Background and PurposeSevere acute brain injury (SABI) often occurs suddenly, profoundly impacting patients and their families. During the ICU stay, critical treatment decisions have to be made in the setting of prognostic uncertainty. We aimed to better understand the experiences of surrogate decision makers (SDMs) specifically regarding longer-term treatment decisions such as tracheostomy, gastrostomy, and withdrawal of life-sustaining treatment (WLST).MethodsWe interviewed SDMs of adult patients admitted between 2021 and 2022 with SABI (traumatic brain injury or stroke) who were initially mechanically ventilated and either underwent tracheostomy or WLST after 7 days. We developed an interview guide in collaboration with five SDMs for former patients to explore the ICU experience and reflections on treatment decisions. SDMs were contacted 12-36 months post-SABI. Common themes were identified after a review of transcripts by six authors.ResultsAfter contacting the primary caregivers for 18 eligible patients, six SDMs consented to participate. Interviewees included SDMs to four patients who underwent tracheostomy and two who died after a decision to pursue WLST; median time from hospital discharge to interview was 29 months. SDMs expressed sources of struggle in the decision-making process including the novelty of the role, perceived time pressure to make decisions, and prognostic uncertainty. Post-acute discharge needs were also unanticipated and overwhelming.ConclusionThe reflections from SDMs highlighted the significant multifaceted difficulties experienced by SDMs of patients with SABI. More research is needed to understand how to best support those who support our patients.
Key PointsBehavioral nudging can activate nephrologists to adopt new behaviors around discussing conservative kidney management with patients.Conservative kidney management Jumpstart is a nudge that offers nephrologists a framework and words-to-try to discuss health care values and conservative kidney management with patients.Conservative Kidney Management Jumpstart nudged nephrologists to discuss values and conservative kidney management with patients and revealed persistent challenges with these discussions.BackgroundNephrologists do not routinely discuss conservative kidney management (CKM) with their patients, hindering informed decision-making about kidney failure treatments. Nudges are interventions that facilitate behavior change and may assist nephrologists with discussing CKM.MethodsWe designed a behavioral nudge, called CKM Jumpstart, to assist nephrologists with discussing CKM with their patients. CKM Jumpstart was developed using human-centered design principles in 3 phases: (1) Discovery (March-June 2022): literature review and deliberation about the challenges to discussing CKM with an advisory panel; (2) Design (June-December 2022): multiple cycles of prototyping of CKM Jumpstart with input from the advisory panel and ten nephrologists across the United States; and (3) Implementation (April 2023-July 2025): testing a final version of CKM Jumpstart in 36 clinic visits with 19 nephrologists recruited from the greater Seattle area and conducting qualitative interviews with nephrologists about their experiences using CKM Jumpstart.ResultsIn the Discovery phase, we identified four major challenges to discussing CKM: (1) attitudes favoring dialysis as the norm; (2) lack of clarity about patients' health care values; (3) difficulty describing CKM; and, (4) fear of upsetting patients. The Design phase produced a prototype of CKM Jumpstart that addressed these challenges by providing a communication framework and example language that nephrologists could try to discuss patients' health care values and CKM. During the Implementation phase, all the nephrologists tried CKM Jumpstart at least once and were nudged to have conversations about values, CKM, and/or kidney failure treatment options more broadly. Nephrologists selectively used parts of CKM Jumpstart that suited their communication style. Some felt conversations occurred too early in patients' disease course and were uncertain about how to address conflicting values and treatment preferences.ConclusionsBehavioral nudging assists nephrologists with discussing health care values and CKM with patients. It can also reveal persistent challenges with having these discussions among nephrologists.Clinical Trial registry name and registration number:A Pilot Study of The CKM JumpStart Tool, NCT05753020.
Despite numerous calls to action, palliative care remains inadequately integrated into pulmonary-critical care medicine (PCCM) practice and is de-emphasized in PCCM education. Barriers to specialty palliative care demonstrate a clear need for efficient and effective primary palliative care delivered by PCCM clinicians with advanced training. This American Thoracic Society Workshop Report builds on our policy statement on the proactive integration of palliative care in serious respiratory illness with 2 goals: (1) Develop a scalable "PalliPulm" framework to improve palliative care education and practice in PCCM and (2) inform palliative care-focused education and training programs in PCCM to guide future initiatives. We convened an interdisciplinary and interprofessional group of experts between May 2024 and February 2025 over 4 phases: (1) hybrid workshop; (2) virtual breakout groups; (3) nominal group technique and rapid qualitative analysis; and (4) workshop report development. We identified core primary palliative care skills that PCCM trainees and clinicians should obtain and prioritized the most essential skills-that is, symptom management, serious illness communication, and caregiver support in ambulatory settings and serious illness communication, symptom management, palliative care fundamentals, and end of life care in inpatient settings. We describe pragmatic ways to integrate palliative care into PCCM education and offer advanced educational resources. We provide recommendations for framing palliative care to patients and caregivers, illustrate ways to deliver culturally appropriate palliative care, and offer a path for the future of PalliPulm. This report guides PCCM leaders, trainees, and clinicians to establish scalable PalliPulm educational and practice initiatives and improve its integration into practice.
BACKGROUND:It is difficult for patients to make informed decisions about kidney failure unless they know all their treatment options. Conservative management is an important option infrequently presented alongside other kidney failure treatments by nephrologists. METHODS:We conducted a randomized pilot trial testing the feasibility and acceptability of a communication tool, called Conservative Kidney Management Jumpstart Tool, in assisting nephrologists with discussing conservative management with their patients. We recruited patients aged ≥75 years with stage 4 or 5 chronic kidney disease in the greater Seattle area between April 2023-May 2025. Patients were randomized in 1:1 fashion to either their nephrologists receiving the Tool to use with them at their next clinic visit (intervention) or usual care (control). Our primary outcome and feasibility measure was patient-reported discussion of conservative management during the clinic visit. Our secondary outcome and acceptability measure was change in patients' satisfaction with their nephrologist's serious illness communication skills (using the Quality of Communication Scale, with higher scores indicating higher quality) before and after the visit. We performed an intent-to-treat analysis of the primary endpoint using a chi-square test. We used paired-samples t-tests to assess within-patient changes in the secondary endpoint. RESULTS:We randomized 74 patients (age 80±1, 19% women, 69% White) to either the control (n=37) or intervention (n=37) group. Patients whose nephrologists received the Tool were more likely to discuss conservative management during their clinic visit (60% vs. 19%, p=0.001) than patients in the control group. Patients whose nephrologists received the Tool rated their nephrologist's communication skills at 7.5±2.1 before the visit and 9.0±1.7 after the visit (p<0.001) as compared with 7.8±1.9 and 7.9±1.8 (p=0.54), respectively, among patients in the control group. CONCLUSIONS:The Tool was feasible and acceptable to patients, promoting patient-nephrologist discussion of conservative management and improving patients' satisfaction with their nephrologist's communication skills.
While guidelines recommend that families of critically ill patients receive emotional support from intensive care unit (ICU) clinicians, few receive it. To address this gap, we designed the Family Perspectives Project, an intervention that utilizes hospital chaplains to enhance the emotional support that ICU teams provide to families. This study's objective was to refine and preliminarily test the feasibility and acceptability of the intervention. The work occurred in two steps. First, we conducted qualitative interviews with stakeholders (n = 12) to refine the proposed intervention and design. Second, we conducted a single-arm feasibility study of the refined intervention in one ICU (9 patient-family dyads) and assessed feasibility and acceptability with validated measures on participant surveys. The intervention was delivered with high fidelity. Chaplains provided emotional support to families and created structured reports about family perspectives that clinicians reviewed. Participants found the intervention feasible and acceptable. A larger pilot randomized trial is warranted.
BACKGROUND There is a need to improve shared decision making about goals of care (GOC) for patients with chronic critical illness (CCI). Understanding the mental models that inform how physicians approach GOC decisions in CCI is necessary to improve shared decision making. RESEARCH QUESTIONS What factors prompt physicians to revisit existing GOC decisions for patients with CCI and influence their judgments of appropriate GOC in CCI? How do external health system factors, including access to long-term ventilator facilities, influence physicians’ mental models about GOC in CCI? STUDY DESIGN AND METHODS: We conducted semi-structured interviews with a purposive sample of intensivists in the United States and Canada. We used a mental models approach from the field of decision science to identify the factors that these intensivists described as influencing their judgments of appropriate goals of care in CCI and when to revisit goals of care. RESULTS We interviewed 29 physicians from six institutions with varying access to long-term ventilator facilities. The primary factors that physicians described as influencing their personal judgments about GOC in CCI and their decisions to initiate new GOC discussions were an illness trajectory that remained flat over days to weeks, especially with limited apparent potential for a good functional outcome and acceptable quality of life. Increased access to long-term ventilator facilities was perceived to delay or defer GOC decisions. Other external influences included institutional norms and priorities regarding high-intensity treatments, patient turnover, and use of palliative care. INTERPRETATION In this qualitative interview study, physicians described predictions about future quality of life and functional outcome as central to initiating and resolving decisions about goals of care in CCI. Greater awareness of functional and quality of life outcomes in CCI, as well as how health system factors influence physician mental models may improve GOC decision-making in chronic critical illness.
For patients with serious illnesses, goals of care conversations improve quality of life and patient and family satisfaction and may reduce healthcare costs. However, these conversations often happen late in a serious illness or not at all. To better integrate goals of care into routine clinical practice, health systems across the country have implemented initiatives to increase and document these conversations. In this article, we describe the landscape of goals of care initiatives across eight large health systems in the U.S. and identify core elements for effective programs: 1) Defining the purpose of the initiative; 2) identifying the target patient population using patient diagnoses, artificial intelligence algorithms, or length of stay; 3) engaging key stakeholders, including patient, caregiver, frontline provider, and leadership; 4) encouraging the conversation through clinician and patient education and electronic health record (EHR) prompts; 5) documenting conversations within the EHR; 6) measuring data by building EHR and information technology infrastructure; and 7) planning for sustainability and scalability through leadership and funding support. These core elements can help inform how health systems plan goals of care initiatives, build infrastructure, and garner support to successfully implement these initiatives.
BACKGROUND:Natural language processing allows efficient extraction of clinical variables and outcomes from electronic health records (EHRs). However, measuring pragmatic clinical trial outcomes may demand accuracy that exceeds natural language processing performance. Combining natural language processing with human adjudication can address this gap, yet few software solutions support such workflows. We developed a modular, scalable system for natural language processing-screened human abstraction to measure the primary outcomes of two clinical trials. METHODS:In two clinical trials of hospitalized patients with serious illness, a deep-learning natural language processing model screened electronic health record passages for documented goals-of-care discussions. Screen-positive passages were referred for human adjudication using a REDCap-based system to measure the trial outcomes. Dynamic pooling of passages using structured query language within the REDCap database reduced unnecessary abstraction while ensuring data completeness. RESULTS:In the first trial (N = 2512), natural language processing identified 22,187 screen-positive passages (0.8%) from 2.6 million electronic health record passages. Human reviewers adjudicated 7494 passages over 34.3 abstractor-hours to measure the cumulative incidence and time to first documented goals-of-care discussion for all patients with 92.6% patient-level sensitivity. In the second trial (N = 617), natural language processing identified 8952 screen-positive passages (1.6%) from 559,596 passages at a threshold with near-100% sensitivity. Human reviewers adjudicated 3509 passages over 27.9 abstractor-hours to measure the same outcome for all patients. DISCUSSION:We present the design and source code for a scalable and efficient pipeline for measuring complex electronic health record-derived outcomes using natural language processing-screened human abstraction. This implementation is adaptable to diverse research needs, and its modular pipeline represents a practical middle ground between custom software and commercial platforms.
BACKGROUND:Older adults frequently experience acute and long-term cognitive impairment following critical illness hospitalization in an intensive care unit (ICU). Delirium affects up to 80% of ICU patients and is linked to cognitive dysfunction and increased risk of cognitive decline associated with Alzheimer's disease and related dementias (ADRD). Sleep and circadian rhythm disturbances are present in about 75%-80% of ICU patients and may exacerbate delirium and undermine cognitive interventions. Nonpharmacological interventions such as earplugs, eye masks, and computerized cognitive training show promise in reducing delirium and improving sleep but have not been rigorously tested-separately or combined-in older adult ICU survivors. Moreover, prior studies have not leveraged chronotherapeutic timing to align cognitive training with individual circadian rhythms. OBJECTIVES:We propose a multimodal combination of sleep promotion intervention [SLEEP] and computerized cognitive training program timed daily according to individual chronotype [COG], to improve cognitive function in hospitalized older adult ICU survivors. The primary aim is to test the feasibility, acceptability, and preliminary separate and combined effects of SLEEP and COG [SLEEP, COG, SLEEP+COG] versus an active control condition [AC] in improving cognitive function after the intervention period. The secondary aims are to explore (1) circadian rhythm parameters of continuous body temperature to determine the optimal window for chronotherapeutic timing of cognitive interventions; (2) if the effects of each intervention on cognitive function are mediated by sleep and activity; (3) if biopsychosocial and clinical factors moderate the effects of each intervention on cognitive function; and (4) the effects of each intervention on cognitive function at 1, 6, and 12 months. METHODS:After discharge from ICU, English- or Spanish-speaking older adult ICU survivors ( n =100) are randomly assigned to 7 days of (1) SLEEP, (2) COG, (3) SLEEP+COG, or (4) AC. Cognitive function, delirium severity, sleep and circadian rhythms, patient-reported symptoms, and data regarding biopsychosocial and clinical factors are collected. RESULTS:Results are pending study completion. DISCUSSION:We aim to target sleep and circadian rhythm disturbances, mitigate ICU delirium, and reduce cognitive decline associated with ADRD. If hypotheses are supported, this combination of low-cost, nonpharmacological interventions could be integrated into standard care to accelerate cognitive recovery during hospitalization.
RATIONALE: For staff in adult ICUs, providing family-centered care is an essential skill that affects important outcomes for both patients and families. The COVID-19 pandemic placed unprecedented strain on care of ICU families, and practices for family engagement and support are still adjusting. OBJECTIVES: To review updated evidence for family support in adult ICUs, provide clear recommendations, and spotlight optimal family-centered care practices post-pandemic. PANEL DESIGN: The multiprofessional guideline panel of 28 individuals, including family member partners, applied the processes described in the Society of Critical Care Medicine Standard Operating Procedures Manual to develop and publish evidence-based recommendations in alignment with the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) approach. Conflict-of-interest policies were strictly followed in all phases of the guidelines, including panel selection, writing, and voting. METHODS: The guidelines consist of four content sections: engagement of families, support of family needs, communication support, and support of ICU clinicians providing family-centered care. We conducted systematic reviews for 15 Population, Intervention, Control, and Outcomes questions, organized among these content sections, to identify the best available evidence. We summarized and assessed the certainty of evidence using the GRADE approach. We used the GRADE evidence-to-decision framework to formulate recommendations as strong or conditional, or as best practice statements where appropriate. The recommendations were approved using an online vote requiring greater than 80% agreement of voting panel members to pass. RESULTS: Our panel issued 17 statements related to optimal family-centered care in adult ICUs, including one strong recommendation, 14 conditional recommendations, and two best practice statements. We reaffirmed the critical importance of liberalized family presence policies as default practice when possible and suggested options for family attendance on rounds and participation in bedside care. We suggested that ICUs provide support for families in the form of educational programs; ICU diaries; and mental health, bereavement, and spiritual support. We suggested the importance of providing structured communication for families and communication training for clinicians but did not recommend for or against any specific clinician-facing tools for family support or decision aids, based on current available evidence. We recommended that adult ICUs implement practices to systematically identify and reduce barriers to equitable critical care delivery for families and suggested that programs designed to support the wellbeing of clinicians responsible for family support be developed. CONCLUSIONS: Our guideline panel achieved consensus regarding recommendations and best practices for family-centered care in adult ICUs.
BACKGROUND:Emergency Medical Services (EMS) providers, capable of rapidly delivering life-prolonging interventions, are often first to respond to acute health concerns for older adults in the United States. Prior work has shown a preference among many people with dementia for comfort-focused care near end-of-life. People with dementia frequently use EMS; however, little is known about communication surrounding treatment preferences during EMS response for this group. METHODS:We conducted a qualitative content analysis of EMS incident reports for older adults with dementia transported to two urban academic hospitals (2011-2021). We identified eligible patients in the hospital electronic health record applying the following criteria: age ≥ 65, diagnosis code indicating dementia, assessment by EMS, hospitalization between 2011 and 2021, and National Early Warning Score ≥ 7 indicating critical illness. We characterized the frequency and content of documented patient treatment preferences in EMS incident reports and identified barriers and facilitators to communication about treatment preferences or goal-concordant care. RESULTS:We reviewed incident reports for 171 patients with a median age of 82 (IQR 12) years. About half (51%) of the patients were residing in nursing homes. A minority (23%) of the patients were described as able to communicate needs, and only 24% had a family member or friend present at the time of EMS assessment. Treatment preferences were mentioned in 27% of the reports. EMS providers documented barriers to communication or delivery of goal-concordant care in nursing home settings that included difficulty obtaining information from professional caregivers, receiving secondhand information, and variable role expectations. Goal-concordant care was facilitated in these settings when EMS providers spoke directly with patients' family members by telephone. CONCLUSIONS:EMS providers treating critically ill older adults with dementia face challenges that may hinder their ability to elicit treatment preferences, in particular when responding to calls from professional caregivers. Direct communication with surrogate decision-makers may facilitate goal-concordant care.
Background Critical care guidelines recommend that clinicians provide emotional support to families of critically ill patients during family meetings. Little is known about how family member race impacts how emotions are expressed and supported in meetings. Research Question Are there differences in family members' expression of emotion and clinicians' provision of empathy in ICU family meetings involving Black and White family members? Study Design and Methods We conducted a directed content analysis of 40 audio-recorded meetings, matching 20 meetings with Black families and 20 meetings with White families on key characteristics including meeting length. Meetings included Black or White family members of patients receiving prolonged mechanical ventilation and critical care clinicians. We used an established coding scheme to code family expressions of negative emotion and clinician empathic statements. Two analysts, unaware of patient and family race, independently coded all meetings. After coding completion, we unmasked the data, compared code frequencies by family race, and calculated the percent of expressions of negative emotions followed by an empathic response. Results Family members were mostly middle-aged (mean [SD], 50 [10] years) and women (n = 29 [73%]). Physicians leading meetings were mostly young (mean [SD], 38 [7] years), men (n = 27 [68%]), and White (n = 36 [90%]); none were Black. Black families expressed fewer negative emotions than White families (median, 1 [interquartile range, 0-3] vs 4 [interquartile range, 2.5-7.5] expressions of emotions per meeting; P < .001). When families expressed negative emotions, clinicians infrequently responded with empathy to all families and did so less frequently with Black families compared with White families (15% vs 30% of family expressions; P = .099). Interpretation Our results indicate that racial differences exist in family expression of emotion and potentially in clinician empathic responses in ICU family meetings. Empathic communication warrants improvement, with greater improvement needed with Black families. Future interventions may be needed to enhance clinician provision of equitable emotional support.
BackgroundAdvance care planning (ACP) helps older adults make end-of-life medical decisions. While ACP discussions are associated with improved patient outcomes, overall engagement remains low in the emergency department (ED).ObjectivesThis study assessed ACP engagement in older ED patients.MethodsWe conducted a questionnaire study among adults ≥65 in a Boston ED (July-Oct 2023). Our primary outcome was ACP Engagement as measured by a validated 9-item instrument with three ACP self- efficacy and six ACP readiness questions. Secondary outcomes included participants' preferences for learning about five ACP topics in the ED-medical decision makers, what matters most, leeway and flexibility for decision makers, sharing wishes, and asking questions)-as well as their favored learning formats (eg, pamphlets, videos, clinician conversations). Each was rated on a 5-point Likert scale. We examined the relationship between ACP engagement and existing electronic health record (EHR) documentation.ResultsNinety-nine older adults participated (mean age 75.5; 53.5% women). On the 9-item ACP Engagement Survey, participants reported high overall scores with a mean of 4.1 (95% CI: 4.0-4.2). Among ACP readiness topics, 80 (81.6%) named a decision-maker; 37 (40.2%) discussed end-of-life wishes with doctors. Participants preferred ED team conversations. Among the 51 participants who reported having signed paperwork regarding end-of-life wishes, only 7 (13.7%) had forms documented in the EHR.ConclusionsAmong older adults in a large Boston-based ED, ACP engagement was high, but few patients had documentation of end-of-life wishes available in the EHR. Findings highlight the need for better ACP documentation in EDs.
KEY POINTS:Behavioral nudging can activate nephrologists to adopt new behaviors around discussing conservative kidney management with patients. Conservative kidney management Jumpstart is a nudge that offers nephrologists a framework and words-to-try to discuss health care values and conservative kidney management with patients. Conservative Kidney Management Jumpstart nudged nephrologists to discuss values and conservative kidney management with patients and revealed persistent challenges with these discussions. BACKGROUND:Nephrologists do not routinely discuss conservative kidney management (CKM) with their patients, hindering informed decision-making about kidney failure treatments. Nudges are interventions that facilitate behavior change and may assist nephrologists with discussing CKM. METHODS:We designed a behavioral nudge, called CKM Jumpstart, to assist nephrologists with discussing CKM with their patients. CKM Jumpstart was developed using human-centered design principles in 3 phases: ( 1 ) Discovery (March-June 2022): literature review and deliberation about the challenges to discussing CKM with an advisory panel; ( 2 ) Design (June-December 2022): multiple cycles of prototyping of CKM Jumpstart with input from the advisory panel and ten nephrologists across the United States; and ( 3 ) Implementation (April 2023-July 2025): testing a final version of CKM Jumpstart in 36 clinic visits with 19 nephrologists recruited from the greater Seattle area and conducting qualitative interviews with nephrologists about their experiences using CKM Jumpstart. RESULTS:In the Discovery phase, we identified four major challenges to discussing CKM: ( 1 ) attitudes favoring dialysis as the norm; ( 2 ) lack of clarity about patients' health care values; ( 3 ) difficulty describing CKM; and, ( 4 ) fear of upsetting patients. The Design phase produced a prototype of CKM Jumpstart that addressed these challenges by providing a communication framework and example language that nephrologists could try to discuss patients' health care values and CKM. During the Implementation phase, all the nephrologists tried CKM Jumpstart at least once and were nudged to have conversations about values, CKM, and/or kidney failure treatment options more broadly. Nephrologists selectively used parts of CKM Jumpstart that suited their communication style. Some felt conversations occurred too early in patients' disease course and were uncertain about how to address conflicting values and treatment preferences. CONCLUSIONS:Behavioral nudging assists nephrologists with discussing health care values and CKM with patients. It can also reveal persistent challenges with having these discussions among nephrologists. CLINICAL TRIAL REGISTRY NAME AND REGISTRATION NUMBER:A Pilot Study of The CKM JumpStart Tool, NCT05753020 .
Objective: To characterize the sensitivity and predictive value of predefined search terms for identifying documented goals-of-care discussions in health records of hospitalized patients with serious illness. Methods: We evaluated the performance of 30 previously published and investigator-defined search terms codified into regular expressions (a type of pattern-based text search) in detecting goals-of-care documentation in a 2974-note corpus of electronic health record notes belonging to 159 inpatients enrolled in a U.S. clinical trial over 2020-2021. Results: Compared to conventional chart abstraction, search terms for "goals of care" and synonyms such as "GOC" had poor sensitivity (range: 29.5-38.3%) and modest positive predictive value (PPV; range: 48.3-61.7%) for identifying notes with goals-of-care documentation. Combinations of search terms demonstrated modest performance (sensitivity 62.0%, PPV 59.4%, F1 0.61) but fell short of more complex natural language processing models. Conclusion: In certain contexts, predefined regular-expression-based search terms may have suboptimal sensitivity and predictive value for identifying documented goals-of-care discussions.
CONTEXT:Use of palliative care in extracorporeal life support (ECLS) has increased, but its impact on patient- and family-centered outcomes remains unclear. OBJECTIVE:To examine the relationship between specialty palliative care and patient- and family-centered outcomes for patients receiving ECLS. METHODS:We conducted a systematic review of PubMed, EMBASE (Elsevier), CINAHL Complete (EBSCOhost), Web of Science Core Collection, and the Cochrane Central Register of Controlled Trials (Wiley) through August 26, 2024. Two investigators independently screened titles and abstracts, followed by full-text review for inclusion. Data were extracted for prespecified critical and important outcomes, and evidence was evaluated using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach. RESULTS:Nine observational studies were included, incorporating data from 21,417 patients receiving ECLS, with 4368 seen by specialty palliative care. For all outcomes, certainty of evidence was very low. Two studies included a critical outcome: one found no difference in "average pain" and one reported more goals-of-care notes, comparing those seen by palliative care to those not seen. Five studies reported longer ECLS duration among those with palliative care consultation compared to those without. Three studies performed statistical comparisons of survival for patients with and without palliative care consultation and found no significant differences in hospital mortality. CONCLUSION:Few studies have investigated patient- and family-centered outcomes related to specialty palliative care for patients receiving ECLS. Specialty palliative care does not appear to correlate with mortality, supporting the concept that palliative care can support goals-of-care conversations and end-of-life decision making without negatively affecting patient survival. However, limitations of the existing data preclude meaningful conclusions about the relationship between specialty palliative care and other patient- and family-centered outcomes. Additional research is needed to clarify the optimal role of specialty palliative care in this population.
Prior work has shown a preference among most people with dementia and their families for comfort-focused care near the end-of-life. Nonetheless, intubation and mechanical ventilation are increasing over time without concurrent trends in improved survival, including among those with advanced dementia. A better understanding of prehospital decision-making about intubation for people with dementia will guide efforts to increase goal-concordant care at onset of critical illness. We identified eligible patients using the UW Medicine electronic health record (EHR) applying the following inclusion criteria: (1) age ≥ 55, (2) ICD-code indicating dementia, (3) admission to a medicine service between 2011 and 2021, (4) treatment by paramedics, and (5) National Early Warning Score ≥7 indicating critical illness. We performed automated and manual abstraction of demographic and clinical variables from the EHR. We conducted a qualitative content analysis of emergency medical services (EMS) treatment narratives for patients with dementia, abstracting the number of cases in which there was documentation of: (1) the patient’s history of dementia, (2) presence of a surrogate decision-maker, and (3) discussion of advance directives. In a preliminary sample of 81 patients, the mean age was 80 years (SD 12) and 42% were female. About half (48%) were residing in a nursing home and 73% had clinical markers of advanced dementia. The mean Glasgow Coma Score at time of EMS assessment was 11 (SD 3.9). The most common documented reasons for EMS activation were respiratory complaints (30%), altered mentation (20%), and suspected sepsis (19%). Awareness of patients’ history of dementia was documented in about a third (31%) of cases, the presence of a surrogate decision-maker in 21% of cases, and assessment of whether the patient had an advance directive in 22% of cases. Content analysis of EMS treatment narratives for critically ill patients with dementia suggests challenges faced by paramedics in eliciting patients’ treatment preferences, including having limited access to a surrogate decision-maker with knowledge of the patient’s medical history, values and goals, and existing advance directives. Future work should elicit paramedic perspectives on challenges faced in providing goal-concordant care for this patient population.
Rationale Critical care guidelines recommend that ICU teams provide emotional support to families of critically ill patients. Yet, families often receive little emotional support from ICU clinicians. We sought to determine the acceptability and feasibility of the multicomponent Emotional Support in ICU (ES-ICU) intervention. Methods We conducted an open-label pilot study of ES-ICU in the medical ICU of a quaternary academic medical center. We enrolled patients requiring invasive mechanical ventilation, their primary surrogate decision maker, and their ICU physicians and medical team. ES-ICU consists of: (1) early chaplain meetings with families, and (2) relaying family perspectives on the ICU experience to ICU clinicians in standardized reports before scheduled family meetings. Chaplains elicit family perspectives and generate reports that include perspective taking prompts. Fidelity was defined as the proportion of families who met with a chaplain and had a report generated and reviewed by clinicians before a routine family meeting. Chaplains completed the acceptability of intervention measure (AIM) and feasibility of intervention measure (FIM) after chaplain-family meetings. Families completed AIM and clinicians completed AIM and FIM after family meetings. Results We enrolled 9 patients and their family member. All families met with a chaplain (called an “ICU support counselor”). Initial chaplain-family meetings occurred a median of 4.1 days (25th-75th3.7-5.1) after ICU admission and lasted a median of 55 minutes (25th-75th30-60). Chaplains completed surveys after every meeting and reported that in 8 of 9 (89%) meetings families “opened up and offered deep insights into their perspectives”. A structured report was created for all families. Routine family meetings occurred for 7 patients and the report was reviewed by physicians prior to all meetings. Family meetings occurred a median of 4.8 days (25th-75th4.7-7.6) after ICU admission and lasted a median of 40 minutes (25th-75th31-44). All physicians completed post-meeting surveys and rated 71% of reports as quite a bit or extremely helpful. Six families completed post-meeting surveys, and all completely agreed that they felt “supported by the ICU support counselor” and “would recommend the ICU support counselor”. Three families had follow-up visits with chaplains and 3 updated reports were created. Follow-up family meetings occurred for 2 of these families and physicians reviewed reports before both. All participants found ES-ICU acceptable and feasible (Table). Conclusions In a small open-label pilot study, ES-ICU was implemented with fidelity and was acceptable and feasible to participants. A larger pilot randomized trial of ES-ICU is warranted.
BACKGROUND: Predictors of death resulting from extracorporeal membrane oxygenation (ECMO) withdrawal, in-hospital death after ECMO liberation, and survival to hospital discharge have been evaluated incompletely, despite the prognostic insight they provide. RESEARCH QUESTION: What are the predictors of 3 vital outcomes after venoarterial ECMO: (1) death in the context of ECMO withdrawal, (2) ECMO liberation followed by in-hospital death, and (3) survival to hospital discharge? STUDY DESIGN: This retrospective observational study using Extracorporeal Life Support Organization registry data included adults supported by venoarterial ECMO from 2018 through 2022 at 325 North American sites. Three generalized linear mixed models (each comparing 2 outcomes) measured associations between predictors and outcomes, using random intercepts to address data clustering by site. RESULTS: Of 23,177 patients, 10,122 patients (43.7%) died in the context of ECMO withdrawal, 3,510 patients (15.1%) died in the hospital after ECMO liberation, and 9,545 patients (41.2%) survived to hospital discharge. Statistical analysis was performed for 16,277 patients supported for >= 24 hours with complete data available (32.5% female; mean age, 55.7 years; and 62.7% White, 16.4% Black, 6.1% Hispanic, and 3.2% Asian). Older age, higher BMI, cardiac arrest before ECMO initiation, and renal failure were associated with increased odds of death in the context of ECMO withdrawal and death after liberation compared with survival. Higher pH and male sex also were associated with increased odds of survival relative to withdrawal. Among decedents, death in the context of ECMO withdrawal was less common than death after ECMO liberation when patients were male and pH was higher. INTERPRETATION: Patients who were older, had higher BMI, or experienced cardiac arrest or renal failure before ECMO initiation seemed to have increased risk of in-hospital death, both in the context of ECMO withdrawal and after ECMO liberation. Male individuals were shown to be less likely to experience ECMO withdrawal. These findings offer prognostic associations that may inform how to support patients and families after ECMO initiation.