Association between opioid use disorder and palliative care: a cohort study using linked health administrative data in Ontario, Canada.

BACKGROUND: People with opioid use disorder (OUD) are at risk of premature death and can benefit from palliative care. We sought to compare palliative care provision for decedents with and without OUD. METHODS: We conducted a cohort study using health administrative databases in Ontario, Canada, to identify people who died between July 1, 2015, and Dec. 31, 2021. The exposure was OUD, defined as having emergency department visits, hospital admissions, or pharmacologic treatments suggestive of OUD within 3 years of death. Our primary outcome was receipt of 1 or more palliative care services during the last 90 days before death. Secondary outcomes included setting, initiation, and intensity of palliative care. We conducted a secondary analysis excluding sudden deaths (e.g., opioid toxicity, injury). RESULTS: Of 679 840 decedents, 11 200 (1.6%) had OUD. Compared with people without OUD, those with OUD died at a younger age and were more likely to live in neighbourhoods with high marginalization indices. We found people with OUD were less likely to receive palliative care at the end of their lives (adjusted relative risk [RR] 0.84, 95% confidence interval [CI] 0.82-0.86), but this difference did not exist after excluding people who died suddenly (adjusted RR 0.99, 95% CI 0.96-1.01). People with OUD were less likely to receive palliative care in clinics and their homes regardless of cause of death. INTERPRETATION: Opioid use disorder can be a chronic, life-limiting illness, and people with OUD are less likely to receive palliative care in communities during the 90 days before death. Health care providers should receive training in palliative care and addiction medicine to support people with OUD.

Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home (ACEPATH): Codesigning an intervention to improve patient and family caregiver experiences.

BACKGROUND: Returning home from the hospital for palliative-focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers. OBJECTIVE: To undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital-to-home transitions for adult patients receiving palliative care and their caregiver(s). METHODS: The codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low-fidelity prototype testing to review CDW outputs and develop low-fidelity prototypes of interventions. HCPs provided feedback on the viability of low-fidelity prototypes. RESULTS: Three patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low-fidelity prototype sessions to 20 HCPs. Participants in the low-fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions. CONCLUSION: Insights gained from this codesign work will inform high-fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital-to-home transitions for patients receiving a palliative approach to care. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient- and caregiver-centred.

Changes in End-of-Life Symptom Management Prescribing among Long-Term Care Residents during COVID-19.

OBJECTIVE: To examine changes in the prescribing of end-of-life symptom management medications in long-term care (LTC) homes during the COVID-19 pandemic. DESIGN: Retrospective cohort study using routinely collected health administrative data in Ontario, Canada. SETTING AND PARTICIPANTS: We included all individuals who died in LTC homes between January 1, 2017, and March 31, 2021. We separated the study into 2 periods: before COVID-19 (January 1, 2017, to March 17, 2020) and during COVID-19 (March 18, 2020, to March 31, 2021). METHODS: For each LTC home, we measured the percentage of residents who died before and during COVID-19 who had a subcutaneous symptom management medication prescription in their last 14 days of life. We grouped LTC homes into quintiles based on their mean prescribing rates before COVID-19, and examined changes in prescribing during COVID-19 and COVID-19 outcomes across quintiles. RESULTS: We captured 75,438 LTC residents who died in Ontario's 626 LTC homes during the entire study period, with 19,522 (25.9%) dying during COVID-19. The mean prescribing rate during COVID-19 ranged from 46.9% to 79.4% between the lowest and highest prescribing quintiles. During COVID-19, the mean prescribing rate in the lowest prescribing quintile increased by 9.6% compared to before COVID-19. Compared to LTC homes in the highest prescribing quintile, homes in the lowest prescribing quintile experienced the highest proportion of COVID-19 outbreaks (73.4% vs 50.0%), the largest mean outbreak intensity (0.27 vs 0.09 cases/bed), the highest mean total days with a COVID-19 outbreak (72.7 vs 24.2 days), and the greatest proportion of decedents who were transferred and died outside of LTC (22.1% vs 8.6%). CONCLUSIONS AND IMPLICATIONS: LTC homes in Ontario had wide variations in the prescribing rates of end-of-life symptom management medications before and during COVID-19. Homes in the lower prescribing quintiles had more COVID-19 cases per bed and days spent in an outbreak.

Measuring the Use of End-of-Life Symptom Relief Medications in Long-Term Care Homes-a Qualitative Study.

Background: At the end of life, individuals may experience physical symptoms such as pain, and guidelines recommend medications to manage these symptoms. Yet, little is known about the symptom management long-term care (LTC) residents receive at the end of life. Our research team developed a metric-whether residents receive one or more prescriptions for an end-of-life symptom management medication in their last two weeks-to explore end-of-life care for LTC residents. This qualitative study aimed to inform the refinement of the end-of-life prescribing metric, including the acceptability and applicability to assess the quality of a resident's symptom management at end-of-life. Methods: We conducted 14 semi-structured interviews with Ontario health-care providers (physicians and nurses) who work in LTC homes and family caregivers of residents who died in LTC. Interviews were conducted virtually between February 2021 and December 2022, and were analyzed using thematic analysis. Results: We identified three major themes relating to perceptions of the metric: 1) appropriateness, 2) health-care provider applicability, and 3) caregiver applicability. Participants noted that the metric may be appropriate to assess end-of-life care, but noted important nuances. Regarding applicability, health-care providers found value in the metric and that it could inform their practice. Conversely, caregivers found limited value in the metric. Conclusion: The proposed metric captures a very specific aspect of end-of-life care-whether end-of-life medications were prescribed or not. Participants deemed that the metric may reflect whether LTC homes have processes to manage a resident's end-of-life symptoms with medication. However, participants thought the metric could not provide a complete picture of end-of-life care and its quality.

Association of virtual end-of-life care with healthcare outcomes before and during the COVID-19 pandemic: A population-based study.

The use of virtual care for people at the end-of-life significantly increased during the COVID-19 pandemic, but its association with acute healthcare use and location of death is unknown. The objective of this study was to measure the association between the use of virtual end-of-life care with acute healthcare use and an out-of-hospital death before vs. after the introduction of specialized fee codes that enabled broader delivery of virtual care during the COVID-19 pandemic. This was a population-based cohort study of 323,995 adults in their last 90 days of life between January 25, 2018 and December 31, 2021 using health administrative data in Ontario, Canada. Primary outcomes were acute healthcare use (emergency department, hospitalization) and location of death (in or out-of-hospital). Prior to March 14, 2020, 13,974 (8%) people received at least 1 virtual end-of-life care visit, which was associated with a 16% higher rate of emergency department use (adjusted Rate Ratio [aRR] 1.16, 95%CI 1.12 to 1.20), a 17% higher rate of hospitalization (aRR 1.17, 95%CI 1.15 to 1.20), and a 34% higher risk of an out-of-hospital death (aRR 1.34, 95%CI 1.31 to 1.37) compared to people who did not receive virtual end-of-life care. After March 14, 2020, 104,165 (71%) people received at least 1 virtual end-of-life care visit, which was associated with a 58% higher rate of an emergency department visit (aRR 1.58, 95%CI 1.54 to 1.62), a 45% higher rate of hospitalization (aRR 1.45, 95%CI 1.42 to 1.47), and a 65% higher risk of an out-of-hospital death (aRR 1.65, 95%CI 1.61 to 1.69) compared to people who did not receive virtual end-of-life care. The use of virtual end-of-life care was associated with higher acute healthcare use in the last 90 days of life and a higher likelihood of dying out-of-hospital, and these rates increased during the pandemic.

Using Exploratory Structural Equation Modeling to Examine Caregiver Distress and Its Contributors.

OBJECTIVES: To develop and test the direct and indirect associations between caregiver distress and its many contributing factors and covariates. DESIGN: Analysis using data from a national, cross-sectional survey of Canadian caregivers. SETTING AND PARTICIPANTS: A total of 6502 respondents of the 2012 General Social Survey-Caregiving and Care-receiving who self-identified as a caregiver. METHODS: We used exploratory structural equation modeling to achieve our aims. Based on literature review, we hypothesized a structural model of 5 caregiving factors that contribute to distress: caregiving burden, caregiving network and support, disruptions of family and social life, positive emotional experiences, and caregiving history. Survey items hypothesized to measure each latent factor were modeled using exploratory factor analysis (EFA). After establishing a well-fit EFA model, structural equation modeling was performed to examine the relationships between caregiving factors and caregiver distress while controlling for covariates such as caregiver's and care-recipient's sociodemographic characteristics and kinship. RESULTS: EFA established a well-fit model that represented caregiver distress and its 5 contributing factors as hypothesized. Although all 5 had significant effects on caregiver distress, disruptions of family and social life contributed the most (ß = 0.462), almost 3 times that of caregiving burden (ß = 0.162). Positive emotional experiences also substantially reduced distress (ß = -0.310). CONCLUSIONS AND IMPLICATIONS: Understanding the multifaceted nature of caregiver distress is crucial for developing effective strategies to support caregivers. In addition to reducing caregiving burden, having flexible resources and policies to minimize disruptions to caregivers' families (eg, flexible work policies; family-oriented education, training, and counseling) and enhance the positive aspects of caregiving may more effectively reduce distress.

Palliative End-of-Life Medication Prescribing Rates in Long-Term Care: A Retrospective Cohort Study.

BACKGROUND: Medications are often needed to manage distressing end-of-life symptoms (eg, pain, agitation). OBJECTIVES: In this study, we describe the variation in prescribing rates of symptom relief medications at the end of life among long-term care (LTC) decedents. We evaluate the extent these medications are prescribed in LTC homes and whether prescribing rates of end-of-life symptom management can be used as an indicator of quality end-of-life care. DESIGN: Retrospective cohort study using administrative health data. SETTING AND PARTICIPANTS: LTC decedents in all 626 publicly funded LTC homes in Ontario, Canada, between January 1, 2017, and March 17, 2020. METHODS: For each LTC home, we measured the percent of decedents who received 1+ prescription(s) for a subcutaneous end-of-life symptom management medication ("end-of-life medication") in their last 14 days of life. We then ranked LTC homes into quintiles based on prescribing rates. RESULTS: We identified 55,916 LTC residents who died in LTC. On average, two-thirds of decedents (64.7%) in LTC homes were prescribed at least 1 subcutaneous end-of-life medication in the last 2 weeks of life. Opioids were the most common prescribed medication (overall average prescribing rate of 62.7%). LTC homes in the lowest prescribing quintile had a mean of 37.3% of decedents prescribed an end-of-life medication, and the highest quintile mean was 82.5%. In addition, across these quintiles, the lowest prescribing quintile had a high average (30.3%) of LTC residents transferred out of LTC in the 14 days compared with the highest prescribing quintile (12.7%). CONCLUSIONS AND IMPLICATIONS: Across Ontario's LTC homes, there are large differences in prescribing rates for subcutaneous end-of-life symptom relief medications. Although future work may elucidate why the variability exists, this study provides evidence that administrative data can provide valuable insight into the systemic delivery of end-of-life care.

Long-term bereavement outcomes in family members of those who died in acute care hospitals before and during the first wave of COVID-19: A cohort study.

BACKGROUND: Severe grief is highly distressing and prevalent up to 1 year post-death among people bereaved during the first wave of COVID-19, but no study has assessed changes in grief severity beyond this timeframe. AIM: Understand the trajectory of grief during the pandemic by reassessing grief symptoms in our original cohort 12-18 months post-death. DESIGN: Prospective matched cohort study. SETTINGS/PARTICIPANTS: Family members of decedents who died in an acute care hospital between November 1, 2019 and August 31, 2020 in Ottawa, Canada. Family members of patients who died of COVID (COVID +ve) were matched 2:1 with those who died of non-COVID illness (COVID -ve) during pandemic wave 1 or immediately prior to its onset (pre-COVID). Grief was assessed using the Inventory of Complicated Grief (ICG). RESULTS: Follow-up assessment was completed by 92% (111/121) of family members in the initial cohort. Mean ICG score on the 12-18-month assessment was 19.9 (SD = 11.8), and severe grief (ICG > 25) was present in 28.8% of participants. One-third (33.3%) had either a persistently high (>25) or worsening ICG score (⩾4-point increase between assessments). Using a modified Poisson regression analysis, persistently high or worsening ICG scores were associated with endotracheal intubation in the deceased, but not cause of death (COVID +ve, COVID -ve, pre-COVID) or physical presence of the family member in the final 48 h of life. CONCLUSIONS: Severe grief is a substantial source of psychological morbidity in the wake of the COVID-19 pandemic, persisting more than a year post-death. Our findings highlight an acute need for effective and scalable means of addressing severe grief.

Place of Death and Place of Care at the End of Life: Are They Correlated? A Retrospective Cohort Study of Ontario Decedents.

Background: Dying in nonpalliative acute care is generally considered inappropriate and avoidable. Place of death, a commonly reported big-dot indicator of end-of-life care quality, is often used as a proxy for place of care despite no empirical evidence for their correlations. Thus, we examined the correlations between place of death and place of care in the last month of life. We also investigated anecdotal claims that individuals cared in acute care often get discharged to die at home, and vice versa. Methods: We conducted a retrospective cohort study of Ontario decedents (18+) who died between January 1, 2015 and December 31, 2017. We identified individuals who died in nonpalliative acute care, palliative care unit, subacute care, long-term care (LTC), and the community. We calculated the number of days decedents spent in each setting in their last month of life, and used descriptive analyses to investigate their correlations. Results: Decedent's place of death generally correlated with their place of care in the last month of life-individuals who died in a particular setting spent more time in that setting than individuals who died elsewhere. Furthermore, 75.0% of individuals who spent more than two weeks of their last month in acute care died in acute care. Among individuals who died in the community and in LTC, 65.4% and 75.0%, respectively, spent zero days in acute care. Interpretation: We showed that place of death can be a useful high-level performance indicator, by itself and as a proxy for place of care, to gauge end-of-life quality and service provision/implementation.

Association of patient sex with use of palliative care in Ontario, Canada: a population-based study.

BACKGROUND: It is unclear whether there are sex-based differences in use of palliative care near the end of life. The objective of this study was to measure the association between sex and palliative care use. METHODS: We performed a population-based retrospective cohort study of all patients aged 18 years or older in the last year of life who died in Ontario, Canada, between 2010 and 2018. The primary exposure was patient biologic sex (male or female). The primary outcome was receipt of physician-delivered palliative care; secondary outcomes were approach to in-hospital palliative care and sex concordance of the patient and referring physician. We used multivariable modified Poisson regression to measure the association between patient sex and palliative care receipt, as well as patient-physician sex concordance. RESULTS: There were 706 722 patients (354 657 females [50.2%], median age 80 yr [interquartile range 69-87 yr]) in the study cohort, 377 498 (53.4%) of whom received physician-delivered palliative care. After adjustment for age and selected comorbidities, female sex was associated with a 9% relative increase (adjusted relative risk [RR] 1.09, 95% CI 1.08-1.10) in receipt of physician-delivered palliative care. Female patients were 16% more likely than male patients (adjusted RR 1.14, 95% CI 1.14-1.18) to have had their first hospital admission in their final year of life categorized as having a likely palliative intent. Female patients were 18% more likely than male patients (RR 1.18, 95% CI 1.17-1.19) to have had a female referring physician, and male patients were 20% more likely than female patients (adjusted RR 1.20, CI 1.19-1.21) to have had a male referring physician. INTERPRETATION: After adjustment for age and comorbidities, male patients were slightly less likely than female patients to have received physician-delivered palliative care, and female patients were more likely than male patients to have had their first hospital admission in their final year of life categorized as having a likely palliative care intent. These results may reflect a between-sex difference in overall end-of-life care preferences or sex differences in decision-making influenced by patient-specific factors; further studies exploring how these factors affect end-of-life decision-making are required.

Physician and administrator experience of preparing to implement Ontario's intensive care unit Triage Emergency Standard of Care during the COVID-19 pandemic: a qualitative study.

BACKGROUND: As the COVID-19 pandemic created a surge in demand for critical care resources, the province of Ontario, Canada, released the Adult Critical Care Clinical Emergency Standard of Care for Major Surge (Emergency Standard of Care [ESoC]), a triage framework to guide the allocation of critical care resources in the expectation that intensive care units would be overwhelmed. Our aim was to understand physicians' and administrators' experiences and perceptions of planning to implement the ESoC, and to identify ways to improve critical care triage processes for future pandemics. METHODS: We conducted semistructured qualitative interviews with critical care, emergency and internal medicine physicians, and hospital administrators from various Ontario health regions who were involved in their hospital's or region's ESoC implementation planning. Interviews were conducted virtually between April and October 2021. We analyzed the data using thematic analysis. RESULTS: We conducted interviews with 11 physicians and 10 hospital administrators representing 9 health regions. We identified 4 themes regarding participants' preparation to implement the ESoC: infrastructure to enable effective triage implementation; social, medical and political supports to enable effective triage implementation; moral dimensions of triage implementation; and communication of triage results. Participants outlined administrative and implementation-related improvements that could be provided at the provincial level, such as billing codes for ESoC. They also suggested improving ethical supports for the usability and quality of the ESoC (e.g., designating an ethicist in each region), and ways to improve the efficiency and usability of the tools for assessing short-term mortality risk (e.g., create information technology solutions such as a dashboard). INTERPRETATION: The implementation of a jurisdiction-level triage framework poses moral challenges for a health care system, but it also requires dedicated infrastructure, as well as institutional supports. Lessons learned from Ontario's process to prepare for ESoC implementation, as well as participants' suggestions, can be used for planning for current and future pandemics.

Re-Imagining Care for Older Adults with Heart Failure and Other Serious Illnesses.

Most patients with heart failure prefer to die at home and want to avoid unnecessary or aggressive treatments as they approach the end of life. Collaborative care models that provide coordinated, linked services from palliative and subspecialty practitioners may enable more effective heart failure-specific palliation in the home setting. Using both administrative health data at ICES and qualitative data from interviews with cardiology and palliative care physicians and nurse practitioners, researchers have found new evidence that collaborative care integrated into a regionally organized system of palliation positively impacts outcomes for people with heart failure and meets quality indicators for end-of-life heart failure care across Ontario.

Physician home visits to rostered patients during their last year of life: a retrospective cohort study.

BACKGROUND: Physician home visits are associated with better health outcomes, yet most patients near the end of life never receive such a visit. Our objectives were to describe the receipt of physician home visits during the last year of life after a referral to home care - an indication that the patient can no longer live independently - and to measure associations between patient characteristics and receipt of a home visit. METHODS: We conducted a retrospective cohort study using linked population-based health administrative databases housed at ICES. We identified adult (aged ≥ 18 yr) decedents in Ontario who died between Mar. 31, 2013, and Mar. 31, 2018, who were receiving primary care and were referred to publicly funded home care services. We described the provision of physician home visits, office visits and telephone management. We used multinomial logistic regression to calculate the odds of receiving home visits from a rostered primary care physician, controlling for referral during the last year of life, age, sex, income quintile, rurality, recent immigrant status, referral by rostered physician, referral during hospital stay, number of chronic conditions and disease trajectory based on the cause of death. RESULTS: Of the 58 753 decedents referred in their last year of life, 3125 (5.3%) received a home visit from their family physician. Patient characteristics associated with higher odds of receiving home visits compared to office-based or telephone-based care were being female (adjusted odds ratio [OR] 1.28, 95% confidence interval [CI] 1.21-1.35), being 85 years of age or older (adjusted OR 2.42, 95% CI 1.80-3.26) and living in a rural area (adjusted OR 1.09, 95% CI 1.00-1.18). Increased odds were associated with home care referrals by the patient's primary care physician (adjusted OR 1.49, 95% CI 1.39-1.58) and referrals occurring during a hospital stay (adjusted OR 1.20, 95% CI 1.13-1.28). INTERPRETATION: A small proportion of patients near the end of life received home-based physician care, and patient characteristics did not explain the low visit rates. Future work on system- and provider-level factors may be critical to improve access to home-based end-of-life primary care.

Differences in Palliative Care Provision by Primary and Specialist Providers Supporting Patients With COVID-19: A Qualitative Study.

Objectives: To describe the delivery of palliative care by primary providers (PP) and specialist providers (SP) to hospitalized patients with COVID-19. Methods: PP and SP completed interviews about their experiences providing palliative care. Results were analyzed using thematic analysis. Results: Twenty-one physicians (11 SP, 10 PP) were interviewed. Six thematic categories emerged. Care provision: PP and SP described their support of care discussions, symptom management, managing end of life, and care withdrawal. Patients provided care: PP described patients at end of life, with comfort-focused goals; SP included patients seeking life-prolonging treatments. Approach to symptom management: SP described comfort, and PP discomfort in providing opioids with survival-focused goals. Goals of care: SP felt these conversations were code status-focused. Supporting family: both groups indicated difficulties engaging families due to visitor restrictions; SP also outlined challenges in managing family grief and need to advocate for family at the bedside. Care coordination: internist PP and SP described difficulties supporting those leaving the hospital. Conclusion: PP and SP may have a different approach to care, which may affect consistency and quality of care.

Physician perceptions of restrictive visitor policies during the COVID-19 pandemic: a qualitative study.

BACKGROUND: Little is understood of the consequences of restrictive visitor policies that were implemented in hospitals to minimize risk of infection during the COVID-19 pandemic. The objective of this study was to describe physician experiences with these policies and reflections of their effects. METHODS: We conducted semistructured phone interviews from September 2020 to March 2021 with physicians practising in Ontario hospitals, recruited via professional networks and snowball sampling. We audio-recorded, transcribed and analyzed interviews to describe and interpret overarching themes by thematic analysis. RESULTS: We interviewed 21 physicians (5 intensivists, 5 internists, 11 specialists in palliative care). Four main thematic categories emerged, including provider, system, patient and caregiver effects. Provider-related factors included increased time and effort on communication with a need to establish limits; increased effort to develop rapport with caregivers; lack of caregiver input on patient care; the need to act as a caregiver surrogate; and the emotional toll of being a gatekeeper or advocate for visitors, exacerbated by lack of evidence for restrictions and inconsistent enforcement. System effects included the avoidance of hospital admission and decreased length of stay, leading to readmissions, increased deaths at home and avoidance of transfer to other facilities with similar policies. Patient-related factors included isolation and dying alone; lack of caregiver advocacy; and prioritization of visitor presence that, at times, resulted in a delay or withdrawal of aspects of care. Caregiver-related factors included inability to personally assess patient health, leading to poor understanding of patient status and challenging decision-making; perceived inadequate communication; difficulty accessing caregiver supports; and increased risk of complicated grief. Participants highlighted a disproportionate effect on older adults and people who did not speak English. INTERPRETATION: Our study highlights substantial negative consequences of restrictive visitor policies, with heightened effects on older adults and people who did not speak English. Research is required to identify whether the benefits of visitor restrictions on infection control outweigh the numerous deleterious consequences to patients, families and care providers.

Palliative care for people who use drugs during communicable disease epidemics and pandemics: A scoping review on access, policies, and programs and guidelines.

BACKGROUND: People who use drugs with life-limiting illnesses experience substantial barriers to accessing palliative care. Demand for palliative care is expected to increase during communicable disease epidemics and pandemics. Understanding how epidemics and pandemics affect palliative care for people who use drugs is important from a service delivery perspective and for reducing population health inequities. AIM: To explore what is known about communicable disease epidemics and pandemics, palliative care, and people who use drugs. DESIGN: Scoping review. DATA SOURCES: We searched six bibliographic databases from inception to April 2021 as well as the grey literature. We included English and French records about palliative care access, programs, and policies and guidelines for people ⩾18 years old who use drugs during communicable disease epidemics and pandemics. RESULTS: Forty-four articles were included in our analysis. We identified limited knowledge about palliative care for people who use drugs during epidemics and pandemics other than HIV/AIDS. Through our thematic synthesis of the records, we generated the following themes: enablers and barriers to access, organizational barriers, structural inequity, access to opioids and other psychoactive substances, and stigma. CONCLUSIONS: Our findings underscore the need for further research about how best to provide palliative care for people who use drugs during epidemics and pandemics. We suggest four ways that health systems can be better prepared to help alleviate the structural barriers that limit access as well as support the provision of high-quality palliative care during future epidemics and pandemics.

Describing settings of care in the last 100 days of life for cancer decedents: a population-based descriptive study.

BACKGROUND: Few studies have described the settings cancer decedents spend their end-of-life stage, with none considering homecare specifically. We describe the different settings of care experienced in the last 100 days of life by individuals with cancer and how settings of care change as they approached death. METHODS: A retrospective cohort study from January 2013 to December 2017, of decedents whose primary cause of death was cancer, using linked population-level health administrative datasets in Ontario, Canada. RESULTS: Decedents 125,755 were included in our cohort. The average age at death was 73, 46% were female, and 14% resided in rural regions. And 24% died of lung cancer, 7% breast, 7% colorectal, 7% pancreatic, 5% prostate, and 50% other cancers. In the last 100 days of life, decedents spent 25.9 days in institutions, 25.8 days receiving care in the community, and 48.3 days at home without any care. Individuals who died of lung and pancreatic cancers spent the most days at home without any care (52.1 and 52.6 days), while individuals who died of prostate and breast cancer spent the least days at home without any care (41.6 and 45.1 days). Regardless of cancer type, decedents spent fewer days at home and more days in institutions as they approached death, despite established patient preferences for an end-of-life experience at home. CONCLUSIONS: In the last 100 days of life, cancer decedents spent most of their time in either institutions or at home without any care. Improving homecare services during the end-of-life may provide people dying of cancer with a preferred dying experience.

Caring for older men and women: whose caregivers are more distressed? A population-based retrospective cohort study.

BACKGROUND: To our knowledge, no population-based studies have examined whether family or friend caregivers of men and women differ in their experience of distress over time. Thus, we aimed to describe, on a population-level and longitudinally, how older men and women care-receivers differed in their health and care needs, compare their caregivers' distress trajectories, and identify factors that contribute to the observed differences. METHODS: This is a population-based, retrospective cohort study using routinely collected data. We examined longitudinally 485,407 community-dwelling Ontario residents, aged over 50 years, who have received at least one Residential Assessment Instrument-Home Care (RAI-HC) assessment between April 2008 and June 2015. Descriptive analyses were performed on the demographic characteristics, health profiles, and care needs of men and women. We also compared their caregivers' baseline and one-year change in distress status. Logistic regressions were performed to examine if the effect of gender on caregiver distress is reduced after controlling for care-receiver's health and functional status as well as their caregiver's kinship and co-residence status. RESULTS: Men (39.5% of our cohort) were frailer, required more care, were mostly cared for by their spouses (52%), and mostly lived with their caregiver (66%). In contrast, women (60.5%) were more likely cared for by their child/child-in-law (60%), less likely to live with caregivers (47%), and received less care. Caregivers of men were more likely to be distressed at baseline (27.7% versus 20.4% of women caregivers) and remain distressed (74.6% versus 69.5%) or become distressed (19.3% versus 14.3%) throughout the year. In logistic regression modelling, the effect of care-receiver's gender on caregiver distress is reduced from an unadjusted odds ratio of 1.49 (95% CI: 1.47-1.51) to 1.17 (95% CI: 1.15-1.19) when care-receiver's health and caregiving factors are controlled for. CONCLUSION: Older men and women differed in health and care needs. Caregivers, especially those caring for men, were often distressed and remained so through time. These results highlight the need for policies that account for the differential care needs and caregiver profiles of men and women in order to offer targetted and appropriate support.

Continuity of physician care over the last year of life for different cause-of-death categories: a retrospective population-based study.

BACKGROUND: The mix of care provided by family physicians, specialists and palliative care physicians can vary by the illnesses leading to death, which may result in disruptions of continuity of care at the end of life. We measured continuity of outpatient physician care in the last year of life across differing causes of death and assessed factors associated with higher continuity. METHODS: We conducted a retrospective descriptive study of adults who died in Ontario between 2013 and 2018, using linked provincial health administrative data. We calculated 3 measures of continuity (usual provider, Bice-Boxerman and sequential continuity), which range from 0 to 1, from outpatient physician visits over the last year of life for terminal illness, organ failure, frailty, sudden death and other causes of death. We used multivariable logistic regression models to evaluate associations between characteristics and a continuity score of 0.5 or greater. RESULTS: Among the 417 628 decedents, we found that mean usual provider, Bice-Boxerman and sequential continuity indices were 0.37, 0.30 and 0.37, respectively, with continuity being the lowest for those with terminal illness (0.27, 0.23 and 0.33, respectively). Higher number of comorbidities, higher neighbourhood income quintile and all non-sudden death categories were associated with lower continuity. INTERPRETATION: We found that continuity of physician care in the last year of life was low, especially in those with cancer. Further research is needed to validate measures of continuity against end-of-life health care outcomes.

Virtual home-based palliative care during COVID-19: A qualitative exploration of the patient, caregiver, and healthcare provider experience.

BACKGROUND: Due to the COVID-19 pandemic, many community palliative healthcare providers shifted from providing care in a patient's home to providing almost exclusively virtual palliative care, or a combination of in-person and virtual care. Research on virtual palliative care is thus needed to provide evidence-based recommendations aiming to enhance the delivery of palliative care during and beyond the pandemic. AIM: To explore the experiences and perceptions of community palliative care providers, patients and caregivers who delivered or received virtual palliative care as a component of home-based palliative care during the COVID-19 pandemic. DESIGN: Qualitative study using phone and video-based semi-structured interviews. Data were analyzed using thematic analysis. SETTING/PARTICIPANTS: A total of 37 participants, including community palliative care patients/caregivers (n = 19) and healthcare providers (n = 18) recruited from sites in Ottawa and Toronto, Ontario, Canada. RESULTS: Overall, participants preferred in-person palliative care compared to virtual care, but suggested virtual care could be a useful supplement to in-person care. The findings are presented in three main themes: (1) Impact of COVID-19 pandemic on community palliative care services; (2) Factors influencing transition from exclusively virtual model of care back to a blended model of care; and (3) Recommended uses and implementation of virtual palliative care. CONCLUSIONS: Incorporating virtual palliative care into healthcare provider practice models (blended care models) may be the ideal model of care and standard practice moving forward beyond the COVID-19 pandemic, which has important implications toward organization and delivery of community palliative care services and funding of healthcare providers.