Mechanical Ventilation in Older Adults With Dementia: Opportunities to Promote Goal-Concordant Care.

CONTEXT: Recent studies show increasing use of mechanical ventilation among people living with dementia. There are concerns that this trend may not be driven by patient preferences. OBJECTIVES: To better understand decision-making regarding mechanical ventilation in people living with dementia. METHODS: This was an electronic health record-based retrospective cohort study of older adults with dementia (n = 295) hospitalized at one of two teaching hospitals between 2015 and 2019 who were supported with mechanical ventilation (n = 191) or died without mechanical ventilation (n = 104). Multivariable logistic regression was used to examine associations between patient characteristics and mechanical ventilation use. RESULTS: The median age was 78 years (IQR 71-86), 41% were female, 28% resided in a nursing home, and 58% had clinical markers of advanced dementia (dehydration, weight loss, mobility limitations, or pressure ulcers). Among patients supported with mechanical ventilation, 70% were intubated within 24 hours of presentation, including 31% intubated before hospital arrival. Younger age, higher illness acuity, and absence of a treatment-limiting Physician Orders for Life-Sustaining Treatment document were associated with mechanical ventilation use; nursing home residence and clinical markers of advanced dementia were not. Most patients (89%) had a documented goals of care discussion (GOCD) during hospitalization. CONCLUSION: Future efforts to promote goal-concordant care surrounding mechanical ventilation use for people living with dementia should involve identifying barriers to goal-concordant care in pre-hospital settings, assessing the timeliness of in-hospital GOCD, and developing strategies for in-the-moment crisis communication across settings.

Achieving Goals of Care Decisions in Chronic Critical Illness: A Multi-Institutional Qualitative Study.

BACKGROUND: Physicians, patients, and families alike perceive a need to improve how goals of care (GOC) decisions occur in chronic critical illness (CCI), but little is currently known about this decision-making process. RESEARCH QUESTION: How do intensivists from various health systems facilitate decision-making about GOC for patients with CCI? What are barriers to, and facilitators of, this decision-making process? STUDY DESIGN AND METHODS: We conducted semistructured interviews with a purposeful sample of intensivists from the United States and Canada using a mental models approach adapted from decision science. We analyzed transcripts inductively using qualitative description. RESULTS: We interviewed 29 intensivists from six institutions. Participants across all sites described GOC decision-making in CCI as a complex, longitudinal, and iterative process that involved substantial preparatory work, numerous stakeholders, and multiple family meetings. Intensivists required considerable time to collect information on prior events and conversations, and to arrive at a prognostic consensus with other involved physicians prior to meeting with families. Many intensivists stressed the importance of scheduling multiple family meetings to build trust and relationships prior to explicitly discussing GOC. Physician-identified barriers to GOC decision-making included 1-week staffing models, limited time and cognitive bandwidth, difficulty eliciting patient values, and interpersonal challenges with care team members or families. Potential facilitators included scheduled family meetings at regular intervals, greater interprofessional involvement in decisions, and consistent messaging from care team members. INTERPRETATION: Intensivists described a complex time- and labor-intensive group process to achieve GOC decision-making in CCI. System-level interventions that improve how information is shared between physicians and decrease logistical and relational barriers to timely and consistent communication are key to improving GOC decision-making in CCI.

Palliative care, homelessness, and restricted or uncertain immigration status.

Background: People experiencing homelessness have limited access to palliative care support despite high levels of ill health and premature mortality. Most research exploring these challenges in the United Kingdom has focused on people living in hostels or temporary accommodation. People with uncertain or restricted immigration status are often unable to access this accommodation due to lack of entitlement to benefits. There is little research about the experiences of those in the United Kingdom who cannot access hostels or temporary accommodation due to restricted or uncertain immigration status with regards to palliative and end-of-life care access. Aim: To explore the barriers to palliative and end-of-life care access for people with uncertain or restricted immigration status, who are experiencing homelessness and have advanced ill health, and the experiences of UK hospices of supporting people in this situation. Design: A multi-method cross-sectional study. Setting/participants: An online survey for hospice staff followed by online focus groups with staff from inclusion health, homelessness and palliative care services, charities and interviews with people experiencing homelessness. Results: Fifty hospice staff responded to the online survey and 17 people participated in focus groups and interviews (focus groups: n = 10; interviews: n = 7). The survey demonstrated how hospices are not currently supporting many people with restricted or uncertain immigration status who are homeless and that hospice staff have received limited training around eligibility for entitlements or National Health Service (NHS) care. Interview and focus group data demonstrated high levels of unmet need. Reasons for this included a lack of consistency around eligibility for support from local authorities, issues relating to NHS charging, and mistrust and limited knowledge of the UK health and social care system. These barriers leave many people unable to access care toward the end of their lives. Conclusion: To advocate for and provide compassionate palliative and end-of-life care for people with uncertain immigration status, there is need for more legal literacy, with training around people's entitlement to care and support, as well as easier access to specialist legal advice.

Palliative care, homelessness and restricted or uncertain immigration status Most research from the UK about access to support at the end of life for people who are homeless has looked at the experiences of people who are staying in hostels or temporary accommodation. People that are not UK nationals are not entitled to the benefit which pays for hostel or temporary accommodation. There is a group of people in the UK who are very unwell, who are homeless and are not able to access hostel accommodation due to their immigration status. This project explored the experiences of this group around access to palliative care. We spoke to professionals from health and social care services, charities and local councils and people who are in this situation themselves. Hospice staff were also surveyed to see if they had experience of supporting people in this situation. The survey showed that hospices are not currently supporting many people with restricted or uncertain immigration status who are homeless, and that they have limited training around supporting people in this situation. In the interviews and focus groups, opinions were heard about challenges to palliative care support for people with uncertain or restricted immigration status who were experiencing homelessness. Professionals described how it can be hard to obtain support from local authorities, and also understanding rules about who has to pay to receive NHS care. People with uncertain or restricted immigration status who were also homeless did not always know how to access the UK health and social care system and had negative experiences of doing so in the past. As a result, many people are unable to access care towards the end of their lives. To provide compassionate palliative and end-of-life care for people with uncertain immigration status, there is need for more legal literacy, with training around people's entitlement to care and support, as well as easier access to specialist legal advice.

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.

"No Escalation of Treatment" Designations: A Multi-institutional Exploratory Qualitative Study.

BACKGROUND: No Escalation of Treatment (NoET) designations are used in ICUs internationally to limit treatment for critically ill patients. However, they are the subject of debate in the literature and have not been qualitatively studied. RESEARCH QUESTION: How do physicians understand and perceive NoET designations, especially regarding their usefulness and associated challenges? What mechanisms do hospitals provide to facilitate the use of NoET designations? STUDY DESIGN AND METHODS: Qualitative study at seven US hospitals, employing semistructured interviews with 30 physicians and review of relevant institutional records (eg, hospital policies, screenshots of ordering menus in the electronic health record). RESULTS: At all hospitals, participants reported the use of NoET designations, which were understood to mean that providers should withhold new or higher-intensity interventions ("escalations") but not withdraw ongoing interventions. Three hospitals provided a specific mechanism for designating a patient as NoET (eg, a DNR/Do Not Escalate code status order); at the remaining hospitals, a variety of informal methods (eg, verbal hand-offs) were used. We identified five functions of NoET designations: (1) Defining an intermediate point of treatment limitation, (2) helping physicians navigate prearrest clinical decompensations, (3) helping surrogate decision-makers transition toward comfort care, (4) preventing patient harm from invasive measures, and (5) conserving critical care resources. Across hospitals, participants reported implementation challenges related to the ambiguity in meaning of NoET designations. INTERPRETATION: Despite ongoing debate, NoET designations are used in a varied sample of hospitals and are perceived as having multiple functions, suggesting they may fulfill an important need in the care of critically ill patients, especially at the end of life. The use of NoET designations can be improved through the implementation of a formal mechanism that encourages consistency across providers and clarifies the meaning of "escalation" for each patient.

Perceptions of specialty palliative care and its role in pediatric stem cell transplant: A multidisciplinary qualitative study.

BACKGROUND: Consultation of specialty palliative care remains uncommon in pediatric stem cell transplant (SCT) despite growing evidence that early integration of palliative care improves outcomes in patients with advanced cancers or undergoing SCT. Little is known about how multidisciplinary pediatric SCT teams perceive palliative care and its role in SCT. PROCEDURE: We conducted semistructured interviews of members of a multi-disciplinary SCT team to understand their perceptions of palliative care, how specialty palliative care is integrated into SCT, and to identify barriers to increased integration. Eligible participants included physicians, nurses, inpatient nurse practitioners, social workers, and child life specialists. Data were analyzed using thematic analysis. RESULTS: Four major themes were identified. First, SCT team members held a favorable perception of the palliative care team. Second, participants desired increased palliative care integration in SCT. Third, participants believed that the palliative care team had insufficient resources to care for the large number of SCT patients, which led to the SCT team limiting palliative care consultation. And, finally, the lack of a standardized palliative care consultation process prevented greater integration of palliative care in SCT. CONCLUSIONS: SCT team members held a favorable perception of palliative care and saw a role for greater palliative care integration throughout the SCT course. We identified modifiable barriers to greater palliative care integration. SCT teams who desire greater palliative care integration may adapt and implement an existing model of palliative care integration in order to improve standardization and increase integration of specialty palliative care in SCT.

An Interprofessional Process for the Limitation of Life-Sustaining Treatments at the End of Life in France.

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.

Spheres of Influence and Strategic Advocacy for Equity in Medicine.

As the extent of health disparities in the USA has been revealed, particularly during the COVID-19 pandemic, physicians have increasingly attended to their roles as advocates for their patients and communities. This article presents "spheres of influence" as a concept that can help physicians think strategically about how to build upon their clinical work and expertise to promote equity in medicine. The physician's primary sphere of influence is in direct patient care. However, physicians today often have many other roles, especially within larger health care institutions in which physicians often occupy positions of authority. Physicians are therefore well-positioned to act within these spheres in ways that draw upon the ethical principles that guide patient care and contribute materially to the cause of equity for colleagues and patients alike. By making changes to the ways they already work within their clinical spaces, institutional leadership roles, and wider communities, physicians can counteract the structural problems that undermine the health of the patients they serve.

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.

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.

Variation in the design of Do Not Resuscitate orders and other code status options: a multi-institutional qualitative study.

BACKGROUND: US hospitals typically provide a set of code status options that includes Full Code and Do Not Resuscitate (DNR) but often includes additional options. Although US hospitals differ in the design of code status options, this variation and its impacts have not been empirically studied. DESIGN AND METHODS: Multi-institutional qualitative study at 7 US hospitals selected for variability in geographical location, type of institution and design of code status options. We triangulated across three data sources (policy documents, code status ordering menus and in-depth physician interviews) to characterise the code status options available at each hospital. Using inductive qualitative methods, we investigated design differences in hospital code status options and the perceived impacts of these differences. RESULTS: The code status options at each hospital varied widely with regard to the number of code status options, the names and definitions of code status options, and the formatting and capabilities of code status ordering menus. DNR orders were named and defined differently at each hospital studied. We identified five key design characteristics that impact the function of a code status order. Each hospital's code status options were unique with respect to these characteristics, indicating that code status plays differing roles in each hospital. Physician participants perceived that the design of code status options shapes communication and decision-making practices about resuscitation and life-sustaining treatments, especially at the end of life. We identified four potential mechanisms through which this may occur: framing conversations, prompting decisions, shaping inferences and creating categories. CONCLUSIONS: There are substantive differences in the design of hospital code status options that may contribute to known variability in end-of-life care and treatment intensity among US hospitals. Our framework can be used to design hospital code status options or evaluate their function.