The Journal of Clinical Ethics, Volume 29, Number 4, Winter 2018
At the Bedside
Helping Patients to Achieve What They Find Most Meaningful in Life
Edmund G. Howe, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 247-60.
Patients’ and families’ greatest need is often to do what for them is most meaningful. This may be, for example, their religion, their family, or their doing good for others. This piece will explore ways in which care providers may help maximize these ends. Paradigms offered will include Jehovah’s Witness patients needing kidney transplants, a transgender adolescent wanting his sperm preserved, care providers’ deciding whether to disclose that a deceased organ donor had HIV, and care providers seeking to do good for children profoundly impaired and adults who feel shame for just existing.
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Features
Familial Discordance Regarding Fertility Preservation for a Transgender Teen: An Ethical Case Study
Gwendolyn P. Quinn, Amani Sampson, and Lisa Campo-Engelstein, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 261-5.
A 16-year-old adolescent who identifies as transgender wishes to consider fertility preservation prior to the use of gender-affirming hormones. The adolescent’s parents are divorced, and one parent supports fertility preservation while the other does not. This case explores the minor’s future reproductive autonomy and parental decision making in a field where there is limited evidence of known harms and benefits to the use of fertility preservation in the transgender population and about future potential regret from lack of consideration of fertility preservation during the prime window of opportunity. This case is created from a composite of cases seen at multiple institutions.
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Proxy Consent by a Physician When a Patient’s Capacity Is Equivocal: Respecting a Patient’s Autonomy by Overriding the Patient’s Ostensible Treatment Preferences
Abraham Graber, Carolyn April, and Michael D. April, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 266-75.
Respect for patients’ autonomy has taken a central place in the practice of medicine. Received wisdom holds that respect for autonomy allows overriding a patient’s treatment preferences only if the patient has been found to lack capacity. This understanding of respect for autonomy requires a dichotomous approach to assessing capacity, whereby a patient must be found either to have full capacity to make some particular treatment decision or must be found to lack capacity to make that decision. However, clinical reality is more complicated, and, in borderline cases, different physicians may arrive at disparate judgments of capacity. In such cases, when capacity-determination protocols fail to achieve consensus, physicians would benefit from guidance regarding the clinical decision-making process necessary to elucidate the most ethically sound course of action. This article considers one such case and argues that, in a limited number of cases, respect for autonomy may require overriding a patient’s stated treatment preference when a capacity determination is equivocal, even though the patient has not clearly demonstrated a lack of capacity.
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Training to Increase Rater Reliability When Assessing the Quality of Ethics Consultation Records with the Ethics Consultation Quality Assessment Tool (ECQAT)
Robert Allan Pearlman, David Alfandre, Barbara L. Chanko, Mary Beth Foglia, and Kenneth A. Berkowitz, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 276-84.
The Ethics Consultation Quality Assessment Tool (ECQAT) establishes standards by which the quality of ethics consultation records (ECRs) can be assessed. These standards relate to the ethics question, consultation-specific information, ethical analysis, and recommendations and/or conclusions, and result in a score associated with one of four levels of ethics consultation quality. For the ECQAT to be useful in assessing and improving the quality of healthcare ethics consultations, individuals who rate the quality of ECRs need to be able to reliably use the tool.
We developed a short course to train ethics consultants in using the ECQAT, and evaluated whether the participants (1) achieved an acceptable level of calibration in matching expert-established quality scores for a set of ethics consultations, and (2) were satisfied with the course. We recruited 28 ethics consultants to participate in a virtual, six-session course. At each session participants and faculty reviewed, rated, and discussed one to two ECRs. The participants’ calibration in matching expert-established quality scores improved with repeated exposure at all levels of ethics consultation quality. Participants were generally more accurate when assessing consultation quality at the dichotomous level of “acceptable” (scores of three or four) versus “unacceptable” (scores of one or two) than they were with a more specific score. Participants had higher rates of accuracy with the extreme ratings of “strong” (level four) or “poor” (level one). Although participants were highly satisfied with the course, only a minority of participants achieved the prespecified acceptable level of calibration (that is, 80 percent or greater accuracy between their score and expert-established scores). These results suggest that ECQAT training may require more sessions or need modification in the protocol to achieve higher reliability in scoring. Such trainings are an important next step in ensuring that the ECQAT is a tool that can be used to promote improvement in ethics consultation quality.
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Technical Considerations for Implementation of Tele-Ethics Consultation in the Intensive Care Unit
Laura S. Johnson. David M. Brennan, and Nneka O. Sederstrom, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 285-90.
Background: Robust ethics consultation services cannot be sustained by all hospitals; consultative service from a high-volume center via teleconferencing is an attractive alternative. This pilot study was conceived to explore the feasibility and understand the practical implications of offering such a service.
Methods: High-definition videoconferencing was used to provide real-time interaction between the rounding clinicians and a remote clinical ethicist. Data collection included: (1) evaluation of the hardware and software required for teleconferencing, and (2) comparison of ethics trigger counts between the remote and on-site ethicist during rounds.
Results: Issues with audio represented the majority of technical problems. Once technical difficulties were addressed, the on-site ethicist’s count of “triggers” was not statistically different from the count of the remote ethicist.
Conclusion: Remote clinical ethics rounding is feasible when the equipment is optimized. Remote ethicists can identify similar numbers of “triggers” for possible ethical issues when compared to on-site ethicist numbers.
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Systematic Review of Typologies Used to Characterize Clinical Ethics Consultations
Jennifer E. deSante-Bertkau, Michelle L. McGowan, and Armand H. Matheny Antommaria, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 291-304.
Introduction: Classifying the ethical issues in clinical ethics consultations is important to clinical practice and scholarship. We conducted a systematic review to characterize the typologies used to analyze clinical ethics consultations.
Methods: We identified empirical studies of clinical ethics consultation that reported types of ethical issues using PubMed. We screened these articles based on their titles and abstracts, and then by a review of their full text. We extracted study characteristics and typologies and coded the typologies.
Results: We reviewed 428 articles; 30 of the articles fulfilled our inclusion criteria. We identified 27 unique typologies. Each typology contained five to 47 categories (mean = 18). The most common categories were do-not-attempt-resuscitation orders (19 typologies, 70 percent), capacity (18 typologies, 67 percent), withholding (18 typologies, 67 percent), withdrawing (17 typologies, 63 percent), and surrogate or proxy (16 typologies, 59 percent). Only seven (26 percent) of the typologies contained all five of the most common categories.
The typologies we used to characterize clinical ethics consultations exhibit significant heterogeneity and several conceptual limitations. A common typology is needed whose development may require multi-institutional collaboration and could be facilitated by professional organizations.
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Justice and Respect for Autonomy: Jehovah’s Witnesses and Kidney Transplant
Paul J. Cummins and Federico Nicoli, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 305-12.
That Jehovah’s Witnesses may refuse lifesaving blood transfusions is a morally accepted feature of contemporary medical practice. The principle of respect for autonomy supports this, and there is seldom reason to interfere with this choice because it rarely harms another individual. Advances in surgical technique have made it possible for transplant surgeons to perform bloodless organ transplant, enabling Jehovah’s Witnesses to benefit from this treatment. When the transplant organ is a directed donation from a family member or friend, no ethical dilemma arises. However, when a Jehovah’s Witness cannot identify a living donor and wishes to be listed for organ transplant, the transplant team may face an ethical dilemma. On the one hand, it wishes to provide care to the patient that is compatible with her or his preferences. On the other hand, the team may wonder if it is fair to other patients who need an organ and will accept blood transfusion to include the Jehovah’s Witness patient on a waiting list for a donated organ. If the Jehovah’s Witness patient is listed and receives an organ, then a patient who also needs an organ, and who is willing to accept all care to optimize the success of the transplant, may be denied an organ.
To frame the ethical dilemma outlined above we present an anonymized case of a Jehovah’s Witness woman in urgent need of a kidney, who was referred to one of the authors’ institution’s transplant center. We review the evolution of the Jehovah’s Witness position on blood transfusion and the medical community’s efforts to provide care that accommodates this religious commitment. If Witnesses are to be denied transplant in the name of justice, there must be an ethically sound reason. We identify two rationales in the literature: (1) this allocation is unacceptable because it will cost lives; (2) resources should be allocated to patients who comply with the standard of care. We argue that neither apply to this dilemma. We also emphasize the importance of examining the data on outcomes of transplant with and without transfusion. Our interpretation of the published data on transplant without transfusion is that the outcomes are similar. We conclude that, in the absence of data that resources are risked, it is not ethical to refuse to include a Jehovah’s Witness patient on a waiting list for an organ. Finally, we reflect on the heterogeneity in transplant institutes’ polices for accepting Jehovah’s Witness patients.
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Cases from the Cleveland Clinic
Discomfort as a Catalyst: An Ethical Analysis of Donation after Cardiac Death in a Patient with Locked-In Syndrome
Bethany Bruno and Margot M. Eves, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 313-8.
Diabetes is epidemic and many people cannot afford insulin, a lifesaving medication, as its price has increased by almost 160 percent in the past five years.1 To help subsidize the cost of insulin, one of the staff members at my hospital would like to give patients copayment coupons provided to her by pharmaceutical companies. I advised my colleague to stop distributing these branded coupons, as they promote particular pharmaceutical companies. This practice is not consistent with the policy on interaction with industry established by the Johns Hopkins Health System. Yet at the same time, I want my patients to be able to afford their insulin so they can treat their diabetes. I truly believe in utilitarianism. Would temporarily subsidizing patients’ insulin make me and my staff better healthcare providers? Would this minimize my patients’ financial burden? Would giving away medications coupons help pharmaceutical companies influence me as a prescriber? This challenge created a personal internal debate and profound moral distress.
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Perspective
To Give or Not to Give: The Challenge of Pharmaceutical Coupons
Mihail Zilbermint and Louise Schiavone, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 319-22.
Diabetes is epidemic and many people cannot afford insulin, a lifesaving medication, as its price has increased by almost 160 percent in the past five years.1 To help subsidize the cost of insulin, one of the staff members at my hospital would like to give patients copayment coupons provided to her by pharmaceutical companies. I advised my colleague to stop distributing these branded coupons, as they promote particular pharmaceutical companies. This practice is not consistent with the policy on interaction with industry established by the Johns Hopkins Health System. Yet at the same time, I want my patients to be able to afford their insulin so they can treat their diabetes. I truly believe in utilitarianism. Would temporarily subsidizing patients’ insulin make me and my staff better healthcare providers? Would this minimize my patients’ financial burden? Would giving away medications coupons help pharmaceutical companies influence me as a prescriber? This challenge created a personal internal debate and profound moral distress.
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