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Transferring care of a patient is a critical process. The objective of this study was to evaluate a checklist to standardize handoffs from acute care to the intensive care unit (ICU). This was a single-center, before-after study of a checklist to standardize transfers of patients from acute care to the medical-cardiac ICU. Clinicians completed surveys about handoffs before and after checklist implementation. The association between study period and survey data was analyzed using multivariable logistic regression with cross-classified multilevel models. Surveys were completed by 179 clinicians. After checklist implementation, handoffs were more likely to occur in the ICU (OR 17.23; 95% CI, 1.81-164.19) and cover patient treatment preferences (OR 2.73; 95% CI, 1.12-6.66). However, checklist uptake was suboptimal (30% of responses indicated checklist use). Implementation of a checklist during acute care to ICU transfers is challenging. Signals suggesting process improvement warrant additional study.

ImportanceDiscussions about goals of care are important for high-quality palliative care yet are often lacking for hospitalized older patients with serious illness.ObjectiveTo evaluate a communication-priming intervention to promote goals-of-care discussions between clinicians and hospitalized older patients with serious illness.Design, Setting, and ParticipantsA pragmatic, randomized clinical trial of a clinician-facing communication-priming intervention vs usual care was conducted at 3 US hospitals within 1 health care system, including a university, county, and community hospital. Eligible hospitalized patients were aged 55 years or older with any of the chronic illnesses used by the Dartmouth Atlas project to study end-of-life care or were aged 80 years or older. Patients with documented goals-of-care discussions or a palliative care consultation between hospital admission and eligibility screening were excluded. Randomization occurred between April 2020 and March 2021 and was stratified by study site and history of dementia.InterventionPhysicians and advance practice clinicians who were treating the patients randomized to the intervention received a 1-page, patient-specific intervention (Jumpstart Guide) to prompt and guide goals-of-care discussions.Main Outcomes and MeasuresThe primary outcome was the proportion of patients with electronic health record–documented goals-of-care discussions within 30 days. There was also an evaluation of whether the effect of the intervention varied by age, sex, history of dementia, minoritized race or ethnicity, or study site.ResultsOf 3918 patients screened, 2512 were enrolled (mean age, 71.7 [SD, 10.8] years and 42% were women) and randomized (1255 to the intervention group and 1257 to the usual care group). The patients were American Indian or Alaska Native (1.8%), Asian (12%), Black (13%), Hispanic (6%), Native Hawaiian or Pacific Islander (0.5%), non-Hispanic (93%), and White (70%). The proportion of patients with electronic health record–documented goals-of-care discussions within 30 days was 34.5% (433 of 1255 patients) in the intervention group vs 30.4% (382 of 1257 patients) in the usual care group (hospital- and dementia-adjusted difference, 4.1% [95% CI, 0.4% to 7.8%]). The analyses of the treatment effect modifiers suggested that the intervention had a larger effect size among patients with minoritized race or ethnicity. Among 803 patients with minoritized race or ethnicity, the hospital- and dementia-adjusted proportion with goals-of-care discussions was 10.2% (95% CI, 4.0% to 16.5%) higher in the intervention group than in the usual care group. Among 1641 non-Hispanic White patients, the adjusted proportion with goals-of-care discussions was 1.6% (95% CI, −3.0% to 6.2%) higher in the intervention group than in the usual care group. There was no evidence of differential treatment effects of the intervention on the primary outcome by age, sex, history of dementia, or study site.Conclusions and RelevanceAmong hospitalized older adults with serious illness, a pragmatic clinician-facing communication-priming intervention significantly improved documentation of goals-of-care discussions in the electronic health record, with a greater effect size in racially or ethnically minoritized patients.Trial RegistrationClinicalTrials.gov Identifier: NCT04281784

CONTEXT: Patients with underlying chronic illness requiring mechanical ventilation for acute respiratory failure are at risk for poor outcomes and high costs. OBJECTIVES: Identify characteristics at time of intensive care unit (ICU) admission that identify patients at highest risk for high-intensity, costly care. METHODS: Retrospective cohort study using electronic health and financial records (2011–2017) for patients requiring ≥48 hours of mechanical ventilation with ≥1 underlying chronic condition at an academic healthcare system. Main outcome was total cost of index hospitalization. Exposures of interest included number and type of chronic conditions. We used finite mixture models to identify the highest-cost group. RESULTS: 4,892 patients met study criteria. Median cost for index hospitalization was $135,238 (range, $9,748-$3,176,065). Finite mixture modelling identified three classes with mean costs of $89,980, $150,603, and $277,712. Patients more likely to be in the high-cost class were: 1) < 72 years old (OR: 2.03; 95% CI:1.63, 2.52); 2) with dementia (OR: 1.55; 95% CI:1.17, 2.06) or chronic renal failure (OR: 1.27; 95% CI:1.08, 1.48); 3) weight loss ≥ 5% in year prior to hospital admission (OR: 1.25; 95% CI:1.05, 1.48); and 4) hospitalized during prior year (OR: 1.92; 95% CI:1.58, 2.35). CONCLUSION: Among patients with underlying chronic illness and acute respiratory failure, we identified characteristics associated with the highest costs of care. Identifying these patients may be of interest to healthcare systems and hospitals and serve as one indication to invest resources in palliative and supportive care programs that ensure this care is consistent with patients’ goals.

Goals-of-care discussions are important for patient-centered care among hospitalized patients with serious illness. However, there are little data on the occurrence, predictors, and timing of these discussions.To examine the occurrence, predictors, and timing of electronic health record (EHR)-documented goals-of-care discussions for hospitalized patients.This retrospective cohort study used natural language processing (NLP) to examine EHR-documented goals-of-care discussions for adults with chronic life-limiting illness or age ≥80 hospitalized 2015-2019. The primary outcome was NLP-identified documentation of a goals-of-care discussion during the index hospitalization. We used multivariable logistic regression to evaluate associations with baseline characteristics.Of 16,262 consecutive, eligible patients without missing data, 5,918 (36.4%) had a documented goals-of-care discussion during hospitalization; approximately 57% of these discussions occurred within 24 hours of admission. In multivariable analysis, documented goals-of-care discussions were more common for women (OR=1.26, 95%CI 1.18-1.36), older patients (OR=1.04 per year, 95%CI 1.03-1.04), and patients with more comorbidities (OR=1.11 per Deyo-Charlson point, 95%CI 1.10-1.13), cancer (OR=1.88, 95%CI 1.72-2.06), dementia (OR=2.60, 95%CI 2.29-2.94), higher acute illness severity (OR=1.12 per National Early Warning Score point, 95%CI 1.11-1.14), or prior advance care planning documents (OR=1.18, 95%CI 1.08-1.30). Documentation of these discussions was less common for racially or ethnically minoritized patients (OR=0.823, 95%CI 0.75-0.90).Among hospitalized patients with serious illness, documented goals-of-care discussions identified by NLP were more common among patients with older age and increased burden of acute or chronic illness, and less common among racially or ethnically minoritized patients. This suggests important disparities in goals-of-care discussions.

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.

High-quality goals-of-care communication is critical to delivering goal-concordant, patient-centered care to hospitalized patients with chronic life-limiting illness. However, implementation and documentation of goals-of-care discussions remain important shortcomings in many health systems.To evaluate the efficacy, feasibility, and acceptability of a patient-facing and clinician-facing communication-priming intervention to promote goals-of-care communication for patients hospitalized with serious illness.This randomized clinical trial enrolled patients from November 6, 2018, to February 18, 2020. The setting was 2 hospitals in an academic health care system in Seattle, Washington. Participants included hospitalized adults with chronic life-limiting illness, aged 65 years or older and with markers of frailty, or aged 80 years or older. Data analysis was performed from August 2020 to August 2021.Patients were randomized to usual care with baseline questionnaires (control) vs the Jumpstart communication-priming intervention. Patients or surrogates in the intervention group and their clinicians received patient-specific Jumpstart Guides populated with data from questionnaires and the electronic health records (EHRs) that were designed to prompt and guide a goals-of-care discussion.The primary outcome was EHR documentation of a goals-of-care discussion between randomization and hospital discharge. Additional outcomes included patient-reported or surrogate-reported goals-of-care discussions, patient-reported or surrogate-reported quality of communication, and intervention feasibility and acceptability.Of 428 eligible patients, this study enrolled 150 patients (35% enrollment rate; mean [SD] age, 59.2 [13.6] years; 66 women [44%]; 132 [88%] by patient consent and 18 [12%] by surrogate consent). Seventy-five patients each were randomized to the intervention and control groups. Compared with the control group, the cumulative incidence of EHR-documented goals-of-care discussions between randomization and hospital discharge was higher in the intervention group (16 of 75 patients [21%] vs 6 of 75 patients [8%]; risk difference, 13% [95% CI, 2%-24%]; risk ratio, 2.67 [95% CI, 1.10-6.44]; P = .04). Patient-reported or surrogate-reported goals-of-care discussions did not differ significantly between groups (30 of 66 patients [45%] vs 36 of 66 patients [55%]), although the intrarater consistency of patient and surrogate reports was poor. Patient-rated or surrogate-rated quality of communication did not differ significantly between groups. The intervention was feasible and acceptable to patients, surrogates, and clinicians.In this randomized clinical trial, a patient-facing and clinician-facing communication priming intervention for seriously ill, hospitalized patients promoted EHR-documented goals-of-care discussions before discharge with good feasibility and acceptability. Communication-priming interventions should be reexamined in a larger randomized clinical trial to better understand their effectiveness in the inpatient setting.ClinicalTrials.gov Identifier: NCT03746392.

Interventions to promote serious illness conversations have shown promise in promoting high-quality care. However, in randomized trials, some participants may benefit more from the intervention than others.To examine heterogeneity of treatment effect and identify subgroups of patients with serious illness who might benefit most from interventions to enhance communication about goals of care.We used data from a multi-center cluster-randomized trial evaluating a communication intervention to increase goals-of-care discussions in the outpatient setting. Patients (n = 249 intervention, n = 288 usual care) had serious illness with an expected median survival of two years. Using model-based recursive partitioning, we tested heterogeneity of the intervention's effect on the occurrence of patient-reported goals-of-care discussions, electronic health record documentation of goals-of-care discussions, patients' ratings of quality of communication, and patients' symptoms of psychological distress at three and six months.We found two significant interactions. For patients' overall rating of clinician communication (n = 251), the intervention effect was positive for patients with higher household income, but not those with lower income (P0.001). For patients' symptoms of depression at six months (n = 288), the intervention was associated with fewer symptoms of depression among those whose self-assessed health was poor, but not among those with fair to excellent health (P0.001).Identifying heterogeneity of treatment effect can be a valuable exercise following completion of a randomized trial. Interactions between the intervention and patient income and self-assessed health suggest these factors could be used to design more effective interventions to enhance communication about goals of care.

Purpose To examine heterogeneity of quality-of-care ratings within families and to examine possible predictors of concordance. Materials and methods We examined two aspects of agreement within families: response similarity and the amount of exact concordance in responses in a cohort of Danish ICU family members participating in a questionnaire survey (the European Quality Questionnaire: euroQ2). Results Two hundred seventy-four family respondents representing 122 patients were included in the study. Identical ratings between family members occurred in 28%–59% of families, depending upon the specific survey item. In a smaller sample of 28 families whose patients died, between 39% and 86% gave identical responses to items rating end-of-life care. There was more response variance within than between families, yielding low estimates of intrafamily correlation. Statistics correcting for chance agreement also suggested modest within-family agreement. Conclusions The finding that variance is higher within than between families suggests the value of including multiple participants within a family in order to capture varying points of view.

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.

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

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

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.

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: 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.

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.

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

Background: Although racial/ethnic minorities receive more intense, nonbeneficial healthcare at the end of life, the role of race/ethnicity independent of other social determinants of health is not well understood. Objectives: Examine the association between race/ethnicity, other key social determinants of health, and healthcare intensity in the last 30 days of life for those with chronic, life-limiting illness. Subjects: We identified 22,068 decedents with chronic illness cared for at a single healthcare system in Washington State who died between 2010 and 2015 and linked electronic health records to death certificate data. Design: Binomial regression models were used to test associations of healthcare intensity with race/ethnicity, insurance status, education, and median income by zip code. Path analyses tested direct and indirect effects of race/ethnicity with insurance, education, and median income by zip code used as mediators. Measurements: We examined three measures of healthcare intensity: (1) intensive care unit admission, (2) use of mechanical ventilation, and (3) receipt of cardiopulmonary resuscitation. Results: Minority race/ethnicity, lower income and educational attainment, and Medicaid and military insurance were associated with higher intensity care. Socioeconomic disadvantage accounted for some of the higher intensity in racial/ethnic minorities, but most of the effects were direct effects of race/ethnicity. Conclusions: The effects of minority race/ethnicity on healthcare intensity at the end of life are only partly mediated by other social determinants of health. Future interventions should address the factors driving both direct and indirect effects of race/ethnicity on healthcare intensity.

Background: Racial/ethnic minority patients with nonhematologic malignancies (non-HM) have lower rates of hospice care, advance directive use, and palliative care utilization than non-Hispanic white (NHW) patients. Less is known regarding racial/ethnic minority patients with hematologic malignancies (HM). Objectives: To study hospital utilization among racial/ethnic minority patients with HM and compare end-of-life outcome measures to patients with non-HM. Methods: We performed a retrospective cohort study (2010–2015) using electronic health records from an integrated academic health center to study differences in hospital utilization patterns and documentation of advance care planning between patients with HM and non-HM. In the subgroup with hematologic malignancy, we examined outcomes associated with racial/ethnic minority status. Results: Among all patients in the last 30 days of life, those with HM had higher rates of inpatient care (odds ratio [OR], 1.96; 95% CI: 1.74–2.20; p

Purpose: Knowledge of families' perspective of quality of intensive care unit (ICU) care is important, especially with regard to end-of-life (EOL) care. Adaptation of the US-developed "Quality of dying and death questionnaire" (QODD) to a European setting is lacking. The primary aim of this study is to examine the euroQODD's usability and its assessments of EOL care in a cohort of Danish and Dutch family members.Methods: Family members of patients dying in an ICU after a stay of at least 48 h were sent the euroQODD three weeks after the patient died. Selected patient characteristics were obtained from hospital records. A total of 11 Danish and 10 Dutch ICU's participated.Results: 217 family members completed the euroQODD part of the euroQ2 questionnaire. Overall rating of care was high, a median of 9 in Netherlands and 10 in Denmark on a 0-10 scale (p Conclusions: The majority of family members were satisfied with the quality of EOL care and quality of dying and death. They agreed with decisions made to limit treatment and most felt they had participated to some extent in decision-making, although some would have preferred greater participation. Addition of items that can be accurately treated as effect indicators will improve the instrument's usefulness in measuring the overall quality of dying and death. (C) 2017 The Authors. Published by Elsevier Inc.

As our population ages and the burden of chronic illness rises, there is increasing need to implement quality metrics that measure and benchmark care of the seriously ill, including the delivery of both primary care and specialty palliative care. Such metrics can be used to drive quality improvement, value-based payment, and accountability for population-based outcomes.In this article, we examine use of the electronic health record (EHR) as a tool to assess quality of serious illness care through narrative review and description of a palliative care quality metrics program in a large healthcare system.In the search for feasible, reliable, and valid palliative care quality metrics, the EHR is an attractive option for collecting quality data on large numbers of seriously ill patients. However, important challenges to using EHR data for quality improvement and accountability exist, including understanding the validity, reliability, and completeness of the data, as well as acknowledging the difference between care documented and care delivered. Challenges also include developing achievable metrics that are clearly linked to patient and family outcomes and addressing data interoperability across sites as well as EHR platforms and vendors. This article summarizes the strengths and weakness of the EHR as a data source for accountability of community- and population-based programs for serious illness, describes the implementation of EHR data in the palliative care quality metrics program at the University of Washington, and, based on that experience, discusses opportunities and challenges. Our palliative care metrics program was designed to serve as a resource for other healthcare systems.Although the EHR offers great promise for enhancing quality of care provided for the seriously ill, significant challenges remain to operationalizing this promise on a national scale and using EHR data for population-based quality and accountability.

Background Families’ perspectives are of great importance in evaluating quality of care in the intensive care unit (ICU). This Danish-Dutch study tested a European adaptation of the “Family Satisfaction in the ICU” (euroFS-ICU). The aim of the study was to examine assessments of satisfaction with care in a large cohort of Danish and Dutch family members and to examine the measurement characteristics of the euroFS-ICU. Methods Data were from 11 Danish and 10 Dutch ICUs and included family members of patients admitted to the ICU for 48 hours or more. Surveys were mailed 3 weeks after patient discharge from the ICU. Selected patient characteristics were retrieved from hospital records. Results A total of 1077 family members of 920 ICU patients participated. The response rate among family members who were approached was 72%. “Excellent” or “Very good” ratings on all items ranged from 58% to 96%. Items with the highest ratings were concern toward patients, ICU atmosphere, opportunities to be present at the bedside, and ease of getting information. Items with room for improvement were management of patient agitation, emotional support of the family, consistency of information, and inclusion in and support during decision-making processes. Exploratory factor analysis suggested four underlying factors, but confirmatory factor analysis failed to yield a multi-factor model with between-country measurement invariance. A hypothesis that this failure was due to misspecification of causal indicators as reflective indicators was supported by analysis of a factor representing satisfaction with communication, measured with a combination of causal and reflective indicators. Conclusions Most family members were moderately or very satisfied with patient care, family care, information and decision-making, but areas with room for improvement were also identified. Psychometric assessments suggest that composite scores constructed from these items as representations of either overall satisfaction or satisfaction with specific sub-domains do not meet rigorous measurement standards. The euroFS-ICU and other similar instruments may benefit from adding reflective indicators. Electronic supplementary material The online version of this article (doi:10.1186/s13054-017-1826-7) contains supplementary material, which is available to authorized users.

Effective physician communication at the end-of-life is a cornerstone to providing patient-centered palliative care. Educational programs in physician communication often rely on self-assessments of physician knowledge and attitudes and seldom provide patients' reports. Thus, it is unclear whether physician self-assessments are associated with patient perspectives.To determine whether physician trainees' self-assessments of their communication skills in religious/spiritual discussions were associated with assessments obtained from patients under their care.Prospective, observational, survey-based study of internal medicine trainees' self-assessments matched with their patients' reports. Data were obtained from preintervention surveys prior to the trainees participating in a communication educational intervention.The study took place at two internal medicine training programs, one in the southeastern United States and one in the northwestern United States. Our subjects were 181 physician trainees in internal medicine and 541 patients with advanced medical illnesses under their care.The outcomes were patient reports of the occurrence of religious/spiritual communication and patient ratings of the quality of this communication. The primary predictor of interest was trainees' preintervention self-assessments of their competency in religious/spiritual communication.Using multiple variable and path analysis we found that trainees' self-assessments of their communication skills in religious/spiritual communication was significantly and positively associated with their patients' reports of the occurrence and ratings of religious/spiritual communication.Physician trainee self-assessments may be a valid surrogate for patient ratings of quality with respect to religious/spiritual communication. This specific domain of physician-patient communication should receive further investigation as our finding contrasts with reports of more general measures of physician-patient end-of-life communication.

Background: Communication with patients and families is an essential component of high-quality care in serious illness. Small-group skills training can result in new communication behaviors, but past studies have used facilitators with extensive experience, raising concerns this is not scalable. Objective: The objective was to investigate the effect of an experiential communication skills building workshop (Codetalk), led by newly trained facilitators, on internal medicine trainees' and nurse practitioner students' ability to communicate bad news and express empathy. Design: Trainees participated in Codetalk; skill improvement was evaluated through pre- and post- standardized patient (SP) encounters. Setting and subjects: The subjects were internal medicine residents and nurse practitioner students at two universities. Intervention and measurements: The study was carried out in anywhere from five to eight half-day sessions over a month. The first and last sessions included audiotaped trainee SP encounters coded for effective communication behaviors. The primary outcome was change in communication scores from pre-intervention to post-intervention. We also measured trainee characteristics to identify predictors of performance and change in performance over time. Results: We enrolled 145 trainees who completed pre- and post-intervention SP interviews—with participation rates of 52% for physicians and 14% for nurse practitioners. Trainees' scores improved in 8 of 11 coded behaviors (p

Some of the challenges in the delivery of high-quality end-of-life care in the ICU include the variability in the characteristics of patients with certain illnesses and the practice of critical care by different specialties.We examined whether ICU attending specialty was associated with quality of end-of-life care by using data from a clustered randomized trial of 14 hospitals. Patients died in the ICU or within 30 h of transfer and were categorized by specialty of the attending physician at time of death (medicine, surgery, neurology, or neurosurgery). Outcomes included family ratings of satisfaction, family and nurse ratings of quality of dying, and documentation of palliative care in medical records. Associations were tested using multipredictor regression models adjusted for hospital site and for patient, family, or nurse characteristics.Of 3,124 patients, the majority were cared for by an attending physician specializing in medicine (78%), with fewer from surgery (12%), neurology (3%), and neurosurgery (6%). Family satisfaction did not vary by attending specialty. Patients with neurology or neurosurgery attending physicians had higher family and nurse ratings of quality of dying than patients of attending physicians specializing in medicine (Plt; .05). Patients with surgery attending physicians had lower nurse ratings of quality of dying than patients with medicine attending physicians (Plt; .05). Chart documentation of indicators of palliative care differed by attending specialty.Patients cared for by neurology and neurosurgery attending physicians have higher family and nurse ratings of quality of dying than patients cared for by medicine attending physicians and have a different pattern of indicators of palliative care. Patients with surgery attending physicians had fewer documented indicators of palliative care. These findings may provide insights into potential ways to improve the quality of dying for all patients.ClinicalTrials.gov; No.: NCT00685893; URL: www.clinicaltrials.gov.

Little is known about psychiatric illness and utilization of end-of-life care.We hypothesized that preexisting psychiatric illness would increase hospital utilization at end of life among patients with chronic medical illness due to increased severity of illness and care fragmentation.We reviewed electronic health records to identify decedents with one or more of eight chronic medical conditions based on International Classification of Diseases-9 codes. We used International Classification of Diseases-9 codes and prescription information to identify preexisting psychiatric illness. Regression models compared hospital utilization among patients with and without psychiatric illness. Path analyses examined the effect of severity of illness and care fragmentation.Eleven percent of 16,214 patients with medical illness had preexisting psychiatric illness, which was associated with increased risk of death in nursing homes (P = 0.002) and decreased risk of death in hospitals (P 0.001). In the last 30 days of life, psychiatric illness was associated with reduced inpatient and intensive care unit utilization but increased emergency department utilization. Path analyses confirmed an association between psychiatric illness and increased hospital utilization mediated by severity of illness and care fragmentation, but a stronger direct effect of psychiatric illness decreasing hospitalizations.Our findings differ from the increased hospital utilization for patients with psychiatric illness in circumstances other than end-of-life care. Path analyses confirmed hypothesized associations between psychiatric illness and increased utilization mediated by severity of illness and care fragmentation but identified more powerful direct effects decreasing hospital use. Further investigation should examine whether this effect represents a disparity in access to preferred care.

Better clinician understanding of patients' end-of-life treatment preferences has the potential for reducing unwanted treatment, decreasing health care costs, and improving end-of-life care.To investigate patient preferences for life-sustaining therapies, clinicians' accuracy in understanding those preferences, and predictors of patient preference and clinician error.This was an observational study of 196 male veterans with chronic obstructive pulmonary disease who participated in a randomized trial. Measures included patients' preferences for mechanical ventilation (MV) and cardiopulmonary resuscitation (CPR) if needed in their current state of health, and outpatient clinicians' beliefs about those preferences.Analyses were based on 54% of participants in the trial who had complete patient/clinician data on treatment preferences. Patients were more receptive to CPR than MV (76% vs. 61%; P0.001). Preferences for both treatments were significantly associated with the importance patients assigned to avoiding life-sustaining therapies during the final week of life (MV: b=-0.11, P0.001; CPR: b=-0.09, P=0.001). When responses were dichotomized (would/would not want treatment), clinicians' perceptions matched patient preferences in 75% of CPR cases and 61% of MV cases. Clinician errors increased as patients preferred less aggressive treatment (MV: b=-0.28, P0.001; CPR: b=-0.32, P0.001).Clinicians erred more often about patients' wishes when patients did not want treatment than when they wanted it. Treatment decisions based on clinicians' perceptions could result in costly and unwanted treatments. End-of-life care could benefit from increased clinician-patient discussion about end-of-life care, particularly if discussions included patient education about risks of treatment and allowed clinicians to form and maintain accurate impressions of patients' preferences.

The intensive care unit (ICU), where death is common and even survivors of an ICU stay face the risk of long-term morbidity and re-admissions to the ICU, represents an important setting for improving communication about palliative and end-of-life care. Communication about the goals of care in this setting should be a high priority since studies suggest that the current quality of ICU communication is often poor and is associated with psychological distress among family members of critically ill patients. This paper describes the development and evaluation of an intervention designed to improve the quality of care in the ICU by improving communication among the ICU team and with family members of critically ill patients. We developed a multi-faceted, interprofessional intervention based on self-efficacy theory. The intervention involves a "communication facilitator" - a nurse or social worker - trained to facilitate communication among the interprofessional ICU team and with the critically ill patient's family. The facilitators are trained using three specific content areas: a) evidence-based approaches to improving clinician-family communication in the ICU, b) attachment theory allowing clinicians to adapt communication to meet individual family member's communication needs, and c) mediation to facilitate identification and resolution of conflict including clinician-family, clinician-clinician, and intra-family conflict. The outcomes assessed in this randomized trial focus on psychological distress among family members including anxiety, depression, and post-traumatic stress disorder at 3 and 6 months after the ICU stay. This manuscript also reports some of the lessons that we have learned early in this study.

Discussions about end-of-life care are often difficult for patients and clinicians, and inadequate communication poses a barrier to patients receiving the care they desire.To understand factors that facilitate end-of-life care discussions that guide interventions to improve care.We examined baseline data from an ongoing randomized trial to evaluate associations between patients' self-reported desire for, and occurrence of, discussions about end-of-life care and factors influencing these discussions. Factors included emotional symptoms and barriers and facilitators to discussions. The sample included patients with serious illness (n = 473) and their primary or specialty care clinicians (n = 128). Regression analyses were adjusted for confounders and clustered patients under clinicians.Patients who endorsed each of three barriers to discussions were less likely to have had a discussion with their clinician (P-values ranging from0.001 to 0.046). One facilitator (having had family/friends who died) was associated with past discussions (P = 0.037), and two facilitators were associated with wanting future discussion (P 0.001): 1) concerns about future quality of life, 2) worries about being a burden on friends/family. Depression and anxiety were not associated with past discussions. However, patients with more anxiety were more likely to want future discussions (P = 0.001), as were patients with more depressive symptoms who had had discussions in the past (P 0.001).The occurrence of, and desire for, patient-clinician communication about end-of-life care is associated with patient factors including communication barriers and facilitators and symptoms of depression and anxiety. Understanding these factors may facilitate design of effective communication interventions.

Communication among doctors, nurses, and families contributes to high-quality end-of-life care, but is difficult to improve.Our objective was to identify aspects of communication appropriate for interventions to improve quality of dying in the intensive care unit (ICU).This observational study used data from a cluster-randomized trial of an interdisciplinary intervention to improve end-of-life care at 15 Seattle/Tacoma area hospitals (2003-2008). Nurses completed surveys for patients dying in the ICU. We examined associations between nurse-assessed predictors (physician-nurse communication, physician-family communication) and nurse ratings of patients' quality of dying (nurse-QODD-1).Based on 1173 nurse surveys, four of six physician-nurse communication topics were positively associated with nurse-QODD-1: family questions, family dynamics, spiritual/religious issues, and cultural issues. Discussions between nurses and physicians about nurses' concerns for patients or families were negatively associated. All physician-family communication ratings, as assessed by nurses, were positively associated with nurse-QODD-1: answering family's questions, listening to family, asking about treatments patient would want, helping family decide patient's treatment wishes, and overall communication. Path analysis suggested overall physician-family communication and helping family incorporate patient's wishes were directly associated with nurse-QODD-1.Several topics of physician-nurse communication, as rated by nurses, were associated with higher nurse-rated quality of dying, whereas one topic, nurses' concerns for patient or family, was associated with poorer ratings. Higher nurse ratings of physician-family communication were uniformly associated with higher quality of dying, highlighting the importance of this communication. Physician support of family decision making was particularly important, suggesting a potential target for interventions to improve end-of-life care.

Communication about religious and spiritual issues is fundamental to palliative care, yet little empirical data exist to guide curricula in this area. The goal of this study was to develop an improved understanding of physicians' perspectives on their communication competence about religious and spiritual issues.We examined surveys of physician trainees (n=297) enrolled in an ongoing communication skills study at two medical centers in the northwestern and southeastern United States. Our primary outcome was self-assessed competence in discussing religion and spirituality. We used exploratory structural equation modeling (SEM) to develop measurement and full models for acquisition of self-assessed communication competencies.Our measurement SEM identified two latent constructs that we label Basic and Intermediate Competence, composed of five self-assessed communication skills. The Basic Competence construct included overall satisfaction with palliative care skills and with discussing do not resuscitate (DNR) status. The Intermediate Competence construct included responding to inappropriate treatment requests, maintaining hope, and addressing fears about the end-of-life. Our full SEM model found that Basic Competence predicted Intermediate Competence and that Intermediate Competence predicted competence in religious and spiritual discussions. Years of clinical training directly influenced Basic Competence. Increased end-of-life discussions positively influenced Basic Competence and had a complex association with Intermediate Competence. Southeastern trainees perceived more competence in religious and spiritual discussions than northwestern trainees.This study suggests that discussion of religious and spiritual issues is a communication skill that trainees consider more advanced than other commonly taught communication skills, such as discussing DNR orders.

Improving patient-clinician communication about end-of-life care is important in order to enhance quality of care for patients with chronic obstructive pulmonary disease (COPD). Our objective was to compare quality of patient-clinician communication about end-of-life care, and endorsement of barriers and facilitators to this communication in the Netherlands and the USA.The present study was an analysis of survey data from 122 Dutch and 391 US outpatients with COPD. We compared quality of patient-clinician communication about end-of-life care (Quality of Communication questionnaire) and barriers and facilitators to communication about end-of-life care (Barriers and Facilitators Questionnaire) between the Netherlands and the USA, controlling for patients' demographic and illness characteristics.Although Dutch patients in this study had worse lung function and disease-specific health status than US patients, Dutch patients reported lower quality of communication about end-of-life care (median score 0.0 (interquartile range 0.0-2.0) versus 1.4 (0.0-3.6); adjusted p Quality of communication about end-of-life care needs to improve in the Netherlands and the USA. Future studies to improve this communication should be designed to take into account international differences and patient-specific barriers and facilitators to communication about end-of-life care.

Because of high mortality, end-of-life care is an important component of intensive care.We evaluated the effectiveness of a quality-improvement intervention to improve intensive care unit (ICU) end-of-life care.We conducted a cluster-randomized trial randomizing 12 hospitals. The intervention targeted clinicians with five components: clinician education, local champions, academic detailing, clinician feedback of quality data, and system supports. Outcomes were assessed for patients dying in the ICU or within 30 hours of ICU discharge using surveys and medical record review. Families completed Quality of Dying and Death (QODD) and satisfaction surveys. Nurses completed the QODD. Data were collected during baseline and follow-up at each hospital (May 2004 to February 2008). We used robust regression models to test for intervention effects, controlling for site, patient, family, and nurse characteristics.All hospitals completed the trial with 2,318 eligible patients and target sample sizes obtained for family and nurse surveys. The primary outcome, family-QODD, showed no change with the intervention (P = 0.33). There was no change in family satisfaction (P = 0.66) or nurse-QODD (P = 0.81). There was a nonsignificant increase in ICU days before death after the intervention (hazard ratio = 0.9; P = 0.07). Among patients undergoing withdrawal of mechanical ventilation, there was no change in time from admission to withdrawal (hazard ratio = 1.0; P = 0.81).We found this intervention was associated with no improvement in quality of dying and no change in ICU length of stay before death or time from ICU admission to withdrawal of life-sustaining measures. Improving ICU end-of-life care will require interventions with more direct contact with patients and families. Clinical trial registered with www.clinicaltrials.gov (NCT00685893).

Context Better understanding of clinicians' skill communicating with their patients and of patients' trust in clinicians is necessary to develop culturally sensitive palliative care interventions. Race/ethnicity, socioeconomic status, and religiosity have been documented as factors influencing quality of communication and trust. Objectives The objective of this study was to explore associations of seriously ill patients' race/ethnicity, socioeconomic status, and religiosity with patients' ratings of the quality of clinicians' communication and trust in clinicians. Methods An observational analysis was performed using baseline data from a multicenter cluster-randomized trial of a communication intervention. We enrolled consecutive patients with chronic, life-limiting illnesses (n = 537) cared for by primary and specialty care clinicians (n = 128) between 2014 and 2016 in outpatient clinics in Seattle, Washington. We assessed patient demographics (age, gender, race/ethnicity, education, income, and self-rated health status), Duke University Religion Index, Quality of Communication Scale, and Wake Forest Physician Trust Scale. We used probit and linear regression and path analyses to examine associations. Results Patients providing higher ratings of clinician communication included those belonging to racial/ethnic minority groups (P = 0.001), those with lower income (P = 0.008), and those with high religiosity/spirituality (P = 0.004). Higher trust in clinicians was associated with minority status (P = 0.018), lower education (P = 0.019), and clinician skill in communication (P Conclusion Contrary to prior studies, racial/ethnic minorities and patients with lower income rated communication higher and reported higher trust in their clinicians than white and higher income patients. More research is needed to identify and understand factors associated with quality communication and trust between seriously ill patients and clinicians to guide development of patient-centered palliative care communication interventions.

Importance Clinician communication about goals of care is associated with improved patient outcomes and reduced intensity of end-of-life care, but it is unclear whether interventions can improve this communication. Objective To evaluate the efficacy of a patient-specific preconversation communication-priming intervention (Jumpstart-Tips) targeting both patients and clinicians and designed to increase goals-of-care conversations compared with usual care. Design, Setting, and Participants Multicenter cluster-randomized trial in outpatient clinics with physicians or nurse practitioners and patients with serious illness. The study was conducted between 2012 and 2016. Interventions Clinicians were randomized to the bilateral, preconversation, communication-priming intervention (n = 65) or usual care (n = 67), with 249 patients assigned to the intervention and 288 to usual care. Main Outcomes and Measures The primary outcome was patient-reported occurrence of a goals-of-care conversation during a target outpatient visit. Secondary outcomes included clinician documentation of a goals-of-care conversation in the medical record and patient-reported quality of communication (Quality of Communication questionnaire [QOC]; 4-indicator latent construct) at 2 weeks, as well as patient assessments of goal-concordant care at 3 months and patient-reported symptoms of depression (8-item Patient Health Questionnaire; PHQ-8) and anxiety (7-item Generalized Anxiety Disorder survey; GAD-7) at 3 and 6 months. Analyses were clustered by clinician and adjusted for confounders. Results We enrolled 132 of 485 potentially eligible clinicians (27% participation; 71 women [53.8%]; mean [SD] age, 47.1 [9.6] years) and 537 of 917 eligible patients (59% participation; 256 women [47.7%]; mean [SD] age, 73.4 [12.7] years). The intervention was associated with a significant increase in a goals-of-care discussion at the target visit (74% vs 31%; P P P = .01). Patient-assessed goal-concordant care did not increase significantly overall (70% vs 57%; P = .08) but did increase for patients with stable goals between 3-month follow-up and last prior assessment (73% vs 57%; P = .03). Symptoms of depression or anxiety were not different between groups at 3 or 6 months. Conclusions and Relevance This intervention increased the occurrence, documentation, and quality of goals-of-care communication during routine outpatient visits and increased goal-concordant care at 3 months among patients with stable goals, with no change in symptoms of anxiety or depression. Understanding the effect on subsequent health care delivery will require additional study. Trial Registration ClinicalTrials.gov identifier:NCT01933789

Context Although there is a documented need to improve end-of-life care, there are few validated and brief questionnaires that are available as outcome measures for use in improving that care. Objectives To examine the measurement characteristics of the Quality of End-of-Life Care (QEOLC) questionnaire. Methods In a multisite, cross-sectional study of a mailed questionnaire, patients with life-limiting illnesses, their families, and nurses completed the QEOLC questionnaire. Patients and nurses were identified by physicians, and families were identified by participating patients. Physicians included general internists, oncologists, cardiologists, and pulmonologists from the Southeast and Pacific Northwest of the United States. Results Eight hundred one patients, 310 of their families, and 885 nurses were identified by 85 physicians. Using structural equation modeling techniques corrected for clustering under physicians, we identified a patient-specific factor based on 11 items, a family-specific factor based on 22 items, a nurse-specific factor based on 11 items, and a common single-factor solution based on 10 items. Construct validity was supported by significant associations in the hypothesized direction between the identified QEOLC factors and each of the following: physician palliative care knowledge, patients' and families' ratings of overall quality of care, and patients' levels of symptom distress. Conclusion Although continued testing in heterogeneous samples is necessary, the current study supported the construct validity of the QEOLC questionnaire to assess physician skill at end-of-life care, thereby providing valid measures of quality end-of-life care. Furthermore, this approach is a model for development and validation of patient- and family-centered assessments of quality of care.

OBJECTIVES: To compare quality-of-life (QOL) ratings of terminally ill patients with and without cancer over time. DESIGN: Secondary analysis of prospective data from a randomized clinical trial. SETTING: Trial conducted with terminally ill patients in Seattle, Washington, testing the efficacy of massage and guided meditation in improving patients' QOL. PARTICIPANTS: One hundred sixty-seven trial participants, of whom 127 provided follow-up data and died before data analysis. MEASUREMENTS: At enrollment, participants reported demographic characteristics, symptom distress, QOL, and primary life-limiting diagnosis. At enrollment and at follow-up interviews after every two study-provided treatment sessions, participants rated their perceived quality of life on a scale from 0 (no quality of life) to 10 (perfect quality). At the end of the study, the investigators added measures of patient's survival status, number of days between study enrollment and death, and receipt of hospice services to the data set. RESULTS: Multilevel models showed significantly steeper QOL declines for patients with cancer than for those without after adjustment for time between study enrollment and death. Over a 4-month before-death period, the average patient without cancer was estimated to experience a QOL decline of approximately 0.6 on a scale from 0 to 10, compared with a 1.2-point decline for patients with cancer. CONCLUSION: Patients with cancer face more-precipitous end-of-life challenges to quality of life than do other terminally ill persons. Therefore, clinicians must address QOL issues—not just symptom burden and distress. By introducing and discussing expected QOL declines at the end of life, clinicians may help to prepare, support, and reassure patients and their families.

We used exploratory factor analysis within the confirmatory analysis framework, and data provided by family members and friends of 205 decedents in Missoula, Montana, to construct a model of latent-variable domains underlying the Quality of Dying and Death questionnaire (QODD). We then used data from 182 surrogate respondents, who were survivors of Seattle decedents, to verify the latent-variable structure. Results from the two samples suggested that survivors' retrospective ratings of 13 specific aspects of decedents' end-of-life experience served as indicators of four correlated, but distinct, latent-variable domains: Symptom Control, Preparation, Connectedness, and Transcendence. A model testing a unidimensional domain structure exhibited unsatisfactory fit to the data, implying that a single global quality measure of dying and death may provide insufficient evidence for guiding clinical practice, evaluating interventions to improve quality of care or assessing the status or trajectory of individual patients. In anticipation of possible future research tying the quality of dying and death to theoretical constructs, we linked the inferred domains to concepts from identity theory and existential psychology. We conclude that research based on the current version of the QODD might benefit from the use of composite measures representing the four identified domains, but that future expansion and modification of the questionnaire are in order.