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We interviewed 71 surrogate decision makers of older, chronically ill veterans to explore their knowledge of hospice and their role in helping loved ones access hospice services. We asked them to describe hospice and any previous hospice experiences. Of the group, 24 percent with hospice experience and 14 percent without hospice experience correctly described three key aspects of hospice: who hospice cares for, where the care is provided, and the goal of the care. Additionally, we found evidence that surrogates who correctly described the three key aspects of hospice were inclined to pursue hospice care for loved ones in the future, and surrogates who provided less complete descriptions of hospice might not access it. Since surrogates often help dying patients access care, incomplete knowledge of hospice may be an important barrier to hospice services. We advocate that clinicians discuss the three key aspects of hospice during routine advance care planning sessions with patients and their future surrogate decision makers. [ABSTRACT FROM AUTHOR]

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.

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.

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.

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.

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.

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.

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.

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., ((c) 2008 S. Karger AG, Basel)

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.

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.

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.

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.

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.

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.

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.

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.

Professional competence requires a commitment to lifelong learning, self-assessment, and excellence. Complex skills such as these require flexible and comprehensive teaching and assessment measures. We describe a combination of working and performance portfolios that both foster and evaluate the development of professional competence. We explain the conceptual and practical underpinnings that maximize the effectiveness of these tools. Drawing on experience with University of Washington residents, we identify 5 criteria that can help promote successful use of portfolios: separate working and performance functions of portfolios, developing a supportive climate, developing skills in faculty and residents, observing progress over time, and fostering mentorship opportunities.

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.

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.

Purpose: To assess day-to-day emotions and the experiences that trigger these emotions for medical trainees in hospital settings. The overarching goal was to illuminate training experiences that affect professional behaviors of physicians., Method: This qualitative study, conducted April-June 2000, used semistructured, open-ended interviews, observations by a non-participant, and a self-report task at two inpatient services (internal medicine and pediatrics) at different hospitals within a single academic institution in the northwestern United States. Twelve team members, including medical students, interns, residents, and attendings, were invited to participate. Ten completed all aspects of the study. Interviews were conducted before and after a one-week period of non-participant observations and self-report tasks. The authors grouped emotional experiences into "positive" or "difficult" emotions. Data were analyzed for coherent themes using grounded theory and content analysis., Results: Positive emotions included gratitude, happiness, compassion, pride, and relief, and were triggered by connections with patients and colleagues, receiving recognition for one's labors, learning, being a part of modern medicine, and receiving emotional support from others. Difficult emotions included anxiety, guilt, sadness, anger, and shame and were triggered by uncertainty, powerlessness, responsibility, liability, lack of respect, and a difference in values. Tragedy and patients' suffering was the only trigger to elicit both positive (compassion) and difficult (sadness) emotions., Conclusion: This study identified common and important emotions experienced by medical trainees and the common triggers for these emotions. Understanding trainees' experiences of uncertainty, powerlessness, differing values, and lack of respect can guide education program designs and reforms to create an environment that fosters professional growth.