Interprofessional communication skills training for serious illness: evaluation of a small-group, simulated patient intervention.

BACKGROUND: Communication with patients and families is an essential component of high-quality care in serious illness. Small-group skills training can result in new communication behaviors, but past studies have used facilitators with extensive experience, raising concerns this is not scalable. OBJECTIVE: The objective was to investigate the effect of an experiential communication skills building workshop (Codetalk), led by newly trained facilitators, on internal medicine trainees' and nurse practitioner students' ability to communicate bad news and express empathy. DESIGN: Trainees participated in Codetalk; skill improvement was evaluated through pre- and post- standardized patient (SP) encounters. SETTING AND SUBJECTS: The subjects were internal medicine residents and nurse practitioner students at two universities. INTERVENTION AND MEASUREMENTS: The study was carried out in anywhere from five to eight half-day sessions over a month. The first and last sessions included audiotaped trainee SP encounters coded for effective communication behaviors. The primary outcome was change in communication scores from pre-intervention to post-intervention. We also measured trainee characteristics to identify predictors of performance and change in performance over time. RESULTS: We enrolled 145 trainees who completed pre- and post-intervention SP interviews-with participation rates of 52% for physicians and 14% for nurse practitioners. Trainees' scores improved in 8 of 11 coded behaviors (p<0.05). The only significant predictors of performance were having participated in the intervention (p<0.001) and study site (p<0.003). The only predictor of improvement in performance over time was participating in the intervention (p<0.001). CONCLUSIONS: A communication skills intervention using newly trained facilitators was associated with improvement in trainees' skills in giving bad news and expressing empathy. Improvement in communication skills did not vary by trainee characteristics.

Why don't patients enroll in hospice? Can we do anything about it?

BACKGROUND: United States hospice organizations aim to provide quality, patient-centered end-of-life care to patients in the last 6 months of life, yet some of these organizations observe that some hospice-eligible patients who are referred to hospice do not initially enroll. PRIMARY OBJECTIVE: To identify reasons that eligible patients do not enroll in hospice (phase 1). SECONDARY OBJECTIVE: To identify strategies used by hospice providers to address these reasons (phase 2). DESIGN: Semi-structured interviews analyzed using content analysis. PARTICIPANTS: In phase 1, we interviewed 30 patients and/or family members of patients who had a hospice admissions visit, but who did not enroll. In phase 2, we interviewed 19 hospice staff and national experts. APPROACH: In phase 1, we asked participants to describe the patient's illness, the hospice referral, and why they had not enrolled. We performed a content analysis to characterize their reasons for not enrolling in hospice. In phase 2, we enrolled hospice admissions staff and hospice experts. We asked them to describe how they would respond to each reason (from phase 1) during an admissions visit with a potential new hospice patient. We identified key phrases, and summarized their recommendations. RESULTS: Reasons that patients hadn't enrolled fell into three broad categories: patient/family perceptions (e.g., "not ready"), hospice specific issues (e.g., variable definitions of hospice-eligible patients), and systems issues (e.g., concerns about continuity of care). Hospice staff/experts had encountered each reason, and offered strategies at the individual and organizational level for responding. CONCLUSIONS: In hopes of increasing hospice enrollment among hospice-eligible patients, non-hospice and hospice clinicians may want to adopt some of the strategies used by hospice staff/experts for talking about hospice with patients/families and may want to familiarize themselves with the differences between hospice organizations in their area. Hospices may want to reconsider their admission policies and procedures in light of patients' and families' perceptions and concerns.

Meeting the governance challenges of next-generation biorepository research.

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.

Population description and its role in the interpretation of genetic association.

Despite calls for greater clarity and precision of population description, studies have documented persistent ambiguity in the use of race/ethnicity terms in genetic research. It is unclear why investigators tolerate such ambiguity, or what effect these practices have on the evaluation of reported associations. To explore the way that population description is used to replicate and/or extend previously reported genetic observations, we examined articles describing the association of the peroxisome proliferator-activated receptor-gamma-gamma Pro12Ala polymorphism with type 2 diabetes mellitus and related phenotypes, published between 1997 and 2005. The 80 articles identified were subjected to a detailed content analysis to determine (1) how sampled populations were described, (2) whether and how the choice of sample was explained, and (3) how the allele frequency and genetic association findings identified were contextualized and interpreted. In common with previous reports, we observed a variety of sample descriptions and little explanation for the choice of population investigated. Samples of European origin were typically described with greater specificity than samples of other origin. However, findings from European samples were nearly always compared to samples described as "Caucasian" and sometimes generalized to all Caucasians or to all humans. These findings suggest that care with population description, while important, may not fully address analytical concerns regarding the interpretation of variable study outcomes or ethical concerns regarding the attribution of genetic observations to broad social groups. Instead, criteria which help investigators better distinguish justified and unjustified forms of population generalization may be required.

Long-term outcomes of the "Genetics in Primary Care" faculty development initiative.

BACKGROUND AND OBJECTIVES: Between October 2000 and April 2001, 79 primary care physicians (PCPs) and 21 genetics professionals from 20 teaching medical universities across the United States participated in the Genetics in Primary Care (GPC) project (a national faculty development initiative for PCPs with teaching responsibilities). In 2004--2005, follow-up site visits and phone interviews were done to determine whether participation in the GPC faculty development program has had lasting effects on participants' teaching and clinical practices. METHODS: Site visits were performed at nine sites and individual phone interviews at remaining sites. The same questionnaire was used in both settings. Content analysis of responses was performed. RESULTS: Follow-up achieved responses at 19/20 sites, for a site-level response rate of 95%. All respondents reported having made changes to their formal and informal teaching practices. The majority of respondents (86% of phone interviews) also reported changes to their clinical practice, including an increased awareness of genetics in clinical situations and more appropriate referral patterns. All would recommend similar projects to colleagues, but some (32% of phone interviews) would advise assuring that certain conditions are present (eg, protected time, resources). CONCLUSION: GPC has had lasting effects on its participants' teaching and clinical practices.

Transforming the culture of biomedical research from compliance to trustworthiness: insights from nonmedical sectors.

To discover ways that the biomedical research community can foster the public's trust essential to sustain the research enterprise, in 2005 the authors and their colleagues convened a group of national leaders from sectors outside of academic science and health care that are also dependent on the public's trust. These leaders provided information about what their sectors do to earn the public's trust that is applicable to academic biomedical research institutions, as well as insights into ways academic research institutions should respond to crises that have the potential to diminish the public's trust. The major strategies they identified for promoting the public's trust were the importance of fostering multiple types of relationships and developing accountability practices that exceed those required by external regulators.In this article, the authors compare these strategies with reports in the literature regarding efforts under way in health care to adapt strategies employed in other sectors to improve the safety of health care. On the basis of what the authors learned from both the national leaders outside of biomedical research and health care and the health care safety literature review, they present a set of recommendations for building and restoring trust, as well as a list of benchmarks for assessing the adequacy of efforts by research institutions to promote the public's trust in biomedical research.

Transforming genetic research practices with marginalized communities: a case for responsive justice.

Genetics researchers often work with distinct communities. To take moral account of how their research affects these communities, they need a richer conception of justice and they need to make those communities equal participants in decision-making about how the research is conducted and what is produced and published out of it.

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.

Overcoming institutional challenges through continuous professionalism improvement: the University of Washington experience.

The University of Washington (UW) School of Medicine is in the midst of an emerging ecology of professionalism. This initiative builds on prior work focusing on professionalism at the student level and moves toward the complete integration of a culture of professionalism within the UW medical community of including staff, faculty, residents, and students. The platform for initiating professionalism as institutional culture is the Committee on Continuous Professionalism Improvement, established in November 2006. This article reviews three approaches to organizational development used within and outside medicine and highlights features that are useful for enhancing an institutional culture of professionalism: organizational culture, safety culture, and appreciative inquiry. UW Medicine has defined professional development as a continuous process, built on concrete expectations, using mechanisms to facilitate learning from missteps and highlighting strengths. To this end, the school of medicine is working toward improvements in feedback, evaluation, and reward structures at all levels (student, resident, faculty, and staff) as well as creating opportunities for community dialogues on professionalism issues within the institution. Throughout all the Continuous Professionalism Improvement activities, a two-pronged approach to cultivating a culture of professionalism is taken: celebration of excellence and attention to accountability.

Surviving surrogate decision-making: what helps and hampers the experience of making medical decisions for others.

BACKGROUND: A 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. OBJECTIVES: To better understand the challenges of decision-making from the surrogate's perspective. DESIGN: Semistructured telephone interview study of the experience of surrogate decision-making. PARTICIPANTS: Fifty designated surrogates with previous decision-making experience. APPROACH: We 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. RESULTS: Surrogates 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). CONCLUSIONS: These 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.

Efficacy of communication skills training for giving bad news and discussing transitions to palliative care.

BACKGROUND: Few studies have assessed the efficacy of communication skills training for postgraduate physician trainees at the level of behaviors. We designed a residential communication skills workshop (Oncotalk) for medical oncology fellows. The intervention design built on existing successful models by teaching specific communication tasks linked to the patient's trajectory of illness. This study evaluated the efficacy of Oncotalk in changing observable communication behaviors. METHODS: Oncotalk was a 4-day residential workshop emphasizing skills practice in small groups. This preintervention and postintervention cohort study involved 115 medical oncology fellows from 62 different institutions during a 3-year study. The primary outcomes were observable participant communication skills measured during standardized patient encounters before and after the workshop in giving bad news and discussing transitions to palliative care. The standardized patient encounters were audiorecorded and assessed by blinded coders using a validated coding system. Before-after comparisons were made using each participant as his or her own control. RESULTS: Compared with preworkshop standardized patient encounters, postworkshop encounters showed that participants acquired a mean of 5.4 bad news skills (P<.001) and a mean of 4.4 transitions skills (P<.001). Most changes in individual skills were substantial; for example, in the bad news encounter, 16% of participants used the word "cancer" when giving bad news before the workshop, and 54% used it after the workshop (P<.001). Also in the bad news encounter, blinded coders were able to identify whether a standardized patient encounter occurred before or after the workshop in 91% of the audiorecordings. CONCLUSION: Oncotalk represents a successful teaching model for improving communication skills for postgraduate medical trainees.

Incorporating principles and practical wisdom in research ethics education: a preliminary study.

PURPOSE: Researchers are faced with daily ethical decisions that are subtle and nuanced. However, research ethics training has primarily focused on formal guidelines, general ethical principles, and historically noteworthy cases of research abuse, which may not prepare researchers to respond to everyday dilemmas in research. This study characterized researchers' responses to ethical dilemmas with the goal of aligning research ethics education programs with the demands of practice. METHOD: As a preliminary study, the authors conducted 23 semistructured interviews with senior researchers and research administrators engaged in research with human subjects at the University of Washington and affiliated institutions in 2004. Transcripts were reviewed for research conflicts and strategies used to resolve conflicts identified by participants. RESULTS: Participants referenced two distinct methods of reasoning when faced with conflicts: formal guidelines and practical wisdom. Formal guidelines include established goals, boundaries, and absolutes. Practical wisdom, an Aristotelian concept involving intuitions developed through experience, facilitates responses to everyday dilemmas and new situations. Developing practical wisdom requires researchers to calibrate their own intuitions about right and wrong. Three practices were reported to contribute to this development: self-reflection, sincere skepticism, and open dialogue with colleagues. CONCLUSIONS: These reflections from the senior researchers suggest a need to expand the scope of ethics education programs to include a focus on the development of researchers' pragmatic decision making in addition to the formal rules that govern research. Further research should explore effective educational and institutional strategies that can foster researchers' development in ethical decision making and conduct.

Theoretical foundations for interventions designed to promote informed decision making for cancer screening.

BACKGROUND: Decision aids are currently being developed and evaluated for use in cancer-screening decisional settings. PURPOSE: The purpose of this article is to review and discuss the theoretical basis of interventions to promote informed decision making in cancer screening. METHODS: We reviewed interventions cited in Briss et al. and Rimer et al. to identify their theoretical basis, intervention content, measurement strategies, and outcomes. RESULTS: Few interventions had a strong, decision-oriented conceptual basis. This was apparent in their intervention content, the measurement strategy, and the choice of outcomes for the study. CONCLUSIONS: We recommend that more research occur into the basis of decision making in cancer screening and that future interventions use this research to rigorously design and evaluate decision aids to help people make choices about cancer screening.

Beyond substituted judgment: How surrogates navigate end-of-life decision-making.

OBJECTIVES: To characterize how surrogates plan to make medical decisions for others. DESIGN: Descriptive study using semistructured qualitative interviews. SETTING: Surrogates were interviewed by telephone from their homes. PARTICIPANTS: Fifty experienced surrogate decision-makers identified to make decisions for older, chronically ill veterans. MEASUREMENTS: Surrogates were asked to describe advance care planning conversations with loved ones and how they planned to make future medical decisions. Thematic content analysis was used to identify bases for decision-making. RESULTS: Surrogates described the motivators and the content of advance care planning conversations with loved ones. Surrogates described five bases for decision-making: (1) conversations (making decisions based on their knowledge of their loved ones' preferences), (2) relying on documents (referring to their loved ones' advance care directives), (3) shared experience (believing an "inner sense" would guide decisions because of shared lived experience with loved ones), (4) surrogates' own values and preferences about life, and (5) surrogates' network (enlisting the help of others). CONCLUSION: Although ethicists and clinicians expect surrogates to use substituted judgment or patients' best interests when making decisions, these data indicate that many surrogates rely on other factors such as their own best interests or mutual interests of themselves and the patient or intend to base substituted judgments on documents with which they have little familiarity.

Professionalism in medical education: an institutional challenge.

Despite considerable attention to professionalism in medical education nationwide, the majority of attention has focused on training medical students, and less on residents and faculty. Curricular formats are often didactic, removed from the clinical setting, and frequently focus on abstract concepts. As a result of a recent curricular innovation at the University of Washington School of Medicine (UWSOM) in which role-model faculty work with medical students in teaching and modeling clinical skills and professionalism, a new professionalism curriculum was developed for preclinical medical students. Through student feedback, that curriculum has changed over time, and has become more focused on the clinical encounter. This new and evolving curriculum has raised awareness of the existence of an "ecology of professionalism." In this ecological model, changes in the understanding of and attention to professionalism at one institutional level lead to changes at other levels. At the UWSOM, heightened attention to professionalism at the medical student level led to awareness of the need for increased attention to teaching and modeling professionalism among faculty, residents, and staff. This new understanding of professionalism as an institutional responsibility has helped UWSOM teachers and administrators recognize and promote mechanisms that create a "safe" environment for fostering professionalism. In such an institutional culture, students, residents, faculty, staff, and the institution itself are all held accountable for professional behavior, and improvement must be addressed at all levels.