Kelly Fryer-Edwards

Research Ethics Recommendations for Whole-Genome Research: Consensus Statement

Interest in whole-genome research has grown substantially over the past few months. This article explores the challenging ethics issues associated with this work.

Surviving Surrogate Decision-Making: What Helps and Hampers the Experience of Making Medical Decisions for Others

BACKGROUNDA majority of end-of-life medical decisions are made by surrogate decision-makers who have varying degrees of preparation and comfort with their role. Having a seriously ill family member is stressful for surrogates. Moreover, most clinicians have had little training in working effectively with surrogates.OBJECTIVESTo better understand the challenges of decision-making from the surrogate’s perspective.DESIGNSemistructured telephone interview study of the experience of surrogate decision-making.PARTICIPANTSFifty designated surrogates with previous decision-making experience.APPROACHWe asked surrogates to describe and reflect on their experience of making medical decisions for others. After coding transcripts, we conducted a content analysis to identify and categorize factors that made decision-making more or less difficult for surrogates.RESULTSSurrogates identified four types of factors: (1) surrogate characteristics and life circumstances (such as coping strategies and competing responsibilities), (2) surrogates’ social networks (such as intrafamily discord about the “right” decision), (3) surrogate–patient relationships and communication (such as difficulties with honoring known preferences), and (4) surrogate–clinician communication and relationship (such as interacting with a single physician whom the surrogate recognizes as the clinical spokesperson vs. many clinicians).CONCLUSIONSThese data provide insights into the challenges that surrogates encounter when making decisions for loved ones and indicate areas where clinicians could intervene to facilitate the process of surrogate decision-making. Clinicians may want to include surrogates in advance care planning prior to decision-making, identify and address surrogate stressors during decision-making, and designate one person to communicate information about the patient’s condition, prognosis, and treatment options.

Beyond Substituted Judgment: How Surrogates Navigate End‐of‐Life Decision‐Making

OBJECTIVES: To characterize how surrogates plan to make medical decisions for others.

Reflective teaching practices: An approach to teaching communication skills in a small-group setting

Small-group teaching is particularly suited for complex skills such as communication. Existing work has identified the basic elements of small-group teaching, but few descriptions of higher-order teaching practices exist in the medical literature. Thus the authors developed an empirically driven and theoretically grounded model for small-group communication-skills teaching. Between 2002 and 2005, teaching observations were collected over 100 hours of direct contact time between four expert facilitators and 120 medical oncology fellows participating in Oncotalk, a semiannual, four-day retreat focused on end-of-life communication skills. The authors conducted small-group teaching observations, semistructured interviews with faculty participants, video or audio recording with transcript review, and evaluation of results by faculty participants. Teaching skills observed during the retreats included a linked set of reflective, process-oriented teaching practices: identifying a learning edge, proposing and testing hypotheses, and calibrating learner self-assessments. Based on observations and debriefings with facilitators, the authors developed a conceptual model of teaching that illustrates an iterative loop of teaching practices aimed at enhancing learners’ engagement and self-efficacy. Through longitudinal, empirical observations, this project identified a set of specific teaching skills for small-group settings with applicability to other clinical teaching settings. This study extends current theory and teaching practice prescriptions by describing specific teaching practices required for effective teaching. These reflective teaching practices, while developed for communication skills training, may be useful for teaching other challenging topics such as ethics and professionalism.

Promoting reflection on professionalism: a comparison trial of educational interventions for medical students.

Purpose To determine whether writing, one-on-one interviews with faculty, or a combination of these interventions effectively elicited reflection on professionalism for medical students. Method The study was a randomized trial conducted in 2001 at Harborview Medical Center, Seattle, Washington, with fourth-year medical students on a four-week clinical clerkship in emergency medicine. Three interventions were evaluated: the critical incident report (CIR), the CIR followed by a one-on-one interview with a faculty member, and one-on-one interview with no CIR. Quality and quantity of professional issues raised were addressed. Results All students (n = 68) agreed to participate; 66 completed the study components. On average, the students addressed significantly more issues of professionalism in their interviews alone than in their CIRs, 15.9 (95% confidence interval [CI] 18.2–13.6) and 7.15 (CI 8.88–5.40) issues respectively (p < .0001). Interviews preceded by CIRs were not significantly different from interviews with no CIR (13.5 versus 15.9 professionalism issues raised, respectively). In-depth explorations, including problem solving and projection to the future, occurred 2.59 times in interviews alone (CI 3.62–1.56) and 0.794 times in CIRs (CI 1.12–0.46) (p < .001). When analyzed as a proportion of total statements, the groups had similar ratios of in-depth statements (11.2% in CIRs and 15.7% in interviews alone). Conclusion Writing did not significantly affect the quantity or quality of reflection in interviews. One-on-one interviews with a faculty mentor most effectively elicited reflection on professionalism. Future studies should examine how reflective exercises such as those evaluated can be used to promote professional development.

Faculty development to change the paradigm of communication skills teaching in oncology

Dr B, a faculty oncologist supervising fellows at an outpatient oncology clinic, faces a common teaching quandary. A second-year oncology fellow presents a patient with metastatic lung cancer, which has progressed despite second-line palliative chemotherapy. The fellow concludes his presentation, which was technically impeccable, by saying, “I thought the patient was not getting how bad this is, so it was time to hang crepe. I told him it was a choice between phase I or nothing.” Dr B knows the fellow to be a careful physician who is genuinely concerned about the well-being of his patients. Yet the fellows comment about hanging crepe raises a red flag for Dr B, because in his experience, blunt disclosures of poor prognoses may lead patients to wonder if their physician is still on their side. In addition, Dr B does not like telling patients that there is nothing more to be done. But he is not sure how to get the fellow to understand this. Should he confront the fellow about this, or just let the comment pass?

Finding Effective Strategies for Teaching Ethics: A Comparison Trial of Two Interventions

Purpose To compare the effects of two teaching methods (written case analyses and written case analyses with group discussion) on students’ recognition and assessment of common ethical dilemmas. Method In 1999–2000, all third-year students at the University of Washington School of Medicine on a pediatrics clinical rotation participated in the study. Eighty students were based in Seattle and 66 were in community sites in a five-state area. All students received three scenarios with written instructions for ethical analysis, submitted written answers, and received written feedback from a single evaluator. The Seattle students also participated in an hour-long, one-time discussion group about the cases. All students submitted a final case analysis. Four components of the case analyses were evaluated: ability to identify ethical issues, see multiple viewpoints, formulate an action plan, and justify their actions. One investigator evaluated a masked subset of the case analyses from both groups to assess whether teaching method affected the students’ ability to recognize and assess ethical problems. Results Forty-eight of 146 available case analysis sets (each set included three initial analyses plus one final analysis) were masked and coded. Performances on the initial analyses were similar in both groups (p > .2–.8). The discussion group had a higher absolute increase in total score (p = .017) and in ability to formulate a plan (p = .013) on the final case analysis. Performances otherwise remained largely similar. Conclusions Students’ recognition and assessment of ethical issues in pediatrics improves following a case-based exercise with structured feedback. Group discussion may optimize the learning experience and increase students’ satisfaction.

Meeting the Governance Challenges of Next-Generation Biorepository Research

Advances in biorepository research will require innovative new approaches to oversight and governance. Advances in clinical translational research have led to an explosion of interest in infrastructure development and data sharing facilitated by biorepositories of specimens and linked health information. These efforts are qualitatively different from the single-center sample collections that preceded them and pose substantial new ethics and regulatory challenges for investigators and institutions. New research governance approaches, which can address current and anticipated challenges, promote high-quality research, and provide a robust basis for ongoing research participation, are urgently required.

Bringing ethics education to the clinical years: ward ethics sessions at the University of Washington.

Purpose Although most medical schools teach medical ethics during preclinical years, incorporating these ethics into clinical training remains challenging. During clinical rotations, students’ professional behaviors and attitudes are profoundly affected. This project was intended to develop an educational intervention to incorporate medical ethics training as a part of students’ professional development within the context of clinical training. Method “Ward Ethics” is a series of peer discussions guided by clinical faculty mentors trained in fostering issue identification and strategy development. The sessions described here were conducted during medicine and surgery rotations for third-year medical students at the University of Washington School of Medicine from 1998 to 2003. Thirty clinical faculty participated as facilitators. Written evaluations were collected from students and faculty at each session, and faculty interviews were conducted in 2001. Results The data reported are from 24 sessions and 15 faculty interviews from 1999 to 2001. The topics were consistent with prior reports of ethical issues that students encountered. Students reported a variety of learned strategies such as knowing how and when to speak up and transitioning from prioritizing evaluations to focusing on patient care, resulting in their feeling more confident. Faculty reported noticing positive results to their professional development as well. Conclusions Medical students in the clinical years face ethically challenging situations. Some circumstances, if left unexamined, may erode students’ abilities to maintain and develop appropriate professional behaviors. Students participating in this activity agreed that it served as a way to fight isolation, share stories, and exchange ideas for future problem solving.

Educational Needs in Genetic Medicine: Primary Care Perspectives

Background/Aims: This study was performed to identify primary care physicians’ (PCPs) attitudes toward genetic medicine and their perceived needs for education in this area. Methods: Semistructured telephone interviews with 24 PCPs in the northwestern United States. Results: PCPs are interested in learning more about who should receive genetic testing and what tests are available. Training in counseling and risk communication is desired, as are ‘just-in-time’ resources to guide clinical decisions. Conclusions: PCPs are eager to learn about genetic medicine; however, their priorities may differ in emphasis from those put forward by genetics experts. Future educational efforts would do well to build on PCPs’ prior knowledge base, highlight the clinical relevance of genetic medicine to primary care practice, and emphasize ‘red flags’: cues to alert PCPs to a potential genetic contribution.