Medical, ethical, and legal aspects of end-of-life dilemmas in the intensive care unit.

Physicians in the intensive care unit face a myriad of ethical dilemmas involving end-of-life care, yet they receive only minimal training about their jurisprudential obligations, and misconceptions about legal responsibilities abound. In particular, significant uncertainty exists among critical care physicians as to ethical and legal obligations for terminally ill patients. This paper presents 3 hypothetical cases to elucidate the medical, ethical, and legal considerations in common end-of-life situations encountered in the intensive care unit.

Caregivers of Patients With Left Ventricular Assist Devices: Possible Impacts on Patients' Mortality and Interagency Registry for Mechanically Assisted Circulatory Support-Defined Morbidity Events.

BACKGROUND: How caregivers contribute to positive or negative outcomes for left ventricular assist device (LVAD) patients remains unclear. Our primary study objectives were to (1) identify caregiver support attributes through a retrospective chart review of social workers' psychosocial assessments for LVAD patients and (2) determine how these attributes associated with patients' post-LVAD placement mortality and Interagency Registry for Mechanically Assisted Circulatory Support-defined morbidity events. METHODS AND RESULTS: We retrospectively reviewed and recorded social workers' clinical assessments of adult patients implanted with durable continuous-flow LVADs as bridge to transplant, destination therapy, or bridge to decision from January 2010 to December 2014. Associations between caregiver characteristics and patient mortality and morbidity events were analyzed using Kaplan-Meier curves and Cox proportional hazards regression. Patient follow-up time was calculated as the time from hospital discharge until the earliest among death with LVAD, transplant, or the last day of the study (December 31, 2015). Patients were censored for death with LVAD at the time of transplant or the last day of the study. A total of 96 LVAD recipients were included in this study. Having a caregiver who understands the severity of the illness and options available to the patient (as determined and documented by the social worker; P=0.01), a caregiver who has identified a backup plan (P=0.02), and a caregiver who is able to provide logistical support (P=0.04) significantly mitigated risk of death. The risk of death for an LVAD patient was also significantly lower among those who have at least 1 adult child who lives within 50 miles (P=0.03) and those who have an extended family who can care for the patient (P=0.03). The risk of death was 3.1× more likely among patients who live alone compared with those who do not live alone (P=0.04). No caregiver characteristics were significantly associated with morbidity. CONCLUSIONS: This exploratory, hypothesis-generating study suggests that mortality after LVAD placement is impacted by caregiver understanding of patient severity of illness and caregiver presence. This study provides initial evidence to support further work in understanding the associations between caregivers and LVAD patients, as well as interventions that may improve patient outcomes. CLINICAL TRIAL REGISTRATION: URL: http://www.clinicaltrials.gov. Unique identifier: NCT02248974.

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.

Transplant Ethics: Let's Begin the Conversation Anew : A Critical Look at One Institute's Experience with Transplant Related Ethical Issues.

Standardizing consultation processes is increasingly important as clinical ethics consultation (CEC) becomes more utilized in and vital to medical practice. Solid organ transplant represents a relatively nascent field replete with complex ethical issues that, while explored, have not been systematically classified. In this paper, we offer a proposed taxonomy that divides issues of resource allocation from viable solutions to the issue of organ shortage in transplant and then further distinguishes between policy and bedside level issues. We then identify all transplant related ethics consults performed at the Cleveland Clinic (CC) between 2008 and 2013 in order to identify how consultants conceptually framed their consultations by the domains they ascribe to the case. We code the CC domains to those in the Core Competencies for Healthcare Consultation Ethics in order to initiate a broader conversation regarding best practices in these highly complex cases. A discussion of the ethical issues underlying living donor and recipient related consults ensues. Finally, we suggest that the ethical domains prescribed in the Core Competencies provide a strong starting ground for a common intra-disciplinary language in the realm of formal CEC.

Reasons Why Eligible Candidates Decline Left Ventricular Assist Device Placement.

BACKGROUND: A greater understanding of how beliefs and perceptions inform LVAD placement refusals can help ensure that standards for informed decision making are met. We report on the factors that influence refusal and what accounts for changes in decliners' decision-making process when, and if, that occurs. METHOD AND RESULTS: We identified candidates (8 bridge to transplant; 6 destination therapy, 7 without designation) who declined LVAD placement (n = 21), 11 of whom were identified prospectively from February 2014 to March 2015, and 10 of whom were identified retrospectively with the use of our program database. Of these 21 decliners, 11 candidates persistently declined LVAD placement, with a median time of 175 days elapsing between time of LVAD offer and March 4, 2015. Ten candidates declined for an average of 224 days before agreeing to LVAD placement. From March 2014 to March 2015, we conducted structured interviews with LVAD decliners. Interviews were audio recorded, transcribed verbatim, and analyzed quantitatively with the use of Atlas.ti. The findings reflect that refusal can evolve over time. Decliners report that their initial refusals were made reflexively, but the 10 decliners who ultimately opted for LVAD placement changed their decisions as symptoms worsened. Decliners have concerns about the impacts of LVAD treatment on mobility, and they distrust LVAD technology. Some decliners believe LVAD placement would affect their ability to receive a transplant. Finally, decliners believe that they are not sick enough for LVAD placement when they are stabilized with medical management. CONCLUSIONS: Decliners' perspectives are integral for improving informed consent and refusal processes. Our analysis revealed decliners' decision-making processes and factors influencing their decisions. We provide several clinically based practical recommendations based on our findings.

"Systematizing" ethics consultation services.

While valuable work has been done addressing clinical ethics within established healthcare systems, we anticipate that the projected growth in acquisitions of community hospitals and facilities by large tertiary hospitals will impact the field of clinical ethics and the day-to-day responsibilities of clinical ethicists in ways that have yet to be explored. Toward the goal of providing clinical ethicists guidance on a range of issues that they may encounter in the systematization process, we discuss key considerations and potential challenges in implementing system-wide ethics consultation services. Specifically, we identify four models for organizing, developing, and enhancing ethics consultation activities within a system created through acquisitions: (1) train-the-trainer, (2) local capacity-building, (3) circuit-riding, and (4) consolidated accountability. We note each model's benefits and challenges. To our knowledge, this is the first paper to consider the broader landscape of issues affected by consolidation. We anticipate that clinical ethicists, volunteer consultants, and hospital administrators will benefit from our recommendations.

Developing and testing a checklist to enhance quality in clinical ethics consultation.

Checklists have been used to improve quality in many industries, including healthcare. The use of checklists, however, has not been extensively evaluated in clinical ethics consultation. This article seeks to fill this gap by exploring the efficacy of using a checklist in ethics consultation, as tested by an empirical investigation of the use of the checklist at a large academic medical system (Cleveland Clinic). The specific aims of this project are as follows: (1) to improve the quality of ethics consultations by providing reminders to ethics consultants about process steps that are important for most patient-centered ethics consultations, (2) to create consistency in the ethics consultation process across the medical system, and (3) to establish an effective educational tool for trainers and trainees in clinical ethics consultation. The checklist was developed after a thorough literature review and an iterative process of revising and testing by a group of experienced ethics consultants. To pilot test the checklist, it was distributed to 46 ethics consultants. After a six-month pilot period in which ethics professionals used the checklist during their clinical activities, a survey was distributed to all of those who used the checklist. The 10-item survey examined consultants' perceptions regarding the three aims listed above. Of the 25 survey respondents, 11 self-reported as experts in ethics consultation, nine perceived themselves to have mid-level expertise, and five self-reported as novices. The majority (68 percent) of all respondents, regardless of expertise, believed that the checklist could be a "helpful" or "very helpful" tool in the consultation process generally. Novices were more likely than experts to believe that the checklist would be useful in conducting consultations. The limitations of this study include: reduced generalizability given that this project was conducted at one medical system, utilized a small sample size, and used self-reported quality outcome measures. Despite these limitations, to the authors' knowledge this is the first investigation of the use of a checklist systematically to improve quality in ethics consultation. Importantly, our findings shed light on ways this checklist can be used to improve ethics consultation, including its use as an educational tool. The authors hope to test the checklist with consultants in other healthcare systems to explore its usefulness in different healthcare environments.

Family members' requests to extend physiologic support after declaration of brain death: a case series analysis and proposed guidelines for clinical management.

We describe and analyze 13 cases handled by our ethics consultation service (ECS) in which families requested continuation of physiological support for loved ones after death by neurological criteria (DNC) had been declared. These ethics consultations took place between 2005 and 2013. Patients' ages ranged from 14 to 85. Continued mechanical ventilation was the focal intervention sought by all families. The ECS's advice and recommendations generally promoted "reasonable accommodation" of the requests, balancing compassion for grieving families with other ethical and moral concerns such as stewardship of resources, professional integrity, and moral distress. In cases we characterized as finite-goal accommodation, a "reasonable accommodation" strategy proved effective in balancing stakeholders' interests and goals, enabling steady progress toward resolution. When a family objected outright to a declaration of DNC and asked for an indefinite accommodation, the "reasonable accommodation" approach offered clinicians little practical direction, and resolution required definitive action by either the family or the clinical team. Based on our analysis and reflections on these 13 cases, we propose ethically justified and practical guidelines to assist healthcare professionals, administrators, and ECSs faced with similar cases.

Desperately seeking a surrogate - for a patient lacking decision-making capacity.

Our hospital's policy and procedures for "Patients Without Surrogates" provides for gradated safeguards for managing patients' treatment and care when they lack decision-making capacity, have no advance directives, and no surrogate decision makers are available. The safeguards increase as clinical decisions become more significant and have greater consequences for the patient. The policy also directs social workers to engage in "rigorous efforts" to search for surrogates who can potentially provide substituted judgments for such patients. We describe and illustrate the policy, procedures, and kinds of expected rigorous efforts through our narration of an actual but disguised case for which we provided clinical ethics guidance and social work expertise. Our experience with and reflection on this case resulted in four recommendations we make for health care facilities and organizations that aim to provide quality care for their own patients without surrogates.

Practical guidance for charting ethics consultations.

It is generally accepted that appropriate documentation of activities and recommendations of ethics consultants in patients' medical records is critical. Despite this acceptance, the bioethics literature is largely devoid of guidance on key elements of an ethics chart note, the degree of specificity that it should contain, and its stylistic tenor. We aim to provide guidance for a variety of persons engaged in clinical ethics consultation: new and seasoned ethics committee members who are new to ethics consultation, students and trainees in clinical ethics, and those who have significant experience with ethics consultation so that they can reflect on their practice. Toward the goal of promoting quality charting practices in ethics consultations, we propose recommendations on a broad array of questions concerning clinical ethics consultation chart notes, including whether and when to write a chart note, and practical considerations for the tenor, purpose, and content of a chart note. Our broader aim is to promote discussion about good charting practices in clinical ethics, with the hope of contributing to clear standards of excellence in clinical ethics consultation.

Preparing for the inevitable: the death of a living liver donor.

Living donor liver transplantation (LDLT) is associated with a low but finite and well-documented risk of donor morbidity and mortality, so organizations and individuals involved in this activity must accept the fact that a donor death is a question of when and not if. Studies in the field of crisis management show that preparing for the inevitable not only is critical in preparing institutions to better respond to catastrophic events but more importantly plays a crucial role in preventing them. This article describes the background of crisis management with specific reference to the death of a living liver donor and proposes a general framework that can be adopted by LDLT programs around the world.

Thinking ethically about medical mistakes.

Medical mistakes, especially ones with significant adverse events, can erode the trust and bonds between and among parents, patients, and health care professionals. Prevention of medical mistakes should be the goal of every health care organization, and participation in quality improvement processes aimed at patient safety is an ethical duty for all health care professionals. But when mistakes occur, health care organizations and professionals should rapidly move toward disclosure and apology. These duties of honesty, disclosure and apology are based ethically on core health care principles and values. Health care organizations should require disclosure-and-apology training, especially for front-line personnel; provide assistance to clinicians with these difficult conversations; and invest in resources to address the moral distress experienced by professionals, who are often the "second victims" of medical mistakes.

HCEC pearls and pitfalls: suggested do's and don't's for healthcare ethics consultants.

Members of the Clinical Ethics Consultation Affairs Standing Committee of the American Society for Bioethics and Humanities present a collection of insights and recommendations developed from their collective experience, intended for those engaged in the work of healthcare ethics consultation.

Living donor liver transplantation: ethical considerations.

Most solid-organ transplants performed in the Western world are from deceased donors. In the last decade, deceased donation rates have reached a plateau as the number of patients with end-stage organ disease has steadily increased, resulting in a large discrepancy between organ supply and demand. Living donor transplantation is one way to decrease this discrepancy. However, living donation is not universally accepted. For instance, living donation rates vary geographically (eg, living donation is more accepted in Asia than in the Western world) and depend on the organ donated (eg, kidney versus liver donation). In this article we will review the ethical principles guiding living donor liver transplantation, with emphasis on justification and safeguards that support the practice of adult-to-adult living donor liver transplantation, the most clinically and ethically challenging type of living organ donation. Our ethical justification will include a presentation of triangular or tripartite equipoise, a framework that aims to balance donor safety, expected recipient outcomes, and need.

Ethics of transparency in research reports.

Transparency in research methods and results is now widely seen as an imperative if the healthcare and research enterprise is to be truly successful. A patient-centred focus in the conduct of clinical care includes its safety, effectiveness, efficiency, equity, and timeliness. Innovative ways are being developed to understand, disseminate, and rapidly apply the best evidence to care delivery. In this article, we demonstrate the use of simple and appropriate statistics in research reports that should help healthcare providers apply knowledge to practice by making it easier for them to understand clinical medicine.