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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.)

Objectives: We examined state variations in assisted living (AL) regulatory policies for admission/retention, staffing/training, medication management, and dementia care. Factors associated with domain-specific and overall regulatory stringency were identified., Design: This observational study used the following data sources: 2019 review of state AL regulations; 2019 national inventory of AL communities; 2014 Government Accountability Office survey of Medicaid agencies; 2016 Genworth Cost of Care Survey; and the 2018 Nursing Home Compare., Setting and Participants: Final analyses included 46 states (excluding Alaska, Kentucky, Louisiana, and West Virginia) and the District of Columbia., Methods: For each regulatory domain of interest (dependent variables), we generated policy scores by conducting content analysis of state regulatory databases. States were assigned points for presence of each policy (eg, staff training). The number of points assigned to each policy was divided by the total possible number of policy-related points, producing state stringency scores (between 0% and 100%) for each policy domain. Independent variables included market-level characteristics (eg, AL monthly cost), state generosity (eg, proportion of Medicaid aged using AL services), quality of care (eg, percent of nursing homes with few deficiencies), and others. Descriptive analyses and multivariable logistic regression models with stepwise selection were used., Results: We found significant variations in all policy domains across states. No single policy appeared to clearly dominate a state's rank. AL bed supply, monthly AL cost, proportion of Medicaid beneficiaries receiving AL services, and other variables were significantly associated with regulatory stringency of the domains examined., Conclusions and Implications: There were substantial variations in regulatory stringency across states. Several market and state generosity measures were identified as potential determinants of stringency, but the direction of these associations appeared to depend on what was being regulated. Future studies should examine how regulatory stringency affects access to and care quality in ALs., (Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Discordance in prognostic understanding between caregivers of adults with advanced cancer and the oncologist may shape caregivers' views of the oncologist and bereavement outcomes., Objectives: We examined prospective associations of caregiver-oncologist discordance with caregiver-oncologist therapeutic alliance and caregiver anxiety after patient death., Methods: We conducted a secondary analysis of data collected in a cluster randomized controlled trial from August 2012 to June 2014 in Western New York and California. At enrollment, caregivers and oncologists used a seven-point scale to rate their beliefs about the patient's curability and living two years or more: 100%, about 90%, about 75%, about 50 of 50, about 25%, about 10%, and 0%. Discordance was defined as a difference of two points or more. Outcomes at seven months after patient death included caregiver-oncologist therapeutic alliance (The Human Connection scale, modified into five items) and caregiver anxiety (Generalized Anxiety Disorder-7). We conducted multivariable linear regression models to assess the independent associations of discordance with alliance and anxiety., Results: We included 97 caregivers (mean age 63) and 38 oncologists; 41% of caregiver-oncologist dyads had discordant beliefs about the patient's curability, and 63% of caregiver-oncologist dyads had discordant beliefs about living two years or more. On multivariate analysis, discordance in beliefs about curability was associated with lower anxiety (β = -2.20; SE 0.77; P = 0.005). Discordance in beliefs about length of life was associated with a weaker alliance (β = -5.87; SE = 2.56; P = 0.02)., Conclusion: A better understanding of how caregivers understand and come to terms with poor prognoses will guide interventions to improve cancer care delivery and outcomes of cancer treatment., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: We examined whether conversations involving Black or Latino patients with advanced cancer differ in the presence or characteristics of prognosis communication., Methods: We audio-recorded initial consultations between 54 palliative care clinicians and 231 hospitalized people with advanced cancer. We coded for the presence and characteristics of prognosis communication. We examined whether the presence or characteristics of prognosis communication differed by patients' self-reported race/ethnicity., Results: In 231 consultations, 75.7% contained prognosis communication. Prognosis communication was less than half as likely to occur during conversations with Black or Latino patients (N = 48) compared to others. Among consultations in which prognosis was addressed, those involving Black or Latino patients were more than 8 times less likely to contain optimistically cued prognoses compared to others., Conclusion: Prognosis communication occurred less frequently for Black and Latino patients and included fewer optimistic cues than conversations with other patients. More work is needed to better understand these observed patterns of prognosis communication that vary by race and ethnicity., Practice Implications: Growing evidence supports prognosis communication being important for end-of-life decision-making and disproportionately rare among non-White populations. Therefore, our findings identify a potentially salient target for clinical interventions that are focused on ameliorating disparities in end-of-life care., (Copyright © 2019 Elsevier B.V. All rights reserved.)

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.)

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., (Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

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: 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., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

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., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by 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.)

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 © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Context: To provide effective palliative care (PC) to the geriatric population, an understanding of the reasons for consultation, main diagnoses related to referral, and symptom severity in chronic disease states is essential., Objectives: We compared the baseline characteristics, referral patterns, and symptom severity among older and younger patients referred for inpatient PC consultation., Methods: We conducted a retrospective review of 2382 inpatient PC consultations. We excluded "reconsultations" and patients under the age of 18. Patient characteristics (reason for consultation and diagnosis) and symptom severity were compared across three age groups: Younger, <65 years of age; Older, 65-84 years of age; and Oldest, 85 years of age and older. Multivariable logistic regression adjusted for the effects of gender, ethnicity, and diagnostic subset was performed., Results: Most patients referred for inpatient PC consultation were older than the age of 65. Oldest patients were consulted on earlier and more often for "end-of-life care." Oldest adults were less likely to report pain, anxiety, and nausea (adjusted odds ratios [AOR] of 0.25, 0.39, and 0.19, respectively) and more likely to report anorexia than Younger adults (AOR=1.66). There was no clear difference between age groups in reporting of dyspnea and depression., Conclusion: Older adults in need of PC appear to have symptom burdens and consultation referral patterns that are different from those of younger patients. Further research is needed to determine whether these symptom patterns are caused by psychosocial factors, whether these reflect true differences among age groups, and whether symptom measurement instruments should be tailored to patient age., (Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)