Search

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.

Context: The provision of potentially non-beneficial life-sustaining treatments (LSTs) remains a challenging problem. In 2005, legislation in France established an interprofessional process by which non-beneficial LSTs could be withheld or withdrawn, permitting exploration of the effects of such a legally-protected process and its implementation., Objectives: To characterize intensive care unit (ICU) interprofessional team decision-making and consensus-building practices regarding withholding and withdrawing of LSTs in two Parisian hospitals and to explore physician and nurse perceptions of and experiences with these practices., Methods: This was an exploratory qualitative study utilizing thematic analysis of semi-structured, in-depth interviews of physicians and nurses purposively sampled based on level of training and experience from two hospitals in Paris, France., Results: A total of 25 participants were interviewed. Participants reported that the two Parisian hospitals in this study have each created an interprofessional process for withholding or withdrawing non-beneficial LSTs, providing insight into how norms of decision-making respond to systems-level legal changes. Participants reported that these processes tended to be consistent across several domains: maintaining unified messaging with patients, empowering nurses to participate in end-of-life decision-making, reducing moral distress provoked by end-of-life decisions, and shaping the ethical milieu within which end-of-life decision-making takes place., Conclusions: The architecture of the interprofessional process created at two Parisian hospitals and its perceived benefits may be useful to clinicians and policy-makers attempting to establish processes, policies, or legislation directed at withholding or withdrawing potentially non-beneficial LSTs in the United States and elsewhere., (Copyright © 2021 American Academy of Hospice and Palliative Medicine. All rights reserved.)

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., (© 2020. Society of General Internal Medicine.)

Objectives: To elicit decisions that diverse older adults and surrogates perceive as serious, difficult, or important and explore what helped them make those decisions., Design: Focus groups (N=13) in which participants were asked to recall serious, difficult, or important medical decisions and what helped them make those decisions., Setting: Clinics, support groups and senior centers., Participants: Diverse English- and Spanish-speaking older adults (age: mean 78, range 64-89) and surrogates (age: mean 57, range 33-76) (29% African American, 26% white, 26% Asian or Pacific Islander, 19% Hispanic) (N=69)., Measurements: We used thematic analysis to analyze transcripts., Results: We identified 168 decisions. Older adults from all racial and ethnic groups frequently recalled cancer treatment decisions and decisions about chronic illness management. Surrogates described decisions about transitions in care and medical crises. Older adults valued self-sufficiency and maximizing survival and relied on personal experiences as often as medical advice. In all racial and ethnic groups, surrogates valued avoiding suffering for loved ones., Conclusion: Diverse older adults and surrogates perceive life-threatening illness and day-to-day decisions about chronic disease to be serious, difficult, and important. The surrogates' goal of avoiding suffering of older adults may differ from older adults' priorities of self-sufficiency and maximizing survival. Clinicians should support older adults and surrogates in identifying important and difficult decisions and learn about the values and information sources they bring to decision-making. With this knowledge, clinicians can customize decision support and achieve person-centered care., (© 2018, Copyright the Authors Journal compilation © 2018, The American Geriatrics Society.)

Context: The American Medical System is programmed to a default setting of aggressive care for the terminally ill. Institutional norms of decision making have been shown to promote high-intensity care, regardless of consistency with patient preferences. There are myriad factors at a system, clinician, surrogate, and patient level that drive the culture of overly aggressive treatments in American hospitals., Objective: The objective of this study was to understand physician perspective of the ways systems-level factors influence patient, physician, and surrogate perceptions and consequent behavior., Methods: Semi-structured in-depth qualitative interviews with 42 internal medicine physicians across three American academic medical centers were conducted. This qualitative study was exploratory in nature, intended to enhance conceptual understanding of underlying phenomena that drive physician attitudes and behavior., Results: The interviews revealed many factors that contributed to overly aggressive treatments at the end of life. Systemic factors, which describe underlying cultures (including institutional, professional, or community-based cultures), typical practices of care, or systemic defaults that drive patterns of care, manifested its influence both directly and through its impact on patient, surrogate, and physician behaviors and attitudes., Conclusion: Institutional cultures, social norms, and systemic defaults influence both normative beliefs regarding standards of care and treatments plans that may not benefit seriously ill patients., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Although numerous studies have addressed external factors associated with difficulty in surrogate decision making, intrapersonal sources of tension are an important element of decision making that have received little attention., Objective: To characterize key intrapersonal tensions experienced by surrogate decision makers in the intensive care unit (ICU), and explore associated coping strategies., Design: Qualitative interview study., Participants: Thirty surrogates from five ICUs at two hospitals in Pittsburgh, Pennsylvania, who were actively involved in making life-sustaining treatment decisions for a critically ill loved one., Approach: We conducted in-depth, semi-structured interviews with surrogates, focused on intrapersonal tensions, role challenges, and coping strategies. We analyzed transcripts using constant comparative methods., Key Results: Surrogates experience significant emotional conflict between the desire to act in accordance with their loved one's values and 1) not wanting to feel responsible for a loved one's death, 2) a desire to pursue any chance of recovery, and 3) the need to preserve family well-being. Associated coping strategies included 1) recalling previous discussions with a loved one, 2) sharing decisions with family members, 3) delaying or deferring decision making, 4) spiritual/religious practices, and 5) story-telling., Conclusions: Surrogates' struggle to reconcile personal and family emotional needs with their loved ones' wishes, and utilize common coping strategies to combat intrapersonal tensions. These data suggest reasons surrogates may struggle to follow a strict substituted judgment standard. They also suggest ways clinicians may improve decision making, including attending to surrogates' emotions, facilitating family decision making, and eliciting potential emotional conflicts and spiritual needs.