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Abstract: Context: Palliative care (PC) consultations result in improved patient understanding of prognosis and better quality of life, yet the content and processes of prognosis communication during PC consultations remain unknown. Objectives: To describe prognosis communication during PC consultation with seriously ill hospitalized patients. Methods: We audio recorded 71 sequential inpatient PC consultations (initial visit) with seriously ill patients and their families who were referred for “goals of care” clarification or help with “end-of-life decision making.” Conversations were coded using reliable methods and we then linked conversation codes to clinical record and clinician interview data. Results: Ninety-three percent of consultations contained prognosis communication. Participants communicated prognoses regarding quality of life more frequently than survival; focused prognosis estimates on the unique patient more frequently than on a general population; and framed prognosis using pessimistic cues more frequently than optimistic ones. Prognoses were more commonly spoken by PC clinicians than by patients/families. The following two factors demonstrated an association with the rate of prognostic communication and with the pessimistic framing of that information: whether the patient, family, or both participated in the conversation, and shorter expected survival (as estimated by the attending physician). Conclusion: Prognoses are routinely communicated in PC consultations with hospitalized patients and their families. The rate and characteristics of prognosis communication differ based on the length of time the patient is expected to live. [Copyright &y& Elsevier]

Abstract: Context: Despite rapid proliferation of hospital-based palliative care consultation services (PCCSs) across the country, there is little description of the dynamic processes that the PCCS and the non-PCCS hospital cultures experience during the institutionalization of a successful PCCS. Objectives: To describe the institutionalization of a new PCCS in a quaternary care academic medical center (AMC) and highlight two themes, cost and quality, that pervaded the dynamics involved from the inception to the successful integration of the service. Methods: Ethnography using longitudinal field observations, in-depth interviews, and the collection of artifacts. The study was performed in a 750-bed quaternary care AMC in the northeastern region of the U.S. Participants were a purposefully selected sample (n =79) of 1) senior-level institutional administrators, including clinical leaders in nursing, medicine, and social work, 2) clinicians who used the PCCS, either commonly or rarely, and 3) members of the PCCS core and extended teams. Results: Key infrastructure components that contributed to the successful integration of the PCCS included top level interprofessional administrative buy-in to the quality and cost arguments for PCCS, PCCS leadership selection, robust data collection strategies emphasizing quality outcome data, the adoption of the “physician referral only” rule, and incremental and sustainable growth. The PCCS service grew an average of 23% per year from 2003 to 2009. Conclusion: An in-depth understanding of the dynamic interaction of the infrastructures and processes of a successful institutionalization, in their unique complexity, may help other PCCSs identify and negotiate attributes of their own circumstances that will increase their chances for successful and sustainable implementation. [Copyright &y& Elsevier]

Context: Systematic collection of patient-reported outcomes (PROs) reduces symptom burden and improves quality of life. The ability of older adults to complete PROs, however, has not been thoroughly studied.Objectives: To determine whether older adults with advanced cancer received assistance completing PROs, the nature of the assistance, the factors associated with receiving assistance, and how the prevalence of assistance changed over time.Methods: Data were obtained from a multisite cluster randomized controlled study of geriatric assessment (Clinicaltrials.gov: NCT02107443). Adults ≥70 years with advanced cancer completed multiple PROs at 4 time points (enrollment, 6 weeks, 3 months, 6 months). Factors associated with receipt of assistance were assessed with bivariate and multivariate analyses.Results: The study included 541 adults (range 70-96 years, 49% female, mixed incurable cancer diagnoses). Twenty-eight percent (153/541) received assistance completing PROs. Of these, 42% received assistance from caregivers, 37% from research staff, and 15% from both. Factors associated with receiving assistance included older age [Adjusted Odds Ratio (AOR) 3.71, 95% Confidence Interval (CI) 1.03-13.38], lower education level (3.92, 2.11-7.29), impaired cognition (1.90, 1.23-2.93), impaired functional status (2.16, 1.33-3.52), and impaired hearing (1.38, 1.05-1.80). Eighty percent of individuals who received assistance were identified at study initiation. Receiving assistance decreased over time from 28% to 18%, partially due to drop-outs.Conclusion: Over a quarter of older adults with advanced cancer in this study received assistance completing PROs. Completing PROs is a key aspect of many clinical programs and cancer trials; assistance in completing PROs should be offered and provided. [ABSTRACT FROM AUTHOR]

Context: Clinicians frequently overestimate survival time in serious illness.Objective: The objective of this study was to understand the frequency of overestimation in palliative care (PC) and the relation with end-of-life (EOL) treatment.Methods: This is a multisite cohort study of 230 hospitalized patients with advanced cancer who consulted with PC between 2013 and 2016. We asked the consulting PC clinician to make their "best guess" about the patients' "most likely survival time, assuming that their illnesses are allowed to take their natural course" (<24 hours; 24 hours to less than two weeks; two weeks to less than three months; three months to less than six months; six months or longer). We followed patients for up to six month for mortality and EOL treatment utilization. Patients completed a brief interviewer-facilitated questionnaire at study enrollment.Results: Median survival was 37 days (interquartile range: 12 days, 97 days) and 186/230 (81%) died during the follow-up period. Forty-one percent of clinicians' predictions were accurate. Among inaccurate prognoses, 85% were overestimates. Among those who died, overestimates were substantially associated with less hospice use (ORadj: 0.40; 95% CI: 0.16-0.99) and later hospice enrollment (within 72 hours of death ORadj: 0.33; 95% CI: 0.15-0.74). PC clinicians were substantially more likely to overestimate survival for patients who identified as Black or Latino compared to others (ORadj: 3.89; 95% CI: 1.64-9.22). EOL treatment preferences did not explain either of these findings.Conclusion: Overestimation is common in PC, associated with lower hospice use and a potentially mutable source of racial/ethnic disparity in EOL care. [ABSTRACT FROM AUTHOR]

Context: Men and those with low educational attainment are less likely to receive palliative care. Understanding these disparities is a high priority issue.Objectives: In this study of advanced cancer patients, we hypothesized that men and those with lower levels of educational attainment would have less favorable attitudes toward palliative care.Methods: We performed a cross-sectional analysis of data collected from 383 patients at study entry in the Values and Options in Cancer Care (VOICE) clinical trial. Patients were asked about their preferences for palliative care if their oncologist informed them that further treatment would not be helpful. Palliative care was defined as "comfort care" that focuses on "quality of life, but not a cure." Response options were definitely no, possibly no, unsure, possibly yes, and definitely yes. Those preferring palliative care (definitely or possibly yes) were compared to all others. Predictors were patient gender and education level. Covariates included age, race, disease aggressiveness, and financial strain.Results: Women were more likely [odds ratio (95% CI)] than men to prefer palliative care [3.07 (1.80-5.23)]. The effect of education on preferences for palliative care was not statistically significant [0.85 (0.48-1.48)].Conclusion: Significant gender differences in patients' preferences for palliative care could partially account for gender disparities in end-of-life care. Interventions to promote palliative care among men could reduce these disparities. [ABSTRACT FROM AUTHOR]

Context: Maximizing value in palliative care requires continued development and standardization of communication quality indicators.Objectives: To describe the basic epidemiology of a newly adopted patient-centered communication quality indicator for hospitalized palliative care patients with advanced cancer.Methods: Cross-sectional analysis of 207 advanced cancer patients who received palliative care consultation at two medical centers in the U.S. Participants completed the Heard & Understood quality indicator immediately before and the day after the initial palliative care consultation: Over the past two days ["24 hours" for the post-consultation version], how much have you felt heard and understood by the doctors, nurses, and hospital staff?-completely/quite a bit/moderately/slightly/not at all. We categorized completely as indicating ideal quality.Results: Approximately one-third indicated ideal Heard & Understood quality before palliative care consultation. Age, financial security, emotional distress, preferences for comfort-longevity tradeoffs at the end of life, and prognosis expectations were associated with preconsultation quality. Among those with less-than-ideal quality at baseline, 56% rated feeling more Heard & Understood the day after palliative care consultation. The greatest prepost improvement was among people who had unformed end-of-life treatment preferences or who reported having no idea about their prognosis at baseline.Conclusion: Most patients felt incompletely heard and understood at the time of referral to palliative care consultation, and more than half of the patients improved after consultation. Feeling heard and understood is an important quality indicator sensitive to interventions to improve care and key variations in the patient experience. [ABSTRACT FROM AUTHOR]

Context: As endorsed by the palliative care "Measuring What Matters" initiative, capturing patients' direct assessment of their care is essential for ongoing quality reporting and improvement. Fostering an environment where seriously ill patients feel heard and understood is of crucial importance to modern health care.Objectives: To describe the development and performance of a self-report field measure for seriously ill patients to report how well they feel heard and understood in the hospital environment.Methods: As part of a larger ongoing cohort study of inpatient palliative care, we developed and administered the following point-of-care item: "Over the past two days, how much have you felt heard and understood by the doctors, nurses and hospital staff?" (completely, quite a bit, moderately, slightly, not at all). Participants completed the measure before and the day after palliative care consultation. For the postconsultation version, we changed the time frame from "past two days" to "today."Results: One hundred sixty patients with advanced cancer completed the preconsultation assessment, and 87% of them completed the postconsultation version. Responses encompassed full use of the ordinal scale, did not exhibit ceiling or floor effects, and showed improvement from preassessment to postassessment. The item was quick to administer and easy for patients to complete.Conclusion: The "Heard & Understood" item is a promising self-report quality measure for the inpatient palliative care setting. [ABSTRACT FROM AUTHOR]

Quality measurement is a critical tool for improving palliative care and hospice, but significant research is needed to improve the application of quality indicators. We defined methodological priorities for advancing the science of quality measurement in this field based on discussions of the Technical Advisory Panel of the Measuring What Matters consensus project of the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association and a subsequent strategy meeting to better clarify research challenges, priorities, and quality measurement implementation strategies. In this article, we describe three key priorities: 1) defining the denominator(s) (or the population of interest) for palliative care quality indicators, 2) developing methods to measure quality from different data sources, and 3) conducting research to advance the development of patient/family-reported indicators. We then apply these concepts to the key quality domain of advance care planning and address relevance to implementation of indicators in improving care. Developing the science of quality measurement in these key areas of palliative care and hospice will facilitate improved quality measurement across all populations with serious illness and care for patients and families. [ABSTRACT FROM AUTHOR]

Context: Palliative care (PC) promotes patient-centered outcomes, but the mechanisms underlying these effects remain poorly understood. Identifying, clarifying, and prioritizing patients' goals are conceptually fundamental to the process of patient-centeredness and are the main reasons for PC referral. However, very little is empirically known about the content or process of goal expression in the natural setting of PC.Objectives: To describe the frequency, types, and determinants of goal expression in PC consultations.Methods: This was a cross-sectional direct observational study of 72 audiorecorded PC consultations with hospitalized patients (and families) referred for PC goals of care clarification or end-of-life decision making. We coded digital audio files using reliable methods and linked conversation codes to clinical record and brief clinician interview data.Results: Goal expressions occurred frequently in PC consultations and addressed both length-of-life and quality-of-life domains. The presence of existential suffering in the conversation was associated with substantially more expressions and types of goals.Conclusion: Goal communication is common in PC decision-making settings and strongly influenced by existential suffering. [ABSTRACT FROM AUTHOR]

Context Measuring quality of hospice and palliative care is critical for evaluating and improving care, but no standard U.S. quality indicator set exists. Objectives The Measuring What Matters (MWM) project aimed to recommend a concise portfolio of valid, clinically relevant, cross-cutting indicators for internal measurement of hospice and palliative care. Methods The MWM process was a sequential consensus project of the American Academy of Hospice and Palliative Medicine (AAHPM) and Hospice and Palliative Nurses Association (HPNA). We identified candidate indicators mapped to National Consensus Project (NCP) Palliative Care Guidelines domains. We narrowed the list through a modified Delphi rating process by a Technical Advisory Panel and Clinical User Panel and ratings from AAHPM and HPNA membership and key organizations. Results We narrowed the initial 75 indicators to a final list of 10. These include one in the NCP domain Structure and Process (Comprehensive Assessment), three in Physical Aspects (Screening for Physical Symptoms, Pain Treatment, and Dyspnea Screening and Management), one in Psychological and Psychiatric Aspects (Discussion of Emotional or Psychological Needs), one in Spiritual and Existential Aspects (Discussion of Spiritual/Religious Concerns), and three in Ethical and Legal Aspects (Documentation of Surrogate, Treatment Preferences, and Care Consistency with Documented Care Preferences). The list also recommends a global indicator of patient/family perceptions of care, but does not endorse a specific survey instrument. Conclusion This consensus set of hospice and palliative care quality indicators is a foundation for standard, valid internal quality measurement for U.S. settings. Further development will assemble implementation tools for quality measurement and benchmarking. [ABSTRACT FROM AUTHOR]

Context: There has been surprisingly little attention to conceptual and methodological issues that influence the measurement of discretionary utilization at the end of life (DIAL), an indicator of quality care.Objective: The objectives of this study were to examine how DIALs have been operationally defined and identify areas where evidence is biased or inadequate to inform practice.Methods: We conducted a scoping review of the English language literature published from 1/1/04 to 6/30/17. Articles were eligible if they reported data on ≥2 DIALs within 100 days of the deaths of adults aged ≥18 years. We explored the influence of research design on how researchers measure DIALs and whether they examine demographic correlates of DIALs. Other potential biases and influences were explored.Results: We extracted data from 254 articles published in 79 journals covering research conducted in 29 countries, mostly focused on cancer care (69.1%). More than 100 DIALs have been examined. Relatively crude, simple variables (e.g., intensive care unit admissions [56.9% of studies], chemotherapy [50.8%], palliative care [40.0%]) have been studied more frequently than complex variables (e.g., burdensome transitions; 7.3%). We found considerable variation in the assessment of DIALs, illustrating the role of research design, professional norms and disciplinary habit. Variables are typically chosen with little input from the public (including patients or caregivers) and clinicians. Fewer than half of the studies examined age (44.6%), gender (37.3%), race (26.5%), or socioeconomic (18.5%) correlates of DIALs.Conclusion: Unwarranted variation in DIAL assessments raises difficult questions concerning how DIALs are defined, by whom, and why. We recommend several strategies for improving DIAL assessments. Improved metrics could be used by the public, patients, caregivers, clinicians, researchers, hospitals, health systems, payers, governments, and others to evaluate and improve end-of-life care. [ABSTRACT FROM AUTHOR]

Context: Although patient and physician characteristics are thought to be predictive of discretionary interventions at the end of life (EoL), few studies have data on both parties.Objective: To test the hypothesis that patient preferences and physician attitudes are both independently associated with discretionary interventions at the EoL.Methods: We report secondary analyses of data collected prospectively from physicians (n = 38) and patients with advanced cancer (n = 265) in the Values and Options in Cancer Care study. Predictor variables were patient attitudes toward EoL care and physician-reported comfort with medical paternalism, assessed indirectly using a modified version of the Control Preference Scale. We explored whether the magnitude of the physician variable was influenced by the inclusion of particular patient treatment-preference variables (i.e., effect modification). Outcomes were a chemotherapy use score (≤14 days before death [scored 2], 15-31 days before death [scored 1], and >31 days [scored 0]) and an emergency department visit/inpatient admission score (two or more admissions in the last 31 days [scored 2], one admission [1], and 0 admissions [0]) in the last month of life.Results: Chemotherapy scores were nearly 0.25 points higher if patients expressed a preference for experimental treatments with unknown benefit at study entry (0.238 points, 95% CI = 0.047-0.429) or reported an unfavorable attitude toward palliative care (0.247 points, 95% CI = 0.047-0.450). A two-standard deviation difference in physician comfort with medical paternalism corresponded to standardized effects of 0.35 (95% CI = 0.03-0.66) for chemotherapy and 0.33 (95% CI = 0.04-0.61) for emergency department visits/inpatient admissions. There was no evidence of effect modification.Conclusion: Patient treatment preferences and physician attitudes are independently associated with higher levels of treatment intensity before death. Greater research, clinical, and policy attention to patient treatment preferences and physician comfort with medical paternalism might lead to improvements in care of patients with advanced disease. [ABSTRACT FROM AUTHOR]