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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.

Background Assessing the impact of coronavirus disease 2019 (COVID-19) on intensive care unit (ICU) providers’ perceptions of resource availability and evaluating the factors associated with emotional distress/burnout can inform interventions to promote provider well-being. Methods Between 23 April and 7 May 2020, we electronically administered a survey to physicians, nurses, respiratory therapists (RTs), and advanced practice providers (APPs) caring for COVID-19 patients in the United States. We conducted a multivariate regression to assess associations between concerns, a reported lack of resources, and 3 outcomes: a primary outcome of emotional distress/burnout and 2 secondary outcomes of (1) fear that the hospital is unable to keep providers safe; and (2) concern about transmitting COVID-19 to their families/communities. Results We included 1651 respondents from all 50 states: 47% were nurses, 25% physicians, 17% RTs, and 11% APPs. Shortages of intensivists and ICU nurses were reported by 12% and 28% of providers, respectively. The largest supply restrictions reported were for powered air purifying respirators (56% reporting restricted availability). Provider concerns included worries about transmitting COVID-19 to their families/communities (66%), emotional distress/burnout (58%), and insufficient personal protective equipment (PPE; 40%). After adjustment, emotional distress/burnout was significantly associated with insufficient PPE access (adjusted relative risk [aRR], 1.43; 95% confidence interval [CI], 1.32–1.55), stigma from community (aRR, 1.32; 95% CI, 1.24–1.41), and poor communication with supervisors (aRR, 1.13; 95% CI, 1.06–1.21). Insufficient PPE access was the strongest predictor of feeling that the hospital is unable to keep providers safe and worries about transmitting infection to their families/communities. Conclusions Addressing insufficient PPE access, poor communication from supervisors, and community stigma may improve provider mental well-being during the COVID-19 pandemic.

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.

BACKGROUND/OBJECTIVES: Many older persons with chronic illness use Physician Orders for Life-Sustaining Treatment (POLST) to document portable medical orders for emergency care. However, some POLSTs contain combinations of orders that do not translate into a cohesive care plan (eg, cardiopulmonary resuscitation [CPR] without intensive care, or intensive care without antibiotics). This study characterizes the prevalence and predictors of POLSTs with conflicting orders. DESIGN: Retrospective cohort study. SETTING: Large academic health system. PARTICIPANTS: A total of 3,123 POLST users with chronic life-limiting illness who died between 2010 and 2015 (mean age = 69.7 years). MEASUREMENTS: In a retrospective review of all POLSTs in participants’ electronic health records, we describe the prevalence of POLSTs with conflicting orders for cardiac arrest and medical interventions, and use clustered logistic regression to evaluate potential predictors of conflicting orders. We also examine the prevalence of conflicts between POLST orders for antibiotics and artificial nutrition with orders for cardiac arrest or medical interventions. RESULTS: Among 3,924 complete POLSTs belonging to 3,123 decedents, 209 (5.3%) POLSTs contained orders to “attempt CPR” paired with orders for “limited interventions” or “comfort measures only”; 745/3169 (23.5%) POLSTs paired orders to restrict antibiotics with orders to deliver non-comfort-only care; and, 170/3098 (5.5%) POLSTs paired orders to withhold artificial nutrition with orders to deliver CPR or intensive care. Among POLSTs with orders to avoid intensive care, orders to attempt CPR were more likely to be present in POLSTs completed earlier in the patient’s illness course (adjusted odds ratio = 1.27 per twofold increase in days from POLST to death; 95% confidence interval = 1.18–1.36; P < .001). CONCLUSION: Although most POLSTs are actionable by clinicians, 5% had conflicting orders for cardiac arrest and medical interventions, and 24% had one or more conflicts between orders for cardiac arrest, medical interventions, antibiotics, and artificial nutrition. These conflicting orders make implementation of POLST challenging for clinicians in acute care settings.

Background: The experience of financial stress during and after critical illness for patients and their family is poorly understood. Objectives: Our objectives were to (1) explore common financial concerns, their contribution to emotional stress, and potential opportunities for interventions to reduce financial stress in patients with critical illness and their family members; and (2) confirm patient and family members' willingness to provide information on this topic. Design: Cross-sectional survey study. Setting/Subjects: Patients (18/24, response rate 75%) and their family members (32/58, response rate 55%) from two prior randomized trials at an urban, level 1 Trauma center. Results: Ten (56%) patients and 19 (70%) family members reported financial worries during an intensive care unit (ICU) stay; 70% of both groups reported financial worries post-ICU discharge. Thirty percent (3/10) of patients and 43% (10/23) of family members who were not asked about financial concerns by hospital staff wished that they had been asked. Both patients and family believed that it would have been helpful to have information about insurance coverage, interpreting hospital bills, and estimated out-of-pocket costs. Among patients, 47% favored receiving these services after the ICU stay (7/15), while 20% (3/15) preferred these services in the ICU; 73% of family members preferred receiving them during the ICU stay (22/30), while 27% (8/30) preferred these services after the ICU stay. Conclusion: Our findings suggest that the experience of financial stress and the worry it causes during and after critical illness are common and potentially modifiable with simple targeted interventions.

Purpose: The purposes of the study were to provide richer context for families' quantitative assessments of the quality of ICU care, and to describe further quality areas of importance for family members.Materials and methods: Free-text comments from 1077 family members of 920 patients focusing on family evaluation of ICU quality of care were analyzed using content analysis. Twenty-one Danish and Dutch ICUs participated from October 2014 to June 2015.Results: Four themes emerged as important to families: information, clinician skills, ICU environment, and discharge from the ICU. Families highlighted the importance of receiving information that was accessible, understandable and honest. They indicated that quality care was ensured by having clinicians who were both technically and interpersonally competent. The ICU environment and the circumstances of the transfer out of the ICU were described as contributing to quality of care. The comments identified room for improvement within all themes.Conclusions: The study highlights the importance of including both technical and emotional care for patients and families and the consequent need to focus on clinicians' mastery of interpersonal skills. (C) 2018 Elsevier Inc. All rights reserved.

Background The care of patients in the United States who have ESKD is often shaped by their hopes and prognostic expectations related to kidney transplant. Little is known about how patients' engagement in the transplant process might relate to patterns of end-of-life care. Methods We compared six measures of intensity of end-of-life care among adults in the United States with ESKD who died between 2005 and 2014 after experiencing differing exposure to the kidney transplant process. Results Of 567,832 decedents with ESKD, 27,633 (5%) had a functioning kidney transplant at the time of death, 14,653 (3%) had a failed transplant, 16,490 (3%) had been removed from the deceased donor waitlist, 17,010 (3%) were inactive on the waitlist, 11,529 (2%) were active on the waitlist, and 480,517 (85%) had never been waitlisted for or received a transplant (reference group). In adjusted analyses, compared with the reference group, patients exposed to the transplant process were significantly more likely to have been admitted to an intensive care unit and to have received an intensive procedure in the last 30 days of life; they were also significantly more likely to have died in the hospital. Those who died on the transplant waitlist were also less likely than those in the reference group to have been enrolled in hospice and to have discontinued dialysis before death. Conclusions Patients who had engaged in the kidney transplant process received more intensive patterns of end-of-life care than other patients with ESKD. These findings support the relevance of advance care planning, even for this relatively healthy segment of the ESKD population.

Background: Multiple chronic conditions (MCCs) are associated with increased intensity of end-of-life (EOL) care, but their effect is not well explored in patients with cancer. Objective: We examined EOL health care intensity and advance care planning (ACP) documentation to better understand the association between MCCs and these outcomes. Design: Retrospective cohort study. Setting/Subjects: Patients aged 18+ years at UW Medicine who died during 2010-2017 with poor prognosis cancer, with or without chronic liver disease, chronic pulmonary disease, coronary artery disease, dementia, diabetes with end-stage organ damage, end-stage renal disease, heart failure, or peripheral vascular disease. Measurements: ACP documentation 30+ days before death, in-hospital death, and inpatient or intensive care unit (ICU) admission in the last 30 days. We performed logistic regression for outcomes. Results: Of 15,092 patients with cancer, 10,596 (70%) had 1+ MCCs (range 1-8). Patients with cancer and heart failure had highest odds of hospitalization (odds ratio [OR] 1.67, 95% confidence interval [CI] 1.46-1.91), ICU admission (OR 2.06, 95% CI 1.76-2.41), or in-hospital death (OR 1.62, 95% CI 1.43-1.84) versus patients with cancer and other conditions. Patients with ACP 30+ days before death had lower odds of in-hospital death (OR 0.65, 95% CI 0.60-0.71), hospitalization (OR 0.67, 95% CI 0.61-0.74), or ICU admission (OR 0.71, 95% CI 0.64-0.80). Conclusions: Patients with ACP 30+ days before death had lower odds of high-intensity EOL care. Further research needs to explore how to best use ACP to ensure patients receive care aligned with patient and family goals for care.

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.

Purpose Patient and family engagement plays an important role in the intensive care unit (ICU), however the degree to which practices are being implemented globally is not known. Materials To provide insights, a task force of the World Federation of Societies of Intensive and Critical Care Medicine conducted a cross-sectional survey. Results A total of 345 responses were received from 40 countries. Varying practices with respect to patient and family engagement were reported. Majority of those responding to individual survey questions (n=109, 61.2%) provided written materials on the ICU to family members. Just over half (n=184, 53.8%) of respondents identified that structured patient and family care conferences were held to review goals of care. Practices such as open visitation were reported by 39.6% (n=136), and family presence during resuscitation were reported to be fully (12%, n=41) or somewhat adopted (33%, n=113) by less than half of respondents. ICU diaries, music or pet therapy, or the use of a patient and family advisory group were reported by less than half of respondents. Conclusions We document and hence provide successful implementation techniques, tactics, and strategies that could help clinicians to address barriers to implementing patient and family engagement in the ICU.

Background Adolescents and young adults (AYAs) with cancer are at risk for poor psychosocial outcomes. This study aimed to determine whether a novel intervention targeting resilience resources would improve patient-reported resilience, quality of life, and psychological distress. Methods In this parallel, phase 2 randomized controlled trial, English-speaking AYAs (12-25 years old) with cancer were randomized to the Promoting Resilience in Stress Management (PRISM) intervention or usual care (UC). PRISM is a brief, skills-based intervention targeting stress management, goal setting, cognitive reframing, and meaning making. Participants completed surveys at enrollment and 6 months. Mixed effects regression models evaluated associations between PRISM and the primary outcome (10-item Connor-Davidson Resilience Scale scores) and secondary outcomes (generic and cancer-related quality of life [Pediatric Quality of Life modules], psychological distress [Kessler-6], and anxiety/depression [Hospital Anxiety and Depression]) at 6 months. Results Ninety-two AYAs were enrolled, were randomized, and completed baseline surveys (48 in the PRISM group and 44 in the UC group); 73% were 12 to 17 years old, and 62% had leukemia or lymphoma. Attrition was primarily due to medical complications and/or death; 36 PRISM participants and 38 UC participants completed 6-month surveys. PRISM was associated with improved resilience (+3.0 points; 95% confidence interval [CI], 0.5-5.4; P = .02) and cancer-specific quality of life (+9.6; 95% CI, 2.6-16.7; P = .01) and reduced psychological distress (-2.1; 95% CI, -4.1 to -0.2; P = .03) but not generic quality of life (+7.2; 95% CI, -0.8 to 15.2; P = .08). Although anxiety was similar between the groups, 2 PRISM participants (6%) and 8 UC participants (21%) met the criteria for depression at 6 months (odds ratio, 0.09; 95% CI, 0.01-1.09; P = .06). Conclusions PRISM was associated with improved psychosocial outcomes in comparison with UC, suggesting that brief, skills-based interventions for AYAs may provide a benefit.

Conflicts of interest are a normal part of human social intercourse. They become problematic when there is a power differential between participants in the setting of relationships requiring a high degree of trust, as in healthcare. In this white paper we consider how these conflicts may be detected and mitigated. Following Medline search and reference chaining, we undertook a narrative review of the literature with iterative discussion. Conflicts of interest may be financial, professional or personal, and may operate at the level of the individual or the organisation. Unmanaged, they become a source of bias which places the interests of the professional or the organisation before those of the patient. Reported with increasing frequency, conflicts damage trust, harm patients, and defraud the health system. We make 15 recommendations for minimising conflicts of interest. Nationally funded open-access registries should be established to permit complete disclosure of financial, professional, and personal relationships with the potential for driving bias in research, clinical practice, or health management. Governance of disclosure should be the responsibility of employing organisations through annual staff appraisals, audited by national research integrity committees. Research fraud should incur suspension of the license to practice. Organisations should monitor staff perceptions of ethical climate to enhance awareness of staff behaviours and the potential for misconduct driven by academic pressures. Clear separation of advisory and voting roles is needed in best practice guideline panels. Professional societies and scientific journals should display conflict of interest policies for their own staff and officers as well as for speakers and authors. Undergraduates should not be exposed to pharmaceutical promotions masquerading as education. Undergraduate and postgraduate training programmes should include teaching about managing conflicts of interest and identifying research misconduct.

Patient-centered outcomes research (PCOR) represents a paradigm shift in research methods aimed to create the body of evidence that supports clinical practice and informs health care decisions. PCOR integrates patients and other key stakeholders including family members, policy makers, clinicians, and patient advocates and advocacy groups as research partners throughout all stages of the research process. The importance of PCOR has received increased recognition, yet there is little evidence available to help guide researchers interested in the design and conduct of PCOR. In May 2014, we convened a workshop to identify key issues related to designing, conducting, and disseminating findings from PCOR studies. Workshop participants included a diverse group of patients, patient advocates, clinicians (physicians, nurses, psychologists, and advanced practice providers), researchers, administrators, and funders within and beyond the pulmonary, critical care, and sleep medicine communities. Participants identified important issues and considerations to address when undertaking PCOR. In this report, we summarize the results of this workshop to inform members of the pulmonary, sleep, and critical care community interested in participating in PCOR. Key findings include the following: 1) requirements for research to be considered PCOR; 2) the potential significant impact of PCOR on patients, clinicians, and researchers; 3) guiding principles and practical strategies to form successful patient-centered research partnerships, conduct PCOR, and disseminate study results to a broad audience of stakeholders; 4) benefits and challenges of PCOR for researchers; and 5) resources available within the American Thoracic Society to help with the conduct of PCOR.

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.

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.

OBJECTIVE: Little is known about the experience of financial stress for patients who survive critical illness or their families. Our objective was to describe the prevalence of financial stress among critically ill patients and their families, identify clinical and demographic characteristics associated with this stress, and explore associations between financial stress and psychological distress. DESIGN: Secondary analysis of a randomized trial comparing a coping skills training program and an education program for patients surviving acute respiratory failure and their families. SETTING: Five geographically diverse hospitals. PARTICIPANTS: Patients (n=175) and their family members (n=85) completed surveys within 2 weeks of arrival home and 3 and 6 months after randomization. MEASUREMENTS AND MAIN RESULTS: We used regression analyses to assess associations between patient and family characteristics at baseline and financial stress at 3 and 6 months. We used path models and mediation analyses to explore relationships between financial stress, symptoms of anxiety and depression, and global mental health. Serious financial stress was high at both time points, and was highest at 6 months (42.5%) among patients and at 3 months (48.5%) among family members. Factors associated with financial stress included female sex, young children at home, and baseline financial discomfort. Experiencing financial stress had direct effects on symptoms of anxiety (β=0.260, p

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.

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.

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.

Purpose: Despite guidelines emphasizing symptom management over aggressive treatment, end-of-life care for persons with cancer in the United States is highly variable. In consultation with a regional collaboration of patients, providers, and payers, we investigated indicators of high-quality end-of-life care to describe patterns of care, identify areas for improvement, and inform future interventions to enhance end-of-life care for patients with cancer. Methods: We linked insurance claims to clinical information from the western Washington SEER database. We included persons ≥ 18 years of age who had been diagnosed with an invasive solid tumor between January 1, 2007, and December 31, 2015, and who had a recorded death date, were enrolled in a commercial plan for the last month of life, and made at least one insurance claim in the last 90 days of life. Results: In the last month of life, among 6,568 commercially insured patients, 56.3% were hospitalized and 48.6% underwent at least one imaging scan. Among patients younger than 65 years of age, 31.4% were enrolled in hospice; of those younger than 65 years of age who were not enrolled in hospice, 40.5% had received an opioid prescription. Over time, opioid use in the last 30 days of life among young adults not enrolled in hospice dropped from 44.7% in the period 2007 to 2009 to 42.5% in the period 2010 to 2012 and to 36.7% in the period 2013 to 2015. Conclusion: Hospitalization and high-cost imaging scans are burdensome to patients and caregivers at the end of life. Our findings suggest that policies that facilitate appropriate imaging, opioid, and hospice use and that encourage supportive care may improve end-of-life care and quality of life.

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.

Introduction There is relatively sparse literature on the use of administrative datasets for research in patients with adult congenital heart disease (ACHD). The goal of this analysis is to examine the accuracy of administrative data for identifying patients with ACHD who died. Methods A list of the International Classification of Diseases codes representing ACHD of moderate- or great-complexity was created. A search for these codes in the electronic health record of adults who received care in 2010-2016 was performed, and used state death records to identify patients who died during this period. Manual record review was completed to evaluate performance of this search strategy. Identified patients were also compared with a list of patients with moderate- or great-complexity ACHD known to have died. Results About 134 patients were identified, of which 72 had moderate- or great-complexity ACHD confirmed by manual review, yielding a positive predictive value of 0.54 (95% CI 0.45, 0.62). Twenty six patients had a mild ACHD diagnosis. Thirty six patients had no identified ACHD on record review. Misidentifications were attributed to coding error for 19 patients (53%), and to acquired ventricular septal defects for 11 patients (31%). Diagnostic codes incorrect more than 50% of the time were those for congenitally corrected transposition, endocardial cushion defect, and hypoplastic left heart syndrome. Only 1 of 21 patients known to have died was not identified by the search, yielding a sensitivity of 0.95 (0.76, 0.99). Conclusion Use of administrative data to identify patients with ACHD of moderate or great complexity who have died had good sensitivity but suboptimal positive predictive value. Strategies to improve accuracy are needed. Administrative data is not ideal for identification of patients in this group, and manual record review is necessary to confirm these diagnoses.

Context Achieving adequate response rates from family members of critically ill patients can be challenging, especially when assessing psychological symptoms. Objectives To identify factors associated with completion of surveys about psychological symptoms among family members of critically ill patients. Methods Using data from a randomized trial of an intervention to improve communication between clinicians and families of critically ill patients, we examined patient-level and family-level predictors of the return of usable surveys at baseline, three months, and six months ( n = 181, 171, and 155, respectively). Family-level predictors included baseline symptoms of psychological distress, decisional independence preference, and attachment style. We hypothesized that family with fewer symptoms of psychological distress, a preference for less decisional independence, and secure attachment style would be more likely to return questionnaires. Results We identified several predictors of the return of usable questionnaires. Better self-assessed family member health status was associated with a higher likelihood and stronger agreement with a support-seeking attachment style with a lower likelihood, of obtaining usable baseline surveys. At three months, family-level predictors of return of usable surveys included having usable baseline surveys, status as the patient's legal next of kin, and stronger agreement with a secure attachment style. The only predictor of receipt of surveys at six months was the presence of usable surveys at three months. Conclusion We identified several predictors of the receipt of surveys assessing psychological symptoms in family of critically ill patients, including family member health status and attachment style. Using these characteristics to inform follow-up mailings and reminders may enhance response rates.

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.

Extracorporeal life support can support patients with severe forms of cardiac and respiratory failure. Uncertainty remains about its optimal use owing in large part to its resource-intensive nature and the high acuity illness in supported patients. Specific issues include the identification of patients most likely to benefit, the appropriate duration of support when prognosis is uncertain, and what to do when patients become dependent on extracorporeal life support but no longer have hope for recovery or transplantation. Careful deliberation of ethical principles and potential dilemmas should be made when considering the use of extracorporeal life support in advanced cardiopulmonary failure.

OBJECTIVES: There is growing recognition that high-quality care for patients and families in the ICU requires exemplary interprofessional collaboration and communication. One important aspect is how the ICU team makes complex decisions. However, no recommendations have been published on interprofessional shared decision-making. The aim of this project is to use systematic review and normative analysis by experts to examine existing evidence regarding interprofessional shared decision-making, describe its principles and provide ICU clinicians with recommendations regarding its implementation.DATA SOURCES: We conducted a systematic review using MEDLINE, Cumulative Index to Nursing and Allied Health Literature, and Cochrane databases and used normative analyses to formulate recommendations regarding interprofessional shared decision-making.STUDY SELECTION: Three authors screened titles and abstracts in duplicate.DATA SYNTHESIS: Four papers assessing the effect of interprofessional shared decision-making on quality of care were identified, suggesting that interprofessional shared decision-making is associated with improved processes and outcomes. Five recommendations, largely based on expert opinion, were developed: 1) interprofessional shared decision-making is a collaborative process among clinicians that allows for shared decisions regarding important treatment questions; 2) clinicians should consider engaging in interprofessional shared decision-making to promote the most appropriate and balanced decisions; 3) clinicians and hospitals should implement strategies to foster an ICU climate oriented toward interprofessional shared decision-making; 4) clinicians implementing interprofessional shared decision-making should consider incorporating a structured approach; and 5) further studies are needed to evaluate and improve the quality of interprofessional shared decision-making in ICUs.CONCLUSIONS: Clinicians should consider an interprofessional shared decision-making model that allows for the exchange of information, deliberation, and joint attainment of important treatment decisions.

Objectives To characterize physicians' practices and attitudes toward the initiation, limitation, and withdrawal of venovenous extracorporeal membrane oxygenation for severe respiratory failure and evaluate factors associated with these attitudes. Design Electronic, cross-sectional, scenario-based survey. Setting Extracorporeal membrane oxygenation centers affiliated with the Extracorporeal Life Support Organization and the International Extracorporeal Membrane Oxygenation Network. Subjects Attending-level physicians with experience managing adult patients receiving venovenous extracorporeal membrane oxygenation. Interventions None. Measurements and main results Five-hundred thirty-nine physicians in 39 countries across six continents completed the survey. Factors that influenced the decision to limit extracorporeal membrane oxygenation initiation included older patient age (46.9%), additional organ failures (37.7%), and prolonged mechanical ventilation (35.1%). Patient comorbidities (70.5%), patient's wishes (56.0%), and etiology of respiratory failure (37.7%) were factors that influenced the decision to withdraw extracorporeal membrane oxygenation. In multivariable analysis, factors associated with increased odds of withdrawing life-sustaining therapies included pulmonary fibrosis, stroke, surrogate's desire to withdraw, lack of knowledge regarding patient's or surrogate's wishes in the setting of fibrosis, not initiating extracorporeal membrane oxygenation in the baseline scenario, and respondent religiosity. Factors associated with decreased odds of withdrawal included practicing in an environment where it is not legally possible to make decisions against patient or surrogate wishes. Most respondents (90.5%) involved other physicians in treatment decisions for extracorporeal membrane oxygenation patients, whereas only 53.2%, 45.3%, and 29.5% of respondents involved surrogates, awake patients, or bedside nurses, respectively. Conclusions Patient and physician-level factors were associated with decision-making regarding extracorporeal membrane oxygenation initiation and withdrawal, including patient prognosis and knowledge of patient or surrogate wishes. Respondents reported low rates of engaging in shared decision-making when managing patients receiving extracorporeal membrane oxygenation.

CONTEXT. Advance care planning (ACP) is difficult in the setting of a life-threatening trauma but may be equally important in this context, especially with increasing numbers of trauma victims being elderly or having multimorbidity. OBJECTIVES. Identify predictors of absent ACP documentation in the electronic health records of patients with underlying chronic illness who died of traumatic injury. METHODS. We used death records and electronic health records to identify decedents with chronic life-limiting illness who died of traumatic injury between 2010 and 2015 and to evaluate factors associated with documentation of living wills, durable powers of attorney, or physician orders for life-sustaining treatment. RESULTS. Only 22% of decedents had ACP documentation at time of injury. Among those without preinjury ACP documentation, 4% completed ACP documentation after injury. In multipredictor analyses, patients were less likely to have ACP documentation at the time of injury if they were younger (P < 0.001), had fewer chronic illnesses (P = 0.002), and had fewer nonsurgical hospitalizations (P = 0.042) in the year before injury. Among patients without ACP documentation before injury, those with fewer postinjury nonsurgical hospitalizations were less likely to complete ACP documentation after injury (P = 0.019). CONCLUSIONS. Our findings suggest that patient characteristics play an important role in the completion of ACP among patients with chronic life-limiting illness and who died from sudden severe injury. Interventions to improve ACP completion by patients with serious chronic conditions have the potential for increasing goal-concordant care in the event of traumatic injury.

Importance Prognostic understanding can shape patients' treatment goals and preferences. Patients undergoing dialysis in the United States have limited life expectancy and may receive end-of-life care directed at life extension. Little is known about their prognostic expectations. Objective To understand the prognostic expectations of patients undergoing dialysis and how these relate to care planning, goals, and preferences. Design, Setting, and Participants Cross-sectional survey study of 996 eligible patients treated with regular dialysis at 31 nonprofit dialysis facilities in 2 metropolitan areas (Seattle, Washington, and Nashville, Tennessee) between April 2015 and October 2018. After a pilot phase, 1434 eligible patients were invited to participate (response rate, 69.5%). To provide a context for interpreting survey participants' prognostic estimates, United States Renal Data System standard analysis files were used to construct a comparison cohort of 307 602 patients undergoing in-center hemodialysis on January 1, 2006, and followed for death through July 31, 2017. Final analyses for this study were conducted between November 2018 and March 2019. Exposures Responses to the question "How long would you guess people your age with similar health conditions usually live?" ( 10 years, or not sure). Main Outcomes and Measures Self-reported (1) documentation of a surrogate decision-maker, (2) documentation of treatment preferences, (3) values around life prolongation, (4) preferences for receipt of cardiopulmonary resuscitation and mechanical ventilation, and (5) desired place of death. Results Of the 996 survey respondents, the mean (SD) age was 62.7 (13.9) years, and 438 (44.0%) were women. Overall, 112 (11.2%) survey respondents selected a prognosis of fewer than 5 years, 150 (15.1%) respondents selected 5 to 10 years, 330 (33.1%) respondents selected more than 10 years, and 404 (40.6%) were not sure. By comparison, 185 427 (60.3%) prevalent US in-center patients undergoing hemodialysis died within 5 years, 58 437 (19.0%) died within 5 to 10 years, and 63 738 (20.7%) lived more than 10 years. In analyses adjusted for participant characteristics, survey respondents with a prognostic expectation of more than 10 years (vs

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.