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Context: Among people receiving maintenance dialysis, little is known about racial disparities in the occurrence of prognostic discussions, beliefs about future health, and completion of advance care planning (ACP) documents., Objectives: We examined whether Black patients receiving maintenance dialysis differ from White patients in prognostic discussions, beliefs about future health, and completion of ACP-related documents., Methods: We surveyed adult patients receiving maintenance dialysis from seven dialysis units in Cleveland, Ohio, and hospitalized patients at a tertiary care hospital in Cleveland. Of the 450 patients who were asked to participate in the study, 423 (94%) agreed. We restricted the current secondary analyses to include only Black (n=285) and White (n=114) patients. The survey assessed patients' knowledge of their kidney disease, attitudes toward chronic kidney disease (CKD) treatment, preferences for end-of-life (EoL) care, the patient-reported occurrence of prognostic discussions, experiences with kidney therapy decision making, sentiments of dialysis regret, beliefs about health over the next 12 months, and advance care planning. We used stepwise logistic regression to determine if race was associated with the occurrence of prognostic discussions, beliefs about future health, and completion of an ACP-related document, while controlling for potential confounders., Results: We found no significant difference in the frequency of prognostic discussions between Black (11.9%) versus White patients (7%) (P=0.15). However, Black patients (19%) had lower odds of believing that their health would worsen over the next 12 months (OR 0.22, CI 0.12, 0.44) and reporting completion of any ACP-related document (OR 0.5, CI 0.32, 0.81) compared to White patients CONCLUSION: Racial differences exist in beliefs about future health and completion of ACP-related documents. Systemic efforts to investigate differences in health beliefs and address racial disparities in the completion of ACP-related documents are needed., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: The quality of the relationship between oncologists and cancer patients has been associated with caregiver bereavement outcomes, but no studies have examined whether the perceived quality of the relationship between cancer caregivers and oncologists is associated with caregiver experiences of end-of-life care or psychological adjustment after the patient's death., Methods: We conducted secondary analyses of data collected in the Values and Options in Cancer Care (VOICE) study, a randomized controlled trial of an intervention that improved communication between oncologists and patients/caregivers (n = 204 dyads). At study entry, we assessed caregivers' experiences with the oncologist using four items from the Human Connection Scale. Following patients' deaths, we assessed bereaved caregivers' experiences with end-of-life cancer care (Quality of Death; Peace, Equanimity, and Acceptance in the Cancer Experience [PEACE]; Caregiver Evaluation of the Quality of End-of-Life Care [CEQUEL]; and modified Decision Regret scales) and psychological adjustment (Prolonged Grief Disorder-13 and Purpose in Life scales). We conducted multivariable regressions examining prospective associations between caregiver experiences with the oncologist at study entry and outcome variables., Results: Data were collected from 105 caregivers of patients who died during the course of the study. Positive experience with the oncologist was prospectively associated with better experiences of end-of-life care, as reflected in better quality of death (estimate = 0.33, SE = 0.14, p = 0.02), PEACE (estimate = 0.11, SE = 0.05, p = 0.04), and decisional regret (estimate = - 0.16, SE = 0.06, p = 0.01). Caregivers' experience with the oncologist was not significantly associated with indicators of psychological adjustment., Conclusion: Caregivers' early experiences with oncologists may affect their experiences of the patient's end-of-life care.

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 (OR adj : 0.40; 95% CI: 0.16-0.99) and later hospice enrollment (within 72 hours of death OR adj : 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 (OR adj : 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., (Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Deficits in end-of-life care in nursing homes (NHs) are reported, but the impact of palliative care teams (PCTeams) on resident outcomes remains largely untested., Objective: Test the impact of PCTeams on end-of-life outcomes., Research Design: Multicomponent strategy employing a randomized, 2-arm controlled trial with a difference-in-difference analysis, and a nonrandomized second control group to assess the intervention's placebo effect., Subjects: In all, 25 New York State NHs completed the trial (5830 decedent residents) and 609 NHs were in the nonrandomized group (119,486 decedents)., Measures: Four risk-adjusted outcome measures: place of death, number of hospitalizations, self-reported moderate-to-severe pain, and depressive symptoms. The Minimum Data Set, vital status files, staff surveys, and in-depth interviews were employed. For each outcome, a difference-in-difference model compared the pre-post intervention periods using logistic and Poisson regressions., Results: Overall, we found no statistically significant effect of the intervention. However, independent analysis of the interview data found that only 6 of the 14 treatment facilities had continuously working PCTeams throughout the study period. Decedents in homes with working teams had significant reductions in the odds of in-hospital death compared to the other treatment [odds ratio (OR), 0.400; P<0.001), control (OR, 0.482; P<0.05), and nonrandomized control NHs (0.581; P<0.01). Decedents in these NHs had reduced rates of depressive symptoms (OR, 0.191; P≤0.01), but not pain or hospitalizations., Conclusions: The intervention was not equally effective for all outcomes and facilities. As homes vary in their ability to adopt new care practices, and in their capacity to sustain them, reforms to create the environment in which effective palliative care can become broadly implemented are needed.

Background: The 2014 Institute of Medicine report recommended that healthcare providers caring for individuals with advanced illness have basic palliative care competencies in communication, inter-professional collaboration, and symptom management. Nursing homes, where one in three American decedents live and die, have fallen short of these competency goals. We implemented an intervention study to examine the efficacy of nursing home-based integrated palliative care teams in improving the quality of care processes and outcomes for residents at the end of life., Methods/design: This paper describes the design, rationale, and challenges of a two-arm randomized controlled trial of nursing home-based palliative care teams in 31 facilities. The impact of the intervention on residents' outcomes is measured with four risk-adjusted quality indicators: place of death (nursing home or hospital), number of hospitalizations, and self-reported pain and depression in the last 90-days of life. The effect of the intervention is also evaluated with regard to staff satisfaction and impact on care processes (e.g. palliative care competency, communication, coordination). Both secondary (e.g. the Minimum Data Set) and primary (e.g. staff surveys) data are employed to examine the effect of the intervention., Discussion: Several challenges in conducting a complex, nursing home-based intervention have been identified. While sustainability of the intervention without research funding is not clear, we surmise that without changes to the payment model that put palliative care services in this care setting on par with the more "skilled" care, it will not be reasonable to expect any widespread efforts to implement facility-based palliative care services., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Context: Lack of nursing home (NH)-specific palliative care practice guidelines has been identified as a barrier to improving palliative and end-of-life (EOL) quality of care., Objectives: The objectives of this study were to (1) assess which of the guidelines developed by the National Consensus Project, and the corresponding preferred care practices endorsed by the National Quality Forum, are important and feasible to implement in NHs; and (2) identify the operational standards for palliative care teams in NHs., Methods: Two-round mail Delphi study. Based on the existing literature, a set of 7 domains with associated 22 palliative practice guidelines was drafted. We invited 48 NH leaders, including clinicians, to review the importance (10-point Likert scale) and the feasibility (5-point Likert scale) of these guidelines. Participants were also asked about palliative care team composition rounding frequency., Results: The response rate to both rounds was 85%. With regard to importance, the mean rating for all guidelines was 8 or higher (ie, highly important), but there was variability in agreement with regard to 5 of the guidelines. The same 5 guidelines were also considered more difficult to implement (eg, costly, unrealistic). Overall, 17 palliative care guidelines were identified for use by NH palliative care teams. Five disciplines (social work, certified nurse assistant, nurse, physician, and nurse practitioner or physician assistant) were identified as comprising a core team and 3 were proposed as extended or ad hoc members., Conclusion: The palliative care guidelines and team standards identified in this study may be helpful in providing practical direction to NH administrators and staff looking to improve palliative care practice for their residents., (Copyright © 2015 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: To explore patients' perspectives across two cultures (Australia and USA) regarding communication about prognosis and end-of-life care issues and to consider the ways in which these discussions can be optimised., Methods: Fifteen Australian and 11 US patients completed individual semi-structured qualitative interviews. A further 8 US patients participated in a focus group. Interviews and focus group recordings were transcribed verbatim and interpreted using thematic text analysis with an inductive, data-driven approach., Results: Global themes identified included readiness for and outcomes of discussions of prognosis and end-of-life issues. Contributing to readiness were sub themes including patients' adjustment to and acceptance of their condition (together with seven factors promoting this), doctor and patient communication skills, mutual understandings and therapeutic relationship elements. Outcomes included sub themes of achievement of control and ability to move on. A model of the relationships between these factors, emergent cross cultural differences, and how factors may help to optimise these discussions are presented., Conclusion: Identified optimising factors illustrate Australian and US patients' perspectives regarding how prognosis and end-of-life issues can be discussed with minimised negative impact., Practice Implications: Recognition of factors promoting adjustment, acceptance and readiness and use of the communication skills and therapeutic relationship elements identified may assist in optimising discussions and help patients plan care, achieve more control of their situation and enjoy an optimal quality-of-life., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)

Purpose: The objectives of this study were to develop measures of end-of-life (EOL) care processes in nursing homes and to validate the instrument for measuring them., Design and Methods: A survey of directors of nursing was conducted in 608 eligible nursing homes in New York State. Responses were obtained from 313 (51.5% response rate) facilities. Secondary data on structural characteristics of the nursing homes were obtained from the Online Survey Certification and Reporting System. Exploratory factor analyses and internal consistency reliability analyses were performed. Multivariate regression models with fixed and random effects were estimated., Results: Four EOL process domains were identified-assessment, delivery, communication and coordination of care among providers, and communication with residents and families. The scales measuring these EOL process domains demonstrated acceptable to high internal consistency reliability and face, content, and construct validity. Facilities with more EOL quality assurance or monitoring mechanisms in place and greater emphasis on EOL staff education had better scores on EOL care processes of assessment, communication and coordination among providers, and care delivery. Facilities with better registered nurse and certified nurse aide staffing ratios and those with religious affiliation also scored higher on selected care process measures., Implications: This study offers a new validated tool for measuring EOL care processes in nursing homes. Our findings suggest wide variations in care processes across facilities, which in part may stem from lack of gold standards for EOL practice in nursing homes.