Most Canadians with dementia die in long-term care (LTC) facilities. No data are routinely collected in Canada on the quality of end-of-life care provided to this vulnerable population, leading to significant knowledge gaps. The Quebec Observatory on End-of-Life Care for People with Dementia was created to address these gaps. The Observatory is a research infrastructure designed to support the collection of data needed to better understand, and subsequently enhance, care quality for residents dying with dementia. This article reports on the main steps involved in setting up the Observatory, as well as a pilot study that involved 172 residents with dementia who died between 2016 and 2018 in one of 13 participating facilities. It describes the data gathered, methodological changes that were made along the way, feedback from participating facilities, and future developments of the Observatory.

As they near the end of life, long term care (LTC) residents often experience unmet needs and unnecessary hospital transfers, a reflection of suboptimal advance care planning (ACP). We applied the knowledge-to-action framework to identify shared barriers and solutions to ultimately improve the process of ACP and improve end-of-life care for LTC residents. We held a 1-day workshop for LTC residents, families, directors/administrators, ethicists, and clinicians from Manitoba, Alberta, and Ontario. The workshop aimed to identify: (1) shared understandings of ACP, (2) barriers to respecting resident wishes, and (3) solutions to better respect resident wishes. Plenary and group sessions were recorded and thematic analysis was performed. We identified four themes: (1) differing provincial frameworks, (2) shared challenges, (3) knowledge products, and 4) ongoing ACP. Theme 2 had four subthemes: (i) lacking clarity on substitute decision maker (SDM) identity, (ii) lacking clarity on the SDM role, (iii) failing to share sufficient information when residents formulate care wishes, and (iv) failing to communicate during a health crisis. These results have informed the development of a standardized ACP intervention currently being evaluated in a randomized trial in three Canadian provinces.

The purpose of this study was to analyse the consistency and extent of palliative content across high-level guiding documents related to the care of persons residing in Canadian long-term care homes. A systematic search was conducted examining documents at the national level and across five provinces (Alberta, Ontario, Saskatchewan, Manitoba, and Quebec). Twenty-five documents were selected based on inclusion criteria from 273 documents identified in the systematic search. The majority of these documents were created nationally (48%) or in Ontario (28%). Documents varied in palliative topics discussed, and long-term care was discussed minimally. A minimal number of palliative care guiding documents were found. Long-term care specific documents were absent, and all documents lacked consistency on palliative topics. It is imperative that palliative principles are present and consistent in high-level documents in order to improve the quality of life and care for long-term care residents across Canada.

Medical issues facing the aging population are of growing concern with consequences for patients and their caregivers. This study determined the indirect and out-of-pocket costs incurred by the caregivers of elderly patients in Canadian Intensive Care Units (ICUs). Primary family caregivers were surveyed capturing out-of-pocket costs, hours of work, and hours of leisure forgone in providing patient care while the patient was in the ICU. Total costs of care per month were reported across caregiver sex, age, and geographic region. Average out-of-pocket costs were $791 (2016 Canadian dollars) in the first month of ICU care. The mean total cost to family caregivers per patient was $162 per day. Male primary caregivers had higher mean out-of-pocket costs than female caregivers. Subsidization programs covering expenses such as travel, meals, accommodation, and parking are needed to support family caregivers of elderly ICU patients who are incurring considerable out-of-pocket costs.

Canada is experiencing population aging, and given the heterogeneity of older adults, there is increasing diversity in late life. The purpose of this study was to help fill the research gaps on LGBT aging and end-of-life. Through focus groups, we sought to better understand the lived experience of older LGBT individuals and to examine their concerns associated with end-of-life. Our analysis highlights the idea that identifying as LGBT matters when it comes to aging and end-of-life care. In particular, gender identity and sexual orientation matter when it comes to social connections, in the expectations individuals have for their own care, and in the unique fear related to staying out of the closet and maintaining identity throughout aging and end-of-life. This study underscores the need to consider gender identity and sexual orientation at end-of-life. In particular, recognition of intersectionality and social locations is crucial to facilitating positive aging experiences and end-of-life care.

This study aimed to (1) explore how palliative care in long-term care (LTC) addresses the tensions associated with caring for the living and dying within one care community, and (2) to inform how palliative care practices may be improved to better address the needs of all residents living and dying in LTC as well as those of the families and support staff. This article reports findings from 19 focus groups and 117 participants. Study findings reveal that LTC home staff, resident, and family perspectives of end-of-life comfort applied to those who were actively dying and to their families. Our findings further suggest that eliciting residents’ perceptions of end-of-life comfort, sharing information about a fellow resident’s death more personally, and ensuring that residents, families, and staff can constructively participate in providing comfort care to dying residents could extend the purview of end-of-life comfort and support expanded integration of palliative principles within LTC.

We used a web-based mixed methods survey (HowsYourHealth – Frail) to explore the health of frail older (78% age 80 or older) adults enrolled in a home-based primary care program in Vancouver, Canada. Sixty per cent of eligible respondents participated, representing over one quarter (92/350, 26.2%) of all individuals receiving the service. Despite high levels of co-morbidity and functional dependence, 50 per cent rated their health as good, very good, or excellent. Adjusted odds ratios for positive self-rated health were 7.50, 95 per cent CI [1.09, 51.81] and 4.85, 95 per cent CI [1.02, 22.95] for absence of bothersome symptoms and being able to talk to family or friends respectively. Narrative responses to questions about end of life and living with illness are also described. Results suggest that greater focus on symptom management, and supporting social contact, may improve frail seniors’ health.

Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.

A successful aging (SA) index was captured in a longitudinal population-based cohort study of individuals aged 75 and older and examined longitudinally using growth mixture modelling (GMM) to identify groups with similar trajectories using decedents’ (n = 1,015) last completed interview and up to four previous data collection waves before death. GMM identified a three-class model. Classes were high-functioning, no decline (HN); high-functioning, gradual decline (HG); and low-functioning, steep decline (LS). HN class individuals were significantly younger at death (p < 0.001) and at last interview (p < 0.001), consisted of more men (p < 0.001), and more likely to be married (p < 0.001) compared to HG and LS class individuals. These results demonstrate the different ways in which individuals can experience successful aging at the end of life. This study provides the framework for future research into life-course processes of aging, with important implications for policy and practice.

The End-Stage Renal Disease population is aging. Considering that hemodialysis is a treatment that maintains and prolongs life, this descriptive-comparative study looks at the perceptions of patients according to age group -<65 years, n=121 and ≥65 years, n=123, as it pertains to dialysis treatment cessation and life-sustaining treatments. Results: Older patients are more indecisive as to what dialysis treatment cessation may actually represent for them (p=0,01). They expressed a greater need for support from the health care team if they decided to stop dialysis treatments (p=0,02); a greater involvement from the physician (p=0,04); and, in the event patients could not take part in end-of-life decision-making, they would give priority to the wishes of loved ones instead of their own wishes (p=0,01). Conclusion: Advanced care planning is necessary to demystify hemodialysis withdrawal and to support patients and their loved ones through this process.

Hospitalization of nursing home residents can be futile as well as costly, and now evidence indicates that treating nursing home residents in place produces better outcomes for some conditions. We examined facility organizational characteristics that previous research showed are associated with potentially avoidable hospital transfers and with better care quality. Accordingly, we conducted a cross-sectional survey of nursing home directors of care in Vancouver Coastal Health, a large health region in British Columbia. The survey addressed staffing levels and organization, physician access, end-of-life care, and factors influencing facility-to-hospital transfers. Many of the modifiable organizational characteristics associated in the literature with potentially avoidable hospital transfers and better care quality are present in nursing homes in British Columbia. However, their presence is not universal, and some features, especially the organization of physician care and end-of-life planning and services, are particularly lacking.

Data from the Survey on Ageing and Independence are employed to test the relationship between stress, integration in close family and friend networks, and well-being with a particular emphasis on parent status. The dependent variables used in this analysis are, whether individuals have a close family member or a close friend, the number of reported close relatives and friends, life stress, and the affect balance scale. It is hypothesized that the zero order relationship often found between parent status and well-being may be due to (1) a fundamental difference in the social support experiences of older parents and older childless individuals, (2) different levels of stress among these groups, or (3) the potential of friends to be of greater importance in assuring well-being in older age than family. Results show that childless persons are less likely than parents to have at least one close family member and they have fewer close relatives. No parent status differences are found regarding the likelihood of having a close friend or in the number of close friends individuals have. Compared to parents, childless individuals experience less life stress and similar levels of well-being. Finally, the nature of the stress-support-well-being relationship appears to be the same regardless of parent status.

The vast majority of the 220,000 Canadians who die each year, principally of old age and progressive ill health, do not have access to specialized hospice or palliative care. Hospice and palliative care programs are unevenly distributed across Canada, with existing programs limited in capacity and services varying considerably across programs. End-of-life (EOL) care is defined as “The services that may be needed by dying persons and their families or friends in the last year of life, as well as bereavement services following death.” Although some health and social services may be available, most dying Canadians are in the difficult position of not having ready access to a full range of services that could ease their final days of life. Most are thus at risk of uncoordinated and potentially inadequate EOL care. Among all persons, dying persons are arguably the most vulnerable. The dying process is often difficult as a result of emotional and physical challenges. Although the loving support of family and friends for dying persons is irreplaceable, EOL care is an important public obligation. A synthesis research project was conducted to identify a best-practice EOL care model for Canada, one featuring coordinated or integrated EOL care. Through site visits, literature reviews, Web-based surveys, and a home care data analysis, four essential components for a best-practice integrated EOL care model for Canada were identified: (a) universality, (b) care coordination, (c) assured access to a broad range of basic and advanced EOL services, and (d) EOL care provision regardless of care setting. This model is offered as a guide for the development of EOL care services across Canada.

Steps involved in formalizing end-of-life care preferences and factors related to these steps are unclear in the literature. Using data from the third wave of the Canadian Study of Health and Aging (CSHA-3), we examined the relations between demographic and health predictors, on the one hand, and three outcomes, on the other (whether participants had thought about, discussed, or formalized their end-of-life preferences), and considered, as well, whether relations existed among the three outcomes. Canadian region of residence, female gender, and more years of education predicted having thought about preferences; region of residence, female gender, and lack of cognitive impairment predicted discussion of preferences; and region of residence and not being married predicted whether formal documents were in place. Ontario residents were most likely to have thought about, discussed, and formalized their preferences, whereas Atlantic residents were least likely to. Finally, having thought about preferences was associated with discussion, and having thought about and having discussed preferences were each associated with formalization of preferences. These findings are in keeping with the position that Advance Directives (AD) execution is a multi-stage process. A better understanding of this process may prove useful for the development of interventions to promote planning for end-of-life care.