Integrating Perspectives on Family Caregiving After Critical Illness: A Qualitative Content Analysis.

BACKGROUND: To date, no intervention has definitively improved outcomes for families of critical illness survivors. An integrated perspective on caregivers' needs after critical illness could help identify high-priority intervention targets and improve outcomes. OBJECTIVES: To obtain diverse perspectives on the needs, barriers and facilitators, and social determinants of health associated with family caregiving across the critical illness continuum and assess the extent to which successful caregiving interventions in other populations may be adapted to the critical illness context. METHODS: This qualitative content analysis of 31 semistructured interviews and 10 focus groups with family caregivers, health care providers, and health care administrators explored family caregivers' needs during post- intensive care unit (ICU) transitions and the barriers and facilitators associated with addressing them. Trained coders analyzed transcripts, identified patterns and categories among the codes, and generated themes. RESULTS: Caregivers have 3 instrumental needs: formal and informal support, involvement in care planning, and education and training. Only caregivers described their self-care and mental health needs. Social determinants of health are the key barriers and facilitators shaping the caregivers' journey, and caregiving as a social determinant of health was a prominent theme. CONCLUSIONS: Caregivers have instrumental, self-care, and mental health needs after critical illness. Adapting hands-on and skills training interventions to the post-ICU setting, while tailoring interventions to caregivers' health-related social context, may improve caregiver outcomes.

Palliative Care in Survivors of Critical Illness: A Qualitative Study of Post-Intensive Care Unit Program Clinicians.

Background: Survivors of critical illness experience high rates of serious health-related suffering. The delivery of palliative care may assist in decreasing this burden for survivors and their families. Objectives: To understand beliefs, attitudes, and experiences of post-intensive care unit (ICU) program clinicians regarding palliative care and explore barriers and facilitators to incorporating palliative care into critical illness survivorship care. Design: Qualitative inquiry using semistructured interviews and framework analysis. Results were mapped using the Consolidated Framework for Implementation Research. Setting/Subjects: We interviewed 29 international members (United States, United Kingdom, Canada) of the Critical and Acute Illness Recovery Organization post-ICU clinic collaborative. Results: All interprofessional clinicians described components of palliative care as essential to post-ICU clinic practice, including symptom management, patient/family support, facilitation of goal-concordant care, expectation management and anticipatory guidance, spiritual support, and discussion of future health care wishes and advance care planning. Facilitators promoting palliative care strategies were clinician level, including first-hand experience, perceived value, and a positive attitude regarding palliative care. Clinician-level barriers were reciprocals and included insufficient palliative care knowledge, lack of self-efficacy, and a perceived need to protect ICU survivors from interventions the clinician felt may adversely affect recovery or change the care trajectory. System-level barriers included time constraints, cost, and lack of specialty palliative care services. Conclusion: Palliative care may be an essential element of post-ICU clinic care. Implementation efforts focused on tailoring strategies to improve post-ICU program clinicians' palliative care knowledge and self-efficacy could be a key to enhanced care delivery for survivors of critical illness.

Examining the needs of survivors of critical illness through the lens of palliative care: A qualitative study of survivor experiences.

OBJECTIVE: To examine the needs of adult survivors of critical illness through a lens of palliative care. RESEARCH METHODOLOGY: A qualitative study of adult survivors of critical illness using semi-structured interviews and framework analysis. SETTING: Participants were recruited from the post-intensive care unit clinic of a mid-Atlantic academic medical center in the United States. FINDINGS: Seventeen survivors of critical illness aged 34-80 (median, 66) participated in the study. The majority of patients were female (64.7 %, n = 11) with a median length of index ICU stay of 12 days (interquartile range [IQR] 8-19). Interviews were conducted February to March 2021 and occurred a median of 20 months following the index intensive care stay (range, 13-33 months). We identified six key themes which align with palliative care principles: 1) persistent symptom burden; 2) critical illness as a life-altering experience; 3) spiritual changes and significance; 4) interpreting/managing the survivor experience; 5) feelings of loss and burden; and 6) social support needs. CONCLUSION: Our findings suggest that palliative care components such as symptom management, goals of care discussions, care coordination, and spiritual and social support may assist in the assessment and treatment of survivors of critical illness.

Association Between Shared Decision-Making During Family Meetings and Surrogates' Trust in Their ICU Physician.

BACKGROUND: Although trust is central to successful physician-family relationships in ICUs, little is known about how to promote surrogates' trust of ICU physicians in this setting. RESEARCH QUESTION: Does the conduct of family conferences and physicians' use of shared decision-making (SDM) within family conferences impact surrogates' trust in the physician? STUDY DESIGN AND METHODS: A mixed-methods secondary analysis was done of a multicenter prospective cohort study of 369 surrogate decision-makers of 204 decisionally incapacitated patients at high risk of death or severe functional impairment within 13 ICUs at six US medical centers between 2008 and 2012. Surrogates completed the Abbreviated Wake Forest Physician Trust Scale (range, 5-25) before and after an audio-recorded family conference conducted within 5 days of ICU admission. We qualitatively coded transcribed conferences to determine physicians' use of five SDM behaviors: discussing surrogate's role, explaining medical condition and prognosis, providing emotional support, assessing understanding, and eliciting patient's values and preferences. Using multivariable linear regression with adjustment for clustering, we assessed whether surrogates' trust in the physician increased after the family meeting; we also examined whether the number of SDM behaviors used by physicians during the family meeting impacted trust scores. RESULTS: In adjusted models, conduct of a family meeting was associated with increased trust (average change, pre- to post family meeting: 0.91 point [95% CI, 0.4-1.4; P < .01]). Every additional element of SDM used during the family meeting, including discussing surrogate's role, providing emotional support, assessing understanding, and eliciting patient's values and preferences, was associated with a 0.37-point increase in trust (95% CI, 0.08-0.67; P = .01). If all four elements were used, trust increased by 1.48 points. Explaining medical condition or prognosis was observed in nearly every conference (98.5%) and was excluded from the final model. INTERPRETATION: The conduct of family meetings and physicians' use of SDM behaviors during meetings were both associated with increases in surrogates' trust in the treating physician.

Social determinants of recovery.

PURPOSE OF REVIEW: The purpose of this review is to examine evidence describing the influence of social determinants on recovery following hospitalization with critical illness. In addition, it is meant to provide insight into the several mechanisms through which social factors influence recovery as well as illuminate approaches to addressing these factors at various levels in research, clinical care, and policy. RECENT FINDINGS: Social determinants of health, ranging from individual factors like social support and socioeconomic status to contextual ones like neighborhood deprivation, are associated with disability, cognitive impairment, and mental health after critical illness. Furthermore, many social factors are reciprocally related to recovery wherein the consequences of critical illness such as financial toxicity and caregiver burden can put essential social needs under strain turning them into barriers to recovery. SUMMARY: Recovery after hospitalization for critical illness may be influenced by many social factors. These factors warrant attention by clinicians, health systems, and policymakers to enhance long-term outcomes of critical illness survivors.

The Prevalence of Spiritual and Social Support Needs and Their Association With Postintensive Care Syndrome Symptoms Among Critical Illness Survivors Seen in a Post-ICU Follow-Up Clinic.

OBJECTIVES: Spiritual and social support may be key facilitators for critical illness recovery and are identified as high priority for research. Understanding the prevalence of spiritual and social support needs in critical illness survivors may guide development of targeted interventions for support, which, in turn, may improve critical illness survivor quality of life. To characterize unmet spiritual and social support needs in critical illness survivors approximately 1 month after hospital discharge and examine the association of these needs with postintensive care syndrome (PICS)-related symptom burden. DESIGN: Retrospective, cross-sectional study. SETTING: University-affiliated hospital in Pittsburgh, PA. PATIENTS: One hundred ninety-six consecutive adult critical illness survivors seen during an initial post-ICU clinic visit from June 2018 to March 2020. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Patient-reported clinical outcome measures assessing spiritual and social support needs and PICS-related symptoms were extracted from the electronic health record. Patients had a median age of 61 (interquartile range [IQR], 51-68.5), and majority were male (55.1%) with a moderate comorbidity burden (Charlson comorbidity index median score, 3; IQR, 2-5). Social support and spiritual needs were prevalent. Of the 196 patients, over 50% reported unpreparedness/fearful for the future, half of patients reported not feeling in control of their care, and over one-third reported needing more support than their family, friends, or insurance can provide. Nearly 13% of respondents reported feeling abandoned or punished by God/not supported by their church/faith. Many patients reported overlapping PICS-related symptom domains (physical, psychologic, and cognitive). Univariate and multivariate analyses revealed associations between reported PICS-related symptoms and the presence of spiritual and social needs. CONCLUSIONS: Patients surviving critical illness experience significant social support and spiritual needs independent of commonly identified manifestations of PICS. These findings support the need for formal assessment and tailored interventions for social support and spiritual needs in critical illness survivors.

COVID-19 and the Early-Career Physician-Scientist. Fostering Resilience beyond the Pandemic.

The coronavirus disease (COVID-19) pandemic has created significant stressors for the academic and scientific community, with unique challenges for early-career physician-scientists. The pandemic-related disruptions have significantly affected research productivity, access to mentoring, professional development and networking opportunities, funding, and personal wellness. This is especially true for pulmonary and critical care medicine faculty because of the burden of specialized clinical care responsibilities that the COVID-19 pandemic has demanded. Departmental, institutional, and national leadership should foster open dialogue to identify and mitigate these challenges to promote ongoing career development of early-career physician-scientists. Implementation of thoughtful interventions to address these challenges will provide essential support for junior faculty and help retain a generation of physician-scientists.

Post-Intensive Care Unit Care. A Qualitative Analysis of Patient Priorities and Implications for Redesign.

Rationale: Although survival during critical illness is improving, little evidence exists to guide post-intensive care unit (ICU) care. Understanding patients' needs and priorities is fundamental to improving care quality.Objectives: To describe the evolution of patients' priorities for recovery across the spectrum of post-ICU care.Methods: This was a secondary analysis of 39 semistructured interviews conducted from 2005 to 2006 in participants' homes 19 days to 11 years after hospital discharge after critical illness. Adult critical illness survivors (N = 39) aged 20 years or older from multiple ICUs across the United Kingdom were purposively selected to maximize diversity with respect to time since diagnosis, disease severity, sex, age, ethnicity, socioeconomic group/status, region. age, ICU admitting diagnoses, and length of stay. We used the method of qualitative description to characterize patients' priorities for recovery and their evolution within and between individual patients across three post-ICU periods: ICU transition to wards, early period (approximately the first 2 mo) after discharge to home, and late period (>2 mo) after discharge to home.Results: The analysis revealed 12 core patient priorities during recovery: feeling safe, being comfortable, engaging in mobility, participating in self-care, asserting personhood, connecting with people, ensuring family well-being, going home, restoring psychological health, restoring physical health, resuming previous roles and routines, and seeking new life experiences. In general, priorities evolved from those pertaining to basic survival during the stay on wards to being broader and more aspirational by the late postdischarge period.Conclusions: Understanding patients' priorities for post-ICU care is critical for developing stakeholder-driven clinical guidelines. Engaging other stakeholders (e.g., family members, healthcare providers, and institutionalized and frail older adults) to inform the development of clinical guidelines for post-ICU care, together with the barriers and facilitators faced in achieving patient- and family-centered care, is an important next step.

Clinician-Family Communication About Patients' Values and Preferences in Intensive Care Units.

Importance: Little is known about whether clinicians and surrogate decision makers follow recommended strategies for shared decision making by incorporating intensive care unit (ICU) patients' values and preferences into treatment decisions. Objectives: To determine how often clinicians and surrogates exchange information about patients' previously expressed values and preferences and deliberate and plan treatment based on these factors during conferences about prognosis and goals of care for incapacitated ICU patients. Design, Setting, and Participants: A secondary analysis of a prospective, multicenter cohort study of audiorecorded clinician-family conferences between surrogates and clinicians of 249 incapacitated, critically ill adults was conducted. The study was performed between October 8, 2009, and October 23, 2012. Data analysis was performed between July 2, 2014, and April 20, 2015. Patient eligibility criteria included lack of decision-making capacity, a diagnosis of acute respiratory distress syndrome, and predicted in-hospital mortality of 50% or more. In addition to the patients, 451 surrogates and 144 clinicians at 13 ICUs at 6 US academic and community medical centers were included. Main Outcomes and Measures: Two coders analyzed transcripts of audiorecorded conversations for statements in which clinicians and surrogates exchanged information about patients' treatment preferences and health-related values and applied them in deliberation and treatment planning. Results: Of the 249 patients, 134 (54.9%) were men; mean (SD) age was 58.2 (16.5) years. Among the 244 conferences that addressed a decision about goals of care, 63 (25.8%; 95% CI, 20.3%-31.3%) contained no information exchange or deliberation about patients' values and preferences. Clinicians and surrogates exchanged information about patients' values and preferences in 167 (68.4%) (95% CI, 62.6%-74.3%) of the conferences and specifically deliberated about how the patients' values applied to the decision in 108 (44.3%; 95% CI, 38.0%-50.5%). Important end-of-life considerations, such as physical, cognitive, and social functioning or spirituality were each discussed in 87 (35.7%) or less of the conferences; surrogates provided a substituted judgment in 33 (13.5%); and clinicians made treatment recommendations based on patients' values and preferences in 20 conferences (8.2%). Conclusions and Relevance: Most clinician-family conferences about prognosis and goals of care for critically ill patients appear to lack important elements of communication about values and preferences, with robust deliberation being particularly deficient. Interventions may be needed to better prepare surrogates for these conversations and improve clinicians' communication skills for eliciting and incorporating patients' values and preferences into treatment decisions.

Development and Pilot Testing of a Simulation to Study How Physicians Facilitate Surrogate Decision Making Based on Critically Ill Patients' Values and Preferences.

CONTEXT: There are no evidence-based programs to train physicians to facilitate shared decision making based on incapacitated intensive care unit patients' values and preferences. OBJECTIVES: The objective of this study was to develop a high-fidelity simulation to fill this gap. METHODS: Case development involved six steps: 1) drafting a case about an elderly patient receiving prolonged mechanical ventilation; 2) engaging an expert advisory board to optimize case content; 3) revising the case based on advisory board input; 4) training actors to portray the case patient's daughter; 5) obtaining physician feedback on the simulation; and 6) revising the case based on their feedback. We conducted a cross-sectional pilot study with 50 physicians to assess feasibility and acceptability, defined a priori as an enrollment rate >40 physicians/year, study procedures <75 minutes/participant, >95% actor adherence to standardization rules, and high physician ratings of realism and acceptability. RESULTS: Advisory panel feedback yielded two modifications: 1) refocusing the case on decision making about tracheostomy and percutaneous gastrostomy and 2) making the patient's values more authentic. Physician feedback yielded two additional modifications: 1) reducing how readily the actor divulged the patient's values and 2) making her more emotional. All 50 physicians enrolled in the pilot study over 11 months completed study procedures in <75 minutes. Actor adherence to standardization rules was 95.8%. Physicians' mean ratings of realism and acceptability were 8.4 and 9.1, respectively, on a 10-point scale. CONCLUSION: Simulation is feasible, is acceptable, and can be adequately standardized to study physicians' skills for facilitating surrogate decision making based on an incapacitated intensive care unit patient's values and preferences.

How do clinicians prepare family members for the role of surrogate decision-maker?

PURPOSE: Although surrogate decision-making (SDM) is prevalent in intensive care units (ICUs) and concerns with decision quality are well documented, little is known about how clinicians help family members understand the surrogate role. We investigated whether and how clinicians provide normative guidance to families regarding how to function as a surrogate. SUBJECTS AND METHODS: We audiorecorded and transcribed 73 ICU family conferences in which clinicians anticipated discussing goals of care for incapacitated patients at high risk of death. We developed and applied a coding framework to identify normative statements by clinicians regarding what considerations should guide surrogates' decisions, including whether clinicians explained one or more of Buchanan and Brock's three standard principles of SDM to family members. RESULTS: Clinicians made at least one statement about how to perform the surrogate role in 24 (34%) conferences (mean of 0.83 statements per conference (1.77; range 0-9)). We observed three general types of normative guidance provided to surrogates, with some conferences containing more than one type of guidance: counselling about one or more standard principles of SDM (24% of conferences); counselling surrogates to make decisions centred on the patient as a person, without specifying how to accomplish that (14% of conferences); and counselling surrogates to make decisions based on the family's values (8% of conferences). CONCLUSIONS: Clinicians did not provide normative guidance about the surrogate role in two-thirds of family conferences for incapacitated patients at high risk for death. When they did, clinicians' guidance was often incomplete and sometimes conflicted with standard principles of SDM. Future work is needed to understand whether providing explicit guidance on how to perform the surrogate role improves decision-making or mitigates surrogates' psychological distress.

An Integrated Framework for Effective and Efficient Communication with Families in the Adult Intensive Care Unit.

The increased focus on patient and family-centered care in adult intensive care units (ICUs) has generated multiple platforms for clinician-family communication beyond traditional interdisciplinary family meetings (family meetings)-including family-centered rounds, bedside or telephone updates, and electronic family portals. Some clinicians and administrators are now using these platforms instead of conducting family meetings. For example, some institutions are moving toward using family-centered rounds as the main platform for clinician-family communication, and some physicians rely on brief daily updates to the family at the bedside or by phone, in lieu of family meetings. We argue that although each of these platforms is useful in some circumstances, there remains an important role for family meetings. We outline five goals of clinician-family communication-establishing trust, providing emotional support, conveying clinical information, understanding the patient as a person, and facilitating careful decision making-and we examine the extent to which various communication platforms are likely to achieve the goals. We argue that because no single platform can achieve all communication goals, an integrated strategy is needed. We present a model that integrates multiple communication platforms to effectively and efficiently support families across the arc of an ICU stay. Our framework employs bedside/telephone conversations and family-centered rounds throughout the admission to address high informational needs, along with well-timed family meetings that attend to families' emotions as well as patients' values and goals. This flexible model uses various communication platforms to achieve consistent, efficient communication throughout the ICU stay.