Clinical Ethicist Research Articles

Bad Words

AbstractThe clinical ethicist met with Ms. H to clarify what information she wants and does not want to know. First, she wants to receive any treatment that could prolong her life, regardless of how the treatment affects her ability to engage in activities of daily living. Second, she wants to be included in the decision‐making process as much as possible, as long as clinicians use only “positive” language. Ms. H considers the words “dying,” “chemotherapy,” “radiation,” and “cancer” to be “bad words.” For conversations in which these words cannot be avoided, she wants her clinicians to talk to her son. Her desired engagement includes hearing about risks, benefits, and alternatives to treatments if clinicians use only “positive” language. Finally, she says that she rarely sees doctors and that she is “very scared” of hospitals, despite exhibiting a comfortable demeanor.Should clinicians honor Ms. H's waiver of specified information and, if so, to what degree?

Defending the Jurisdiction of the Clinical Ethicist

In this essay I suggest that the bioethics profession's jurisdiction over healthcare ethics consultation is in need of reinforcement. I argue that as the profession becomes more successful, competitors will challenge the profession to justify its ethical claims and ask whose ethics the profession represents. This challenge will come more quickly as the profession tries to influence the ethics of healthcare organizations. I propose a method of bolstering jurisdiction that will make the profession less vulnerable to challenge in the future.

In Support of SUPPORT: Ignorance and Mistrust Can Harm Babies and Families

I am a neonatologist, a clinical investigator, and a clinical ethicist. I am also the mother of Violette, who was born at 24 weeks of gestational age. Violette participated in many clinical trials....

On the Lingua Franca of Clinical Ethics

In this 25-year retrospective on the state of clinical ethics, and the anniversary of the founding of The Journal of Clinical Ethics, the author comments on the state of the field. He argues that the language of bioethics, as used in practice, seems dated and out of touch with a clinical reality marked by emerging technologies and the advent of new fields like palliative medicine. Reflecting on his experiences as a clinician and clinical ethicist, the author worries about the emergence of a shallow bioethics, which is the product of a lingua franca. This linguistic amalgam is a weak composite in which concepts are simplified and nuance is overlooked, leading to interpretative errors. The best of ethical reasoning or clinical decision making can be lost in translation. Instead of the well-worn arguments over the relative worth of modes of ethical analysis, like principlism or pragmatism, the author argues that the emphasis should be on the cultivation of the "linguistic" skills necessary for translating any critical method in order to replace the lingua franca of clinical ethics with a more substantial discourse worthy of the complexity of the clinic.Through the emergence of such a shared language, at the interface of the sciences and the humanities, this multidisciplinary field can evolve towards more authentic interdisciplinarity.

Editors’ Note

Editors’ Note James M. DuBois and Ana S. Ilitis This issue of Narrative Inquiry in Bioethics engages a series of compelling questions through a narrative symposium, a case study, and two qualitative research articles. How does one’s own experience of illness affect the way one thinks about bedside ethics or the way one performs ethics consultations? The narrative symposium edited by Tod Chambers, “Taking Bioethics Personally,” presents a collection of stories by bioethicists about their personal experiences of illness and how these experiences affected how they practice bioethics. This symposium asks clinical bioethicists, who are accustomed to facilitating ethical discussions at the bedside of strangers, to examine how their own experience of illness and of the healthcare system changed the way they think about healthcare and healthcare ethics. In his commentary article, Bradley Lewis observes how the stories quickly broke down “the binary of personal and professional” and led him reflect on how he will deal with his own impairments and eventual demise. Again, we see the power of narrative approaches in bioethics to foster deep reflection and even wisdom as abstract questions in bioethics are transformed into existential questions. Should a healthcare provider honor parental requests to refrain from telling an intelligent adolescent her diagnosis and terminal prognosis? Erica Salter engages this question as she relates her experiences as a clinical ethicist serving a family in a situation that is so difficult that one feels empathy for everyone involved. The case raises a series of difficult legal and ethical questions about the rights of terminally ill minors and of the parents who care for them, as well as the responsibilities of pediatric healthcare workers who may have very strong convictions that conflict with those of parents. What can research regulators learn from qualitative studies on how institutional review board members and research participants make decisions regarding the risks and benefits of participating in a study? The article by Ann Freeman Cook, Helena Hoas, and Jane Clare Joyner shares data from two studies recently completed by their team and draws conclusions that may inform current debates about possible revisions to federal research regulations. Do patients reliably know why their physicians admitted them to the hospital? Zackary Berger, Anne Dembitzer, and Mary Catherine Beach interviewed patients and compared their understanding of why they were admitted to information found in their medical charts. Nearly half of all patients interviewed did not express a proper understanding of the reasons for their admission, which raises a whole series of new questions about effective communication and the quality of informed consent for a treatment option that is frequently expensive and burdensome. News about Narrative Inquiry in Bioethics We recently received news that Narrative Inquiry in Bioethics received Honorable Mention in the 2012 PROSE Award’s category of Best New Journal in Science, Technology, and Medicine. We thank the Johns Hopkins University Press, our Editorial Board, our sponsors, our peer reviewers, and all of our authors for making this possible. [End Page v] We are also pleased to announce that we received a gift from the BF Charitable Foundation to support operations and promote subscriptions. We thank the Foundation for its generous support. As a first step in our promotional campaign, we are working with the Johns Hopkins University Press to develop a new website for Narrative Inquiry in Bioethics. This new website will provide an attractive and user-friendly platform for those who wish to access the journal online, learn about current calls for stories, identify creative uses for our published materials (in the classroom, in research, and in policy work), or find our guidelines for authors. The promotion campaign is inspired by the conviction that—even as libraries tighten their budgets and focus on electronic journal packages—it is possible to build a loyal readership, a group of individual subscribers who await the next issue. Watch for an exciting pricing experiment by the Johns Hopkins University Press targeting individual readers! [End Page vi] Copyright © 2013 The Johns Hopkins University Press

Development of clinical ethics services in the UK: a national survey

BackgroundIn 2001 a report on the provision of clinical ethics support in UK healthcare institutions identified 20 clinical ethics committees. Since then there has been no systematic evaluation or documentation...

The evolving role of a ‘clinical ethicist’

BackgroundAustin health is a 600 bed tertiary hospital with a wide range of acute and sub acute services, including a number of specialist services. Many patients have extremely complex medical...

End-of-life healthcare decision-making: The intermediary role of the ethicist in supporting family caregivers and health professionals

Family support in end-of-life decision-making is critical, yet this issue receives little attention. The purpose of this research is to provide insight into how the clinical ethicist can effectively support family caregivers when making end-of-life healthcare decisions. It further suggests how the clinical ethicist can provide support to other healthcare professionals who work with family caregivers in making end-of-life healthcare decisions. Using a grounded theory approach, a theoretical sampling of 20 family caregivers previously involved in end-of-life decision-making were interviewed. Semi-structured in-depth interviews were audiotaped, and transcribed. Interviews were analyzed using a constant comparative approach. The analysis resulted in the identification of three categories related to the experience of decision-making: the impact of healthcare decision-making on individual and family well-being, the effectiveness of healthcare professionals in supporting families, and the role of the ethicist. The results demonstrated the challenges that family members encounter when faced with end-of-life decision-making. The participants identified the importance of having access to a clinical ethicist who, with objectivity and specific training, can better meet the needs of family caregivers and improve the process of decision-making at the end-of-life.

Ethics, risk, and patient‐centered care: How collaboration between clinical ethicists and risk management leads to respectful patient care

Patient-centered care is driven in part by the ethical principle of autonomy and considers patients' cultural traditions, personal preferences, values, family situations, and lifestyles. Patient decision-making capacity, surrogate decision making with or in the absence of a patient's advance directive, and the right to refuse treatment are three patient-care issues that are central to the work done by both the risk manager and the clinical ethicist that have strong relevance to patient-centered care. This article discusses these three issues briefly and offers two challenging case studies involving patient-centered care that illustrate how a clinical ethics consultation may help to avert the escalation that can lead to a tort claim.

Up in the Air — Suspending Ethical Medical Practice

First I will define what I conceive medicine to be. In general terms, it is to do away with the sufferings of the sick, to lessen the violence of their diseases, and to refuse to treat those who are overmastered by their disease, realizing that in such cases medicine is powerless. — The Hippocratic Corpus Our plane was flying from the East Coast to the West carrying 167 passengers, including my wife, a hospitalist and internist, and me, a neurologist and clinical ethicist. About midflight, a woman in the row behind us reached frantically for the baggage bin over our . . .

Commentary: An Invitation to Cross-Cultural Conversation

The case of Mrs. J is interesting not only because of the difficult questions that the clinical ethicist must confront but also because of the intriguing way in which such cases make Western clinicians and ethicists confront their own oft-unspoken cultural ethical norms and presuppositions.

Hiring a Hospital Staff Clinical Ethicist: Creating a Formalized Behavioral Interview Model

This paper presents the behavioral interview model that we developed to formalize our hiring practices when we, most recently, needed to hire a new clinical ethicist to join our staff at the Center for Ethics at Washington Hospital Center.

Exploring a Model Role Description for Ethicists

This paper provides a description of the role of the clinical ethicist as it is generally experienced in Canada. It examines the activities of Canadian ethicists working in healthcare institutions and the way in which their work incorporates more than ethics case consultation. The Canadian Bioethics Society established a "Taskforce on Working Conditions for Bioethics" (hereafter referred to as the Taskforce), to make recommendations on a number of issues affecting ethicists and to develop a model role description. This essay carefully assesses this model role description.

Echo Calling Narcissus: What Exceeds the Gaze of Clinical Ethics Consultation?

Guiding our response in this essay is our view that current efforts to demarcate the role of the clinical ethicist risk reducing its complex network of authorizations to sites of power and payment. In turn, the role becomes susceptible to various ideologies-individualisms, proceduralisms, secularisms-that further divide the body from the web of significances that matter to that body, where only she, the patient, is located. The security of policy, standards, and employment will pull against and eventually sever the authorization secured by authentic moral inquiry. Instead of asking "What do I need to know?", the question animating the drive to standardize will be "What is the policy or standard?" The claims of the authors in this issue of HEC Forum confirm these suspicions.

Film Review ETIENNE!: A Film about the Little Things in Life

I have to admit that I had no intention of reviewing this film for publication. My journey to the hostel on the beach in Sausalito was meant purely to be a fun night out at a special event with a colleague when she made the comment, “You’re reviewing this movie tonight, aren’t you?” The thought had never occurred to me. Why would a bona fide clinical ethicist want to review a movie about the end-of-life vacation of a hamster with terminal cancer? I mean really, I have to be serious about my work! Then the film started rolling ... Etienne, a dwarf hamster with a diagnosis of terminal cancer, isn’t the star of the film as I assumed; rather, Richard, loving owner, is the star. Richard’s goofiness and nerdy appearance is captivating. He takes you on his (mostly) bicycle journey from Laguna Beach in Southern California to Sausalito in Northern California, with a hand-crafted basket carrying Etienne hanging from the handlebars. In the days prior, Richard, who is taking a “sabbatical” from his mixed media art classes, has been informed that his best friend has terminal cancer. The veterinarian’s advice is euthanasia as soon as possible; however, the office receptionist suggests that Etienne “live life out loud” till its natural end. Richard opts for plan B and the adventure begins. Etienne’s “vacation” is Richard’s attempt to show the hamster how much he/she is loved and valued; it is also meant to be Etienne’s last hurrah. Up until now, Etienne’s life had been lived out in a series of hand-crafted domiciles, built by Richard with the best of design intent, but not always with structural integrity. Now, the hamster is running the beach and hiking the trails. In life and in death, Richard sets out to ensure that Etienne will shine. Convinced he cannot cure the disease, he aims to give total comfort and serenity during Etienne’s last days of life. Toward the end of the movie, somewhat awkwardly, a new character enters: Elodie. Her plight as a jilted college student who is also on “sabbatical” makes the two stories eventually collide. In some ways, Elodie can be a bit distracting, but she is a thread that pulls the movie together at its conclusion. The parallel to what is often seen when human patients are transitioned to comfort care is vivid. On the other hand, the caring images in the film between owner and animal also bring to mind the painfully difficult images encountered in hospitals when families refuse to transition their loved ones to comfort care and instead insist on their continued torture with needles, knives, and tubes of all sorts at the end of life. It seems that, sometimes, pets can get better endof-life care than genetic relations. This film affirms the importance of the “little things in life”, but what are these “little things” that the movie refers to? Rather than give up the plot, you will have to see the movie for yourself, as I suspect Bioethical Inquiry (2009) 6:513–514 DOI 10.1007/s11673-009-9189-7

Development and use of a decision aid for communication with hospitalized patients about cardiopulmonary resuscitation preference

Objective To develop and evaluate a decision aid related to CPR decision-making for hospitalized patients. Methods The development of the decision aid was guided by published recommendations; physicians, nurses, and a clinical ethicist were involved in the process. In-patients over age 55 with serious illnesses and their family were involved in pre-testing and evaluation. Results Twenty-five patients and 11 family members participated. The majority (23/25, 92% of patients, 7/11, 64% of family) reported the information in the decision aid was ‘Very’ or ‘Extremely’ helpful in decisions. More than 70% of patients and family considered the aid to be “acceptable.” The decision aid did not appear to bias towards or away from preferences for CPR. Participants did not report significant burden with use (median score 2/10; 1 = none, 10 = extremely upsetting). All patients and 10 family members recommended the aid be available to all patients. Conclusion The decision aid was felt to be acceptable, feasible, and useful by participants. Future research should evaluate the impact of the decision aid on outcomes including quality of decision-making. Practice implications The decision aid can be used to assist with CPR decision-making with seriously ill hospitalized patients. It is available for use on the CARENET website.

Role of Clinical Ethicists in Making Decisions About Levels of Care in the Intensive Care Unit

Role of Clinical Ethicists in Making Decisions About Levels of Care in the Intensive Care Unit

Living will, living well: reflections on preparing an advance directive

Using the voices of ordinary people, clinical ethicist and nurse Dianne Godkin explores the end-of-life issues and emotions that arise when an individual sets out to prepare an advance directive (living will). Conversations with study participants, and the composite character of Alice, are forthright, practical, and uplifting. Written for individuals and their families who are thinking about creating an advance directive, and for healthcare providers who interact with these individuals, this book provides readers with a deeper understanding of the experience of preparing for the end of life.

Professional Clinical Ethicist: Knowing Why and Limits

Professional Clinical Ethicist: Knowing Why and Limits

The Nurse Ethicist: An Emerging Role in Advanced Practice

The role of the advanced practice registered nurse as a clinical ethicist/consultant is both important and necessary in today's health care environment. The established role of the advanced practice registered nurse as a skilled clinician, consultant, educator, leader, and researcher more than qualifies one for such. The terms nurse ethicist and clinical ethicist or bioethics consultant may be used interchangeably to define the role.