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Background: Palliative care is well suited to support patients hospitalized with COVID-19, but integration into care has been variable and generally poor. Aim: To understand barriers and facilitators of palliative care integration for hospitalized patients with COVID-19. Methods: Internists, Intensivists and palliative care physicians completed semi-structured interviews about their experiences providing care to patients with COVID-19. Results were analysed using thematic analysis. Results: Twenty-three physicians (13 specialist palliative care, five intensivists, five general internists) were interviewed; mean ± SD age was 42 ± 11 years and 61% were female. Six thematic categories were described including: patient and family factors, palliative care knowledge, primary provider factors, COVID-19 specific factors, palliative care service factors, and leadership and culture factors. Patient and family factors included patient prognosis, characteristics that implied prognosis (i.e., age, etc.), and goals of care. Palliative care knowledge included confidence in primary palliative care skills, misperception that COVID-19 is not a ‘palliative diagnosis’, and the need to choose quantity or quality of life in COVID-19 management. Primary provider factors included available time, attitude, and reimbursement. COVID-19 specific factors were COVID-19 as an impetus to act, uncertain illness trajectory, treatments and outcomes, and infection control measures. Palliative care service factors were accessibility, adaptability, and previous successful relationships. Leadership and culture factors included government-mandated support, presence at COVID planning tables, and institutional and unit culture. Conclusion: The study findings highlight the need for leadership support for formal integrated models of palliative care for patients with COVID-19, a palliative care role in pandemic planning, and educational initiatives with primary palliative care providers.

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.

Background: Hospital-to-home transitions in palliative care are fraught with challenges. To assess transitions researchers have used patient reported outcome measures and qualitative data to give unique insights into a phenomenon. Few measures examine care setting transitions in palliative care, yet domains identified in other populations are likely relevant for patients receiving palliative care. Aim: Gain insight into how patients experience three domains, discharge readiness, transition quality, and discharge-coping, during hospital-to-home transitions. Design: Longitudinal, convergent parallel mixed methods study design with two data collection visits: in-hospital before and 3–4 weeks after discharge. Participants completed scales assessing discharge readiness, transition quality, and post discharge-coping. A qualitative interview was conducted at both visits. Data were analyzed separately and integrated using a merged transformative methodology, allowing us to compare and contrast the data. Setting and participants: Study was set in two tertiary hospitals in Toronto, Canada. Adult inpatients ( n = 25) and their caregivers ( n = 14) were eligible if they received a palliative care consultation and transitioned to home-based palliative care. Results: Results were organized aligning with the scales; finding low discharge readiness (5.8; IQR: 1.9), moderate transition quality (66.7; IQR: 33.33), and poor discharge-coping (5.0; IQR: 2.6), respectively. Positive transitions involved feeling well supported, managing medications, feeling well, and having healthcare needs met. Challenges in transitions were feeling unwell, confusion over medications, unclear healthcare responsibilities, and emotional distress. Conclusions: We identified aspects of these three domains that may be targeted to improve transitions through intervention development. Identified discrepancies between the data types should be considered for future research exploration.

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.

Background: Predictive cancer tools focus on survival; none predict severe symptoms. Aim: To develop and validate a model that predicts the risk for having low performance status and severe symptoms in cancer patients. Design: Retrospective, population-based, predictive study Setting/Participants: We linked administrative data from cancer patients from 2008 to 2015 in Ontario, Canada. Patients were randomly selected for model derivation (60%) and validation (40%). Using the derivation cohort, we developed a multivariable logistic regression model to predict the risk of an outcome at 6 months following diagnosis and recalculated after each of four annual survivor marks. Model performance was assessed using discrimination and calibration plots. Outcomes included low performance status (i.e. 10–30 on Palliative Performance Scale), severe pain, dyspnea, well-being, and depression (i.e. 7–10 on Edmonton Symptom Assessment System). Results: We identified 255,494 cancer patients (57% female; median age of 64; common cancers were breast (24%); and lung (13%)). At diagnosis, the predicted risk of having low performance status, severe pain, well-being, dyspnea, and depression in 6-months is 1%, 3%, 6%, 13%, and 4%, respectively for the reference case (i.e. male, lung cancer, stage I, no symptoms); the corresponding discrimination for each outcome model had high AUCs of 0.807, 0.713, 0.709, 0.790, and 0.723, respectively. Generally these covariates increased the outcome risk by >10% across all models: lung disease, dementia, diabetes; radiation treatment; hospital admission; pain; depression; transitional performance status; issues with appetite; or homecare. Conclusions: The model accurately predicted changing cancer risk for low performance status and severe symptoms over time.

Background: The COVID-19 pandemic has caused millions of deaths worldwide, leading to symptoms of grief among the bereaved. Neither the burden of severe grief nor its predictors are fully known within the context of the pandemic. Aim: To determine the prevalence and predictors of severe grief in family members who were bereaved early in the COVID-19 pandemic. Design: Prospective, matched cohort study. Setting/Participants: Family members of people who died in an acute hospital in Ottawa, Canada between November 1, 2019 and August 31, 2020. We matched relatives of patients who died of COVID (COVID +ve) with those who died of non-COVID illness either during wave 1 of the pandemic (COVID −ve) or immediately prior to its onset (pre-COVID). We abstracted decedents’ medical records, contacted family members >6 months post loss, and assessed grief symptoms using the Inventory of Complicated Grief-revised. Results: We abstracted data for 425 decedents (85 COVID +ve, 170 COVID −ve, and 170 pre-COVID), and 110 of 165 contacted family members (67%) consented to participate. Pre-COVID family members were physically present more in the last 48 h of life; the COVID +ve cohort were more present virtually. Overall, 35 family members (28.9%) had severe grief symptoms, and the prevalence was similar among the cohorts ( p = 0.91). Grief severity was not correlated with demographic factors, physical presence in the final 48 h of life, intubation, or relationship with the deceased. Conclusion: Severe grief is common among family members bereaved during the COVID-19 pandemic, regardless of the cause or circumstances of death, and even if their loss took place before the onset of the pandemic. This suggests that aspects of the pandemic itself contribute to severe grief, and factors that normally mitigate grief may not be as effective.

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.

Background:While most patients desire to die at home or in a community-based hospice, the transition from hospital to community settings often lacks streamlined coordination of care to ensure that adequate support is provided in the preferred care setting. The impact of hospital-based palliative care consultations on post-discharge care and outcomes has not been extensively studied.Aim:The aim of this study was to appraise available research on the impact of inpatient palliative care consultations on transitions from hospital to community settings.Design:We conducted a narrative systematic review and used the Effective Public Health Practice Project tool to appraise the quality of selected studies. Studies were included if they assessed the transition from hospital to community and examined outcomes after an inpatient palliative care consultation. A protocol for this study was registered and published in PROSPERO, Centre for Reviews and Dissemination (ID: CRD42018094924).Data sources:We searched for quantitative studies indexed in PubMED, CINAHL and Cochrane and published between 1 January 1 2000 and 11 March 2018.Results:Our search retrieved 2749 articles. From these, 123 articles were full-text screened and 15 studies met our inclusion criteria. Studies reported that inpatient palliative care consultations are associated with high rates of discharge to community settings, greater provision of services post-discharge, improved coordination and lower rates of rehospitalization.Conclusion:Existing evidence suggest that inpatient palliative care consultations have a positive impact on patient outcomes and transitions to the community, demonstrating the potential to improve patient quality of life and relieve overburdened acute care systems.

Background: Increasing involvement of palliative care generalists may improve access to palliative care. It is unknown, however, if their involvement with and without palliative care specialists are associated with different outcomes. Aim: To describe physician-based models of palliative care and their association with healthcare utilization outcomes including: emergency department visits, acute hospitalizations and intensive care unit (ICU) admissions in last 30 days of life; and, place of death. Design: Population-based retrospective cohort study using linked health administrative data. We used descriptive statistics to compare outcomes across three models (generalist-only palliative care; consultation palliative care, comprising of both generalist and specialist care; and specialist-only palliative care) and conducted a logistic regression for community death. Setting/participants: All adults aged 18–105 who died in Ontario, Canada between April 1, 2012 and March 31, 2017. Results: Of the 231,047 decedents who received palliative services, 40.3% received generalist, 32.3% consultation and 27.4% specialist palliative care. Across models, we noted minimal to modest variation for decedents with at least one emergency department visit (50%–59%), acute hospitalization (64%–69%) or ICU admission (7%–17%), as well as community death (36%–40%). In our adjusted analysis, receipt of a physician home visit was a stronger predictor for increased likelihood of community death (odds ratio 9.6, 95% confidence interval 9.4–9.8) than palliative care model (generalist vs consultation palliative care 2.0, 1.9–2.0). Conclusion: The generalist palliative care model achieved similar healthcare utilization outcomes as consultation and specialist models. Including a physician home visit component in each model may promote community death.

Background: Transitioning from the hospital to community is a vulnerable point in patients’ care trajectory, yet little is known about this experience within the context of palliative care. While some studies have examined the patient and caregiver experience, no study to date has synthesized the literature on the healthcare provider’s perspective on their role and experience facilitating these transitions. Aim: The purpose of this systematic review was to understand the experience and perspective of healthcare providers who support the transition of patients receiving palliative care as they move from acute care to community settings. Design: A qualitative systematic review of studies using thematic analysis as outlined by Thomas and Harden. PROSPERO: ID # CRD42018109662. Data Sources: We searched four databases: MEDLINE, Embase, ProQuest and CINAHL for studies published in English from 1995 until May 22, 2020. Four reviewers screened records using the following selection criteria: (1) peer-reviewed empirical study, (2) adult sample, (3) qualitative study design, (4) perspective of healthcare providers, and (5) included a component of transitions between acute to community-based palliative care. Study findings were analyzed using thematic analysis which entailed: (1) grouping the findings into recurring themes; (2) iteratively referring back to the articles to obtain nuances of the theme and quotations; and (3) defining and solidifying the themes. Results: Overall 1,791 studies were identified and 15 met inclusion criteria. Studies were published recently (>2015, n = 12, 80%) and used a range of qualitative methods including semi-structured interviews, focus groups, and field interviews. Three core themes related to the role and experience of healthcare providers were identified: (1) assessing and preparing for transition; (2) organizing and facilitating the logistics of transition; and (3) coordinating and collaborating transitional care across sectors. The majority of studies focused on the discharge process from acute care; there was a lack of studies exploring the experiences of healthcare providers in the community who receive patients from acute care and provide them with palliative care at home. Conclusion: This review identified studies from a range of relatively high-income countries that included a diverse sample of healthcare providers. The results indicate that healthcare providers experience multiple complex roles during the transition facilitation process, and future research should examine how to better assist clinicians in supporting these transitions within the context of palliative care provision.