Patient experiences of resection versus responsive neurostimulation for drug-resistant epilepsy.

This study explored illness experiences and decision-making among patients with epilepsy who underwent two different types of surgical interventions: resection versus implantation of the NeuroPace Responsive Neurostimulation System (RNS). We recruited 31 participants from a level four epilepsy center in an academic medical institution. We observed 22 patient clinic visits (resection: n = 10, RNS: n = 12) and conducted 18 in-depth patient interviews (resection: n = seven, RNS: n = 11); most visits and interviews included patient caregivers. Using an applied ethnographic approach, we identified three major themes in the experiences of resection versus RNS patients. First, for patients in both cohorts, the therapeutic journey was circuitous in ways that defied standardized first-, second-, and third- line of care models. Second, in conceptualizing risk, resection patients emphasized the permanent loss of "taking out" brain tissue whereas RNS patients highlighted the reversibility of "putting in" a device. Lastly, in considering benefit, resection patients perceived their surgery as potentially curative while RNS patients understood implantation as primarily palliative with possible additional diagnostic benefit from chronic electrocorticography. Insight into the perspectives of patients and caregivers may help identify key topics for counseling and exploration by clinicians.

'It was a great brain, and I miss it': lay perspectives on postoperative cognitive dysfunction.

BACKGROUND: Postoperative cognitive dysfunction (POCD) is a concern after anaesthesia and surgery, but preoperative discussion of neurocognitive risks with older patients rarely occurs. Anecdotal experiences of POCD are common in the popular media and may inform patient perspectives. However, the degree of alignment between lay and scientific perspectives on POCD is not known. METHODS: We performed inductive qualitative thematic analysis on website user comments publicly submitted under an article entitled, 'The hidden long-term risks of surgery: "It gives people's brains a hard time"', published by the UK-based news source The Guardian in April 2022. RESULTS: We analysed 84 comments from 67 unique users. Themes that emerged from user comments included the importance of functional impact ('Couldn't work … even reading was a struggle'), attribution to a range of causes but particularly the use of general, rather than consciousness-preserving, anaesthesia techniques ('side effects aren't fully understood'), and inadequate preparation and response by healthcare providers ('I would have benefited by being warned'). CONCLUSIONS: There is misalignment between professional and lay understandings of POCD. Lay people emphasise subjective and functional impact of symptoms, and express beliefs about the role of anaesthetics in causing POCD. Some patients and caregivers affected by POCD report feeling abandoned by medical providers. In 2018, new nomenclature for postoperative neurocognitive disorders was published, which better aligns with lay perspectives by including subjective complaints and functional decline. Further studies based on newer definitions and public messaging may improve concordance between different understandings of this postoperative syndrome.

Perceptions of and Knowledge Acquisition about Brain Health and Aging among Latin American Immigrants:A QualitativePaper.

OBJECTIVES: Older immigrants of Latin American descent are disproportionately impacted by dementia, yet little is known about their dementia- and brain health-related knowledge. We explored perspectives on brain health and aging in this population to inform the development of culturally-relevant interventions. METHODS: Individual, semi-structured interviews were conducted with 30 Spanish-speaking immigrants over 60. Questions addressed knowledge about the brain, perceptions of healthy and unhealthy aging, ideas of how to take care of one's brain, and where knowledge was acquired. Responses were analyzed using thematic analysis. RESULTS: The following themes emerged: (1) Descriptions of the brain varied, from anatomy, cognition, and psychology to disease. (2) Perceptions of healthy aging included independence, memory, emotions, and orientation. (3) Ideas of how to care for the brain included physical, social, and cognitive engagement. (4) Knowledge was acquired in childhood, communities, healthcare settings, careers, and media. CONCLUSIONS: Results showed significant variability in knowledge. Findings may be leveraged to improve interventions that address brain health literacy disparities among older Latin American immigrants. CLINICAL IMPLICATIONS: Takeaways involve increasing education about the structure and functions of the brain, promoting realistic understandings of what nonnormative brain aging entails, and increasing knowledge of empirically-supported maintenance approaches. Dissemination may be increased via healthcare providers, community centers, churches, and media.

Understanding Experiences of Moral Distress in End-of-Life Care Among US and UK Physician Trainees: a Comparative Qualitative Study.

BACKGROUND: Moral distress is a state in which a clinician cannot act in accordance with their ethical beliefs because of external constraints. Physician trainees, who work within rigid hierarchies and who lack clinical experience, are particularly vulnerable to moral distress. We examined the dynamics of physician trainee moral distress in end-of-life care by comparing experiences in two different national cultures and healthcare systems. OBJECTIVE: We investigated cultural factors in the US and the UK that may produce moral distress within their respective healthcare systems, as well as how these factors shape experiences of moral distress among physician trainees. DESIGN: Semi-structured in-depth qualitative interviews about experiences of end-of-life care and moral distress. PARTICIPANTS: Sixteen internal medicine residents in the US and fourteen junior doctors in the UK. APPROACH: The work was analyzed using thematic analysis. KEY RESULTS: Some drivers of moral distress were similar among US and UK trainees, including delivery of potentially inappropriate treatments, a poorly defined care trajectory, and involvement of multiple teams creating different care expectations. For UK trainees, healthcare team hierarchy was common, whereas for US trainees, pressure from families, a lack of guidelines for withholding inappropriate treatments, and distress around physically harming patients were frequently cited. US trainees described how patient autonomy and a fear of lawsuits contributed to moral distress, whereas UK trainees described how societal expectations around resource allocation mitigated it. CONCLUSION: This research highlights how the differing experiences of moral distress among US and UK physician trainees are influenced by their countries' healthcare cultures. This research illustrates how experiences of moral distress reflect the broader culture in which it occurs and suggests how trainees may be particularly vulnerable to it. Clinicians and healthcare leaders in both countries can learn from each other about policies and practices that might decrease the moral distress trainees experience.

The Role of Spirituality in Conceptualizations of Health Maintenance and Healthy Aging Among Latin American Immigrants.

OBJECTIVES: We aimed to investigate ways in which spirituality was conceptualized in relationship to maintaining brain health and healthy aging in a cohort of older adults who immigrated to the United States from diverse regions of Latin America, in order to ultimately develop culturally-tailored brain health promotion approaches. DESIGN: We conducted a qualitative study using semi-structured interviews. SETTING: Participants were recruited from community centers and by a memory care center at a large academic medical center. PARTICIPANTS: We interviewed 30 Spanish-speaking immigrants over age 60. Questions addressed perspectives about the brain, aging, and dementia. Interviews were coded for themes. MEASUREMENTS: Thematic analysis was used to analyze participants' responses. RESULTS: We identified 5 themes: (1) expressing gratitude to God for mental and physical health, (2) putting the onus of life and death in God's hands, (3) using church as a place to socialize and build community as an approach to leading a healthy lifestyle, (4) using prayer as nourishment for the soul and the brain, and (5) gaining inner-peace and calm, and thus maintaining a healthy life, due to a connection with God. CONCLUSION: The incorporation of customized spiritual interventions may be a mechanism by which to increase the effectiveness of brain health promotion efforts.

How individual ethical frameworks shape physician trainees' experiences providing end-of-life care: a qualitative study.

OBJECTIVES: The end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care. DESIGN: We conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis. SETTING: Academic teaching hospitals in the United States and United Kingdom. PARTICIPANTS: We interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be associated with individual ethics (stage of training, gender and national healthcare context) in order to elicit a diversity of ethical and experiential perspectives. RESULTS: Some trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient's goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker. CONCLUSIONS: This study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians' ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care.

Patient and clinician perspectives on a patient-facing dashboard that visualizes patient reported outcomes in rheumatoid arthritis.

BACKGROUND: Poor patient-clinician communication around patient-reported outcomes (PROs) is a barrier to the effective management of rheumatoid arthritis (RA). We aimed to develop an RA 'dashboard' that could facilitate conversations about PROs and that would be acceptable to a wide range of patients, including English and Spanish speakers and patients with adequate or limited health literacy. METHODS: A diverse group of RA patients along with clinicians from two academic rheumatology clinics joined separate focus groups. We solicited feedback and made iterative changes to mock-ups of an RA dashboard that visualized PROs using a human-centred design process. We used the thematic analysis method to identify and characterize themes from the focus groups and used these insights to refine the dashboard. RESULTS: We conducted six focus groups involving 25 RA patients and three groups with 11 clinicians. Patients and clinicians agreed that the dashboard could enhance communication about PROs and RA disease activity and could promote patient self-management. Patients varied in their (a) comprehension, (b) preferences for the display and features of the dashboard, and (c) desired uses for the dashboard. Clinicians expressed significant concerns about the logistics of using the dashboard in clinical practice. CONCLUSION: Using principles of human-centred design, we created an RA dashboard that was well-accepted among patients and clinicians. The ability to customize the data display is important for tailoring the dashboard to patients with diverse needs and preferences. Special attention should be given to feasibility concerns voiced by clinicians.

Approaches to decision-making among late-stage melanoma patients: a multifactorial investigation.

PURPOSE: The treatment decisions of melanoma patients are poorly understood. Most research on cancer patient decision-making focuses on limited components of specific treatment decisions. This study aimed to holistically characterize late-stage melanoma patients' approaches to treatment decision-making in order to advance understanding of patient influences and supports. METHODS: (1) Exploratory analysis of longitudinal qualitative data to identify themes that characterize patient decision-making. (2) Pattern analysis of decision-making themes using an innovative method for visualizing qualitative data: a hierarchically-clustered heatmap. Participants were 13 advanced melanoma patients at a large academic medical center. RESULTS: Exploratory analysis revealed eight themes. Heatmap analysis indicated two broad types of patient decision-makers. "Reliant outsiders" relied on providers for medical information, demonstrated low involvement in decision-making, showed a low or later-in-care interest in clinical trials, and expressed altruistic motives. "Active insiders" accessed substantial medical information and expertise in their networks, consulted with other doctors, showed early and substantial interest in trials, demonstrated high involvement in decision-making, and employed multiple decision-making strategies. CONCLUSION: We identified and characterized two distinct approaches to decision-making among patients with late-stage melanoma. These differences spanned a wide range of factors (e.g., behaviors, resources, motivations). Enhanced understanding of patients as decision-makers and the factors that shape their decision-making may help providers to better support patient understanding, improve patient-provider communication, and support shared decision-making.

Development of an adaptive, personalized, and scalable dementia care program: Early findings from the Care Ecosystem.

Katherine Possin and colleagues report on the implementation, development, and early findings of the Care Ecosystem, an adaptive, personalized, and scalable dementia care program.

Interest in initiating an early phase clinical trial: results of a longitudinal study of advanced cancer patients.

OBJECTIVE: Enhanced recruitment of patients with advanced cancer (ACP) to early phase (EP) trials is needed. However, selective recruitment may affect the kinds of patients who are recruited. To address whether ACP who initiate EP trial enrollment differ from those who do not, we prospectively surveyed ACP well in advance of potential trial recruitment and followed them over time to identify those who initiated the recruitment process. METHODS: EP trial initiation was defined as a patient being referred for screening to an active EP trial. Depression and anxiety were assessed with the Patient Health Questionnaire (PHQ-9) and Generalized Anxiety Disorder Scale (GAD-7), respectively. Demographic and disease characteristics, functional status, and patient preferences regarding decision making were examined as possible predictors of EP trial initiation. RESULTS: Of the 78 advanced cancer patients in the cohort studied, 21 (27%) initiated EP trial participation, while 57 (73%) did not. Of those who initiated this process, 14 (67%) went on to enroll in an EP study. Level of depression severity was associated with EP trial initiation, with rates of initiation nearly three times higher (35% vs. 12%, p = 0.054) among patients with minimal to mild levels of depression compared to those with moderate or higher levels of depression. EP trial initiation was not associated with demographic or socioeconomic variables, cancer type, functional status, quality of life, or decision-making variables. CONCLUSIONS: The presence of elevated depressive symptoms may be associated with the EP trial recruitment and enrollment processes. This possible relationship warrants further study. Copyright © 2016 John Wiley & Sons, Ltd.

What advanced cancer patients with limited treatment options know about clinical research: a qualitative study.

PURPOSE: Discussions between oncologists and advanced cancer patients (ACPs) may touch on the complex issue of clinical trial participation. Numerous initiatives have sought to improve the quality of these potentially difficult conversations. However, we have limited data about what ACPs know about clinical research as they enter such discussions as, to date, such research has focused on the period following informed consent. This study examines ACPs' understanding of clinical research in the treatment period before consent. METHODS: We conducted in-depth interviews with adult ACPs with limited treatment options at four clinics in an academic medical center. So as not to influence patients' perspectives, interviewers probed patients' knowledge of clinical research only if the patient first brought up the topic. Interviews (40-60 min) were audio-recorded, transcribed, and analyzed thematically and via quantitative content analysis by an interdisciplinary team. RESULTS: Of 78 patients recruited, 56 (72%) spontaneously brought up the topic of clinical research during interview and are included in this analysis. Qualitative thematic analysis and quantitative content analysis revealed that patients' knowledge varied in terms of (1) accuracy and (2) specificity (level of detail). ACPs who spoke with high specificity were not always accurate, and ACPs with accurate knowledge included both high- and low-specificity speakers. CONCLUSIONS: ACPs' knowledge of clinical research is variable. Patients who can discuss the technical details of their care may or may not understand the broader purpose and procedures of clinical trials. Understanding this variability is important for improving patient-provider communication about clinical research and supporting efforts to provide individualized care for ACPs.

Developing a CKD registry in primary care: provider attitudes and input.

BACKGROUND: Chronic disease registries have been successful at promoting the delivery of guideline-concordant primary care for patients with diabetes and hypertension, but not for chronic kidney disease (CKD). To understand whether a registry could be designed to improve CKD management in primary care, we explored primary care provider attitudes about the benefits (or lack thereof) of a CKD registry compared with other chronic diseases and the key facilitators of successfully implementing a CKD registry in safety-net primary care. STUDY DESIGN: Qualitative, using semistructured interviews. SETTING & PARTICIPANTS: We conducted and recorded semistructured 1-hour interviews with medical directors and quality improvement champions from safety-net adult primary care clinics in San Francisco. ANALYTIC APPROACH: Recordings were transcribed and analyzed using a grounded theory approach until thematic saturation was achieved. RESULTS: 20 primary care providers were interviewed. 4 themes relevant to the development of a successful CKD registry for safety-net primary care were identified: (1) provider beliefs that a CKD registry could aid in the delivery of team-based high-quality CKD care; (2) clinic workflow redesign and staffing are key facilitators to successful implementation of a CKD registry; (3) unique complexities of CKD, such as varying etiologies, may limit the use of a CKD registry by nonphysicians; and (4) a CKD registry is aligned with current primary care priorities and health care delivery strategies. LIMITATIONS: Small sample size and reliance on clinician leaders within one health care delivery system. CONCLUSIONS: A CKD registry directed at the entire health care team, with the functionality to track, standardize, and enhance CKD care through decision support, has the potential to improve the management of CKD in safety-net primary care settings. These data directly informed the development of a CKD registry in these settings in San Francisco.

Primary care clinician perspectives on automated nephrology e-consults for diabetic kidney disease: a pre-implementation qualitative study.

BACKGROUND: Many patients with diabetic kidney disease (DKD) do not receive evidence-based, guideline-recommended treatment shown to reduce DKD progression and complications. Proactive electronic consultations (e-consults) are an emerging intervention strategy that could potentially allow nephrologists to provide timely and evidence-based guidance to primary care providers (PCPs) engaged in early DKD care. METHODS: The objective of this study was to explore perspectives about potential barriers and facilitators associated with a proactive e-consult program to improve DKD care delivery. We conducted semi-structured qualitative interviews with PCPs across three different health systems. Interview transcripts were reviewed in a rapid qualitative analysis approach to iteratively identify, refine, and achieve consensus on a final list of themes and subthemes. RESULTS: A total of 18 interviews were conducted. PCPs across all sites identified similar challenges to delivering guideline-recommended DKD care. PCPs were supportive of the proactive e-consult concept. Three major themes emerged surrounding (1) perceived potential benefits of proactive e-consults, including educational value and improved specialist access; (2) concerns about the proactive nature of e-consults, including the potential to increase PCP workload and the possibility that e-consults could be seen as documenting substandard care; and (3) leveraging of care teams to facilitate recommended DKD care, such as engaging clinic-based pharmacists to implement specialist recommendations from e-consults. CONCLUSION: In this pre-implementation qualitative study, PCPs noted potential benefits and identified concerns and implementation barriers for proactive e-consults for DKD care. Strategies that emerged for promoting successful implementation included involving clinic support staff to enact e-consult recommendations and framing e-consults as a system improvement effort to avoid judgmental associations.

Personal Social Networks and Care-Seeking for Head and Neck Cancer: A Qualitative Study.

OBJECTIVES: To investigate the role of patients' personal social networks (SNs) in accessing head and neck cancer (HNC) care through patients' and health care workers' (HCWs) perspectives. STUDY DESIGN: Qualitative study. SETTING: Tertiary HNC centers at 2 academic medical centers, including 1 safety net hospital. METHODS: Patients with newly diagnosed HNC, and HCWs caring for HNC patients, aged ≥18 years were recruited between June 2022 and July 2023. Semistructured interviews were conducted with both patients and HCWs. Inductive and deductive thematic analysis was performed with 2 coders (κ = 0.82) to analyze the data. RESULTS: The study included 72 participants: 42 patients (mean age 57 years, 64% female, 81% white), and 30 HCWs (mean age 42 years, 77% female, 83% white). Four themes emerged: (1) Patients' SNs facilitate care through various forms of support, (2) patients may hesitate to seek help from their networks, (3) obligations toward SNs may act as barriers to seeking care, and (4) the SN composition and dedication influence care-seeking. CONCLUSION: Personal SNs play a vital role in prompting early care-seeking among HNC patients. SN-based interventions could enhance care and improve outcomes for HNC patients.

Perspectives on Referral Pathways for Timely Head and Neck Cancer Care.

Importance: Timely diagnosis and treatment are of paramount importance for patients with head and neck cancer (HNC) because delays are associated with reduced survival rates and increased recurrence risk. Prompt referral to HNC specialists is crucial for the timeliness of care, yet the factors that affect the referral and triage pathway remain relatively unexplored. Therefore, to identify barriers and facilitators of timely care, it is important to understand the complex journey that patients undertake from the onset of HNC symptoms to referral for diagnosis and treatment. Objective: To investigate the referral and triage process for patients with HNC and identify barriers to and facilitators of care from the perspectives of patients and health care workers. Design, Participants, and Setting: This was a qualitative study using semistructured interviews of patients with HNC and health care workers who care for them. Participants were recruited from June 2022 to July 2023 from HNC clinics at 2 tertiary care academic medical centers in Boston, Massachusetts. Data were analyzed from July 2022 to December 2023. Main Outcomes and Measures: Themes identified from the perspectives of both patients and health care workers on factors that hinder or facilitate the HNC referral and triage process. Results: In total, 72 participants were interviewed including 42 patients with HNC (median [range] age, 60.5 [19.0-81.0] years; 27 [64%] females) and 30 health care workers (median [range] age, 38.5 [20.0-68.0] years; 23 [77%] females). Using thematic analysis, 4 major themes were identified: the HNC referral and triage pathway is fragmented; primary and dental care are critical for timely referrals; efficient interclinician coordination expedites care; and consistent patient-practitioner engagement alleviates patient fear. Conclusions and Relevance: These findings describe the complex HNC referral and triage pathway, emphasizing the critical role of initial symptom recognition, primary and dental care, patient information flow, and interclinician and patient-practitioner communication, all of which facilitate prompt HNC referrals.

Clinical trial discussion, referral, and recruitment: physician, patient, and system factors.

PURPOSE: Patient participation in cancer clinical trials is imperative to the advancement of medical science. Physicians play an important role in recruitment by discussing clinical trials with their cancer patients. Patient-physician discussion is influenced by many factors relating to the physician, the patient, and the healthcare system. METHODS: Physicians selected from the 2008-2009 American Medical Association Physician Masterfile who practiced in California, Florida, Illinois, or New York and specialized in medical oncology, surgery, or radiation oncology were surveyed about their attitudes and practices with respect to breast cancer clinical trials. Practice types were categorized according to the classifications provided by the American College of Surgeons, and clinical trial and practice addresses were geocoded. RESULTS: Surveys were completed by 706 of 1,534 eligible physicians (46 %). Medical oncologists were more likely than surgical or radiation oncologists to discuss the possibility, benefits, and risks of clinical trial enrollment with their breast cancer patients. Physicians who spent the most time in patient care were least likely to discuss clinical trials with their patients. Distance from a physician's practice to the nearest clinical trial site was inversely associated with referral and recruitment. Perceived barriers to clinical trial participation were associated with greater referral activity suggesting that physicians who were more involved in trials were also more likely to understand barriers to participation. CONCLUSIONS: Multilevel interventions may be successful at increasing participation of women in clinical trials.

Alternative decision-makers' perspectives on assent and dissent for dementia research.

OBJECTIVES: Investigators generally address the ethical dilemma of patients' decisional impairment in Alzheimer disease (AD) research by obtaining consent from alternative or surrogate decision makers ("proxies") as well as assent from patients. How these proxies conceptualize patient assent, or lack of objection, to participate may influence decisions made of the patients' behalf, but has been little studied. This report examines statements of proxies relevant to how they conceptualized assent and dissent to research. DESIGN: Surveys and in-depth interviews of proxies presented with hypothetical scenario related to enrolling relatives with AD in a clinical trial of an investigational drug for AD. PARTICIPANTS: Proxies (n = 25) for people with AD. MEASUREMENTS: Open-ended and rating-scaled items assessing perspectives on enrollment in research, influences on decision-making, and willingness to override a relative's preferences regarding research participation. Statements with relevance to assent or dissent were coded. RESULTS: Proxies described looking for consistent behavioral or verbal indications of assent versus objection when trying to determine patients' preferences. However, proxies sometimes expressed willingness to override patients' desires in favor of patients' presumed best interests. The amnestic nature of the disorder led some proxies to justify overriding temporary dissent or discomfort in the interest of promoting patients' values. Patients' dependence on their caregivers for decision-making, and caregivers' awareness of their ability to persuade their relatives, also emerged in descriptions of the decision-making process. CONCLUSIONS: Proxies' statements regarding a hypothetical research enrollment decision revealed several themes with implications for the concepts of assent and dissent. Proxies may persuade or influence patients to promote the patient's best interests or values. Further work, particularly examining actual decision-making, is warranted to determine how best to operationalize the concepts of assent and dissent in the context of research involving decisionally impaired adults.

"Thinking about it for somebody else": Alzheimer's disease research and proxy decision makers' translation of ethical principles into practice.

OBJECTIVES: Ethical guidelines suggest that, when enrolling patients with dementia in research, alterative decision makers (proxies) should base their decision on a "substituted judgment" of how the patient would have decided. If unable to make a substituted judgment, proxies are asked to decide on the basis of the patient's best interests. This mixed-methods study is the first to examine explicitly whether and to what degree proxies differentiate between these two approaches and what considerations influence their mode of decision making. DESIGN: Interview study regarding enrollment of relative in hypothetical clinical trial of an investigational drug for Alzheimer disease. Participants were randomized to respond to questions about one of four hypothetical clinical trials that differed by levels of described risk and potential benefit. PARTICIPANTS: Proxy decision makers (N = 40). MEASUREMENTS: Open-ended and rating-scaled items. RESULTS: Half of the proxies agreed with both of two rating-scaled items asking about different approaches to decision making-that is, agreeing that they would decide on the basis of how their relative would have decided and agreeing that they would decide on the basis of what they believed was in their relative's best interests. Narrative responses elaborated on themes within the following three major domains: Substituted judgment, best interests, and weighing substituted judgment and best interests. Substituted judgment was framed as honoring the patient's wishes and values. Best interests was described as a perceived duty to maintain quality of life and avoid burdens or risks. Weighing the two standards emerged as a challenging yet important, way of honoring wishes while maintaining quality of life. An unexpected theme was the attempt by alternative decision makers to discern their loved one's current versus premorbid research preferences. CONCLUSIONS: Tensions exist between abstract ethical principles regarding decision-making "standards" and their translation into research decisions.

Recognition as a patient-centered medical home: fundamental or incidental?

PURPOSE: Little is known about reasons why a medical group would seek recognition as a patient-centered medical home (PCMH). We examined the motivations for seeking recognition in one group and assessed why the group allowed recognition to lapse 3 years later. METHODS: As part of a larger mixed methods case study, we conducted 38 key informant interviews with executives, clinicians, and front-line staff. Interviews were conducted according to a guide that evolved during the project and were audio-recorded and fully transcribed. Transcripts were analyzed and thematically coded. RESULTS: PCMH principles were consistent with the organization's culture and mission, which valued innovation and putting patients first. Motivations for implementing specific PCMH components varied; some components were seen as part of the organization's patient-centered culture, whereas others helped the practice compete in its local market. Informants consistently reported that National Committee for Quality Assurance recognition arose incidentally because of a 1-time incentive from a local group of large employers and because the organization decided to allocate some organizational resources to respond to the complex reporting requirements for about one-half of its clinics. CONCLUSIONS: Becoming patient centered and seeking recognition as such ran along separate but parallel tracks within this organization. As the Affordable Care Act continues to focus attention on primary care redesign, this apparent disconnect should be borne in mind.

Hospital Culture and Intensity of End-of-Life Care at 3 Academic Medical Centers.

Importance: There is substantial institutional variability in the intensity of end-of-life care that is not explained by patient preferences. Hospital culture and institutional structures (eg, policies, practices, protocols, resources) might contribute to potentially nonbeneficial high-intensity life-sustaining treatments near the end of life. Objective: To understand the role of hospital culture in the everyday dynamics of high-intensity end-of-life care. Design, Setting, and Participants: This comparative ethnographic study was conducted at 3 academic hospitals in California and Washington that differed in end-of-life care intensity based on measures in the Dartmouth Atlas and included hospital-based clinicians, administrators, and leaders. Data were deductively and inductively analyzed using thematic analysis through an iterative coding process. Main Outcome and Measure: Institution-specific policies, practices, protocols, and resources and their role in the everyday dynamics of potentially nonbeneficial, high-intensity life-sustaining treatments. Results: A total of 113 semistructured, in-depth interviews (66 women [58.4%]; 23 [20.4%] Asian, 1 [0.9%] Black, 5 [4.4%] Hispanic, 7 [6.2%] multiracial, and 70 [61.9%] White individuals) were conducted with inpatient-based clinicians and administrators between December 2018 and June 2022. Respondents at all hospitals described default tendencies to provide high-intensity treatments that they believed were universal in US hospitals. They also reported that proactive, concerted efforts among multiple care teams were required to deescalate high-intensity treatments. Efforts to deescalate were vulnerable to being undermined at multiple points during a patient's care trajectory by any individual or entity. Respondents described institution-specific policies, practices, protocols, and resources that engendered broadly held understandings of the importance of deescalating nonbeneficial life-sustaining treatments. Respondents at different hospitals reported different policies and practices that encouraged or discouraged deescalation. They described how these institutional structures contributed to the culture and everyday dynamics of end-of-life care at their institution. Conclusions and Relevance: In this qualitative study, clinicians, administrators, and leaders at the hospitals studied reported that they work in a hospital culture in which high-intensity end-of-life care constitutes a default trajectory. Institutional structures and hospital cultures shape the everyday dynamics by which clinicians may deescalate end-of-life patients from this trajectory. Individual behaviors or interactions may fail to mitigate potentially nonbeneficial high-intensity life-sustaining treatments if extant hospital culture or a lack of supportive policies and practices undermine individual efforts. Hospital cultures need to be considered when developing policies and interventions to decrease potentially nonbeneficial, high-intensity life-sustaining treatments.