involving multiple longitudinal interviews conducted prospectively with patients pursuing PAS and with their family members and retrospectively with family members of deceased patients who seriously pursued PAS. The study setting was community based. Participants were recruited through patient advocacy organizations, hospices, and grief counselors. A total of 35 cases were studied: 12 were prospective and 23 were retrospective. Study procedures involved semistructured interviews that were audiotaped, transcribed, reviewed, and analyzed by a multidisciplinary research team. RESULTS: Three themes were identified that describe qualities of clinician-patient interactions that were valued by patients and family members: (1) openness to discussions about PAS; (2) clinician expertise in dealing with the dying process; and (3) maintenance of a therapeutic clinician-patient relationship, even when clinician and patient disagree about PAS. CONCLUSIONS: These patient and family accounts reveal missed opportunities for clinicians to engage in therapeutic relationships, including discussions about PAS, dying, and end-of-life care. Clinicians responding to patients requesting PAS need communication skills enabling them to discuss PAS and dying openly, as well as expertise in setting reasonable expectations, individualizing pain control, and providing accurate information about the lethal potential of medications.

Do-not-resuscitate orders and medical futility.

This report addresses the difficult situation in which a patient or surrogate decision maker wishes cardiopulmonary resuscitation to be attempted even though the physician believes that resuscitation efforts would be futile. It also reviews current controversies surrounding the subject of do-not-resuscitate (DNR) orders and medical futility, discusses the complex medical, legal, and ethical considerations involved, and then offers recommendations as a guide to clinicians and ethics committees in resolving these difficult issues. Conflicts over DNR orders and medical futility should not be resolved through a policy that attempts to define futility in the abstract, but rather through a predefined and fair process that addresses specific cases and includes multiple safeguards. As it examines these issues, the report focuses on the Veterans Health Administration (VHA). Current national VHA policy constrains physicians from entering a DNR order over the objection of a patient or surrogate even if the physician believes cardiopulmonary resuscitation to be futile. The VHA National Ethics Committee recommends that VHA policy be changed to reflect the opinions expressed in this report. The National Ethics Committee, which is composed of VHA clinicians and leaders, as well as veterans advocates, creates reports that analyze ethical issues affecting the health and care of veterans treated in the VHA, the largest integrated health care system in the United States. This report does not change or modify VHA policy.

Quality of life while dying: a qualitative study of terminally ill older men.

OBJECTIVES: To characterize the experience of quality of life while dying from the perspective of terminally ill men. DESIGN: Descriptive study involving semistructured interviews. SETTING: Patients attending clinics at two university-affiliated medical centers were interviewed in a private conference room or in their homes. PARTICIPANTS: Twenty-six men identified by their physicians as having terminal heart disease or cancer. Eligible participants acknowledged that they had serious illness. MEASUREMENTS: The interview contained open-ended questions such as: "What are the most important things in your life right now?" The interview also contained closed-ended questions about symptom intensity, presence of depressed mood, and other items related to overall quality of life. The open-ended questions were tape-recorded, transcribed, and analyzed using grounded theory methods. The closed-ended questions were analyzed using descriptive statistics. RESULTS: Participants believed that death was near. Participants saw engaging in hobbies and other enjoyable activities as an alternative to moving into the final stage of illness, in which they saw themselves as actively dying. They admitted to occasionally ignoring prescribed diets; these actions improved their overall quality of life but worsened symptoms. New symptoms brought concerns about progression to active dying. They anticipated what their dying would be like and how it would affect others. Participants believed that their actions in the present could improve the quality of their dying and lessen the burden of their deaths on others. Many participants therefore were preparing for death by engaging in such tasks as putting their finances in order and planning their funerals, to relieve anticipated burden on loved ones. CONCLUSION: To help terminally ill patients plan for the end of life, clinicians are encouraged to become familiar with their patients' experiences of living with terminal illness, to identify each patient's unique priorities, and to incorporate that information into care plans aimed at maximizing quality of life at the end of life.

Good deaths, bad deaths, and preferences for the end of life: a qualitative study of geriatric outpatients.

OBJECTIVES: Patient involvement in decision-making has been advocated to improve the quality of life at the end of life. Although the size of the oldest segment of the population is growing, with greater numbers of older adults facing the end of life, little is known about their preferences for the end of life. This study aimed to explore the attitudes of older adults with medical illness about the end of life, and to investigate whether current values could be extended to end-of-life preferences. DESIGN: Descriptive study with interviews using open- and closed-ended questions. SETTING: Patients attending two university-affiliated geriatric clinics were interviewed in a private conference room near the clinic they attended or in their homes. PARTICIPANTS: Sixteen older men and women identified by their physicians as having nonterminal heart disease or cancer. MEASUREMENTS: The interview contained open-ended questions such as: "What are the most important things in your life right now?" and "What would you consider a good/bad death?" The interview also contained closed-ended questions about symptoms, quality of life, and health status. Additional questions elicited preferences for the end of life, such as location of death and the presence of others. The open-ended questions were tape-recorded, transcribed, and analyzed using qualitative methods. The closed-ended questions were analyzed using descriptive statistics. RESULTS: Patients with heart disease and cancer provided similar responses. Participants' views about good deaths, bad deaths, and end-of-life scenarios were heterogeneous. Each participant voiced a unique combination of themes in describing good and bad deaths. Because each participant described a multifaceted view of a good death, for instance, no theme was mentioned by even half of the participants. Participants provided differing explanations for why given themes contributed to good deaths. Currently valued aspects of life were not easily translated into end-of-life preferences. For example, although the majority of participants identified their family as being important, many gave reasons why they did not want their family members present when they died. CONCLUSIONS: Because of the heterogeneity of views and the difficulty in inferring end-of-life preferences from current values, older adults should be asked not only questions about general values, but also specific questions about their end-of-life choices and the reasons for these choices. A thorough understanding of an individual's end-of-life preferences may help health professionals working with older adults develop patient-centered care plans for the end of life.