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Researching a Best-Practice End-of-Life Care Model for Canada*

Published online by Cambridge University Press:  31 March 2010

Donna M. Wilson ,
Stephen Birch ,
Sam Sheps ,
Roger Thomas ,
Christopher Justice  and
Rod MacLeod
Donna M. Wilson*
Affiliation:
Faculty of Nursing, University of Alberta
Stephen Birch
Affiliation:
Centre for Health Economics and Policy Analysis, McMaster University
Sam Sheps
Affiliation:
Western Regional Training Centre for Health Services Research Faculty of Medicine, University of British Columbia
Roger Thomas
Affiliation:
Department of Family Medicine, Faculty of Medicine, University of Calgary
Christopher Justice
Affiliation:
Centre for Leadership in Learning, McMaster University Department of Public Health Sciences, University of Toronto
Rod MacLeod
Affiliation:
School of Population Health, University of Aukland
*
Requests for offprints should be sent to:/Les demandes de tirés-à-part doivent être adressées à: Donna M. Wilson, R.N., Ph.D., Caritas Nurse Scientist and Professor, Faculty of Nursing, Third Floor Clinical Sciences Building, University of Alberta, Edmonton, Alberta T6G 2G3, (donna.wilson@ualberta.ca)
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Abstract

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.

Résumé

De nos jours, la majorité des 220 000 Canadiens qui meurent chaque année, principalement de vieillesse ou des suites de problèmes de santé dégénératifs, n'ont pas accès à des centres de soins palliatifs ou spécialisés en fin de vie. Les programmes de soins palliatifs et d'hospices sont inégalement répartis au Canada, la plupart n'ont qu'une faible capacité de services, et ces services varient considérablement d'un programme à l'autre. Les services de fin de vie sont « les services qui permettent aux familles et aux amis d'aider une personne en phase terminale à vivre ses dernières semaines, ainsi que des services de soutien aux personnes en deuil. » Bien que des services de santé et des services sociaux soient disponibles, la plupart des Canadiens en phase terminale n'ont pas facilement accès à un ensemble complet de services qui pourraient les aider à traverser cette période difficile. La plupart risquent donc d'être soumis en fin de vie à des soins non coordonnés et potentiellement inadéquats. Les personnes en phase terminale sont les plus vulnérables de toutes. Le passage de la vie à la mort est souvent difficile en raison des défis émotionnels et physiques que cela engendre. Bien que le soutien des parents et des amis soit irremplaçable, les soins de fin de vie constituent une obligation publique importante.

Un projet de recherche de synthèse a été mené dans le but de déterminer un modèle des meilleures pratiques de prestation de soins de fin de vie qui favoriserait la coordination et l'intégration de ces soins au Canada. Par le truchement de visites, d'analyses documentaires, de sondages sur le web, et d'une analyse des données sur les soins à domicile, quatre éléments essentiels d'un modèle intégrant les meilleures pratiques en matière de soins en fin de vie au Canada ont été dégagés: 1) universalité, 2) coordination des soins, 3) accès assuré à un vaste éventail de soins de vie de base et spécialisés, et 4) assurance de services de fin de vie peu importe où les soins sont prodigués. Le présent modèle est proposé comme guide pour l'établissement de soins intégrés de fin de vie au Canada.

Keywords

vieillissementmodèlecadremourirpalliatiffin de vieservices de soins de santéagingmodelframeworkdyingpalliativeend-of-lifehealthcare services
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 27 , Issue 4 , Winter/Hiver 2008 , pp. 319 - 330
Copyright
Copyright © Canadian Association on Gerontology 2008

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Footnotes

*

This research was funded by Health Canada (#6795–15–2002/4780004). The interpretations and conclusions contained herein are those of the researchers, and do not necessarily represent the views of the Government of Canada nor Health Canada. Neither the Government of Canada nor Health Canada express an opinion in relation to this study.

Home care data were provided by Alberta Health and Wellness. The interpretation of these data and conclusions contained herein are those of the researchers and do not necessarily represent the views of the Government of Alberta nor Alberta Health and Wellness. Neither the Government of Alberta nor Alberta Health and Wellness express any opinion in relation to this study.

Nine additional researchers contributed actively to this research study: Margaret Brown (Hawke Institute, Australia), Dr. Katherine Froggatt (University of Sheffield, UK), Dr. Janice Kinch (University of Calgary, AB, Canada), Karen Leibovici (City of Edmonton, Edmonton, AB, Canada), Dr. Margaret MacAdam (Toronto, ON, Canada), Dr. Tom Noseworthy (University of Calgary), Pam Reid (Nova Scotia Community College, Halifax, NS, Canada), David Shepherd (County Durham, UK), and Dr. Corrine Truman (Capital Health Authority, AB, Canada).

University of Alberta Research Ethics Committee approval was obtained prior to all specific research studies that involved human beings (i.e., site visits, Web-based questionnaires, and home care data analysis).

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