Supporting the Heterogeneous and Evolving Treatment Preferences of Patients With Heart Failure Through Collaborative Home-Based Palliative Care.

Background We characterized the treatment preferences, care setting, and end-of-life outcomes among patients with advanced heart failure supported by a collaborative home-based model of palliative care. Methods and results This decedent cohort study included 250 patients with advanced heart failure who received collaborative home-based palliative care for a median duration of 1.9 months of follow-up in Ontario, Canada, from April 2013 to July 2019. Patients were categorized into 1 of 4 groups according to their initial treatment preferences. Outcomes included location of death (out of hospital versus in hospital), changes in treatment preferences, and health service use. Among patients who initially prioritized quantity of life, 21 of 43 (48.8%) changed their treatment preferences during follow-up (mean 0.28 changes per month). The majority of these patients changed their preferences to avoid hospitalization and focus on comfort at home (19 of 24 changes, 79%). A total of 207 of 250 (82.8%) patients experienced an out-of-hospital death. Patients who initially prioritized quantity of life had decreased odds of out-of-hospital death (versus in-hospital death; adjusted odds ratio, 0.259 [95% CI, 0.097-0.693]) and more frequent hospitalizations (mean 0.45 hospitalizations per person-month) compared with patients who initially prioritized quality of life at home. Conclusions Our results yield a more detailed understanding of the interaction of advanced care planning and patient preferences. Shared decision making for personalized treatment is dynamic and can be enacted earlier than at the very end of life.

No Time to Waste: An Appraisal of Value at the End of Life.

OBJECTIVES: The use of economic evaluations of end-of-life interventions may be limited by an incomplete appreciation of how patients and society perceive value at end of life. The objective of this study was to evaluate how patients, caregivers, and society value gains in quantity of life and quality of life (QOL) at the end of life. The validity of the assumptions underlying the use of the quality-adjusted life-years (QALY) as a measure of preferences at end of life was also examined. METHODS: MEDLINE, Embase, CINAHL, PsycINFO, and PubMed were searched from inception to February 22, 2021. Original research studies reporting empirical data on healthcare priority setting at end of life were included. There was no restriction on the use of either quantitative or qualitative methods. Two reviewers independently screened, selected, and extracted data from studies. Narrative synthesis was conducted for all included studies. The primary outcomes were the value of gains in quantity of life and the value of gains in QOL at end of life. RESULTS: A total of 51 studies involving 53 981 participants reported that gains in QOL were generally preferred over quantity of life at the end of life across stakeholder groups. Several violations of the underlying assumptions of the QALY to measure preferences at the end of life were observed. CONCLUSIONS: Most patients, caregivers, and members of the general public prioritize gains in QOL over marginal gains in life prolongation at the end of life. These findings suggest that policy evaluations of end-of-life interventions should favor those that improve QOL. QALYs may be an inadequate measure of preferences for end-of-life care thereby limiting their use in formal economic evaluations of end-of-life interventions.

HeartFull: Feasibility of an Integrated Program of Care for Patients with Advanced Stage of Heart Failure.

INTRODUCTION: Patients at an advanced stage of heart failure (AHF), specifically chronic severe symptomatic heart failure defined as New York Heart Association III/IV with hospitalization in the year prior, have high mortality, healthcare utilization, and low palliative care involvement. OBJECTIVES: The primary objectives were to determine the feasibility of recruiting patients and engaging cardiology and palliative healthcare providers in a program of integrated care for AHF (HeartFull); the proportion of patients who died in non-acute care settings. Secondary objectives were to describe patient-reported outcomes and pre-post comparison of healthcare utilization. METHODS: Patients were recruited from an urban academic hospital with expert heart failure care and a 24/7 inpatient and home palliative service. Utilization, disposition, and surveys were collected monthly for up to 20 months. RESULTS: Of 46 patients referred, 30 (65%) agreed to participate, 27 died during the study period, 19 (70%) died in non-acute care settings, while 8 (30%) died in hospital. We found no significant difference in pre- and post-intervention rates of hospitalization (RR .715; CI .360, 1.388; P = .3180), nor emergency visits (RR .678; CI .333, 1.338; P = .2590), but both trended downward. No significant changes were observed in patient-reported outcomes. CONCLUSION: In an urban academic hospital with palliative care, it was feasible to implement an integrated program for AHF. Patients died at home or in a palliative care unit at rates similar to palliative oncology patients and at higher rates than the general AHF population. HeartFull is now part of clinical practice.

Association Between Attending Physicians' Rates of Referral to Palliative Care and Location of Death in Hospitalized Adults With Serious Illness: A Population-based Cohort Study.

BACKGROUND: Patients who receive palliative care are less likely to die in hospital. OBJECTIVE: To measure the association between physician rates of referral to palliative care and location of death in hospitalized adults with serious illness. RESEARCH DESIGN: Population-based decedent cohort study using linked health administrative data in Ontario, Canada. SUBJECTS: A total of 7866 physicians paired with 130,862 hospitalized adults in their last year of life who died of serious illness between 2010 and 2016. EXPOSURE: Physician annual rate of referral to palliative care (high, average, low). MEASURES: Odds of death in hospital versus home, adjusted for patient characteristics. RESULTS: There was nearly 4-fold variation in the proportion of patients receiving palliative care during follow-up based on attending physician referral rates: high 42.4% (n=24,433), average 24.7% (n=10,772), low 10.7% (n=6721). Referral to palliative care was also associated with being referred by palliative care specialists and in urban teaching hospitals. The proportion of patients who died in hospital according to physician referral rate were 47.7% (high), 50.1% (average), and 52.8% (low). Hospitalized patients cared for by a physician who referred to palliative care at a high rate had lower risk of dying in hospital than at home compared with patients who were referred by a physician with an average rate of referral [adjusted odds ratio 0.91; 95% confidence interval, 0.86-0.95; number needed to treat=57 (interquartile range 41-92)] and by a physician with a low rate of referral [adjusted odds ratio 0.81; 95% confidence interval, 0.77-0.84; number needed to treat =28 patients (interquartile range 23-44)]. CONCLUSIONS AND RELEVANCE: An attending physicians' rates of referral to palliative care is associated with a lower risk of dying in hospital. Therefore, patients who are cared for by physicians with higher rates of referral to palliative care are less likely to die in hospital and more likely to die at home. Standardizing referral to palliative care may help reduce physician-level variation as a barrier to access.

Association between high cost user status and end-of-life care in hospitalized patients: A national cohort study of patients who die in hospital.

BACKGROUND: Studies comparing end-of-life care between patients who are high cost users of the healthcare system compared to those who are not are lacking. AIM: The objective of this study was to describe and measure the association between high cost user status and several health services outcomes for all adults in Canada who died in acute care, compared to non-high cost users and those without prior healthcare use. SETTINGS AND PARTICIPANTS: We used administrative data for all adults who died in hospital in Canada between 2011 and 2015 to measure the odds of admission to the intensive care unit (ICU), receipt of invasive interventions, major surgery, and receipt of palliative care during the hospitalization in which the patient died. High cost users were defined as those in the top 10% of acute healthcare costs in the year prior to a person's hospitalization in which they died. RESULTS: Among 252,648 people who died in hospital, 25,264 were high cost users (10%), 112,506 were non-high cost users (44.5%) and 114,878 had no prior acute care use (45.5%). After adjustment for age and sex, high cost user status was associated with a 14% increased odds of receiving an invasive intervention, a 15% increased odds of having major surgery, and an 8% lower odds of receiving palliative care compared to non-high cost users, but opposite when compared to patients without prior healthcare use. CONCLUSIONS: Many patients receive aggressive elements of end-of-life care during the hospitalization in which they die and a substantial number do not receive palliative care. Understanding how this care differs between those who were previously high- and non-high cost users may provide an opportunity to improve end of life care for whom better care planning and provision ought to be an equal priority.

Association of Receipt of Palliative Care Interventions With Health Care Use, Quality of Life, and Symptom Burden Among Adults With Chronic Noncancer Illness: A Systematic Review and Meta-analysis.

Importance: The evidence for palliative care exists predominantly for patients with cancer. The effect of palliative care on important end-of-life outcomes in patients with noncancer illness is unclear. Objective: To measure the association between palliative care and acute health care use, quality of life (QOL), and symptom burden in adults with chronic noncancer illnesses. Data Sources: MEDLINE, Embase, CINAHL, PsycINFO, and PubMed from inception to April 18, 2020. Study Selection: Randomized clinical trials of palliative care interventions in adults with chronic noncancer illness. Studies involving at least 50% of patients with cancer were excluded. Data Extraction and Synthesis: Two reviewers independently screened, selected, and extracted data from studies. Narrative synthesis was conducted for all trials. All outcomes were analyzed using random-effects meta-analysis. Main Outcomes and Measures: Acute health care use (hospitalizations and emergency department use), disease-generic and disease-specific quality of life (QOL), and symptoms, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy-Palliative Care scale (range, 0 [worst] to 184 [best]; minimal clinically important difference, 9 points) and symptoms translated to units of the Edmonton Symptom Assessment Scale global distress score (range, 0 [best] to 90 [worst]; minimal clinically important difference, 5.7 points). Results: Twenty-eight trials provided data on 13 664 patients (mean age, 74 years; 46% were women). Ten trials were of heart failure (n = 4068 patients), 11 of mixed disease (n = 8119), 4 of dementia (n = 1036), and 3 of chronic obstructive pulmonary disease (n = 441). Palliative care, compared with usual care, was statistically significantly associated with less emergency department use (9 trials [n = 2712]; 20% vs 24%; odds ratio, 0.82 [95% CI, 0.68-1.00]; I2 = 3%), less hospitalization (14 trials [n = 3706]; 38% vs 42%; odds ratio, 0.80 [95% CI, 0.65-0.99]; I2 = 41%), and modestly lower symptom burden (11 trials [n = 2598]; pooled standardized mean difference (SMD), -0.12; [95% CI, -0.20 to -0.03]; I2 = 0%; Edmonton Symptom Assessment Scale score mean difference, -1.6 [95% CI, -2.6 to -0.4]). Palliative care was not significantly associated with disease-generic QOL (6 trials [n = 1334]; SMD, 0.18 [95% CI, -0.24 to 0.61]; I2 = 87%; Functional Assessment of Chronic Illness Therapy-Palliative Care score mean difference, 4.7 [95% CI, -6.3 to 15.9]) or disease-specific measures of QOL (11 trials [n = 2204]; SMD, 0.07 [95% CI, -0.09 to 0.23]; I2 = 68%). Conclusions and Relevance: In this systematic review and meta-analysis of randomized clinical trials of patients with primarily noncancer illness, palliative care, compared with usual care, was statistically significantly associated with less acute health care use and modestly lower symptom burden, but there was no significant difference in quality of life. Analyses for some outcomes were based predominantly on studies of patients with heart failure, which may limit generalizability to other chronic illnesses.

Association between palliative care and healthcare outcomes among adults with terminal non-cancer illness: population based matched cohort study.

OBJECTIVE: To measure the associations between newly initiated palliative care in the last six months of life, healthcare use, and location of death in adults dying from non-cancer illness, and to compare these associations with those in adults who die from cancer at a population level. DESIGN: Population based matched cohort study. SETTING: Ontario, Canada between 2010 and 2015. PARTICIPANTS: 113 540 adults dying from cancer and non-cancer illness who were given newly initiated physician delivered palliative care in the last six months of life administered across all healthcare settings. Linked health administrative data were used to directly match patients on cause of death, hospital frailty risk score, presence of metastatic cancer, residential location (according to 1 of 14 local health integration networks that organise all healthcare services in Ontario), and a propensity score to receive palliative care that was derived by using age and sex. MAIN OUTCOME MEASURES: Rates of emergency department visits, admissions to hospital, and admissions to the intensive care unit, and odds of death at home versus in hospital after first palliative care visit, adjusted for patient characteristics (such as age, sex, and comorbidities). RESULTS: In patients dying from non-cancer illness related to chronic organ failure (such as heart failure, cirrhosis, and stroke), palliative care was associated with reduced rates of emergency department visits (crude rate 1.9 (standard deviation 6.2) v 2.9 (8.7) per person year; adjusted rate ratio 0.88, 95% confidence interval 0.85 to 0.91), admissions to hospital (crude rate 6.1 (standard deviation 10.2) v 8.7 (12.6) per person year; adjusted rate ratio 0.88, 95% confidence interval 0.86 to 0.91), and admissions to the intensive care unit (crude rate 1.4 (standard deviation 5.9) v 2.9 (8.7) per person year; adjusted rate ratio 0.59, 95% confidence interval 0.56 to 0.62) compared with those who did not receive palliative care. Additionally increased odds of dying at home or in a nursing home compared with dying in hospital were found in these patients (n=6936 (49.5%) v n=9526 (39.6%); adjusted odds ratio 1.67, 95% confidence interval 1.60 to 1.74). Overall, in patients dying from dementia, palliative care was associated with increased rates of emergency department visits (crude rate 1.2 (standard deviation 4.9) v 1.3 (5.5) per person year; adjusted rate ratio 1.06, 95% confidence interval 1.01 to 1.12) and admissions to hospital (crude rate 3.6 (standard deviation 8.2) v 2.8 (7.8) per person year; adjusted rate ratio 1.33, 95% confidence interval 1.27 to 1.39), and reduced odds of dying at home or in a nursing home (n=6667 (72.1%) v n=13 384 (83.5%); adjusted odds ratio 0.68, 95% confidence interval 0.64 to 0.73). However, these rates differed depending on whether patients dying with dementia lived in the community or in a nursing home. No association was found between healthcare use and palliative care for patients dying from dementia who lived in the community, and these patients had increased odds of dying at home. CONCLUSIONS: These findings highlight the potential benefits of palliative care in some non-cancer illnesses. Increasing access to palliative care through sustained investment in physician training and current models of collaborative palliative care could improve end-of-life care, which might have important implications for health policy.

Cost-effectiveness of Investment in End-of-Life Home Care to Enable Death in Community Settings.

BACKGROUND: Many people with terminal illness prefer to die in home-like settings-including care homes, hospices, or palliative care units-rather than an acute care hospital. Home-based palliative care services can increase the likelihood of death in a community setting, but the provision of these services may increase costs relative to usual care. OBJECTIVE: The aim of this study was to estimate the incremental cost per community death for persons enrolled in end-of-life home care in Ontario, Canada, who died between 2011 and 2015. METHODS: Using a population-based cohort of 50,068 older adults, we determined the total cost of care in the last 90 days of life, as well as the incremental cost to achieve an additional community death for persons enrolled in end-of-life home care, in comparison with propensity score-matched individuals under usual care (ie, did not receive home care services in the last 90 days of life). RESULTS: Recipients of end-of-life home care were nearly 3 times more likely to experience a community death than individuals not receiving home care services, and the incremental cost to achieve an additional community death through the provision of end-of-life home care was CAN$995 (95% confidence interval: -$547 to $2392). CONCLUSION: Results suggest that a modest investment in end-of-life home care has the potential to improve the dying experience of community-dwelling older adults by enabling fewer deaths in acute care hospitals.

A Hospital Partnership with a Nursing Home Experiencing a COVID-19 Outbreak: Description of a Multiphase Emergency Response in Toronto, Canada.

Nursing homes have become "ground zero" for the coronavirus disease 2019 (COVID-19) epidemic in North America, with homes experiencing widespread outbreaks, resulting in severe morbidity and mortality among their residents. This article describes a 371-bed acute-care hospital's emergency response to a 126-bed nursing home experiencing a COVID-19 outbreak in Toronto, Canada. Like other healthcare system responses to COVID-19 outbreaks in nursing homes, this hospital-nursing home partnership can be characterized in several phases: (1) engagement, relationship, and trust building; (2) environmental scan, team building, and immediate response; (3) early-phase response; and (4) stabilization and transition period. J Am Geriatr Soc 68:1376-1381, 2020.

Palliative Care Transitions From Acute Care to Community-Based Care-A Systematic Review.

CONTEXT: Although the literature on transitions from hospital to the community is extensive, little is known about this experience within the context of palliative care (PC). OBJECTIVE: We conducted a systematic review to investigate the impact of receiving palliative care in hospital on the transition from hospital to the community. METHODS: We systematically searched MEDLINE, Embase, ProQuest, and CINAHL from 1995 until April 10, 2018, and extracted relevant references. Eligible articles were published in English, included adult patients receiving PC as inpatients, and explored transitions from hospital to the community. RESULTS: A total of 1514 studies were identified and eight met inclusion criteria. Studies were published recently (>2012; n = 7, 88%). Specialist PC interventions were delivered by multidisciplinary care teams as part of inpatient PC triggers, discharge planning programs, and transitional care programs. Common outcomes reported with significant findings consisted of length of stay (n = 5), discharge support (n = 5), and hospital readmissions (n = 6) for those who received inpatient PC. Most studies were at high risk of bias. CONCLUSION: Heterogeneity of study designs, outcomes, findings, and poor methodological quality renders it challenging to draw conclusions regarding PC's impact on the transition from hospital to home. Further research should use standardized outcomes with randomized controlled trial and/or propensity matched cohort designs.

Engagement of Primary Care Physicians in Home Palliative Care.

PURPOSE: To describe prevalence and characteristics associated with family physician and general practitioner (FP/GP) provision of home palliative care (HPC). METHODS: We surveyed FP/GPs in an urban health region of Ontario, Canada, to determine their current involvement in HPC, the nature of services provided, and perceived barriers and enablers. RESULTS: A total of 1439 surveys were mailed. Of the 302 FP/GP respondents, 295 provided replies regarding engagement in HPC: 101 of 295 (33%) provided HPC, 76 (26%) were engageable with further support, and 118 (40%) were not engageable regardless of support. The most substantial barrier was time to provide home visits (81%). Engaged FP/GPs were most likely to be working with another physician providing HPC ( P < .0001). Engageable FP/GPs were younger ( P = .007) and placed greater value on improved remuneration ( P < .001) than the other groups. Nonengageable physicians were most likely to view time as a barrier ( P < .0001) and to lack interest in PC ( P = .03). CONCLUSION: One-third of FP/GPs provide HPC. A cohort of younger physicians could be engageable with adequate support. Integrated practices including collaboration with specialist PC colleagues should be encouraged and supported.

The "surprise question" for predicting death in seriously ill patients: a systematic review and meta-analysis.

BACKGROUND: The surprise question - "Would I be surprised if this patient died in the next 12 months?" - has been used to identify patients at high risk of death who might benefit from palliative care services. Our objective was to systematically review the performance characteristics of the surprise question in predicting death. METHODS: We searched multiple electronic databases from inception to 2016 to identify studies that prospectively screened patients with the surprise question and reported on death at 6 to 18 months. We constructed models of hierarchical summary receiver operating characteristics (sROCs) to determine prognostic performance. RESULTS: Sixteen studies (17 cohorts, 11 621 patients) met the selection criteria. For the outcome of death at 6 to 18 months, the pooled prognostic characteristics were sensitivity 67.0% (95% confidence interval [CI] 55.7%-76.7%), specificity 80.2% (73.3%-85.6%), positive likelihood ratio 3.4 (95% CI 2.8-4.1), negative likelihood ratio 0.41 (95% CI 0.32-0.54), positive predictive value 37.1% (95% CI 30.2%-44.6%) and negative predictive value 93.1% (95% CI 91.0%-94.8%). The surprise question had worse discrimination in patients with noncancer illness (area under sROC curve 0.77 [95% CI 0.73-0.81]) than in patients with cancer (area under sROC curve 0.83 [95% CI 0.79-0.87; p = 0.02 for difference]). Most studies had a moderate to high risk of bias, often because they had a low or unknown participation rate or had missing data. INTERPRETATION: The surprise question performs poorly to modestly as a predictive tool for death, with worse performance in noncancer illness. Further studies are needed to develop accurate tools to identify patients with palliative care needs and to assess the surprise question for this purpose.

The determinants of home and nursing home death: a systematic review and meta-analysis.

BACKGROUND: Most Canadians die in hospital, and yet, many express a preference to die at home. Place of death is the result of the interaction among sociodemographic, illness- and healthcare-related factors. Although home death is sometimes considered a potential indicator of end-of-life/palliative care quality, some determinants of place of death are more modifiable than others. The objective of this systematic review was to evaluate the determinants of home and nursing home death in adult patients diagnosed with an advanced, life-limiting illness. METHODS: A systematic literature search was performed for studies in English published from January 1, 2004 to September 24, 2013 that evaluated the determinants of home or nursing home death compared to hospital death in adult patients with an advanced, life-limiting condition. The adjusted odds ratios, relative risks, and 95% confidence intervals of each determinant were extracted from the studies. Meta-analyses were performed if appropriate. The quality of individual studies was assessed using the Newcastle-Ottawa scale and the body of evidence was assessed according to the GRADE Working Group criteria. RESULTS: Of the 5,900 citations identified, 26 retrospective cohort studies were eligible. The risk of bias in the studies identified was considered low. Factors associated with an increased likelihood of home versus hospital death included multidisciplinary home palliative care, preference for home death, cancer as opposed to other diagnoses, early referral to palliative care, not living alone, having a caregiver, and the caregiver's coping skills. CONCLUSIONS: Knowledge about the determinants of place of death can be used to inform care planning between healthcare providers, patients and family members regarding the feasibility of dying in the preferred location and may help explain the incongruence between preferred and actual place of death. Modifiable factors such as early referral to palliative care, presence of a multidisciplinary home palliative care team were identified, which may be amenable to interventions that improve the likelihood of a patient dying in the preferred location. Place of death may not be a very good indicator of the quality of end-of-life/palliative care since it is determined by multiple factors and is therefore dependent on individual circumstances.

Are family medicine residents adequately trained to deliver palliative care?

OBJECTIVE: To explore educational factors that influence family medicine residents' (FMRs') intentions to offer palliative care and palliative care home visits to patients. DESIGN: Qualitative descriptive study. SETTING: A Canadian, urban, specialized palliative care centre. PARTICIPANTS: First-year (n = 9) and second-year (n = 6) FMRs. METHODS: Semistructured interviews were conducted with FMRs following a 4-week palliative care rotation. Questions focused on participant experiences during the rotation and perceptions about their roles as family physicians in the delivery of palliative care and home visits. Participant responses were analyzed to summarize and interpret patterns related to their educational experience during their rotation. MAIN FINDINGS: Four interrelated themes were identified that described this experience: foundational skill development owing to training in a specialized setting; additional need for education and support; unaddressed gaps in pragmatic skills; and uncertainty about family physicians' role in palliative care. CONCLUSION: Residents described experiences that both supported and inadvertently discouraged them from considering future engagement in palliative care. Reassuringly, residents were also able to underscore opportunities for improvement in palliative care education.