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© 2022 American Academy of Hospice and Palliative MedicineContext: The COVID-19 pandemic has highlighted variability in intensity of care. We aimed to characterize intensity of care among hospitalized patients with COVID-19. Objectives: Examine the prevalence and predictors of admission code status, palliative care consultation, comfort-measures-only orders, and cardiopulmonary resuscitation (CPR) among patients hospitalized with COVID-19. Methods: This cross-sectional study examined data from an international registry of hospitalized patients with COVID-19. A proportional odds model evaluated predictors of more aggressive code status (i.e., Full Code) vs. less (i.e., Do Not Resuscitate, DNR). Among decedents, logistic regression was used to identify predictors of palliative care consultation, comfort measures only, and CPR at time of death. Results: We included 29,923 patients across 179 sites. Among those with admission code status documented, Full Code was selected by 90% (n = 15,273). Adjusting for site, Full Code was more likely for patients who were of Black or Asian race (ORs 1.82, 95% CIs 1.5–2.19; 1.78, 1.15–3.09 respectively, relative to White race), Hispanic ethnicity (OR 1.89, CI 1.35–2.32), and male sex (OR 1.16, CI 1.0–1.33). Of the 4951 decedents, 29% received palliative care consultation, 59% transitioned to comfort measures only, and 29% received CPR, with non-White racial and ethnic groups less likely to receive comfort measures only and more likely to receive CPR. Conclusion: In this international cohort of patients with COVID-19, Full Code was the initial code status in the majority, and more likely among patients who were Black or Asian race, Hispanic ethnicity or male. These results provide direction for future studies to improve these disparities in care.

Racial inequities in palliative and end-of-life care have been well-documented for many years. This inequity is long-standing and resistant to many intervention efforts. One reason for this may be that research in racial inequity in palliative care, and the interventions developed, do not account for the effects of race and the everyday racism that patients of color experience while navigating the healthcare system. Public Health Critical Race Praxis (PHCRP) offers researchers new routes of inquiry to broaden the scope of research priorities in palliative care and improving racial outcomes through a novel conceptual framework and methodology. PHCRP, based off critical race theory (CRT), contains ten principles within four foci to guide researchers toward a more race conscious approach for the generation of research questions, research processes, and development of interventions targeting racial inequities.

Context Human-centered design provides a framework to understand the needs of patients and clinicians who are the target of goals-of-care discussion priming tools. Few studies employ human-centered design to develop and refine their tools. Objectives To describe how human-centered design can be applied to the development and refinement of clinician- and patient-facing inpatient goals-of-care discussion guides (Jumpstart guides). Methods Human-centered design was applied to the development and refinement of the inpatient Jumpstart guides in four phases: (1) discovering problems based on prior pilots, studies, and research team priorities; (2) further defining problems based on stakeholder and expert review of the current guides; (3) designing solutions based on consensus among stakeholders; and (4) validating solutions after research team review of stakeholder comments. Results Five initial problems were identified by the research team in phase 1. After expert and stakeholder review in phase 2, 30 additional problems were identified related to Jumpstart guide format, structure, and content. In phase 3, stakeholders proposed solutions to these 35 problems and reached consensus on 32 of these. There was disagreement in 3 areas, including how to frame discussions around cardiopulmonary resuscitation and 2 perceived barriers to inpatient goals-of-care discussions. In phase 4, the research team reviewed all stakeholder input and reached final consensus on solutions to all of the identified problems. Conclusion Human-centered design is a useful tool for enhancing communication interventions in serious illness and can easily be integrated in future development and refinement of clinician- and patient-facing interventions to enhance goals-of-care discussions.

The integration of palliative care into intensive care units (ICUs) is advocated to mitigate physical and psychological burdens for patients and their families, and to improve end-of-life care. The most efficacious palliative care interventions, the optimal model of their delivery and the most appropriate outcome measures in ICU are not clear. We conducted a systematic review of randomised clinical trials and observational studies to evaluate the number and types of palliative care interventions implemented within the ICU setting, to assess their impact on ICU practice and to evaluate differences in palliative care approaches across different countries. Fifty-eight full articles were identified, including 9 randomised trials and 49 cohort studies; all but 4 were conducted within North America. Interventions were categorised into five themes: communication (14, 24.6%), ethics consultations (5, 8.8%), educational (18, 31.6%), involvement of a palliative care team (28, 49.1%) and advance care planning or goals-of-care discussions (7, 12.3%). Thirty studies (51.7%) proposed an integrative model, whilst 28 (48.3%) reported a consultative one. The most frequently reported outcomes were ICU or hospital length of stay (33/55, 60%), limitation of life-sustaining treatment decisions (22/55, 40%) and mortality (15/55, 27.2%). Quantitative assessment of pooled data was not performed due to heterogeneity in interventions and outcomes between studies. Beneficial effects on the most common outcomes were associated with strategies to enhance palliative care involvement, either with an integrative or a consultative approach. Few studies reported functional outcomes for ICU patients. Almost all studies were from North America, limiting the generalisability to other healthcare systems.

BACKGROUND: Parents experience high distress following their child's diagnosis of cancer. We previously tested two delivery models (group and one-on-one) of the “Promoting Resilience in Stress Management for Parents” (PRISM-P) intervention in a randomized trial: one-on-one delivery improved resilience and benefit finding at three months when compared to usual care (UC). OBJECTIVE: The objective of this analysis was to evaluate quantitative and qualitative outcomes at six months. DESIGN: In this single-center, phase 2, parallel, 1:1:1 randomized trial conducted December 2016 to December 2018, English-speaking parents with a 2–24 year-old child diagnosed with new cancer were randomly assigned to UC, one-on-one, or group PRISM-P, a brief, skill-based curriculum targeting stress management, goal setting, cognitive reframing, and meaning making. We collected parent-reported outcomes (resilience, benefit finding, and psychological distress) at baseline and three and six months. We applied linear mixed-effects regression models to examine six-month outcomes among all participants and conducted directed content analyses of exit interviews with the first 12 parents to complete each study arm. RESULTS: The 94 participating parents were median aged 35–38 years and predominantly white, college-educated mothers. At six months, there was no statistically significant difference in parent-reported outcomes. Exit interviews (n = 36) suggested that PRISM-P was highly valued: 100% of interviewed recipients recommended it for other parents. Most suggested more coaching would help them retain skills, and almost all endorsed a combined one-on-one and group program. CONCLUSIONS: Although the PRISM-P benefits observed at three months were not sustained for six months, all interviewed parents found it valuable. Additional opportunities to strengthen and sustain resilience resources include longer follow-up, flexible format, and skill reinforcement. TRIAL REGISTRATION: NCT02998086.

Background: It is not clear whether use of specialty palliative care consults and “comfort measures only” (CMO) order sets differ by type of intensive care unit (ICU). A better understanding of palliative care provided to these patients may help address heterogeneity of care across ICU types. Objectives: Examine utilization of specialty palliative care consultation and CMO order sets across several different ICU types in a multihospital academic health care system. Design: Retrospective cohort study using Washington State death certificates and data from the electronic health record. Setting/Subjects: Adults with a chronic medical illness who died in an ICU at one of two hospitals from July 2013 through December 2018. Five ICU types were identified by patient population and attending physician specialty. Measurements: Documentation of a specialty palliative care consult during a patient's terminal ICU stay and a CMO order set at time of death. Results: For 2706 eligible decedents, ICU type was significantly associated with odds of palliative care consultation (p

Little is known about end-of-life healthcare utilization and palliative care use among older adults with serious illness and limited English proficiency (LEP).We conducted a retrospective analysis of seriously-ill older adults (65+) with and without LEP, from a large health system, who died between 2010 and 2018. Primary outcomes were measures of healthcare utilization in the last 30 and 180 days of life: hospitalization, emergency department (ED) visits, intensive care unit (ICU) admission, and 30-day readmission. Secondary outcomes were palliative care consultation and advance care planning documents. We used multivariate analyses adjusted for sociodemographic factors including race and ethnicity.Among 18,490 decedents, 1363 had LEP. Patients with LEP were older at time of death (median age 80 vs 77 years), more likely to be female (48% vs 44%), of Asian descent (64% vs 4%), of Hispanic ethnicity (10% vs 2%), with12th grade education (38% vs 9%), and Medicaid (36% vs 6%). In the last 30 days of life, patients with LEP had higher odds of ED visits (33% vs 20%; aOR 1.41, 95% CI 1.26-1.72; p 0.001), readmission (12% vs 8%; aOR 1.64, 95% CI 1.30-2.07; p 0.001), and in-hospital death (45% vs 37%; aOR 1.24, 95% CI 1.07-1.44; p = 0.005) compared to patients without LEP. Findings were similar in the last 180-days of life. Only 14% of patients with LEP and 10% of those without LEP received palliative care consultation in the last month of life. Patients with LEP were less likely to have advance care planning documents than patients without LEP (36% vs 40%; aOR 0.68, 95% CI 0.50-0.80; p 0.001).Older adults with serious illness and LEP have higher rates of end-of-life healthcare utilization. Additional research is needed to identify drivers of these differences and inform linguistically- and culturally-appropriate interventions to improve end-of-life care in this population.

Palliative care has potential to improve quality of life and goal-concordant care for patients with adult congenital heart disease (ACHD). However, it is rarely employed prior to critical illness because the best methods for implementation are not well-defined. We qualitatively evaluated ACHD patients' understanding of and opinions regarding palliative care and advance care planning (ACP) to better define the needs of this population. We conducted a thematic analysis of 25 semistructured interviews with patients with ACHD in which we assessed participants' perspectives on the need for, and barriers and facilitators to, the use of palliative care and ACP. In a group of participants with ACHD (mean age 38, 48% male) classified as simple (24%), moderate (32%), or complex (44%), we identified 4 major themes: (1) using knowledge to combat future uncertainties; (2) unfamiliarity with and limited exposure to palliative care and ACP; (3) facilitators and barriers to engaging in palliative care and ACP; and (4) importance of timing and presentation of ACP discussions. In conclusion, participants expressed a desire for knowledge about ACHD progression and treatment. They supported routine incorporation of palliative care and ACP and identified related facilitators and barriers to doing so. Importantly, timing and format of these discussions must be individualized using shared decision-making between clinicians, patients, and their families.

Context Hospice care focuses on improving the quality of end-of-life care and respecting patients’ preferences regarding end-of-life treatment. The impact of coronavirus disease 2019 (COVID-19) on the utilization of hospice services is unknown. Objectives To investigate the utilization of hospice care services before and during the COVID-19 pandemic. Methods All patients (n = 19,900) cared for at Taipei City Hospital from January 2019 to April 2020 were divided into three time points: January–April 2019 (before COVID-19), May–December 2019 (interim), and January–April 2020 (during COVID-19). This cohort study compared the monthly utilization of hospice services before and during the COVID-19 pandemic. Results There was no significant difference in hospice home visits (194 vs. 184; P = 0.686) and new enrollments (15 vs. 14; P = 0.743) to hospice home care before and during the pandemic. However, the bed occupancy rate in hospice units in the hospital was significantly reduced from 66.2% before the pandemic to 37.4% during the pandemic (P = 0.029), whereas that in nonhospice units had a nonsignificant decrease from 81.6% before the pandemic to 71.8% during the pandemic (P = 0.086). During the pandemic, the number of inpatient days was affected more severely in hospice units than in nonhospice units (−42.4% vs. −10.9%; P = 0.029). Conclusions This study suggests that hospice home care services were maintained during the COVID-19 pandemic, while the utilization of hospice inpatient care services reduced. Home care for hospice patients is an essential component of palliative care during a pandemic.

Context The coronavirus disease 2019 (COVID-19) pandemic is stressing health care systems throughout the world. Significant numbers of patients are being admitted to the hospital with severe illness, often in the setting of advanced age and underlying comorbidities. Therefore, palliative care is an important part of the response to this pandemic. The Seattle area and UW Medicine have been on the forefront of the pandemic in the U.S. Methods UW Medicine developed a strategy to implement a palliative care response for a multihospital health care system that incorporates conventional capacity, contingency capacity, and crisis capacity. The strategy was developed by our palliative care programs with input from the health care system leadership. Results In this publication, we share our multifaceted strategy to implement high-quality palliative care in the context of the COVID-19 pandemic that incorporates conventional, contingency, and crisis capacity and focuses on the areas of the hospital caring for the most patients: the emergency department, intensive care units, and acute care services. The strategy focuses on key content areas, including identifying and addressing goals of care, addressing moderate and severe symptoms, and supporting family members. Conclusion Strategy planning for delivery of high-quality palliative care in the context of the COVID-19 pandemic represents an important area of need for our health care systems. We share our experiences of developing such a strategy to help other institutions conduct and adapt such strategies more quickly.

Although goals-of-care discussions are important for high-quality palliative care, this communication is often lacking for hospitalized older patients with serious illness. Electronic health records (EHR) provide an opportunity to identify patients who might benefit from these discussions and promote their occurrence, yet prior interventions using the EHR for this purpose are limited. We designed two complementary yet independent randomized trials to examine effectiveness of a communication-priming intervention (Jumpstart) for hospitalized older adults with serious illness.We report the protocol for these 2 randomized trials. Trial 1 has two arms, usual care and a clinician-facing Jumpstart, and is a pragmatic trial assessing outcomes with the EHR only (n = 2000). Trial 2 has three arms: usual care, clinician-facing Jumpstart, and clinician- and patient-facing (bi-directional) Jumpstart (n = 600). We hypothesize the clinician-facing Jumpstart will improve outcomes over usual care and the bi-directional Jumpstart will improve outcomes over the clinician-facing Jumpstart and usual care. We use a hybrid effectiveness-implementation design to examine implementation barriers and facilitators.For both trials, the primary outcome is EHR documentation of a goals-of-care discussion within 30 days of randomization; additional outcomes include intensity of end-of-life care. Trial 2 also examines patient- or family-reported outcomes assessed by surveys targeting 3-5 days and 4-8 weeks after randomization including quality of goals-of-care communication, receipt of goal-concordant care, and psychological symptoms.This novel study incorporates two complementary randomized trials and a hybrid effectiveness-implementation approach to improve the quality and value of care for hospitalized older adults with serious illness.STUDY00007031-A and STUDY00007031-B.

Objectives: The global COVID-19 pandemic made strict visitation policies necessary. We explored the experiences of family members of patients with severe acute brain injury focusing on the impact of family presence in the hospital. Methods: Semistructured interviews (February 2018-April 2020) were audiotaped, transcribed, and analyzed using thematic analysis. Results: We interviewed family members of 19 patients with stroke, traumatic brain injury, or cardiac arrest; five interviews occurred after initiation of restrictive visitation policies. Four key themes highlight the role of visitation on family's ability to (1) cope by being at the bedside, (2) protect and advocate for the patient, (3) build trust with clinicians, and (4) receive emotional support in the intensive care unit. After visitation restrictions, families found ways to communicate and support virtually and wished for proactive communication from clinicians. Conclusions: Family presence at patient's bedside fulfills important needs. Visitation restrictions require hospitals to be creative and inclusive to help maintain these connections.

Context Hospitalized patients with advanced cancer often face complex, preference-sensitive decisions. How clinicians and patients engage in shared decision-making during goals-of-care discussions is not well understood. Objective The objective of this study was to explore decision-making by patients and clinicians during inpatient goals-of-care discussions. Methods This is a qualitative study of audio-recorded goals-of-care discussions between hospitalized patients with advanced cancer and their clinicians. Grounded theory was used to analyze transcripts. Results Sixty-two patients participated in goals-of-care discussions with 51 unique clinicians. Nearly half of patients (n = 30) were female and their mean age was 60.1 years (SD = 12.7). A palliative care attending or fellow was present in 58 of the 62 discussions. Decisions centered on three topics: 1) disease-modifying treatments; 2) hospice; and 3) code status. Clinicians' approach to decision-making included the following stages: "information exchange," "deliberation," "making a patient-centered recommendation," and "wrap-up: decisional status." Successful completion of each stage varied by the type of decision. When discussing code status, clinicians missed opportunities to engage patients in information exchange and to wrap up decisional status. By contrast, clinicians discussing disease-modifying treatments and hospice failed to integrate patient preferences. Clinicians also missed opportunities to make patient-centered recommendations when discussing treatment decisions. Conclusion Clinicians missed opportunities to facilitate shared decision-making regarding goals of care, and these missed opportunities differed by type of decision being discussed. Opportunities for clinician communication training include engagement in collaborative deliberation with patients and making patient-centered recommendations in situations of high medical uncertainty.

Summary For patients with chronic, life-limiting illnesses, admission to the intensive care unit (ICU) near the end of life might not improve patient outcomes or be consistent with patient and family values, goals, and preferences. In this context, advance care planning and palliative care interventions designed to clarify patients' values, goals, and preferences have the potential to reduce provision of high-intensity interventions that are unwanted or non-beneficial. In this Series paper, we have assessed interventions that are effective at helping patients with chronic, life-limiting illnesses to avoid an unwanted ICU admission. The evidence found was largely from observational studies, with considerable heterogeneity in populations, methods, and types of interventions. Results from randomised trials of interventions to improve communication about goals of care are scarce, of variable quality, and mixed. Although observational studies show that advance care planning and palliative care interventions are associated with a reduced number of ICU admissions at the end of life, causality has not been well established. Using the available evidence we suggest recommendations to help to avoid ICU admission when it does not align with patient and family values, goals, and preferences and conclude with future directions for research.

CONTEXT: Goals-of-care discussions are associated with improved end-of-life care for patients and therefore may be used as a process measure in quality improvement, research, and reimbursement programs. OBJECTIVES: To examine three methods to assess occurrence of a goals-of-care discussion - patient report, clinician report, and documentation in the electronic health record (EHR) - at a clinic visit for seriously ill patients and determine whether each method is associated with patient-reported receipt of goal-concordant care. METHODS: Secondary analysis of a multi-center cluster-randomized trial, with 494 patients and 124 clinicians caring for them. Self-reported surveys collected from patients and clinicians two weeks after a clinic visit assessed occurrence of a goals-of-care discussion. Documentation of a goals-of-care discussion was abstracted from the EHR. Patient-reported receipt of goal-concordant care was assessed by survey two weeks after the visit. RESULTS: 52% of patients reported occurrence of a goals-of-care discussion at the clinic visit; clinicians reported occurrence of a discussion at 66% of visits. EHR documentation occurred in 42% of visits (p

Background Patients with adult congenital heart disease (ACHD) report that advance care planning (ACP) is important, and that they want information about prognosis. However, recognizing importance and being willing to participate are different constructs, and how and when to begin ACP and palliative care discussions remains ill-defined. Methods We conducted a cross-sectional survey of 150 consecutive outpatients to assess willingness to participate in ACP, with whom, and important barriers and facilitators to these discussions. Results The majority of participants (69%) reported being willing to participate in ACP; 79% to have a meeting to discuss goals and care preferences; and 91% to speak to a clinician who specializes in palliative care. Being married and anticipating a shorter lifespan were associated with increased reported willingness to participate in ACP. The health care provider with whom most participants preferred to have these discussions was their ACHD clinician. Participants identified important barriers and facilitators to these discussions. Conclusion Patients with ACHD report being willing to participate in ACP and palliative care discussions. Patients prefer to have these discussions with their ACHD clinicians, thus ACHD clinicians need to be prepared to address these issues as part of routine care.

Background: Although national guidelines recommend timely initiation of palliative care for hospitalized patients with advanced heart failure (AHF), providers may not recognize which patients who have heart failure are most in need of consultation. Measures: A tool was developed and pilot-tested to screen patients admitted to a cardiology inpatient service with a left ventricular ejection fraction (LVEF) of 50% or less for potential triggers signifying palliative care needs in the telemetry or cardiac intensive care unit (CICU). Intervention: The tool was completed during cardiology rounds. Outcomes: Of the 21 patients evaluated, the median LVEF was lower in the telemetry group (22%) than in the CICU group (28%). Trigger patients in the telemetry unit were less adherent to medical management (χ2 = 6.034, p = .014) and had greater psychosocial and spiritual needs (χ2 = 3.956, p = .047) than those in the CICU. Conclusion: We describe a feasible palliative care screening tool for patients with AHF hospitalized in a telemetry unit or CICU that may identify opportunities for early palliative care referrals. Additional study is needed to determine whether this tool can be used to improve patient care or patient outcomes.

Effective prognostication for a novel disease presents significant challenges, especially given the stress induced during a pandemic. We developed a point-of-care tool to summarize outcome data for critically ill patients with COVID-19 and help guide clinicians through a thoughtful prognostication process. Two authors reviewed studies of outcomes of patients with critical illness due to COVID-19 and created a visual infographic tool based on available data. Survival data were supplemented by descriptions of best- and worst-case clinical scenarios. The tool also included prompts for clinician reflection designed to enhance awareness of cognitive biases that may affect prognostic accuracy. This online, open-source COVID-19 Prognostication Tool has been made available to all clinicians at our institution and is updated weekly to reflect evolving data. Our COVID-19 Prognostication Tool may provide a useful approach to promoting consistent and high-quality prognostic communication across a health care system.

Context Goals-of-care discussions are an important quality metric in palliative care. However, goals-of-care discussions are often documented as free text in diverse locations. It is difficult to identify these discussions in the electronic health record (EHR) efficiently. Objectives To develop, train, and test an automated approach to identifying goals-of-care discussions in the EHR, using natural language processing (NLP) and machine learning (ML). Methods From the electronic health records of an academic health system, we collected a purposive sample of 3183 EHR notes (1435 inpatient notes and 1748 outpatient notes) from 1426 patients with serious illness over 2008–2016, and manually reviewed each note for documentation of goals-of-care discussions. Separately, we developed a program to identify notes containing documentation of goals-of-care discussions using NLP and supervised ML. We estimated the performance characteristics of the NLP/ML program across 100 pairs of randomly partitioned training and test sets. We repeated these methods for inpatient-only and outpatient-only subsets. Results Of 3183 notes, 689 contained documentation of goals-of-care discussions. The mean sensitivity of the NLP/ML program was 82.3% (SD 3.2%), and the mean specificity was 97.4% (SD 0.7%). NLP/ML results had a median positive likelihood ratio of 32.2 (IQR 27.5–39.2) and a median negative likelihood ratio of 0.18 (IQR 0.16–0.20). Performance was better in inpatient-only samples than outpatient-only samples. Conclusion Using NLP and ML techniques, we developed a novel approach to identifying goals-of-care discussions in the EHR. NLP and ML represent a potential approach toward measuring goals-of-care discussions as a research outcome and quality metric.

To assess the effectiveness of noninvasive ventilation in patients with acute respiratory failure and do-not-intubate or comfort-measures-only orders.MEDLINE, EMBASE, CINAHL, Scopus, and Web of Science from inception to January 1, 2017.Studies of all design types that enrolled patients in the ICU or hospital ward who received noninvasive ventilation and had preset do-not-intubate or comfort-measures-only orders.Data abstraction followed Meta-analysis of Observational Studies in Epidemiology guidelines. Data quality was assessed using a modified Newcastle-Ottawa Scale.Twenty-seven studies evaluating 2,020 patients with do-not-intubate orders and three studies evaluating 200 patients with comfort-measures-only orders were included. In patients with do-not-intubate orders, the pooled survival was 56% (95% CI, 49-64%) at hospital discharge and 32% (95% CI, 21-45%) at 1 year. Hospital survival was 68% for chronic obstructive pulmonary disease, 68% for pulmonary edema, 41% for pneumonia, and 37% for patients with malignancy. Survival was comparable for patients treated in a hospital ward versus an ICU. Quality of life of survivors was not reduced compared with baseline, although few studies evaluated this. No studies evaluated quality of dying in nonsurvivors. In patients with comfort-measures-only orders, a single study showed that noninvasive ventilation was associated with mild reductions in dyspnea and opioid requirements.A large proportion of patients with do-not-intubate orders who received noninvasive ventilation survived to hospital discharge and at 1 year, with limited data showing no decrease in quality of life in survivors. Provision of noninvasive ventilation in a well-equipped hospital ward may be a viable alternative to the ICU for selected patients. Crucial questions regarding quality of life in survivors, quality of death in nonsurvivors, and the impact of noninvasive ventilation in patients with comfort-measures-only orders remain largely unanswered.

Background: Many older adults live with serious illness for years before their death. Nurse-led primary palliative care could improve their quality of life and ability to stay in their community. Objectives: To assess feasibility and acceptability of a nurse-led Transitional Palliative Care (TPC) program for older adults with serious illness. Methods: The study was a pilot trial of the TPC program in which registered nurses assisted patients with symptom management, communication with care providers, and advance care planning. Forty-one older adults with chronic conditions were enrolled in TPC or standard care groups. Feasibility was assessed through enrollment and attrition rates and degree of intervention execution. Acceptability was assessed through surveys and exit interviews with participants and intervention nurses. Results: Enrollment rate for those approached was 68%, and completion rate for those enrolled was 71%. The TPC group found the intervention acceptable and helpful and was more satisfied with care received than the control group. However, one-third of participants perceived that TPC was more than they needed, despite the number of symptoms they experienced and the burdensomeness of their symptoms. More than half of the participants had little to no difficulty participating in daily activities. Conclusion: This study demonstrated that the nurse-led TPC program is feasible, acceptable, and perceived as helpful. However, further refinement is needed in selection criteria to identify the population who would most benefit from primary palliative care before future test of the efficacy of this intervention.

Background: Communication between clinicians and patients fundamentally shapes the experience of serious illness. There is increasing recognition that health systems should routinely implement structures and processes to assure high-quality serious illness communication (SIC) and measure the effectiveness of their efforts on key outcomes. The absence, underdevelopment, or limited applicability of quality measures related specifically to SIC, and their limited application only to those seen by specialist palliative and hospice care teams, hinder efforts to improve care planning, service delivery, and health outcomes for all seriously ill patients. Objective: We convened an expert stakeholder symposium and subsequently surveyed participants to consider challenges, opportunities, priorities, and strategies to improve quality measurement specific to SIC. Results: We identified several barriers and opportunities to improving quality measurement of SIC. These include issues related to the definition of SIC, methodological challenges related to measuring SIC and related outcomes, underutilization of technologies that can facilitate measurement, and measurement development, and dissemination. Conclusions: Patients, clinicians, and health systems increasingly align around the importance of high-quality communication in serious illness. We offer recommendations for various stakeholder groups to advance SIC quality measurement. Enthusiasm and a sense of urgency among health systems to drive and measure communication improvements inform our proposal for a set of example measures for implementation now.

Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and international experts in the field to develop a clinical, educational, and research agenda to move the field forward. Clinical priorities included the need to develop and implement effective models to integrate palliative care into neurology and to develop and implement informative quality measures to evaluate and compare palliative approaches. Educational priorities included the need to improve the messaging of palliative care and to create standards for palliative care education for neurologists and neurology education for palliative specialists. Research priorities included the need to improve the evidence base across the entire research spectrum from early-stage interventional research to implementation science. Highest priority areas include focusing on outcomes important to patients and families, developing serious conversation triggers, and developing novel approaches to patient and family engagement, including improvements to decision quality. As we continue to make remarkable advances in the prevention, diagnosis, and treatment of neurologic illness, neurologists will face an increasing need to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body. This article outlines opportunities to improve the quality of care for all patients with neurologic illness and their families through a broad range of clinical, educational, and investigative efforts that include complex symptom management, communication skills, and models of care.

Background: Persons with cystic fibrosis (CF) experience high morbidity and mortality, yet little is known about their palliative care needs and how clinicians may address these needs. Objectives: (1) To identify palliative care and advance care planning needs of patients with CF and their families; and (2) to identify clinicians' potential roles in meeting these needs. Methods: A mixed-methods study of adult patients (age ≥18 years) with moderate-to-severe CF [forced expiratory volume in the first second (FEV(1))

Most people prefer to die at home, yet most do not. Understanding factors associated with terminal hospitalization may inform interventions to improve care.Among patients with chronic illness receiving care in a multihospital healthcare system, we identified the following: (1) predictors of death in any hospital; (2) predictors of death in a hospital outside the system; and (3) trends from 2010 to 2015.Retrospective cohort using death certificates and electronic health records. Settings/Subjects: Decedents with one of nine chronic illnesses.Among 20,486 decedents, those most likely to die in a hospital were younger (odds ratio [OR] 0.977, confidence interval [CI] 0.974-0.980), with more comorbidities (OR 1.188, CI 1.079-1.308), or more outpatient providers (OR 1.031, CI 1.015-1.047); those with cancer or dementia, or more outpatient visits were less likely to die in hospital. Among hospital deaths, patients more likely to die in an outside hospital had lower education (OR 0.952, CI 0.923-0.981), cancer (OR 1.388, CI 1.198-1.608), diabetes (OR 1.507, CI 1.262-1.799), fewer comorbidities (OR 0.745, CI 0.644-0.862), or fewer hospitalizations within the system during the prior year (OR 0.900, CI 0.864-0.938). Deaths in hospital did not change from 2010 to 2015, but the proportion of hospital deaths outside the system increased (p 0.022).Patients dying in the hospital who are more likely to die in an outside hospital, and therefore at greater risk for inaccessibility of advance care planning, were more likely to be less well-educated and have cancer or diabetes, fewer comorbidities, and fewer hospitalizations. These findings may help target interventions to improve end-of-life care.

Context Recent analyses of Medicare data show decreases over time in intensity of end-of-life care. Few studies exist regarding trends in intensity of end-of-life care for those under 65 years of age. Objectives To examine recent temporal trends in place of death, and both hospital and intensive care unit (ICU) utilization, for age-stratified decedents with chronic, life-limiting diagnoses ( Methods Retrospective cohort using death certificates and electronic health records for 22,068 patients with chronic illnesses who died between 2010 and 2015. We examined utilization overall and stratified by age using multiple regression. Results The proportion of deaths at home did not change, but hospital admissions in the last 30 days of life decreased significantly from 2010 to 2015 (hospital b = −0.026; CI = −0.041, −0.012). ICU admissions in the last 30 days also declined over time for the full sample and for patients aged 65 years or older (overall b = −0.023; CI = −0.039, −0.007), but was not significant for younger decedents. Length of stay (LOS) did not decrease for those using the hospital or ICU. Conclusion From 2010 to 2015, we observed a decrease in hospital admissions for all age groups and in ICU admissions for those over 65 years. As there were no changes in the proportion of patients with chronic illness who died at home nor in hospital or ICU LOS in the last 30 days, hospital and ICU admissions in the last 30 days may be a more responsive quality metric than site of death or LOS for palliative care interventions.

Despite its importance, little is known about the prevalence of, and factors associated with, end-of-life care that is consistent with patients' wishes.To document the proportion of bereaved respondents who reported care inconsistent with patients' wishes and characterize the predictors of end-of-life care associated with inconsistent care.Retrospective analysis of nationally representative survey data of persons aged65 years. Settings/Subjects: Bereaved family members responding to the last month of life component of the National Health and Aging Trends Study. Methods/Measurements: Bereaved family members assessed treatment decisions and their consistency with patients' wishes, unmet needs, and quality of care. We examined differences between patients receiving inconsistent versus consistent care.A total of 1212 family members were interviewed, representing (when weighted) 4.8 million decedents. Thirteen percent stated that care was inconsistent with decedent's wishes. Consistent care was unassociated with patient's sex, age, or race/ethnicity. Death at home was more likely to represent consistent care, and death in the hospital or nursing home was more likely to represent inconsistent care (p = 0.052). Respondents reporting inconsistent care were more likely to rate the quality of care as fair or poor (19.1% vs. 4.8%, p 0.001), reported more unmet needs for pain management (30.5% vs. 19.4%, p = 0.037), and reported more concerns with communication (29.8% vs. 17.0%, p = 0.003).One in eight respondents stated care in the last months of life was inconsistent with patients' wishes; such care was associated with worse ratings of care, pain management, and communication with clinicians.

Purpose of report: Understanding the impact of palliative care interventions on intensive care unit (ICU) costs and utilization is critical for demonstrating the value of palliative care. Performing these economic assessments, however, can be challenging. The purpose of this special report is to highlight and discuss important considerations when assessing ICU utilization and costs from the hospital perspective, with the goal of providing recommendations on methods to consider for future analyses.ICU length of stay (LOS) and associated costs of care are common and important outcome measures, but must be analyzed properly to yield valid conclusions. There is significant variation in costs by day of stay in the ICU with only modest differences between an ICU day at the end of a stay and the first day on the acute care floor; this variation must be appropriately accounted for analytically. Furthermore, reporting direct variable costs, in addition to total ICU costs, is needed to understand short-term and long-term impact of a reduction in LOS. Importantly, incentives for the hospital to realize savings vary depending on reimbursement policies.ICU utilization and costs are common outcomes in studies evaluating palliative care interventions. Accurate estimation and interpretation are key to understanding the economic implications of palliative care interventions.

This survey study explores the advance care planning choices among adults receiving maintenance dialysis who hold religious or spiritual beliefs., Key Points Question Is there an association between the self-reported importance of religious or spiritual beliefs and serious illness preferences among people who receive dialysis? Findings In this cross-sectional survey study of 937 patients receiving dialysis, most participants indicated that their religious or spiritual beliefs were behind their whole approach to life. Those for whom these beliefs were more important were more likely to favor resuscitation and a shared (vs patient-centered) decision-making role and less likely to have ever thought or spoken about stopping dialysis. Meaning These findings highlight the importance of religious or spiritual beliefs and the potential value of an integrative approach that includes spiritual care for people who receive dialysis., Importance Although people receiving maintenance dialysis have limited life expectancy and a high burden of comorbidity, relatively few studies have examined spirituality and religious beliefs among members of this population. Objective To examine whether there is an association between the importance of religious or spiritual beliefs and care preferences and palliative care needs in people who receive dialysis. Design, Setting, and Participants A cross-sectional survey study was conducted among adults who were undergoing maintenance dialysis at 31 facilities in Seattle, Washington, and Nashville, Tennessee, between April 22, 2015, and October 2, 2018. The survey included a series of questions assessing patients’ knowledge, preferences, values, and expectations related to end-of-life care. Data were analyzed from February 12, 2020, to April 21, 2021. Exposures The importance of religious or spiritual beliefs was ascertained by asking participants to respond to this statement: “My religious or spiritual beliefs are what really lie behind my whole approach to life.” Response options were definitely true, tends to be true, tends not to be true, or definitely not true. Main Outcomes and Measurements Outcome measures were based on self-reported engagement in advance care planning, resuscitation preferences, values regarding life prolongation, preferred place of death, decision-making preference, thoughts or discussion about hospice or stopping dialysis, prognostic expectations, and palliative care needs. Results A total of 937 participants were included in the cohort, of whom the mean (SD) age was 62.8 (13.8) years and 524 (55.9%) were men. Overall, 435 (46.4%) participants rated the statement about religious or spiritual beliefs as definitely true, 230 (24.6%) rated it as tends to be true, 137 (14.6%) rated it as tends not to be true, and 135 (14.4%) rated it as definitely not true. Participants for whom these beliefs were more important were more likely to prefer cardiopulmonary resuscitation (estimated probability for definitely true: 69.8% [95% CI, 66.5%-73.2%]; tends to be true: 60.8% [95% CI, 53.4%-68.3%]; tends not to be true: 61.6% [95% CI, 53.6%-69.6%]; and definitely not true: 60.6% [95% CI, 52.5%-68.6%]; P for trend = .003) and mechanical ventilation (estimated probability for definitely true: 42.6% [95% CI, 38.1%-47.0%]; tends to be true: 33.5% [95% CI, 25.9%-41.2%]; tends not to be true: 35.1% [95% CI, 27.2%-42.9%]; and definitely not true: 27.9% [95% CI, 19.6%-36.1%]; P for trend = .002) and to prefer a shared role in decision-making (estimated probability for definitely true: 41.6% [95% CI, 37.7%-45.5%]; tends to be true: 35.4% [95% CI, 29.0%-41.8%]; tends not to be true: 36.0% [95% CI, 26.7%-45.2%]; and definitely not true: 23.8% [95% CI, 17.3%-30.3%]; P for trend = .001) and were less likely to have thought or spoken about stopping dialysis. These participants were no less likely to have engaged in advance care planning, to value relief of pain and discomfort, to prefer to die at home, to have ever thought or spoken about hospice, and to have unmet palliative care needs and had similar prognostic expectations. Conclusions and Relevance The finding that religious or spiritual beliefs were important to most study participants suggests the value of an integrative approach that addresses these beliefs in caring for people who receive dialysis.

Objectives: Increasing numbers of patients with prolonged mechanical ventilation generates a tremendous strain on healthcare systems. Patients with prolonged mechanical ventilation suffer from long-term poor quality of life. However, no study has ever explored the willingness to receive palliative care or terminal withdrawal and the factors influencing willingness. Design: Cross-sectional study. Setting: Five different hospitals of Taipei City Hospital system. Patients: Adult patients with ventilatory support for more than 60 days. Interventions: None. Measurements and Main Results: We identified the family members of 145 consecutive patients with prolonged mechanical ventilation in five hospitals of Taipei City Hospital system and enrolled family members for 106 patients (73.1%). We collected information from patient families’ regarding concepts (knowledge, attitude, and experiences) of palliative care, caregiver burden, family function, patient quality of life, and physician-family communications. From the medical record, we obtained duration of hospitalization, consciousness level, disease severity, medical cost, and the presence of do-not-resuscitate orders. The vast majority of family members agreed with the concept of palliative care (90.4%) with 17.3% of the family members agreeing to ventilator withdrawal currently and 67.5% terminally in anticipation of death. Approximately half of the family members regretted having chosen prolonged mechanical ventilation (56.7%). Reduced patient quality of life and increased family understanding of palliative care significantly associated with increased caregiver willingness to endorse palliative care and withdraw life-sustaining agents in anticipation of death. Longer duration of ventilator usage and hospitalization was associated with increased feelings of regret about choosing prolonged mechanical ventilation. Conclusions: During prolonged mechanical ventilation, physicians should thoroughly discuss its benefits and burdens. Families should be given the opportunity to discuss the circumstances under which they might request the implementation of palliative care or withdrawal of mechanical ventilation in order to avoid prolonging the dying process.

There are few published comfort care order sets for end-of-life symptom management, contributing to variability in treatment of common symptoms. At our academic medical centers, we have observed that rapid titration of opioid infusions using our original comfort care order set's titration algorithm causes increased discomfort from opioid toxicity.The aim of this study was to describe the process and outcomes of a multiyear revision of a standardized comfort care order set for clinicians to treat end-of-life symptoms in hospitalized patients.Our revision process included interdisciplinary group meetings, literature review and expert consultation, beta testing protocols with end users, and soliciting feedback from key committees at our institutions. We focused on opioid dosing and embedding treatment algorithms and guidelines within the order set for clinicians.The study was conducted at two large academic medical centers.We developed and implemented a comfort care order set with opioid dosing that reflects current pharmacologic principles and expert recommendations. Educational tools and reference materials are embedded within the order set in the electronic medical record. There are prompts for improved collaboration between ordering clinicians, nurses, and palliative care.We successfully developed a new comfort care order set at our institutions that can serve as a resource for others. Further evaluation of this order set is needed.

Background: We conducted a randomized trial of a simulation-based multisession workshop to improve palliative care communication skills (Codetalk). Standardized patient assessments demonstrated improved communication skills for trainees receiving the intervention; however, patient and family assessments failed to demonstrate improvement. This article reports findings from trainees’ self-assessments. Aim: To examine whether Codetalk resulted in improved self-assessed communication competence by trainees. Design: Trainees were recruited from the University of Washington and the Medical University of South Carolina. Internal medicine residents, medicine subspecialty fellows, nurse practitioner students, or community-based advanced practice nurses were randomized to Codetalk, a simulation-based workshop, or usual education. The outcome measure was self-assessed competence discussing palliative care needs with patients and was assessed at the start and end of the academic year. We used robust linear regression models to predict self-assessed competency, both as a latent construct and as individual indicators, including randomization status and baseline self-assessed competency. Results: We randomized 472 trainees to the intervention (n = 232) or usual education (n = 240). The intervention was associated with an improvement in trainee’s overall self-assessment of competence in communication skills ( P < .001). The intervention was also associated with an improvement in trainee self-assessments of 3 of the 4 skill-specific indicators—expressing empathy, discussing spiritual issues, and eliciting goals of care. Conclusion: Simulation-based communication training was associated with improved self-assessed competency in overall and specific communication skills in this randomized trial. Further research is needed to fully understand the importance and limitations of self-assessed competence in relation to other outcomes of improved communication skill.

In the intensive care unit (ICU), complex decision making by clinicians and families requires good communication to ensure that care is consistent with the patients' values and goals.To assess the economic feasibility of staffing ICUs with a communication facilitator.Data were from a randomized trial of an "ICU communication facilitator" linked to hospital financial records; eligible patients (n = 135) were admitted to the ICU at a single hospital with predicted mortality ≥30% and a surrogate decision maker. Adjusted regression analyses assessed differences in ICU total and direct variable costs between intervention and control patients. A bootstrap-based simulation assessed the cost efficiency of a facilitator while varying the full-time equivalent of the facilitator and the ICU mortality risk.Total ICU costs (mean 22.8k; 95% CI, -42.0k to -3.6k; P = 0.02) and average daily ICU costs (mean, -0.38k; 95% CI, -0.65k to -0.11k; P = 0.006)] were reduced significantly with the intervention. Despite more contacts, families of survivors spent less time per encounter with facilitators than did families of decedents (mean, 25 [SD, 11] min vs. 36 [SD, 14] min). Simulation demonstrated maximal weekly savings with a 1.0 full-time equivalent facilitator and a predicted ICU mortality of 15% (total weekly ICU cost savings, $58.4k [95% CI, $57.7k-59.2k]; weekly direct variable savings, $5.7k [95% CI, $5.5k-5.8k]) after incorporating facilitator costs.Adding a full-time trained communication facilitator in the ICU may improve the quality of care while simultaneously reducing short-term (direct variable) and long-term (total) health care costs. This intervention is likely to be more cost effective in a lower-mortality population.

Terminal intensive care unit (ICU) stays represent an important target to increase value of care.To characterize patterns of daily costs of ICU care at the end of life and, based on these patterns, examine the role for palliative care interventions in enhancing value.Secondary analysis of an intervention study to improve quality of care for critically ill patients.572 patients who died in the ICU between 2003 and 2005 at a Level-1 trauma center.Data were linked with hospital financial records. Costs were categorized into direct fixed, direct variable, and indirect costs. Patterns of daily costs were explored using generalized estimating equations stratified by length of stay, cause of death, ICU type, and insurance status. Estimates from the literature of effects of palliative care interventions on ICU utilization were used to simulate potential cost savings under different time horizons and reimbursement models.Mean cost for a terminal ICU stay was 39.3K ± 45.1K. Direct fixed costs represented 45% of total hospital costs, direct variable costs 20%, and indirect costs 34%. Day of admission was most expensive (mean 9.6K ± 7.6K); average cost for subsequent days was 4.8K ± 3.4K and stable over time and patient characteristics.Terminal ICU stays display consistent cost patterns across patient characteristics. Savings can be realized with interventions that align care with patient preferences, helping to prevent unwanted ICU utilization at end of life. Cost modeling suggests that implications vary depending on time horizon and reimbursement models.

Introduction: Advance care planning (ACP) is a process in which patients, families, and providers discuss and plan for desired treatment goals. American Indian and Alaska Native people (AI/AN) have higher prevalence of many serious, life-limiting illnesses compared with the general population; yet AI/ANs use ACP considerably less than the overall population. Method: We conducted a qualitative study to culturally adapt an existing ACP intervention for AI/ANs in two primary care settings. Results: We found that it is important to incorporate patients’ cultural values and priorities into ACP, determine who the patient wants involved in ACP conversations, and consider the culturally and locally relevant barriers and facilitators when developing an ACP intervention with AI/AN communities. Discussion: At the core, ACP interventions should be clear and understandable across populations and tailored to facilitate culturally appropriate and meaningful patient–provider communication. Our results and methodology of culturally adapting an intervention may be applicable to other underrepresented populations.

Background: Insight into health conditions associated with death can inform healthcare policy. We aimed to cluster 27,525,663 deceased people based on the health conditions associated with death to study the associations between the health condition clusters, demographics, the recorded underlying cause and place of death. Methods: Data from all deaths in the United States registered between 2006 and 2016 from the National Vital Statistics System of the National Center for Health Statistics were analyzed. A self-organizing map (SOM) was used to create an ordered representation of the mortality data. Results: 16 clusters based on the health conditions associated with death were found showing significant differences in socio-demographics, place, and cause of death. Most people died at old age (73.1 (18.0) years) and had multiple health conditions. Chronic ischemic heart disease was the main cause of death. Most people died in the hospital or at home. Conclusions: The prevalence of multiple health conditions at death requires a shift from disease-oriented towards person-centred palliative care at the end of life, including timely advance care planning. Understanding differences in population-based patterns and clusters of end-of-life experiences is an important step toward developing a strategy for implementing population-based palliative care.

Working groups have called for linkages of existing and diverse databases to improve quality measurement in palliative and end-of-life (EOL) care, but limited data are available on the challenges of using different data sources to measure such care.To assess concordance of data obtained from different sources in a novel linkage of death certificates, electronic health records (EHRs), cancer registry data, and insurance claims for patients who died with cancer.We joined a database of Washington State death certificates and EHR to a data repository of commercial health plan enrollment and claims files linked to registry records from Puget Sound Cancer Surveillance System. We assessed care in the last month including hospitalizations, intensive care unit (ICU) admissions, emergency department visits, imaging scans, radiation, and hospice, plus chemotherapy in the last 14 days. We used a Chi-squared test to compare differences between health care in EHR and claims.Records of hospitalization, ICU use, and emergency department use were 33%, 15%, and 33% lower in EHR versus claims, respectively. Radiation, hospice, and imaging were 6%, 14%, and 28% lower, respectively, in EHR, but chemotherapy was 4% higher than that in claims. These differences were statistically different for hospice (P 0.02), hospitalization, ICU, ER, and imaging (all P 0.01) but not radiation (P = 0.12) or chemotherapy (P = 0.29).We found substantial variation between EHR and claims for EOL health-care use. Reliance on EHR will miss some health-care use, while claims will not capture the complex clinical details in EHR that can help define the quality of palliative care and EOL health-care utilization.

Objective: To evaluate the association between the number of chronic conditions and hospital utilization at the end of life. Background: An understanding of the association of multimorbidi...

CONTEXT: Prioritizing amongst potentially conflicting end-of-life values may help patients discriminate amongst treatments and allow clinicians to align treatments with values. OBJECTIVES: To investigate end-of-life values that patients prioritize when facing explicit trade-offs and identify predictors of patients whose values and treatment preferences seem inconsistent. METHODS: Analysis of surveys from a multi-center cluster-randomized trial of patients with serious illness. Respondents prioritized end-of-life values and identified cardiopulmonary resuscitation (CPR) preferences in two health states. RESULTS: Of 535 patients, 60% prioritized relief of discomfort over extending life, 17% prioritized extending life over relief of discomfort, and 23% were unsure. Patients prioritizing extending life were most likely to prefer CPR, with 93% preferring CPR in current health and 67% preferring CPR if dependent on others, compared to 69% and 21% respectively for patients prioritizing relief of discomfort, and 78% and 33% respectively for patients unsure of their prioritized value (p

Referral for lung transplantation is a complex process that typically begins with a discussion in cystic fibrosis (CF) clinic. We performed a secondary analysis of interviews conducted at the University of Washington CF Clinic as part of a study of unmet palliative care needs, June 2015 - January 2016, among adults with moderate-to-severe CF-related lung disease. Content analysis methods were used to identify themes related to discussion of lung transplant in CF clinic. Thirty-two of 48 interviews (67%) addressed transplant. An individual's willingness to discuss transplant was not necessarily related to the degree of lung function impairment. Patients reported reliance on CF physicians as a source of accurate information about transplant. Individuals with CF sometimes reported feeling too old or not worthy of transplant. Many had apprehensive or ambivalent feelings towards transplant. Patient-identified barriers and facilitators to lung transplant discussions can inform physicians as they discuss transplant in CF clinic.

Heart failure patients contend with a markedly impaired quality of life, experiencing emotional distress and severe physical discomfort that increases in frequency in the last months of life. Improving communication between patients and providers about goals of care has the potential to improve patient-provider communication and patient outcomes.To determine the effects of a goals-of-care (GoC) intervention compared to usual care on the number of GoC conversations, quality of communication between patients and providers, referrals to palliative care services and completion of advance care directives.A two-group randomized study (n = 40/group) compared a GoC intervention to usual care, conducted in an academic heart failure (HF) clinic. The GoC intervention was a previsit patient activation-education, telephone-based intervention delivered by a nurse. The primary outcome of the study was number of GoC conversations between HF patients and HF providers. Secondary outcomes were quality of communication, number of referrals to palliative care, and completion of advance directives.Patients averaged 58.15 ± 11.26 years of age, with mean left ventricular ejection fraction = 30.31 ± 9.72% and Seattle Heart Failure Model scores = 95.1 ± 1.60. There was a significant increase in goals-of-care conversations (58% vs. 2.6%, P 0.001) and quality of end-of-life communication (P = 0.03) in the GoC group compared to usual care after the intervention. There were no differences between groups on the other outcomes.The GoC intervention resulted in more GoC conversations and higher quality communication between HF patients and providers without increased anxiety or depression. Further studies are needed to assess impact on longer term quality of care and patient outcomes.

Background To describe the study methods, baseline characteristics and burden of study procedures of an intervention designed to reduce family stress symptoms through early support from the palliative care team. Length of stay of ≥ 8 days was the trigger for early palliative care involvement. Methods Cluster-randomized trial with children as the unit of randomization. Up to 3 family members per child were recruited. Family stress symptoms were recorded at baseline, discharge from the ICU, and 3 months post-enrollment. Questionnaire burden was assessed on a 1–10 point scale at each time point and open-ended comments were analyzed to describe the participants' experience in the study. Results 380 family members of 220 children (control = 115 children and 204 family members; intervention = 105 children and 176 family members) were recruited, which represented 50% of all eligible families. Most family participants were parents (86% control; 92% intervention) and female (66% both groups). Retention rates were high through the 3-month follow-up: 93% and 90% for the control and intervention groups respectively. Questionnaire burden was very low: mean (sd) scores were 1.1 (1.6), 0.7 (1.5), and 0.9 (1.6) for the baseline, discharge and follow-up questionnaires, respectively. Comments suggest that participation was beneficial by promoting reflection and self-awareness about stress, coping and resilience, and feeling cared for because the intervention and questionnaires focused on their own well-being. Conclusions The participants' comments regarding the focus on them as the point of intervention reflects the value of conducting research with family members of seriously ill children during ICU stays.