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<0.001 for all comparisons). Among patients prioritizing relief of discomfort, preference for CPR in current health was less likely among older patients (OR 0.958 per year; 95%CI 0.935,0.981) and more likely with better self-perceived health (OR 1.402 per level of health; 95%CI 1.090,1.804).
Conclusion: Clinicians face challenges as they clarify patient values and align treatments with values. Patients' values predicted CPR preferences, but a substantial proportion of patients expressed CPR preferences that appeared potentially inconsistent with their primary value. Clinicians should question assumptions about relationships between values and CPR preferences. Further research is needed to identify ways to use values to guide treatment decisions.
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 < 0.001).
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.
BACKGROUND: Most people prefer to die at home, yet most do not. Understanding factors associated with terminal hospitalization may inform interventions to improve care.
OBJECTIVE: 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.
DESIGN: Retrospective cohort using death certificates and electronic health records. Settings/Subjects: Decedents with one of nine chronic illnesses.
RESULTS: 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).
CONCLUSIONS: 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.
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 < 0.001) and intensive care unit (ICU) care (OR, 3.50; 95% CI: 3.05-4.03; p < 0.001). Patients with HM were more likely to die in a hospital (OR, 2.75; 95% CI: 2.49-3.04; p < 0.001) than those with non-HM. Furthermore, during the last 30 days of life, among patients with HM, racial/ethnic minority patients were more likely to have more than one emergency room visit (OR, 6.81; 95% CI: 1.34-33.91; p = 0.02), 14+ days of inpatient care (OR, 1.60; 95% CI: 1.08-2.35; p = 0.02), longer stays in the ICU (OR, 1.26; 95% CI: 1.04-1.52; p = 0.02), and lower rates of advance directive documentation (OR, 0.60; 95% CI: 0.44-0.82; p < 0.01) than NHWs.
CONCLUSION: Our findings suggest that racial/ethnic minority patients with HM have higher utilization of care at the end-of-life and lower rates of advance directives compared with NHW patients.
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.
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, 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 < .001) and increased medical record documentation (62% vs 17%; P < .001), as well as increased patient-rated quality of communication (4.6 vs 2.1; 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.
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: 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 (<65 vs. =65 years) who received care in a large healthcare system.
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.
BACKGROUND: 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.
METHODS: 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.
RESULTS: 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.
DISCUSSION: 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.