"But I Have a Pacer There Is No Point in Engaging in Hypothetical Scenarios": A Non-Imminently Dying Patient's Request for Pacemaker Deactivation.

In this case report, we describe a woman with advancing dementia who still retained decisional capacity and was able to clearly articulate her request for deactivation of her implanted cardiac pacemaker-a scenario that would result in her death. In this case, the patient had the autonomy to make her decision, but clinicians at an outside hospital refused to deactivate her pacemaker even though they were in unanimous agreement that the patient had capacity to make this decision, citing personal discomfort and a belief that her decision seemed out of proportion to her suffering. We evaluated her at our hospital, found her to have decision-making capacity, and deactivated her pacer resulting in her death about 9 days later. While some clinicians may be comfortable discussing patient preferences for device deactivation in patients who are imminently dying, we can find no reports in the literature of requests for device deactivation from patients with terminal diagnoses who are not imminently dying.

Effects of Primary Care-Led, Integrated Palliative Care for Medicare Patients in a Value-Based Model.

CONTEXT: Faced with a projected shortage of specialized palliative care physicians, scalable palliative solutions are required to better meet the aging population's needs. OBJECTIVES: To determine whether a multi-site, primary care-led, integrated palliative care model improves clinical, utilization, and economic outcomes. METHODS: Propensity score-matched comparison group formed from participants who were Medicare beneficiaries, died January 1, 2021-January 31, 2023, were patients of eight primary care practices that partner with agilon health, and enrolled in palliative care for at least seven days. Each practice operates in a value-based model, where primary care providers (PCPs) take on full-risk for the cost and quality of patient outcomes. Each program includes symptom management, defining goals of care/advance directives, PCP care coordination, and assistance with care transitions if patients enroll in hospice. RESULTS: Final sample included 1778 decedents, with 889 in both enrolled and matched cohorts, average age 83. Palliative care is associated with improved patient outcomes from palliative care enrollment until death, including 5.4 more days at home (p < 0.001), 0.4 fewer hospitalizations (p < 0.001), 17% fewer deaths in a hospital (p < 0.001), and $10,393 lower overall healthcare costs (p < 0.001). CONCLUSION: A primary care-led, integrated approach of delivering palliative care within a full-risk model can be an effective care delivery mechanism to meet the healthcare needs of an aging population by impacting patient outcomes and reducing avoidable utilization and cost at the end of life. These findings demonstrate that PCPs in a scaled, full-risk model can simultaneously improve care for patients while reducing costs to the healthcare system.

Clinician Perspectives on Palliative Care for People with Hepatocellular Carcinoma: Facilitators of and Barriers to Referral.

(1) Background: Little is known about facilitators of and barriers to palliative care referral for people with hepatocellular carcinoma (HCC). The objective of this study is to identify facilitators and barriers of palliative care referral described by HCC-treating clinicians. (2) Methods: Semi-structured interviews (n = 16) were conducted with HCC-treating clinicians at two centers, focusing on referral patterns, palliative care needs, and disease course. A code book was created, axial coding was used to code all interviews, and selective coding was used to identify facilitators and barriers of palliative care referral. (3) Results: Facilitators included helpfulness at times of transition; help with management of certain symptoms; provision of psychosocial support; and positive experiences with referral. Barriers included feasibility concerns; lack of information about palliative care and who is appropriate; lack of symptoms requiring outside referral; and concerns that palliative care conveys loss of hope. (4) Conclusions: Participants noted the helpfulness of palliative care at specific points in the disease trajectory and cited barriers related to feasibility, lack of need, lack of awareness, and loss of hope. The results show actionable issues that can be addressed in future research to leverage the benefits of and overcome the barriers to palliative care for people with HCC.

Palliative care in heart failure guidelines: A comparison of the 2021 ESC and the 2022 AHA/ACC/HFSA guidelines on heart failure.

The role of palliative care for patients with heart failure (HF) is discussed in both most recent HF guidelines, the 2021 ESC guideline and the 2022 AHA/ACC/HFSA guideline. This review compares the definitions, concepts and specific recommendations regarding palliative care for patients with HF in these two guidelines. Both HF guidelines define palliative care as a multidisciplinary approach aimed at alleviating physical, psychological and spiritual distress of patients and caregivers. Both agree emphatically on the importance of palliative care across all stages of HF with integration early in the illness trajectory. Also, the guidelines concur that palliative care should include symptom management, communication about prognosis and life-sustaining therapies, as well as advance care planning. Despite this consensus, only the AHA/ACC/HFSA guideline gives official recommendations on the provision of palliative care. Moreover, the AHA/ACC/HFSA guideline advocates for a needs-based approach to palliative care allocation while the ESC guideline ties palliative care closely to advanced HF and end-of-life care. The ESC guideline highlights the need for regular symptom assessment and provides detailed guidance on symptom management. The AHA/ACC/HFSA guideline elaborates further on shared decision-making, caregiver and bereavement support, as well as hospice care, and distinguishes between primary palliative care (provided by all clinicians) and secondary (specialty-level) palliative care. Although there is strong agreement on the importance and components of palliative care for patients with HF, there are nuanced differences between the two HF guidelines. Most notably, only the AHA/ACC/HFSA guideline issues recommendations for the provision of palliative care.

Palliative care referral across the disease trajectory in high-grade glioma.

PURPOSE: Adults with high-grade glioma (HGG), WHO grade III or IV, have substantial palliative care needs. Our aim was to determine occurrence, timing, and factors associated with palliative care consultation (PCC) in HGG at one large academic institution. METHODS: HGG patients receiving care between 08/1/2011 and 01/23/2020 were identified retrospectively from a multi-center healthcare system cancer registry. Patients were stratified by any PCC (yes/no), and timing of initial PCC by disease phase: diagnosis (before radiation), during initial treatment (first-line chemotherapy/radiation), second-line treatment(s), or end-of-life (after last chemotherapy). RESULTS: Of 621 HGG patients, 134 (21.58%) received PCC with the vast majority occurring during hospital admission [111 (82.84%)]. Of the 134, 14 (10.45%) were referred during the diagnostic phase; 35 (26.12%) during initial treatment; 20 (14.93%) during second-line treatment; and 65 (48.51%) during end of life. In multivariable logistic regression, only higher Charlson Comorbidity Index was associated with greater odds of PCC [OR 1.3 (95% CI 1.2-1.4), p < 0.01]; but not age or histopathology. Patients who received PCC prior to end of life had longer survival from diagnosis than those referred during end of life [16.5 (8, 24) months vs. 11 (4, 17); p < 0.01]. CONCLUSION: A minority of HGG patients ever received PCC, which primarily occurred in the inpatient setting, and nearly half during the end-of-life phase. Thus, only about one in ten patients in the entire cohort potentially received the benefits of earlier PCC despite earlier referral having an association with longer survival. Further studies should elucidate barriers and facilitators to early PCC in HGG.

Using Latent Class Analysis to Identify Different Clinical Profiles Among Patients With Advanced Heart Failure.

Context: Although palliative care is guideline-indicated for patients with advanced heart failure (HF), the scarcity of a specialty-trained palliative care workforce demands better identification of patients who are most burdened by the disease. Objectives: We sought to identify latent subgroups with variations regarding symptom burden, functional status, and multimorbidity in an advanced HF population. Methods: We performed a latent class analysis (LCA) of baseline data from a trial enrolling advanced HF patients. As LCA input variables, we chose indicators of HF severity, physical and psychological symptom burden, functional status, and the number of comorbidities. Results: Among 563 patients, two subgroups emerged from LCA, Class A (352 [62.5%]) and Class B (211 [37.5%]). Patients in Class A were less often classified as NYHA class III or IV (88.0% vs. 97.5%, P < 0.001), as compared to Class B patients. Class A patients had fewer symptoms, fewer comorbidities, only 25.9% had impairments in activities of daily living (ADL), and virtually none suffered from clinically significant anxiety (0.4%) or depression (0.9%). In Class B, every patient reported more than three symptoms, almost all patients (92.6%) had some impairment in ADL, and nearly a third had anxiety (30.2%) or depression (28.3%). All-cause mortality after 12 months was higher in Class B, as compared to Class A (18.5% vs. 12.5%, P = 0.047). Conclusion: Among advanced HF patients, we identified a distinct subgroup characterized by a conjunction of high symptom burden, anxiety, depression, multimorbidity, and functional status impairment, which might profit particularly from palliative care interventions. J Pain Symptom Manage 2022;000:1-9.

Building a Cardiac Palliative Care Program: A Qualitative Study of the Experiences of Ten Program Leaders From Across the United States.

CONTEXT: Palliative care is guideline-recommended for patients with advanced heart failure (HF). However, studies on how cardiac palliative care is provided in the United States are lacking. OBJECTIVES: To study how cardiac palliative care programs provide services, and to identify challenges and facilitators they encountered in program development. METHODS: In this qualitative descriptive study, we used purposive and snowball sampling approaches to identify cardiac palliative care program leaders across the United States, administered a survey and conducted semi-structured interviews. Interview transcripts were coded and evaluated using thematic analysis. RESULTS: While cardiac palliative care programs vary in their organizational setup, they all provide comprehensive interdisciplinary palliative care services, ideally across the care continuum. They predominantly serve HF patients who are evaluated for advanced therapies or have complex needs. The challenges which cardiac palliative care programs face include reaching those cardiac patients who need palliative care the most and collaborating with cardiologists who do not see value added from palliative care for their patients. Facilitators of cardiac palliative care program development include building personal relationships with cardiology providers, proactively assessing local institution needs, and tailoring palliative care services to meet patient and provider needs. CONCLUSION: Cardiac palliative care programs vary in their organizational setup but provide similar services and face similar challenges. The challenges and facilitators we identified can inform the development of future cardiac palliative care programs.

Enhancing Palliative Care for Patients With Advanced Heart Failure Through Simple Prognostication Tools: A Comparison of the Surprise Question, the Number of Previous Heart Failure Hospitalizations, and the Seattle Heart Failure Model for Predicting 1-Year Survival.

Background: Score-based survival prediction in patients with advanced heart failure (HF) is complicated. Easy-to-use prognostication tools could inform clinical decision-making and palliative care delivery. Objective: To compare the prognostic utility of the Seattle HF model (SHFM), the surprise question (SQ), and the number of HF hospitalizations (NoH) within the last 12 months for predicting 1-year survival in patients with advanced HF. Methods: We retrospectively analyzed data from a cluster-randomized controlled trial of advanced HF patients, predominantly with reduced ejection fraction. Primary outcome was the prognostic discrimination of SHFM, SQ ("Would you be surprised if this patient were to die within 1 year?") answered by HF cardiologists, and NoH, assessed by receiver operating characteristic (ROC) curve analysis. Optimal cut-offs were calculated using Youden's index (SHFM: <86% predicted 1-year survival; NoH ≥ 2). Results: Of 535 subjects, 82 (15.3%) had died after 1-year of follow-up. SHFM, SQ, and NoH yielded a similar area under the ROC curve [SHFM: 0.65 (0.60-0.71 95% CI); SQ: 0.58 (0.54-0.63 95% CI); NoH: 0.56 (0.50-0.62 95% CI)] and similar sensitivity [SHFM: 0.76 (0.65-0.84 95% CI); SQ: 0.84 (0.74-0.91 95% CI); NoH: 0.56 (0.45-0.67 95% CI)]. As compared to SHFM, SQ had lower specificity [SQ: 0.33 (0.28-0.37 95% CI) vs. SHFM: 0.55 (0.50-0.60 95% CI)] while NoH had similar specificity [0.56 (0.51-0.61 95% CI)]. SQ combined with NoH showed significantly higher specificity [0.68 (0.64-0.73 95% CI)]. Conclusion: SQ and NoH yielded comparable utility to SHFM for 1-year survival prediction among advanced HF patients, are easy-to-use and could inform bedside decision-making.

Impact of radiotherapy on daily function among older adults living with advanced cancer (RT impact on function in advanced cancer).

BACKGROUND: While radiation therapy (RT) improves function, and quality of life for patients with advanced cancers, patients frequently experience a period of acute toxicity during which functional abilities may decline. Little is understood about changes in functional outcomes after RT in older adults. This study aims to examine changes in daily function at 1 and 6 months following RT. METHODS: We reviewed the charts of 117 patients who underwent palliative RT on a prospective registry. Activities of daily living (ADL) and instrumental activities of daily living (IADL) scores ranging from 0 to 6 and 0-8, respectively, were collected at baseline, one-month, and six months post-RT. Patients were classified as low deficit for ADL/IADL if they had 0-1 deficits and high deficit if they had 2+ deficits. RESULTS: One-hundred seventy RT courses were identified; 99 were evaluable at each time point. The median age was 67 years. At baseline, 29.5 and 29.9% of patients were classified as high-deficit for ADL and IADL functioning, respectively. At one-month, the majority of patients who were low-deficit at baseline remained so for both measures while approximately one quarter of high-deficit patients showed improvement. Most patients identified as low-deficit at one-month remained so at six-months, while no high-deficit patients improved from one- to six-months. Factors associated with high ADL and IADL deficits included: time (six months), increasing age, and Hispanic/other race. Compared to those with ECOG score of 3, patients with lower scores (0-2) had lower odds of high deficit. CONCLUSION: ADL and IADL tools may be useful in describing changes in daily function after palliative RT and in identifying groups of patients who may benefit from additional supportive geriatric care interventions.

Palliative Care Consultation for Hospitalized Patients with Primary and Secondary Brain Tumors at a Single Academic Center.

Introduction: Studies addressing palliative care delivery in neuro-oncology are limited. Objectives: To compare inpatients with brain tumors who received palliative care (through referral or trigger) with those receiving usual care. Design: Retrospective cohort study. Setting/Subjects: Inpatients with primary or secondary brain tumors who did or did not receive palliative care at a U.S. medical center. Measurements: Sociodemographic, clinical, and utilization characteristics were compared. Results: Of 1669 brain tumor patients, 386 (23.1%) received palliative care [nontrigger: 246 (14.7%); trigger: 140 (8.4%)] and 1283 (76.9%) received usual care. Nontrigger patients were oldest (mean age 65.0 years; trigger: 61.1 years; usual care: 55.5 years; p < 0.001); sickest at baseline (mean Elixhauser comorbidity index 3.76; trigger: 3.49; usual care: 1.84; p < 0.001); and had highest in-hospital death [34 (13.8%), trigger: 10 (7.1%), usual care: 7 (0.5%); p < 0.001] and hospice discharge [54 (22.0%), trigger: 18 (12.9%), usual care: 14 (1.1%); p < 0.001]. Conclusions: Trigger criteria may promote earlier palliative care referral, yet criteria tailored for neuro-oncology are undeveloped.

Non-Concordance between Patient and Clinician Estimates of Prognosis in Advanced Heart Failure.

IMPORTANCE: Despite efforts to enhance serious illness communication, patients with advanced heart failure (HF) lack prognostic understanding. OBJECTIVES: To determine rate of concordance between HF patients' estimation of their prognosis and their physician's estimate of the patient's prognosis, and to compare patient characteristics associated with concordance. DESIGN: Cross-sectional analysis of a cluster randomized controlled trial with 24-month follow-up and analysis completed on 09/01/2020. Patients were enrolled in inpatient and outpatient settings between September 2011 to February 2016 and data collection continued until the last quarter of 2017. SETTING: Six teaching hospitals in the U.S. PARTICIPANTS: Patients with advanced HF and implantable cardioverter defibrillators (ICDs) at high risk of death. Of 537 patients in the parent study, 407 had complete data for this analysis. INTERVENTION: A multi-component communication intervention on conversations between HF clinicians and their patients regarding ICD deactivation and advance care planning. MAIN OUTCOME(S) AND MEASURE(S): Patient self-report of prognosis and physician response to the "surprise question" of 12-month prognosis. Patient-physician prognostic concordance (PPPC) measured in percentage agreement and kappa. Bivariate analyses of characteristics of patients with and without PPPC. RESULTS: Among 407 patients (mean age 62.1 years, 29.5% female, 42.4% non-white), 300 (73.7%) dyads had non-PPPC; of which 252 (84.0%) reported a prognosis >1 year when their physician estimated <1 year. Only 107 (26.3%) had PPPC with prognosis of ≤ 1 year (n=20 patients) or > 1 year (n=87 patients); (Κ = -0.20, p = 1.0). Of those with physician estimated prognosis of < 1 year, non-PPPC was more likely among patients with lower symptom burden- number and severity (both p ≤.001), without completed advance directive (p=.001). Among those with physician prognosis estimate > 1 year, no patient characteristic was associated with PPPC or non-PPPC. CONCLUSIONS AND RELEVANCE: Non-PPPC between HF patients and their physicians is high. HF patients are more optimistic than clinicians in estimating life expectancy. These data demonstrate there are opportunities to improve the quality of prognosis disclosure between patients with advanced HF and their physicians. Interventions to improve PPPC might include serious illness communication training.

Inpatient Specialty-Level Palliative Care Is Delivered Late in the Course of Hepatocellular Carcinoma and Associated With Lower Hazard of Hospital Readmission.

CONTEXT: Little is known about receipt of specialty-level palliative care by people with hepatocellular carcinoma (HCC) or its impact on health care utilization. OBJECTIVES: Identify patient characteristics associated with receipt of specialty-level palliative care among hospitalized HCC patients and measure association with time to readmission. METHODS: We used logistic regression to examine relationships between receipt of inpatient palliative care consultation by HCC patients at an academic center (N = 811; 2012-2016) and clinical and demographic covariates at index hospitalization. We used a survival analysis model accounting for competing risk of mortality to compare time to readmission among individuals who did or did not receive palliative care during the admission and performed a sensitivity analysis using kernel weights to account for selection bias. RESULTS: Overall, 16% received inpatient palliative care consults. Those who received consults had worse laboratory values than those who did not. In a multivariable model, higher Model for End-Stage Liver Disease Sodium, receipt of sorafenib, and higher pain scores were significantly associated with increased odds of palliative care, whereas liver transplantation and admission to a surgical service were associated with lower odds. For time to readmission (2076 hospitalizations for 811 individuals with 175 palliative care visits), the subhazard ratio for readmission for patients who received consults was 0.26 (95% CI = 0.18-0.38) and 0.35 (95% CI = 0.24-0.52) with a kernel-weighted sample. CONCLUSION: Inpatient palliative care consultation was received by individuals with more advanced disease and associated with lower readmission hazard. These findings support further research and the development of HCC-specific programs that increase access to specialty-level palliative care.

Differences between patients with cardiovascular disease and cancer referred for palliative care.

Our analysis from a national registry shows that compared to cancer, cardiovascular disease patients referred to palliative care are a decade older, have worse functional status and clinician-estimated prognosis. Both groups have very high symptom burden, with cardiovascular disease patients experiencing more dyspnea while pain, nausea, and fatigue are more common in cancer.

Palliative Care in High-Grade Glioma: A Review.

High-grade glioma (HGG) is characterized by debilitating neurologic symptoms and poor prognosis. Some of the suffering this disease engenders may be ameliorated through palliative care, which improves quality of life for seriously ill patients by optimizing symptom management and psychosocial support, which can be delivered concurrently with cancer-directed treatments. In this article, we review palliative care needs associated with HGG and identify opportunities for primary and specialty palliative care interventions. Patients with HGG and their caregivers experience high levels of distress due to physical, emotional, and cognitive symptoms that negatively impact quality of life and functional independence, all in the context of limited life expectancy. However, patients typically have limited contact with specialty palliative care until the end of life, and there is no established model for ensuring their palliative care needs are met throughout the disease course. We identify low rates of advance care planning, misconceptions about palliative care being synonymous with end-of-life care, and the unique neurologic needs of this patient population as some of the potential barriers to increased palliative interventions. Further research is needed to define the optimal roles of neuro-oncologists and palliative care specialists in the management of this illness and to establish appropriate timing and models for palliative care delivery.

Prognostic Awareness and Goals of Care Discussions Among Patients With Advanced Heart Failure.

BACKGROUND: Prognostic awareness (PA)-the understanding of limited life expectancy-is critical for effective goals of care discussions (GOCD) in which patients discuss their goals and values in the context of their illness. Yet little is known about PA and GOCD in patients with advanced heart failure (HF). This study aims to determine the prevalence of PA among patients with advanced HF and patient characteristics associated with PA and GOCD. METHODS: We assessed the prevalence of self-reported PA and GOCD using data from a multisite communication intervention trial among patients with advanced HF with an implantable cardiac defibrillator at high risk of death. RESULTS: Of 377 patients (mean age 62 years, 30% female, 42% nonwhite), 78% had PA. Increasing age was a negative predictor of PA (odds ratio, 0.95 [95% CI, 0.92-0.97]; P<0.01). No other patient characteristics were associated with PA. Of those with PA, 26% had a GOCD. Higher comorbidities and prior advance directives were associated with GOCD but were of only borderline statistical significance in a fully adjusted model. Symptom severity (odds ratio, 1.77 [95% CI, 1.19-2.64]; P=0.005) remained a robust and statistically significant positive predictor of having a GOCD in the fully adjusted model. CONCLUSIONS: In a sample of patients with advanced HF, the frequency of PA was high, but fewer patients with PA discussed their end-of-life care preferences with their physician. Improved efforts are needed to ensure all patients with advanced HF have an opportunity to have GOCD with their doctors. Clinicians may need to target older patients with HF and continue to focus on those with signs of worsening illness (higher symptoms). Registration: URL: https://www.clinicaltrials.gov; Unique identifier: NCT01459744.

Evaluation of a Novel Educational Intervention to Improve Conversations About Implantable Cardioverter-Defibrillators Management in Patients with Advanced Heart Failure.

Background: Implantable cardioverter-defibrillators (ICDs) reduce the incidence of sudden cardiac death for high-risk patients with heart failure (HF), but shocks from these devices can also cause pain and anxiety at the end of life. Although professional society recommendations encourage proactive discussions about ICD deactivation, clinicians lack training in conducting these conversations, and they occur infrequently. Methods: As part of a six-center randomized controlled trial, we evaluated the educational component of a multicomponent intervention shown to increase conversations about ICD deactivation by clinicians who care for a subset of patients with advanced HF. This consisted of a 90-minute training workshop designed to improve the quality and frequency of conversations about ICD management. To characterize its utility as an isolated intervention, we compared HF clinicians' pre- and postworkshop scores (on a 5-point Likert scale) assessing self-reported confidence and skills in specific practices of advance care planning, ICD deactivation discussions, and empathic communication. Results: Forty intervention-group HF clinicians completed both pre- and postworkshop surveys. Preworkshop scores showed high baseline levels of confidence (4.36, standard deviation [SD] = 0.70) and skill (4.08, SD = 0.72), whereas comparisons of pre- and postworkshop scores showed nonsignificant decreases in confidence (-1.16, p = 0.252) and skill (-0.20, p = 0.843) after the training session. Conclusions: Our findings showed no significant changes in self-assessment ratings immediately after the educational intervention. However, our data did demonstrate that HF clinicians had high baseline self-perceptions of their skills in advance care planning conversations and appear to be well-primed for further professional development to improve communication in the setting of advanced HF.