Search

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.

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.

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 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.

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: Much end-of-life care is provided in hospital, yet little is known about the delivery of palliative care during end-of-life hospitalizations. Objectives: To characterize the level of palliative care involvement across hospitalizations in the last year of life. Methods: A population-based retrospective cohort study of adults in Ontario, Canada, who died between April 1, 2012, and March 31, 2017, and had at least one acute care hospitalization in their last year of life. Using linked administrative health data, we developed a hierarchy of inpatient palliative care involvement reflecting the degree to which care was delivered with palliative intent. This hierarchy was based on palliative care diagnosis and service provider codes on hospitalization records and physician claims. We examined variations in the level of palliative care involvement across key patient characteristics. Results: In the last year of life, 65.1% of hospitalizations had no indication of palliative care involvement, 16.7% had a low level of involvement, 13.5% had a medium level of involvement, and 4.7% had a high level of involvement. Most hospitalizations with palliative care involvement (85.6%) occurred in the two months before death. Compared to patients who received no inpatient palliative care, patients who received a high level of palliative care involvement tended to be younger, died of cancer, resided in urban or lower income neighborhoods, and had fewer chronic conditions. Discussion: While many hospitalizations occurred in the last year of life, the majority did not involve palliative care, and very few had a high level of palliative care involvement.

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.

Innovative models of collaborative palliative care are urgently needed to meet gaps in end-of-life care among people with heart failure. We sought to determine whether regionally organized, collaborative, home-based palliative care that involves cardiologists, primary care providers and palliative care specialists, and that uses shared decision-making to promote goal- and need-concordant care for patients with heart failure, was associated with a greater likelihood of patients dying at home than in hospital.We conducted a population-based matched cohort study of adults who died with chronic heart failure across 2 large health regions in Ontario, Canada, between 2013 and 2019. The primary outcome was location of death. Secondary outcomes included rates of health care use, including unplanned visits to the emergency department, hospital admissions, hospital lengths of stay, admissions to the intensive care unit, number of visits with primary care physicians or cardiologists, number of home visits by palliative care physicians or nurse practitioners, and number of days spent at home.Patients who received regionally organized, collaborative, home-based palliative care (Adoption of a model of regionally organized, collaborative, home-based palliative care that uses shared decision-making may improve end-of-life outcomes for people with chronic heart failure.

ObjectivesPrescribing of symptom management medications may reflect the quality of end-of-life care provided to nursing home residents who are nearing death. The objective of this study was to examine variations in the prescribing of end-of-life symptom management medications in nursing home residents in the last 14 days of life. ApproachThis was a retrospective cohort study of nursing home residents age 65+ who died in Ontario, Canada between January 2017 and February 2020. Through expert consultations, we compiled a list of medications used to manage common end-of-life symptoms. Using routinely collected health administrative data held at ICES, we linked resident data to prescription claims to identify whether residents were prescribed these medications in the last 14 days of life. We grouped nursing homes into quintiles according to the proportion of decedents in a home who received ≥1 prescription and examined variations in resident and facility characteristics across quintiles. ResultsThere were 55,029 deaths across 626 nursing homes. Overall, 64.8% of residents received at least one end-of-life symptom management medication. The proportion of dying residents who received ≥1 end-of-life medication ranged from 37.6% in quintile 1, 59.8% in quintile 2, 69.1% in quintile 3, 74.8% in quintile 4, and 82.9% in quintile 5. Opioids were the most commonly prescribed medications, with an average of 62.2% of residents receiving a prescription (35.9% to 81.2% across the quintiles). Nursing home residents that resided in homes in the lowest prescribing quintile were older and more likely to be Allophones (first language not English or French). Low prescribing homes were also larger, with a higher number of beds, and were more likely to be in rural areas. ConclusionThe observed variations in the prescribing of medications to manage end-of-life symptoms in nursing home residents raises concerns that some residents may have received inadequate end-of-life symptom management. Prescription data may provide an opportunity to rapidly evaluate the quality of end-of-life care in nursing homes at a population level.

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.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.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.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.

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 The HeartFull Collaborative is a regionally organized model of care which involves specialist palliative care and cardiology health care providers (HCPs) in a collaborative, home‐based palliative care approach for patients with advanced heart failure (AHF). We evaluated HCP perspectives of barriers and facilitators to providing coordinated palliative care for patients with AHF at home. Methods and Results We conducted a qualitative study with 17 HCPs (11 palliative care and 6 cardiology) who were involved in the HeartFull Collaborative from April 2013 to March 2020. Individual, semi‐structured interviews were held with each practitioner from November 2019 to March 2020. We used an interpretivist and inductive thematic analysis approach. We identified facilitators at 2 levels: (1) individual HCP level (on‐going professional education to expand competency) and (2) interpersonal level (shared care between specialties, effective communication within the care team). Ongoing barriers were identified at 2 levels: (1) individual HCP level (e.g. apprehension of cardiology practitioners to introduce palliative care) and (2) system level (e.g. lack of availability of personal support worker hours). Conclusions Our results suggest that a collaborative shared model of care delivery between palliative care and cardiology improves knowledge exchange, collaboration and communication between specialties, and leads to more comprehensive patient care. Addressing ongoing barriers will help improve care delivery. Findings emphasize the acceptability of the program from a provider perspective, which is encouraging for future implementation. Further research is needed to improve prognostication, assess patient and caregiver perspectives regarding this model of care, and assess the economic feasibility and impact of this model of care.

Due to poor access, health research rarely engages with stakeholders outside of academia. As a result, it has become imperative to find strategic and creative ways to engage the public. We undertoo...

Background For many patients, health care needs increase toward the end of life, but little is known about the extent of outpatient physician care during that time. The objective of this study was to describe the volume and mix of outpatient physician care over the last 12 months of life among patients dying with different end-of-life trajectories. Methods We conducted a retrospective descriptive study involving adults (aged ≥ 18 yr) who died in Ontario between 2013 and 2017, using linked provincial health administrative databases. Decedents were grouped into 5 mutually exclusive end-of-life trajectories (terminal illness, organ failure, frailty, sudden death and other). Over the last 12 months and 3 months of life, we examined the number of physician encounters, the number of unique physician specialties involved per patient and specialty of physician, the number of unique physicians involved per patient, the 5 most frequent types of specialties involved and the number of encounters that took place in the home; these patterns were examined by trajectory. Results Decedents (n = 359 559) had a median age of 78 (interquartile range 66-86) years. The mean number of outpatient physician encounters over the last year of life was 16.8 (standard deviation [SD] 13.7), of which 9.0 (SD 9.2) encounters were with family physicians. The mean number of encounters ranged from 11.6 (SD 10.4) in the frailty trajectory to 24.2 (SD 15.0) in the terminal illness trajectory across 3.1 (SD 2.0) to 4.9 (SD 2.1) unique specialties, respectively. In the last 3 months of life, the mean number of physician encounters was 6.8 (SD 6.4); a mean of 4.1 (SD 5.4) of these were with family physicians. Interpretation Multiple physicians are involved in outpatient care in the last 12 months of life for all end-of-life trajectories, with family physicians as the predominant specialty. Those who plan health care models of the end of life should consider support for family physicians as coordinators of patient care.

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: Research shows that access to palliative care can help patients avoid dying in hospital. However, access to palliative care services during the terminal hospitalization, specifically, h...

Literature on health-related quality of life (HRQOL) has focused on people living with chronic conditions, with less attention given to HRQOL among informal caregivers. We used cross-sectional dyadic data from both care recipients (CR) living with HIV and the person they identified as their primary informal (unpaid) caregiver (CG) to identify psychosocial and caregiving relationship factors (including, CG role ambivalence and caregiving-related stress) associated with CG HRQOL. We conducted confirmatory factor analysis and structural equation modeling testing. The results highlight interdependent effects of the CG-CR relationship and reveal pathways whereby relationship interactions positively and negatively impact CGs' HRQOL. Affiliative stigma, CG-CR communication, CRs' reciprocity of support and other psychosocial factors indirectly and differentially affected physical and mental HRQOL through effects on secondary stress and role ambivalence. Dyad-focused intervention on interpersonal communication and support exchange may improve HRQOL and resilience of CGs of vulnerable people living with HIV.

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.

Objective: To examine perceptions of facilitators and barriers to quality measurement and improvement in palliative care programs and differences by professional and leadership roles. Methods: We surveyed team members in diverse US and Canadian palliative care programs using a validated survey addressing teamwork and communication and constructs for educational support and training, leadership, infrastructure, and prioritization for quality measurement and improvement. We defined key facilitators as constructs rated ≥4 (agree) and key barriers as those ≤3 (disagree) on 1 to 5 scales. We conducted multivariable linear regressions for associations between key facilitators and barriers and (1) professional and (2) leadership roles, controlling for key program and respondent factors and clustering by program. Results: We surveyed 103 respondents in 11 programs; 45.6% were physicians and 50% had leadership roles. Key facilitators across sites included teamwork, communication, the implementation climate (or environment), and program focus on quality improvement. Key barriers included educational support and incentives, particularly for quality measurement, and quality improvement infrastructure such as strategies, systems, and skilled staff. In multivariable analyses, perceptions did not differ by leadership role, but physicians and nurse practitioners/nurses/physician assistants rated most constructs statistically significantly more negatively than other team members, especially for quality improvement (6 of the 7 key constructs). Conclusions: Although participants rated quality improvement focus and environment highly, key barriers included lack of infrastructure, especially for quality measurement. Building on these facilitators and measuring and addressing these barriers might help programs enhance palliative care quality initiatives’ acceptability, particularly for physicians and nurses.

While past studies investigated access to palliative care among marginalized groups, few assessed whether there are differences in clinical process indicators based on demographics among those receiving palliative care. We aimed to: describe demographics among patients receiving inpatient palliative care; and evaluate whether demographic variables are associated with differences in disposition (i.e., discharge location), length of stay (LOS), and timing of inpatient palliative care referral and consultation.Retrospective cohort study using electronic medical record data to study patients seen by inpatient palliative care at Mount Sinai Hospital in Toronto, Canada between April 2018 to March 2019. Primary outcome was disposition. Secondary outcomes were LOS, time from admission to palliative referral, and time from referral to consultation. We summarized quantitative data descriptively and used fisher exact tests to explore relationships between categorial variables. For continuous outcomes, we ran one-way ANOVA tests.A total of 187 patients were referred to palliative care and met inclusion criteria. Mean age was 68·8 and 55·6% were female. 46·7% were born in Canada, 58·2% were White and 78·4% preferred English communication. Variables significantly associated with disposition were: birth country (Inequalities in disposition, and how long it takes to refer to palliative care may exist. Further studies should focus on understanding the underlying practices that constructed, and maintained these inequalities in care.This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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.

ObjectivesWhen resources are strained during communicable disease outbreaks, novel palliative care interventions may be required to optimally support people who use substances with life-limiting illnesses. Therefore, we asked the question, ‘what is known about communicable disease outbreaks, palliative care and people who use substances?’, such as palliative care interventions that can improve the quality of life of patients with life-limiting illnesses.DesignWe conducted a scoping review that involved comprehensive searches in six bibliographic databases from inception to April 2021 (Medline ALL (Medline and Epub Ahead of Print and In-Process and Other Non-Indexed Citations), Embase Classic+Embase, Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trial, PsycInfo all from the OvidSP platform, Scopus from Elsevier) and grey literature searches. We included English and French records about people ≥18 years old with life-limiting illnesses who use substances during communicable disease outbreaks. We identified, summarised and presented the findings about palliative care interventions in figures, tables and narrative descriptions.ResultsWe identified 32 records about palliative care interventions for people who use substances during communicable disease outbreaks. The majority focused on palliative care for people who use substances with AIDS during HIV epidemics (n=27, 84.4%), and approximately half were published in the USA (n=15, 46.9%). Most common substances used were alcohol (n=18, 56.3%), opioids (n=14, 43.8%) and cocaine (n=10, 31.3%). Four groups of palliative care interventions were identified: (1) symptom management (n=20, 62.5%), (2) psychosocial support (n=15, 46.9%), (3) advance care planning (n=8, 25.0%) and (4) healthcare provider training (n=6, 18.8%).ConclusionsBeyond studies on HIV epidemics, there is limited knowledge about palliative care interventions for people who use substances during communicable disease outbreaks. Research and guidance are needed about how best to provide palliative care to this population with complex needs including in resource-limited countries.ProtocolBuchman DZ, Ding P, Lo S, et al. Palliative care for people who use substances during communicable disease epidemics and pandemics. BMJ Open 2021; 11: e053124

Purpose: To evaluate the reliability, content validity, and variation among sites of a survey to assess facilitators and barriers to quality measurement and improvement in palliative care programs. Methods: We surveyed a sample of diverse US and Canadian palliative care programs and conducted postcompletion discussion groups. The survey included constructs addressing educational support and training, communication, teamwork, leadership, and prioritization for quality measurement and improvement. We tested internal consistency reliability, described variation among sites, and reported descriptive feedback on content validity. Results: Of 103 respondents in 11 sites, the most common roles were attending physician (38.9%) and nurse practitioner, clinical nurse specialist, or physician assistant (16.5%). Internal consistency reliability was acceptable (Cronbach’s α = .70 to .99) for all but one construct. Results varied across sites by more than 1 point on the 1 to 5 scales between the 10th and 90th percentiles of sites for two constructs in recognition and focus on quality measurement (score range by site, 1.7 to 4.8), one construct in teamwork (score range, 3.1 to 4.6), and five constructs in quality improvement (score range, 1.8 to 4.6). In descriptive content validity evaluation, respondents described the survey as an opportunity for assessing quality initiatives and discussing potential improvements, particularly improvements in communication, training, and engagement of team members regarding program quality efforts. Conclusion: This survey to assess palliative care team perspectives on barriers and facilitators for quality measurement and improvement demonstrated reliability, content validity, and initial evidence of variation among sites. Our findings highlight how palliative care team members’ perspectives may be valuable to plan, evaluate, and monitor quality-of-care initiatives.

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.

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 Inpatient palliative care is associated with lower inpatient costs; however, this has yet to be studied using a more nuanced, multi-tiered measure of inpatient palliative care and a national population-representative dataset. Using a population-based cohort of Canadians who died in hospital, our objectives were to: describe patients’ receipt of palliative care and active interventions in their terminal hospitalization; and examine the relationship between inpatient palliative care and hospitalization costs. Methods Retrospective cohort study using data from the Discharge Abstract Database in Canada between fiscal years 2012 and 2015. The cohort were Canadian adults (age ≥ 18 years) who died in hospital between April 1st, 2012 and March 31st, 2015 (N = 250,640). The exposure was level of palliative care involvement defined as: medium-high, low, or no palliative care. The main measure was acute care costs calculated using resource intensity weights multiplied by the cost of standard hospital stay, represented in 2014 Canadian dollars (CAD). Descriptive statistics were represented as median (IQR), and n(%). We modelled cost as a function of palliative care using a gamma generalized estimating equation (GEE) model, accounting for clustering by hospital. Results There were 250,640 adults who died in hospital. Mean age was 76 (SD 14), 47% were female. The most common comorbidities were: metastatic cancer (21%), heart failure (21%), and chronic obstructive pulmonary disease (16%). Of the decedents, 95,450 (38%) had no palliative care involvement, 98,849 (38%) received low involvement, and 60,341 (24%) received medium to high involvement. Controlling for age, sex, province and predicted hospital mortality risk at admission, the cost per day of a terminal hospitalization was: $1359 (95% CI 1323: 1397) (no involvement), $1175 (95% CI 1146: 1206) (low involvement), and $744 (95% CI 728: 760) (medium-high involvement). Conclusions Increased involvement of palliative care was associated with lower costs. Future research should explore whether this relationship holds for non-terminal hospitalizations, and whether palliative care in other settings impacts inpatient costs.

Context Hospital-to-home transitions, particularly at the end of life, can be challenging for patients and their family caregivers. Therefore, there is a need to better understand gaps in expectations and experiences of these transitions. Theory can inform the creation of an intervention aimed at improving the hospital-to-home transition. Objectives 1) Explore patients’ and caregivers’ expectations and subsequent experiences of the hospital-to-home transition while receiving palliative care, and 2) build a substantive grounded theory to enhance the understanding of hospital-to-home transitions from the patient and caregiver perspective. Methods Longitudinal, prospective qualitative study with semistructured interviews at hospital discharge and three to four weeks after discharge home. We recruited adults receiving inpatient palliative care who were being discharged to home-based palliative care, and their family caregivers from two academic health centers in Toronto, Canada. Thirty-nine participants: 18 patients, 7 caregivers, and 7 patient-caregiver dyads participated. We conducted 52 interviews. We conducted a grounded theory qualitative study. Results Through examining the expectations and subsequent experiences of the transition, and exploring the gaps between them, we identified various transitions needs: health and well-being needs, and practical needs (i.e., transportation, setting up the home for care, care providers in the home). Several enablers and disablers modified the likelihood of needs being met (e.g., caregiver role, education on symptom management, uncertainty, financial resources). Conclusion Our substantive grounded theory highlighted potentially measurable constructs that can be further tested. Future interventions should target the enablers/disablers to ensure health and well-being and practical needs are met in the transition.

Background Towards the end of life, use of opioid analgesics becomes more common in patients to control pain and improve quality of life. While pain medication may help manage pain, unwanted cognitive side effects are frequently noted. This balancing act presents a trade-off for patients between pain relief and adverse effects, where the desire to relieve pain must be evaluated against the desire to maintain cognitive clarity and may represent a difficult decision for patients receiving palliative care. Our goal was to understand how patients’ decision making about pain medications balances the pain relief from those medications against the cognitive decline often associated with them. Methods We conducted qualitative semi-structured interviews with patients receiving home-based palliative care from a program in Toronto, Canada. Interview recordings were transcribed and analyzed using thematic analysis. Results Thirty-one interviews were conducted. Some patients preferred cognitive preservation over pain management because of a sense that cognition is central to their identity, the desire to maintain lucidity, a desire to continue participating in work or hobbies, and fear of addiction. Conversely, some patients preferred pain management over cognitive preservation because of a desire to avoid suffering, an inability to sleep without medications, or an acceptance of some cognitive compromise. A few patients attempted to find balance through tapering drugs, limiting their use of breakthrough analgesic doses, or using alternative strategies. Conclusions Decision making around pain and pain management is a highly preference-sensitive process—with no clear right or wrong decisions, only the preferences of each patient. The findings from this study may influence the design of future patient-facing decision aids around pain management. Future studies should pilot interventions to better assist patients with this decision.

Background A minority of individuals use a large portion of health system resources, incurring considerable costs, especially in acute-care hospitals where a significant proportion of deaths occur. We sought to describe and contrast the characteristics, acute-care use and cost in the last year of life among high users and non-high users who died in hospitals across Canada. Methods We conducted a population-based retrospective-cohort study of Canadian adults aged ≥18 who died in hospitals across Canada between fiscal years 2011/12–2014/15. High users were defined as patients within the top 10% of highest cumulative acute-care costs in each fiscal year. Patients were categorized as: persistent high users (high-cost in death year and year prior), non-persistent high users (high-cost in death year only) and non-high users (never high-cost). Discharge abstracts were used to measure characteristics and acute-care use, including number of hospitalizations, admissions to intensive-care-unit (ICU), and alternate-level-of-care (ALC). Results We identified 191,310 decedents, among which 6% were persistent high users, 41% were non-persistent high users, and 46% were non-high users. A larger proportion of high users were male, younger, and had multimorbidity than non-high users. In the last year of life, persistent high users had multiple hospitalizations more often than other groups. Twenty-eight percent of persistent high users had ≥2 ICU admissions, compared to 8% of non-persistent high users and only 1% of non-high users. Eleven percent of persistent high users had ≥2 ALC admissions, compared to only 2% of non-persistent high users and Conclusions High users – persistent and non-persistent – are medically complex and use a disproportionate amount of acute-care resources at the end of life. A greater understanding of the characteristics and circumstances that lead to persistently high use of inpatient services may help inform strategies to prevent hospitalizations and off-set current healthcare costs while improving patient outcomes.

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]; I(2) = 3%), less hospitalization (14 trials [n = 3706]; 38% vs 42%; odds ratio, 0.80 [95% CI, 0.65-0.99]; I(2) = 41%), and modestly lower symptom burden (11 trials [n = 2598]; pooled standardized mean difference (SMD), −0.12; [95% CI, −0.20 to −0.03]; I(2) = 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]; I(2) = 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]; I(2) = 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.

Context Continuity of care is important at improving the patient experience and reducing unnecessary hospitalizations when transitioning across care settings, especially at the end of life. Objective To explore patient and caregiver understanding and valuation of “continuity of care” while transitioning from an in-hospital to a home-based palliative care team. Methods Longitudinal qualitative design using semistructured interviews conducted with patients and their caregivers before and after transitioning from hospital to palliative care at home. Interviews were audio-recorded and transcribed verbatim. Data were analyzed using thematic analysis within a postpositivist framework. Thirty-nine participants (18 patients, seven caregivers, and seven patient-caregiver dyads) were recruited from two acute care hospitals, wherein they received care from an inpatient palliative care consultation team and transitioned to home-based palliative care. Results Patients had a mean age of 68 years, 60% were female and 60% had a diagnosis of cancer. Caregivers had a mean age of 62 years and 50% were female. Participants perceived continuity of care to occur in three ways, depending on which stage they were at in their hospital-to-home transition. In hospital, continuity of care was experienced, as consistency of information exchanged between providers. During the transition from hospital to home, continuity of care was experienced as consistency of treatments. When receiving home-based palliative care, continuity of care was experienced as having consistent providers. Conclusion Patients' and their caregivers’ valuation of continuity of care was dependent on their stage of the hospital-to-home transition. Optimizing continuity of care requires an integrated network of providers with reliable information transfer and communication.

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.

BackgroundRandomised controlled trials (RCTs) of palliative care interventions are challenging to conduct and evaluate. Tools used to judge the quality of RCTs do not account for the complexities of conducting research in seriously ill populations and may artificially downgrade confidence in palliative care research.ObjectiveTo compare assessments from the Palliative Care Trial Assessment Tool (PCTAT) and Cochrane Risk of Bias (RoB) tool.DesignReviewers assessed 43 RCTs using PCTAT and RoB. We compared assessments of each trial, assessed overall agreement (weighted kappa (Kw)) and examined (dis)agreement for comparable items. We assessed quality of life at 1–3 months among trials grouped according to RoB or PCTAT score (using meta-analysis) and whether RoB or quality improved over time (Cochran-Armitage trend test).ResultsOf 43 trials, those rated low RoB had a mean PCTAT score of 73 (SD 10); those rated high RoB had a mean PCTAT score of 56 (SD 14). Overall Kw was 0.33 (95% CI 0.19 to 0.42). Total agreement between comparable items was observed for 56% of trials (24/43) and total disagreement for 21% (8/43). The standardised mean difference in quality of life was statistically significant among RCTs with low RoB and high PCTAT, but not for those with medium/low PCTAT or high/unclear RoB. Quality of reporting improved over time, whereas RoB did not.ConclusionAlthough there was fair agreement between tools, areas of disagreement/non-comparability suggest the tools capture different aspects of bias/quality. A specific tool to evaluate quality of palliative care trials may be warranted.

Background Medical assistance in dying (MAiD) is available in Canada for patients with grievous and irremediable medical conditions causing unbearable physical or mental suffering. It is not known how the ‘grievous and irremediable suffering’ criteria is being interpreted and documented by physicians. Methods Retrospective chart review of MAiD assessments from patients who submitted written MAiD requests to The Ottawa Hospital from June 1, 2016 to September 18, 2018. We used inductive thematic analysis to determine themes and subthemes. Results Our sample included 52 patients with a mean age of 70.5 years (SD 14), 24/52 (46%) were male. We identified 5 themes: 1) patient's context and history (e.g., past experiences, lack of disease modifying treatments), 2) physical symptoms (e.g., chronic pain, fatigue), 3) psychosocial symptoms (e.g., social isolation, or inability to communicate), 4) sense of control and 5) irreversibility. These themes were used to create a framework that describes the suffering of patients requesting MAiD. Patients who request MAiD describe how their disease causes suffering through physical symptoms, psychological symptoms and loss of control that is irreversible. These domains of suffering interact with their personal history and context leading to a reality that is unacceptable and irreversible. Conclusion MAiD assessors’ working definition of ‘grievous and irremediable suffering’ as documented in their assessments is consistent with the body of literature on this topic. MAiD assessments could be enhanced with more information about existential aspects of suffering and the impact of illness on meaningful life roles.

Objective To examine the association between family companion presence during pre-surgical visits to discuss major cancer surgery and patient-provider communication and satisfaction. Methods Secondary analysis of 61 pre-surgical visit recordings with eight surgical oncologists at an academic tertiary care hospital using the Roter Interaction Analysis System (RIAS). Surgeons, patients, and companions completed post-visit satisfaction questionnaires. Poisson and logistic regression models assessed differences in communication and satisfaction when companions were present vs. absent. Results There were 46 visits (75%) in which companions were present, and 15 (25%) in which companions were absent. Companion communication was largely emotional and facilitative, as measured by RIAS. Companion presence was associated with more surgeon talk (IRR 1.29, p = 0.006), and medical information-giving (IRR 1.41, p = 0.001). Companion presence was associated with less disclosure of lifestyle/psychosocial topics by patients (IRR 0.55, p = 0.037). In adjusted analyses, companions’ presence was associated with lower levels of patient-centeredness (IRR 0.77, p 0.004). There were no differences in patient or surgeon satisfaction based on companion presence. Conclusion Companions’ presence during pre-surgical visits was associated with patient-surgeon communication but was not associated with patient or surgeon satisfaction. Practice implications Future work is needed to develop interventions to enhance patient-companion-provider interactions in this setting.

ObjectiveVideo-based advanc care planning (ACP) tools have been studied in varied medical contexts; however, none have been developed for patients undergoing major surgery. Using a patient- and family-centredness approach, our objective was to implement human-centred design (HCD) to develop an ACP decision support video for patients and their family members when preparing for major surgery.Design and methodsThe study investigators partnered with surgical patients and their family members, surgeons and other health professionals to design an ACP decision support video using key HCD principles. Adapting Maguire’s HCD stages from computer science to the surgical context, while also incorporating Elwyn et al’s specifications for patient-oriented decision support tool development, we used a six-stage HCD process to develop the video: (1) plan HCD process; (2) specify where video will be used; (3) specify user and organisational requirements; (4) produce and test prototypes; (5) carry out user-based assessment; (6) field test with end users.ResultsOver 450 stakeholders were engaged in the development process contributing to setting objectives, applying for funding, providing feedback on the storyboard and iterations of the decision tool video. Throughout the HCD process, stakeholders’ opinions were compiled and conflicting approaches negotiated resulting in a tool that addressed stakeholders’ concerns.ConclusionsOur patient- and family-centred approach using HCD facilitated discussion and the ability to elicit and balance sometimes competing viewpoints. The early engagement of users and stakeholders throughout the development process may help to ensure tools address the stated needs of these individuals.Trial registration numberNCT02489799.

IntroductionCommunicable disease epidemics and pandemics magnify the health inequities experienced by marginalised populations. People who use substances suffer from high rates of morbidity and mortality and should be a priority to receive palliative care, yet they encounter many barriers to palliative care access. Given the pre-existing inequities to palliative care access for people with life-limiting illnesses who use substances, it is important to understand the impact of communicable disease epidemics and pandemics such as COVID-19 on this population.Methods and analysisWe will conduct a scoping review and report according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews reporting guidelines. We conducted a comprehensive literature search in seven bibliographical databases from the inception of each database to August 2020. We also performed a grey literature search to identify the publications not indexed in the bibliographical databases. All the searches will be rerun in April 2021 to retrieve recently published information because the COVID-19 pandemic is ongoing at the time of this writing. We will extract the quantitative data using a standardised data extraction form and summarise it using descriptive statistics. Additionally, we will conduct thematic qualitative analyses and present our findings as narrative summaries.Ethics and disseminationEthics approval is not required for a scoping review. We will disseminate our findings to healthcare providers and policymakers through professional networks, digital communications through social media platforms, conference presentations and publication in a scientific journal.

The palliative care approach for survivors begins with comprehensive assessment of communication and advance care planning needs and the physical, psychological and psychiatric, social, spiritual and religious and cultural domains. Communication and decision-making about difficult issues should include responding to emotions, planning for future communication needs, and considering reasons for miscommunication. Key palliative approaches to symptom management include addressing physical and psychosocial concerns, and the use of first-line nonpharmacologic approaches with the addition of medications as needed. Physicians should address advance care planning in older cancer survivors and those at significant risk of recurrence and mortality, ideally through ongoing conversations in a longitudinal care relationship.

OBJECTIVE: Among persons living with HIV/AIDS (PLHIV), approximately two-thirds report moderate to severe pain. Chronic pain can negatively affect PLHIVs’ health behaviors and outcomes by interfering with their reciprocity (mutual exchange) of support in their caregiving relationships, which has been found to be associated with PLHIVs’ antiretroviral (ART) adherence and viral suppression. SUBJECTS: Data were longitudinal (baseline, 6- and 12-month follow-up) from 383 PLHIV who were formerly or currently using drugs. RESULTS: Utilizing a longitudinal lagged fixed effects structural equation model, we found that never having pain in the past 6 months was predictive of increased reciprocity of support. Sub-analyses by care relationship type revealed never having pain was a significant predictor of greater reciprocity for sexual partner caregiving dyads, but not for kin or friend caregiving dyads. CONCLUSIONS: Our study emphasizes the importance of pain management in quality caregiving relationships characterized by reciprocity, which has consistently been found to be associated with stronger, more supportive caregiving relationships and better quality of life. Our findings suggest the importance of pain management intervention for improving reciprocity between vulnerable PLHIVs and their primary caregivers, especially between PLHIVs and caregivers who are current or former sexual partners.