Ethics Consultation Service Research Articles

Knowledge of Pediatric Ethics: Results of a Survey of Pediatric Ethics Consultants

Background: Ethics consultants (ECs) are increasingly expected to possess core knowledge and skills. Few data address whether ECs actually possess recommended core knowledge. We aimed to measure pediatric ECs’ understanding of ethical principles, identify knowledge gaps, and explore associations between experience/training and knowledge in pediatric ethics consultations. Methods: We identified the 2 ECs most knowledgeable in pediatric ethics from each of 45 freestanding children's hospitals and an equal number of general teaching hospitals in the United States. This yielded a sample of 159 eligible pediatric ECs. Pediatric ECs were sent a survey measuring ethics training, characteristics of the ethics consultation service, and EC knowledge, as assessed by a previously validated scale entitled the Test of Residents’ Ethics Knowledge for Pediatrics (TREK-P). Of 102 completed surveys received, 99 were used in the analysis. Results: Seventy-three percent of ECs had completed ≥1 formal training modality, most commonly bioethics mini-courses, master's degrees, or certificate programs (20–30% each). Respondents infrequently received salary support (32%) or had a budget (28%) to support ethics work. The median TREK-P score was 19 (interquartile range [IQR] 17–21). Forty percent of subjects scored ≥20, surpassing the threshold of adequate performance proposed in previous work. Median scores were significantly higher among ECs with formal training in ethics but did not differ significantly by other variables. In secondary analyses, high scores (≥20) were significantly more common among ECs receiving salary support (55% vs. 33%, p = 0.04) and who had formal ethics training (47% vs. 22%, p = 0.02). Items pertaining to privacy, genetic testing, and assent, were answered incorrectly by >33% of ECs. Conclusions: High scores on a validated ethics knowledge scale were more common among ECs with salary support or formal ethics training. The study highlights knowledge gaps that warrant consideration as EC becomes a professionalized endeavor.

"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.

Weaponizing principles: clinical ethics consultations & the plight of the morally vulnerable.

Internationally, there is an on-going dialogue about how to professionalize ethics consultation services (ECSs). Despite these efforts, one aspect of ECS-competence that has received scant attention is the liability of failing to adequately capture all of the relevant moral considerations in an ethics conflict. This failure carries a high price for the least powerful stakeholders in the dispute. When an ECS does not possess a sophisticated dexterity at translating what stakeholders say in a conflict into ethical concepts or principles, it runs the risk of naming one side's claims as morally legitimate and decrying the other's as merely self-serving. The result of this failure is that one side in a dispute is granted significantly more moral weight and authority than the other. The remedy to this problem is that ECSs learn how to expand the diagnostic moral lens they employ in clinical ethics conflicts.

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.

An Embedded Model for Ethics Consultation: Characteristics, Outcomes, and Challenges

Background: Little has been written about models for clinical ethics consultation. By “model” we mean the way in which the engagement between the clinical ethics consultant, hospital staff, and other stakeholders is structured, with a key variable being the degree of integration with stakeholders within the institution or segments of the institution. We describe an innovative model of clinical ethics consultation, which we term “embedded ethics,” involving embedding clinical ethics consultants within clinical specialties and subspecialties based on institutional needs and areas of clinical ethicists’ expertise. Methods: The overarching methodology for this article is a case study, reporting our experience with an intervention that we evaluated using mixed methods. Results: Our results underscore the positive impact that an embedded ethics intervention can have on consultation volume and intensity, as well as clinical staff perceptions of an ethics consultation service (ECS). Conclusions: Our experience with the embedded ethics model supports several intuitions about the benefits of adopting such a model for increasing awareness (and use) of the ECS as a resource for clinicians, patients, and families and of improving clinicians’ satisfaction.

To evaluate the effectiveness of health care ethics consultation based on the goals of health care ethics consultation: a prospective cohort study with randomization

BackgroundThe growing prevalence of health care ethics consultation (HCEC) services in the U.S. has been accompanied by an increase in calls for accountability and quality assurance, and for the debates surrounding why and how HCEC is evaluated. The objective of this study was to evaluate the effectiveness of HCEC as indicated by several novel outcome measurements in East Asian medical encounters.MethodsPatients with medical uncertainty or conflict regarding value-laden issues, and requests made by the attending physicians or nurses for HCEC from December 1, 2009 to April 30, 2012 were randomly assigned to the usual care group (UC group) and the intervention group (HCEC group). The patients in the HCEC group received HCEC conducted by an individual ethics consultant. Data analysis was based on the intention-to-treat principle. Mann–Whitney test and Chi-squared test were used depending on the scale of measurement.ResultsThirty-three patients (53.23%) were randomly assigned to the HCEC group and 29 patients were randomly assigned to the UC group. Among the 33 patients in the HCEC group, two (6.06%) of them ultimately did not receive a HCEC service. Among the 29 patients in the UC group, four (13.79%) of them received a HCEC service. The survival rate at hospital discharge did not differ between the two groups. Patients in the HCEC group showed significant reductions in the entire ICU stay and entire hospital stay. HCEC significantly facilitated achieving the goal of medical care (p < .01). Furthermore, patients in the HCEC group had a shorter ICU stay and shorter hospital stay after the occurrence of medical uncertainty or conflict regarding value-laden issues than those in the UC group.ConclusionsOur findings demonstrated that HCEC were associated with reduced consumption of medical resources as indicated by shorter entire ICU stay, entire hospital stay, and shorter ICU and hospital stay after the occurrence of the medical uncertainty or conflict regarding value-laden issues. This study also showed that HCEC facilitated achieving a consensus regarding the goal of medical care, which conforms to the goal of HCEC.

Editors’ Note

Editors’ Note James M. DuBois, Ana S. Ilitis, and Susan G. DuBois This issue of Narrative Inquiry in Bioethics explores a series of bioethical topics through a narrative symposium, a case study, and two qualitative research articles. What is the experience of living with the label of “disability”? The narrative symposium, edited by Naomi Sunderland and Jeffery Bishop, presents a collection of stories from authors with both visible and invisible “disabilities.” These authors share deeply personal accounts of how their lives are affected by their disabilities and the way society views their disabilities. This collection of stories is fairly unique insofar as it explores a wide range of conditions, often labeled as amputation, autism, blindness, brain injury, deafness, spastic cerebral palsy and other conditions. The collection of stories not only allows us to read about diverse experiences, but to identify some common themes, which are explored in commentary articles by: Elizabeth R. Schiltz; Lorna Hallahan; Nicole Matthews, Kathleen Ellem, and Lesley Chenoweth; and Jeffery Bishop, Rachelle Barina, and Devan Stahl. How Do Deployed Health Care Providers Experience Moral Injury? Susanne W. Gibbons, Michaela Shafer, and Edward J. Hickling, and Gloria Ramsey address this question in their research article. The authors gathered narrative responses from a sample of recently deployed nurses and physicians that were analyzed help better understand individual perceptions of moral dilemmas that arise in combat. In the discussion section the authors draw out areas where healing efforts should be focused. What are the perspectives of healthcare providers caring for patients with disorders of consciousness? The research article by Catherine Rodrigue, Richard Riopelle, James L. Bernat, and Eric Racine is based on their qualitative study involving healthcare providers with different backgrounds. They conclude that there is a need for greater awareness of contextual, institutional and social aspects and focus on these issues in training programs. What does a families’ request to “do everything” mean when the patient has no chance of survival? In his case study H. Rex Greene discusses this common request and how to help both patients and families in such cases. He draws on Buckman’s SPIKES format to help unearth the real needs of the family and resolve the dilemma in a way that respects all parties concerned. News about Narrative Inquiry in Bioethics As announced in the last issue, we have established new and exciting partnerships with several important ethics consultation services (MD Anderson, the Cleveland Clinic, and Kaiser Permanente). We are pleased to add the Ethics Center at UCLA Health System to this impressive group. We are looking forward to publishing the first case from these partnerships in our next issue. For a list of current Calls for Stories and Author Guidelines, please visit www.nibjournal.org. [End Page v] Copyright © 2013 The Johns Hopkins University Press

Request for ethics support in healthcare practices. Reasons and characteristics of Ethics Consultation Service users.

Ethical problems in healthcare practices are increasing. Therefore, healthcare professionals encounter difficult ethical problems more frequently in their professional activities. For this reason, in several countries Ethics Consultation Services have been created, and a debate concerning their role and organization model has developed. Despite the great interest of healthcare professionals in ethics support, Ethics Consultation Services are scarcely diffused in Italy. A survey was conducted to identify the levels of the nurses' experience and knowledge in the field of ethics and to assess their willingness to use a consultation service to approach ethical issues in healthcare. A questionnaire was administered and completed personally by 374 nurses appropriately instructed beforehand on its use. They were recruited from post-basic training courses at the Faculty of Medicine and Surgery of the University of L'Aquila. The willingness to recur to an ethical consultation, indicated by 90.3% of respondents, would confirm the hypothesis that the increasing ethical difficulties encountered in healthcare activities determined a greater interest towards this kind of service. The results of the study underline both the need and expectations the nurses have for ethics consultation and support to face ethical difficulties in patient care, and describe the characteristics of potential users. In our country the delay in approaching such problems is in contrast with the marked interest the healthcare professionals have for a possible request for support to face ethical problems in patient care. The study shows the respondents' high degree of appreciation of the contents of an ethics consultation activity and, consequently, it is desirable that the creation of an Ethics Consultation Service takes into consideration the indications given by the potential users, in addition to the experiences coming from other countries.

“Please Help Me”

“Please Help Me” Rebecca L. Volpe Two–year–old Jay was born prematurely at 26 weeks gestation, addicted to opiates. After several months in the Neonatal ICU, he was sent home, ventilator–dependent but with a high likelihood of survival and a low chance of severe, lasting disability. When Jay was 1½, he had a cardiopulmonary arrest at home. The parents of children who are on ventilators at home receive extensive education and training about how to respond to something like an arrest. They are taught that a quick response is often critical to their child’s long–term prognosis. And yet, Jay’s parents took such a long time to respond to his code that Jay now has severe hypoxic ischemic encephalopathy: his brain was deprived of oxygen for so long that he has no higher cortical function, and will never think, speak, walk, or play. Currently, Jay is ventilator–dependent and has a very poor prognosis. Jay goes back and forth between a nursing home and the hospital. During one of his many hospitalizations, the ICU team decided to call an ethics consultation, because they felt that continued aggressive intervention was no longer in Jay’s best interests. I was the person on the other end of the line when the medical team called. After having a brief conversation with the attending physician, I left my office and walked to the Pediatric ICU to visit Jay. I arrived at the bedside—really just a large crib—and saw a baby with dark hair lying flat on his back. His tongue was swollen and protruding from his mouth, his eyes were puffy and closed, and his limbs were limp. On his belly was a piece of paper with the words, “BECKY PLEASE HELP ME” typed in huge, bold font. I looked up, into the eyes of the attending physician and said, “Did you type that?” The physician nodded yes. Much could be said about this physician’s behavior. But the bottom line—from a clinical perspective, at least—is that this ICU team was desperate, and that they had significant expectations that I would be able to help them. I began the work of the consultation. I reviewed the medical record, spoke with members of the treating team, and set up a time to talk to the family. During the family meeting, I learned that Jay’s parents wanted to continue to treat aggressively, and that they believed it was not their place to decide when it was their son’s time to die. That was [End Page 122] God’s decision. They could not fathom removing interventions that were maintaining their son’s life. They acknowledged that his quality of life was not high, but, still, it was life. The preferences of the treating team were in stark contrast to the parents’ preferences. The neurologists believed Jay did not have the capacity to experience physical pain, but the ICU team believed that continuing to treat Jay was cruel. Although the ICU team acknowledged that Jay was probably not suffering, they noted that we could not know for sure, and that sometimes Jay grimaced and withdrew—signs that are often interpreted as suffering. The ICU team also argued that given all the sick children in the world, and the scarcity of healthcare resources, it didn’t make sense to invest hundreds of thousands of dollars into prolonging Jay’s life. Additionally, they discovered that Jay had osteopenia (weak, brittle bones)—which was causing multiple bone fractures. The ICU team anguished over the thought of Jay’s small, soft bones continuing to break despite their best efforts. The bioethicist in me knows that, as long as the patient isn’t suffering and the parents aren’t demanding futile interventions (they weren’t), our role as providers was not to judge the parents’ value system. I told the ICU team over and over that different people place different value on Jay’s type of life, and that it wasn’t for us to tell them that their value structure was wrong. I talked with other members of the clinical ethics consultation service. Then I brought the case to the entire institutional...

A Case of Deceptive Mastectomy

This paper poses the question, "what are providers' obligations to patients who lie?" This question is explored through the lens of a specific case: a 26-year-old woman who requests prophylactic bilateral mastectomy with reconstruction reports a significant and dramatic family history, but does not want to undergo genetic testing. Using a conversational-style discussion, the case is explored by a breast surgeon, genetic counselor/medical geneticist, clinical psychologist, chair of a hospital ethics committee and director of a clinical ethics consultation service.

Disrespectful Care in the Treatment of Sickle Cell Disease Requires More Than Ethics Consultation

Disrespectful Care in the Treatment of Sickle Cell Disease Requires More Than Ethics Consultation

Sickle Cell Disease and the “Difficult Patient” Conundrum

The convergence of sickle cell disease's unique political, historical, cultural, medical, and psychological dimensions begets an especially distressing plight for sufferers of the disease. Too often, this convergence results in sickle cell patients being classified as “difficult.” As Autumn Fiester recently argued, traditional understanding of the “difficult” patient warrants reevaluation. By acknowledging the nuanced dimensions of sickle cell disease, we identify barriers to care particular to the disease, which further substantiate the need to redefine orthodox notions of the “difficult” patient. We support development of mechanisms in both health care provider education and third-party consultation support by the Ethics Consultation Service, or by other appropriately designated specialists, to respect the manifold dimensions of sickle cell disease as a necessary step toward the enhancement of clinical care for sickle cell patients.

Education and the improvement of clinical ethics services

The proliferation of clinical ethics in health care institutions around the world has raised the question about the qualifications of those who serve on ethics committees and ethics consultation services. This paper discusses some of weaknesses associated with the most common educational responses to this concern and proposes a complementary approach. Since the majority of those involved in clinical ethics are practicing health professionals, the question of qualification is especially challenging as the role of ethics committees and, increasingly, ethics consultation services are becoming increasingly important to the functioning of health care institutions. Since the challenging nature of health care finances often leads institutions to rely on voluntary participation of committed health professional with only token administrative or clerical support to provide the needed ethics services, significant challenges are created for attaining competence and functional effectiveness. The article suggests that a complementary approach should be adopted for sustaining and building capacity in clinical ethics. Ethics committees and consultation services should systematically adopt quality improvement techniques to effect designed changes in clinical ethics performance and to build ethical capacity within targeted clinical units and services. Demonstrating improvements in functioning can go a long way to build confidence and capacity for clinical ethics and can help in justifying the need for support. To do so, however, requires that ethics committees and consultation services first shift attention to those areas that demonstrate weak or questionable ethical performance, including the established practices of the ethics committee and consultation service, and second seek collaboration with the involved health care providers to pursue demonstrable change. Such an approach has a much better chance of improving the capacity for clinical ethics in health care institutions than relying on educational approaches alone.

Health Care Ethics Consultation: An Update on Core Competencies and Emerging Standards from the American Society for Bioethics and Humanities’ Core Competencies Update Task Force

Ethics consultation has become an integral part of the fabric of U.S. health care delivery. This article summarizes the second edition of the Core Competencies for Health Care Ethics Consultation report of the American Society for Bioethics and Humanities. The core knowledge and skills competencies identified in the first edition of Core Competencies have been adopted by various ethics consultation services and education programs, providing evidence of their endorsement as health care ethics consultation (HCEC) standards. This revised report was prompted by thinking in the field that has evolved since the original report. Patients, family members, and health care providers who encounter ethical questions or concerns that ethics consultants could help address deserve access to efficient, effective, and accountable HCEC services. All individuals providing such services should be held to the standards of competence and quality described in the revised report.

Perceptions of Clinical Ethics Practices: IntegratedEthicsTM Staff Survey Data from the VA Health Care System

Background: Clinical ethics is fundamental to the quality of health care and is a concern facing all health care systems. This study examined clinicians’ perceptions of ethical practices in shared decision making with patients, end-of-life care, professionalism in patient care, and patient privacy and confidentiality in order to identify strengths in ethical practices and opportunities for improvement. Methods: We analyzed data from the 48,857 clinician respondents to the 2010 IntegratedEthics™ Staff Survey (IESS). The IESS was developed to provide a broad snapshot of a health care organization's ethical practices for quality improvement purposes. We used descriptive statistics to evaluate clinicians’ perceptions of clinical ethics practices and multivariate logistic regression analyses to evaluate associations between clinician- and organization-level characteristics and positive ethical practices. Results: Survey results suggest opportunities for improvement in ethical practices, including giving patients sufficient time to discuss treatment recommendations, giving better guidance to clinicians on how to maintain professional boundaries, disclosing medical errors to patients and surrogates, and providing clinicians with better education about ethical issues in end-of-life care. The majority of respondents were familiar with the ethics consultation service (ECS). Familiarity with the ECS was significantly associated with length of time working at VA, physician status, and manager/supervisory level of responsibility. If confronted with an ethical concern, approximately three-quarters of respondents reported that they would be very or moderately likely to use the ECS. Conclusions: The results from this study support quality improvement activities by allowing health care organizations to compare clinical ethics practices across staff groups, settings, and time. After a facility obtains its results, the next steps should include seeking greater understanding through qualitative interviews, and then selecting topics for quality improvement initiatives. These activities will reinforce the importance of ethics as a component of health care quality and promote a positive ethics environment.

The Establishment of Research Ethics Consultation Services (RECS): An Emerging Research Resource

Emphasis on translational research to facilitate progression from the laboratory into the community also creates a dynamic in which ethics and social policy questions and solutions are ever pressing. In response, academic institutions are creating Research Ethics Consultation Services (RECS). All Clinical Translational Science Award institutions were surveyed in early 2010 to determine which institutions have a RECS in operation and what is their composition and function. Of the 46 institutions surveyed, 33 (70%) have a RECS. Only 15 RECS have received any consult requests in the last year. Issues that are common among these relatively nascent services include relationships with institutional oversight committees, balancing requestor concerns about confidentiality with research integrity and human subjects protection priorities, tracking consult data and outcomes, and developing systems for internal evaluation. There is variability in how these issues are approached. It will be important to be attentive to the institutional context to develop an appropriate approach. Further data about the issues raised by requestors and the recommendations provided are necessary to build a community of scholars who can navigate and resolve ethical issues encountered along the translational research pathway.

Ethical difficulties in nursing, educational needs and attitudes about using ethics resources

Ethical difficulties arise in healthcare practices. However, despite extensive research findings that demonstrate that most nurses are involved in recurrent ethical problems, institutions are not always able to effectively support nursing care professionals. The limited availability of ethics consultation services and traditional nursing training fails to meet the frequent and strong requests by health workers to support their ethical dilemmas. A questionnaire was administered to 374 nurses attending a specialist training and a lifetime learning programme in Italy. The respondents reported a high frequency of ethically sensitive situations, and they described the poor development of ethics support and a scarcity of ethics training programmes. The results suggest the importance of promoting ethics services that include consultation and ethics training. A need for systematic ethics educational activities was identified for improving the capacity of nurses to manage ethical issues in patient care.

The ethics of living donation for liver transplant: beyond donor autonomy

This paper will present and discuss our conclusions about the ethics of living donation for liver transplant (LDLT) after 8year of collaboration between our clinical ethics consultation service and liver transplant teams, in the course of which we met with all donor-candidates. We will focus on the results of a follow-up study that was conducted in order to evaluate the long-term consequences for potential donors and to interview them on the ethical aspects of the screening process. This study was conducted from April 2007 to November 2009 and consisted of interviews with donor-candidates, regardless of whether they underwent harvest surgery, at least 1year after the recipient's transplant. We explored their views about their own and the recipients' physical and psychological condition, changes in family and career dynamics, their experience as potential or real donors, and their views about LDLT process in general. Results shed new light on the ethical grounds of LDLT and allow us to envisage new ways of improving the ethical soundness of current procedures and practices. In particular, we argue that the purpose of an ethics committee should be to provide follow-up support for the donors rather than merely to check the freedom of donors' consent. We also suggest that the recipient's consent deserves more attention than it currently receives.

Use of the Medical Ethics Consultation Service in a Busy Level I Trauma Center: Impact on Decision-Making and Patient Care

The purposes of this study were to assess reasons for consultation of the Ethics Consultation Service for trauma patients and how consultations impacted care. We conducted a review of ethics consultations at a Level I trauma center from 2001 to 2010. Data included patient demographics, etiology of injury, and timing/type of the consult, categorized as: shared decision-making, end-of-life, privacy and confidentiality, resource allocation, and professionalism. Consultations were requested on 108 patients (age mean, 46.5 ± 20 years; Injury Severity Score mean, 23 ± 14; length of stay [LOS] mean, 44 ± 44 days), 0.50 per cent of all trauma admissions. Seventy-seven per cent of consultations occurred in the intensive care unit. End of life was the most common consultation (44%) followed by shared decision-making (41%). Average time to consultation was 25 days. Shared decision-making consults occurred much earlier than end-of-life consults as evidenced by a lower consult day/LOS ratio (consult day/LOS = 0.36 ± 0.3 vs 0.77 ± 0.3, P = 0.0001). Conclusions consisted of: 1) ethics consultation on trauma patients are most commonly for end-of-life and shared decision-making issues; 2) most ethics consultations occur while patients are in the intensive care unit; and 3) earlier ethics consultations are likely to be for shared decision-making issues.

Training in Clinical Ethics Consultation: The Washington Hospital Center Course

How can one be trained to enter the evolving field of clinical ethics consultation? The classroom is not the proper place to teach clinical ethics consultation; it is best done in a clinical setting. The author maps the elements that might be included in an apprenticeship, and sets out propositions for debate regarding the training needed for clinical ethics consultants and directors of clinical ethics consultation services. I was invited to be an observer of the first Intensive Course in Clinical Ethics at the Washington Hospital Center (WHC). I had no input into the planning. Having been present at a meeting of the Clinical Ethics Consultation Affinity Group of the American Society of Bioethics and Humanities (ASBH) when the issue of a lack of training programs was discussed, I was acutely aware of the need. Knowing how popular the various four-day intensive courses in bioethics have been, held at Georgetown University first, and then in Seattle and locations in the Midwest, it seemed time to have a four-day intensive course that was devoted to clinical ethics. The differences between bioethics and clinical ethics is substantial and largely unappreciated by those in bioethics. So when the WHC team agreed to take on the task of offering an intensive in clinical ethics, it was an important step for the field.