Original Title: État des pratiques - Portrait de l’utilisation des soins et des services de soutien à domicile par les personnes en fin de vie au Québec, 2013 à 2018

Authors' objectives: Population aging and the increased prevalence of disabilities and accompanying comorbidities have led several countries in recent years to consider providing care in people’s living environments as a promising alternative, especially when these individuals are at the end-stages of their lives and this form of service and care is aligned with their values and preferences. Over the past two decades, a sustained reflection and a number of studies have focused on the provision of palliative and end-of-life care (PEoLC) in Québec. While there is a growing desire to offer PEoLC in home settings, certain issues still persist, including, inter alia, equal access for the various client types or regions. Greater knowledge of the home support services available to people at the end-stages of life – and such support includes PEoLC – is required to fully understand the current situation and potentially identify those elements that need to be improved. It is in this context, and at the request of the Commission sur les soins de fin de vie (CSFV), that INESSS undertook to develop a portrait of the use of home-based care and services by individuals who may have received PEoLC in the three years preceding their deaths. Data derived from the provincial clinical administrative databases (CADBs) was used.

Authors' results and conclusions: RESULTS: Between 2016 and 2018, 193,153 people died in Québec. Of these, 135,357 (70%) potentially received PEoLC, and, of that number, 97,119 (72%) actually did receive home support services in the three years prior to their deaths. The profile of these 97,119 individuals was very similar to that of the 135,357 people who may have received PEoLC. The main findings from the CADB data analysis were as follows: • The use of home support services varied depending on the end-of-life trajectory, with people who died of cancer having the highest prevalence (77%). • The use of home support services generally increased with age; however, this prevalence rose most notably between groups of individuals who died of organ failure aged 18-39 and groups aged 90 or older. • With some exceptions, the prevalence of home support use was slightly higher in the regions than in the major urban centres of Capitale-Nationale and Montréal. • In the case of end-of-life trajectories involving organ failure and cancer, the annual proportion of people receiving home support services increased as the year of their deaths approached. • Home support was delivered primarily in “independent residences.” A large proportion of individuals with physical or cognitive frailty also received home support services in a private seniors’ residence (PSR). • The number of home support interventions increased overall from the third year prior to death to the last year of life; this increase was even more pronounced in the year preceding the deaths of people with cancer. • The majority of people who potentially have benefited fromPEoLC and who received home support had their interventions at home during the week (i.e., Monday to Friday). • Nearly two-thirds of those who received home support between 2016 and 2018 fell into the “loss of autonomy associated with aging” profile, and nearly 40% fitted into the “palliative care” profile. This may reflect a transition during the study period from one profile to another in the case of some individuals. People who died of cancer mostly received their services while they were assigned a profile of “palliative care”, and the care provided to those with organ failure or physical/cognitive frailty fell primarily into the "loss of autonomy associated with aging” profile. • The principal home support clinical interventions received by the majority of people who potentially have benefited from PEoLC consisted of regular nursing care and psychosocial services. Regular home care2 was offered to some 40% of those concerned. However, the home care and services provided by specialized nurse practitioners (SNPs) and physicians were difficult to trace in the I-CLSC database because most of these professionals do not document their interventions therein. Some 10% of individuals who potentially have benefited from PEoLC and who received home support services died in their homes – a proportion that appears to have remained relatively stable over the last two decades according to data published by the MSSS and the INSPQ. This proportion was lower in the case of people on the physical or cognitive frailty trajectory. • The deaths of individuals at the end of their lives occurred mainly in hospital settings. This was the case for the majority of those who died of cancer or organ failure. • Nearly 20% of people with cancer died neither in their homes nor in a health and social services network facility. Some of these deaths may have occurred in palliative care homes. CONCLUSION: The portrait provided in this report describes the use of home care and support services by all those who died between 2016 and 2018 and who were likely to be at the endstages of their lives. The portrait is retrospective in nature and is based on CADB data designed for management purposes. However, the information that could be derived from these banks had some limitations, particularly in the case of the I-CLSC data bank, which is less used for research and whose validity has not yet been confirmed. Since the definition of PEoLC still requires some clarification, the home interventions documented do not necessarily represent end-of-life care in the strict sense of the term. Even so, the scope of this initial portrait is sufficiently extensive to serve as a basis for further work on how to gain a greater understanding of PEoLC and make better use of these services in the home environments of people who are reaching the end of their lives. The work that went into developing this portrait has made it possible to open avenues of reflection in this area; these include standardizing the collection of relevant data, extending data collection to palliative care homes and residential and long-term care centres (CHSLDs), and making it easier to identify within the databases those people who are at the endstages of their lives as well as the PEoLC interventions used.

Authors' methods: To develop this initial portrait of home support services in Québec, INESSS conducted a retrospective cohort study among people aged 18 or older who potentially received PEoLC and who died between 2016 and 2018. The information was drawn from six digital files, including the Local Community Service Centre Integration File (I-CLSC). The chief cause of death for these individuals was a terminal illness (cancer)1, organ failure – such as heart or respiratory failure – or a condition known as physical or cognitive frailty, including dementia. Any given person included in the study figured in only one of these three end-of-life trajectories. Since there is no hard and fast definition of what constitutes PEoLC, the home support services documented included services offered mainly to individuals who were assigned a response profile corresponding to palliative care and loss of autonomy associated with aging. Four key variables were reviewed: the extent of home support services use during the last three years of life of those persons associated with one of the three major end-of-life trajectories identified; the setting in which home support services were delivered; the types of interventions delivered; and places of death of those receiving home support services. In parallel with the CADB data analysis, consultations were conducted with health professionals and some CSFV members as the project was being planned and during the analysis phase of the data collected.

Project Status: Completed

URL for project: https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/portrait-de-lutilisation-des-soins-et-des-services-de-soutien-a-domicile-par-les-personnes-en-fin-de-vie-au-quebec-2013-2018.html

Year Published: 2021

URL for published report: https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/portrait-de-lutilisation-des-soins-et-des-services-de-soutien-a-domicile-par-les-personnes-en-fin-de-vie-au-quebec-2013-2018.html

English language abstract: An English language summary is available

Publication Type: Other

Country: Canada

Province: Quebec

Organisation Name: Institut national d'excellence en sante et en services sociaux

Contact Address: L'Institut national d'excellence en sante et en services sociaux (INESSS) , 2021, avenue Union, bureau 10.083, Montreal, Quebec, Canada, H3A 2S9;Tel: 1+514-873-2563, Fax: 1+514-873-1369

Contact Name: demande@inesss.qc.ca

Contact Email: demande@inesss.qc.ca

Copyright: Gouvernement du Québec