Hostname: page-component-78c5997874-s2hrs Total loading time: 0 Render date: 2024-11-10T08:43:01.801Z Has data issue: false hasContentIssue false
  • English
  • Français

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)
Get access Rights & Permissions [Opens in a new window]

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

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

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).

References

Addington-Hall, J.M., & Karlsen, S. (1999). Age is not the crucial factor in determining how the palliative care needs of people who die from cancer differ from those of people who die from other causes. Journal of Palliative Care, 15(4), 13–19.Google Scholar
Anderson, H., Ward, C., Eardley, A., Gomm, S.A., Connolly, M., Coppinger, T., Corgie, D., Williams, J.L., & Makin, W.P. (2001). The concerns of patients under palliative care and a heart failure clinic are not being met. Palliative Medicine, 15(4), 279–286.CrossRefGoogle Scholar
Baker, N.T., & Seager, R.D. (1991). A comparison of the psychosocial needs of hospice patients with AIDS and those with other diagnoses. Hospice Journal, 7(1/2), 61–99.CrossRefGoogle Scholar
Brazil, K., Bedard, M., Willison, K., & Hode, M. (2003). Caregiving and its impact on families of the terminally ill. Aging & Mental Health, 7(5), 376–382.Google Scholar
Burge, F., Lawson, B., Johnston, G., & Cummings, I. (2003). Primary care continuity and location of death for those with cancer. Journal of Palliative Medicine, 6(6), 911–918.Google Scholar
Canada Health Act (1984). c. 6, s. 1.Google Scholar
Centeno, C., & Heller, K.S. (2002). Palliative care in Spain: An evolving model. Journal of Palliative Medicine, 3(5), 123–127.Google Scholar
Centeno, C., Hernansanz, S., Arnillas, P., Flores, L.A., Gomez, M., & Lara, F. (2000). The reality of palliative care in Spain. Palliative Medicine, 14(5), 387–394.Google Scholar
Centers for Medicare, & Medicaid Services (2005, July). Medicare hospice benefits. Retrieved 20 Nov. 2008 from http://www.medicare.gov/publications/Pubs/pdf/02154.pdf.Google Scholar
Cheek, P., Nikpour, L., & Nowlin, H.D. (2005). Aging well with smart technology. Nursing Administration Quarterly, 29(4), 329–338.CrossRefGoogle Scholar
Chow, E., Andersson, L., Wong, R., Vachon, M., Hruby, G., Franssen, E., Fung, K.W., Harth, T., Pach, B., Pope, J., Connolly, R., Schueller, T., Stefaniuk, K., Szumacher, E., Hayter, C., Finkelstein, J., & Danjoux, C. (2001). Patients with advanced cancer: A survey of the understanding of their illness and expectations from palliative radiotherapy for symptomatic metastases. Clinical Oncology (Royal College of Radiologists), 13(3), 204–208.Google Scholar
Cohen, S.R., & Leis, A. (2002). What determines the quality of life of terminally ill cancer patients from their own perspective? Journal of Palliative Care, 18(1), 48–58.CrossRefGoogle Scholar
Committee on Care at the End of Life (1997). Approaching death: Improving care at the end of life (Fields, M.J., & Cassel, C.K., Eds.). Approaching death: Improving care at the end of life. Washington, DC: National Academy Press.Google Scholar
Costello, J. (2001). Nursing older dying patients: findings from an ethnographic study of death and dying in elderly care wards. Journal of Advanced Nursing, 35(1), 59–68.Google Scholar
Cutcliffe, J.R. (2005). Adapt or adopt: Developing and transgressing the methodological boundaries of grounded theory. Journal of Advanced Nursing, 51(4), 421–428.Google Scholar
Evers, M.M., Meier, D.E., & Morrison, R.S. (2002). Assessing differences in care needs and service utilization in geriatric palliative care patients. Journal of Pain & Symptom Management, 23(5), 424–432.Google Scholar
Ferraz Gonçalves, J.A. (2001). A Portuguese palliative care unit. Supportive Care in Cancer, 9(1), 4–7.Google Scholar
Ferrell, B.R., Virani, R., Grant, M., Rhome, A., Malloy, P., Bednash, G., & Grimm, M. (2005). Evaluation of the End-of-Life Nursing Education Consortium Undergraduate Faculty Training Program. Journal of Palliative Medicine, 8(1), 107–114.CrossRefGoogle Scholar
Froggatt, K.A., Wilson, D.M., Justice, C., MacAdam, M., Leibovici, K., Kinch, J., Thomas, R., & Choi, J. (2006). End-of-life care in long-term care settings for older people: A literature review. International Journal of Older People's Nursing, 1, 45–50.Google Scholar
Gilmer, M.J. (2002). Pediatric palliative care: A family-centered model for critical care. Critical Care Nursing Clinics of North America, 14(2), 207–214.Google Scholar
Gotay, C.C. (1983). Models of terminal care: A review of the research literature. Clinical & Investigative Medicine – Medecine Clinique et Experimentale, 6(3), 131–141.Google Scholar
Grunfeld, E., Coyle, D., Whelan, T., Clinch, J., Reyno, L., Earle, C.C., Willan, A., Viola, R., Coristine, M., Janz, T., & Glossop, R. (2004). Family caregiver burden: Results of a longitudinal study of breast cancer patients and their principal caregivers. Canadian Medical Association Journal, 170(12), 1795–1801.Google Scholar
Health Canada (2005). Canadian strategy on palliative and end-of-life care: Progress report of the Coordinating Committee: December 2002 to March 2004. Ottawa: Author.Google Scholar
Hollander, M.J., Chappell, N.L., Prince, M.J., & Shapiro, E. (2007). Providing care and support for an aging population: Briefing notes on key policy issues. Healthcare Quarterly, 10(3), 34–45.Google Scholar
Ingleton, C., Skilbeck, J., & Clark, D. (2001). Needs assessment for palliative care: Three projects compared. Palliative Medicine, 15(5), 398–404.Google Scholar
Janssens, R.J., & ten Have, H.A. (2001). The concept of palliative care in the Netherlands. Palliative Medicine, 15(6), 481–486.CrossRefGoogle Scholar
Janssens, R., ten Have, H., Clark, D., Broeckaert, B., Gracia, D., Illhardt, F.J., Lantz, G., Privitera, S., & Schotsmans, P. (2001). Palliative care in Europe: Towards a more comprehensive understanding. European Journal of Palliative Care, 8(1), 20–23.Google Scholar
Johnston, P.G., & Daly, P.A. (2001). The NCI-Ireland consortium: A unique international partnership in cancer care. Oncologist, 6(5), 453–458.CrossRefGoogle Scholar
Kubler-Ross, E. (1973). On death and dying. London: Routledge.Google Scholar
Luczak, J. (1993). Palliative/hospice care in Poland. Palliative Medicine, 7(1), 67–75.Google Scholar
Maguire, P., Walsh, S., Jeacock, J., & Kingston, R. (1999). Physical and psychological needs of patients dying from colo-rectal cancer. Palliative Medicine, 13(1), 45–50.Google Scholar
Maltoni, M., Derni, S., Fabbri, L., & Sansoni, E. (2000). The specialist palliative care team in Forli, Italy. Supportive Care in Cancer, 8(5), 349–352.Google Scholar
Morasso, G., Capelli, M., Viterbori, P., Di Leo, S., Alberisio, A., Costantini, M., Fiore, M., Saccani, D., Zeitler, G., Verzolatto, N., Tirelli, W., Lazzari, L., Partinico, M., Borzoni, G., Savian, C., Obertino, E., Zotti, P., Ivaldi, G.P., & Henriquet, F. (1999). Psychological and symptom distress in terminal cancer patients with met and unmet needs. Journal of Pain & Symptom Management, 17(6), 402–409.CrossRefGoogle Scholar
Myers, K.G., & Trotman, I.F. (1996). Palliative care needs in a district general hospital: a survey of patients with cancer. European Journal of Cancer Care, 5(2), 116–121.CrossRefGoogle Scholar
O'Neill, W.M., O'Connor, P., & Latimer, E.J. (1992). Hospital palliative care services: three models in three countries. Journal of Pain & Symptom Management, 7(1), 406–413.Google Scholar
Raynes, N.V., Leach, J., Rawlings, B., & Bryson, R.J. (2000). Palliative care services: views of terminally ill patients. Palliative Medicine, 14(2), 159–160.Google Scholar
Ritchie, L. (2003). Adult day care: Northern perspectives. Public Health Nursing, 20(2), 120–131.Google Scholar
Romanow, R.J. (2002). Building on values. The future of health care in Canada. Commission on the Future of Health Care in Canada. Retrieved 12 Nov. 2008 from http://www.hc-sc.gc.ca/hcs-sss/alt_formats/hpb-dgps/pdf/hhr/romanow-eng.pdf.Google Scholar
Sbanotto, A., & Burnhill, R. (1998). Palliative care in Italy: The current situation. Supportive Care in Cancer, 6(5), 426–429.Google Scholar
Singer, P.A., Martin, D.K., & Kelner, M. (1999). Quality end-of-life care: patients perspectives [comment]. Journal of the American Medical Association, 282(2), 163–168.Google Scholar
Special Senate Committee on Euthanasia and Assisted Suicide (1995). Of life and death – final report. Ottawa: Minister of Supply and Services Canada.Google Scholar
Stead, S. (1998). Marie Curie Cancer Care. European Journal of Cancer Care, 7(4), 214–216.Google Scholar
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., McNeilly, M., McIntyre, L., & Tulsky, J.A. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. American Medical Association Journal, 284(19), 2476–2482.Google Scholar
Stevens, K.R. (2001). Systematic reviews: The heart of evidence-based practice. AACN Clinical Issues: Advanced Practice in Acute and Critical Care, 12(4), 529–538.Google Scholar
Subcommittee to update “Of Life and Death” (2000). Quality end-of-life care: The right of every Canadian. Ottawa: Standing Senate Committee on Social Affairs, Science and Technology.Google Scholar
Thomas, R., & Wilson, D. (2005). Randomized controlled trials of non-medical and non-surgical therapies for palliative care: A literature review. Alternative Medicine Review, 10(3), 204–215.Google Scholar
Thomas, R.E., Wilson, D., & Sheps, S. (2006). A literature review of randomised controlled trials of the organisation of care at the end of life. Canadian Journal on Aging, 25(3), 271–293.Google Scholar
Thomas, S.P., & Hrudey, S.E. (1997). Risk of death in Canada. What we know and how we know it. Edmonton, AB: University of Alberta Press.Google Scholar
United States Department of Health & Human Services (2008). Health care financing administration. Retrieved 20 Nov. 2008 from http://www.hhs.gov/about/opdivs/hcfa.html.Google Scholar
Vig, E.K., Davenport, N.A., & Pearlman, R.A. (2002). Good deaths, bad deaths, and preferences for the end of life: a qualitative study of geriatric outpatients. Journal of the American Geriatrics Society, 50(9), 1541–1548.CrossRefGoogle Scholar
Walsh, D. (2001). The Harry R. Horvitz Center for Palliative Medicine (1987–1999): Development of a novel comprehensive integrated program. American Journal of Hospice & Palliative Care, 19(4), 239–250.Google Scholar
Williams, A., Crooks, V.A., Stajduhar, K.I., Allan, D., & Cohen, S.R. (2006). Canada's Compassionate Care Benefit: views of family caregivers in chronic illness. International Journal of Palliative Nursing, 12(9), 438–445.Google Scholar
Wilson, D.M. (2002). The duration and degree of end-of-life dependency of home care clients and hospital inpatients. Applied Nursing Research, 15(2), 81–86.Google Scholar
Wilson, D.M., Justice, C., Sheps, S., Thomas, R., Reid, P., & Leibovici, K. (2006). Planning and providing end-of-life care in rural areas. Journal of Rural Health, 22(2), 174–181.Google Scholar
Wilson, D.M., Justice, C., Thomas, R., Sheps, S., McAdam, M., & Brown, M. (2005). End-of-life care volunteers: A systematic review of the literature. Health Services Management Research, 18, 244–257.Google Scholar
Wilson, D.M., Kinch, J., Justice, C., Thomas, R., Shepherd, D., & Froggatt, K. (2005). A review of the literature on hospice or palliative day care. European Journal of Palliative Care, 12(5), 198–202.Google Scholar
Wilson, D.M., MacAdam, M., Olson, K., Brown, M., Sheps, S., Kinch, J., Justice, C., Truman, T., Thomas, R., Noseworthy, T., Reid, P., & Leibovicie, K. (2003). Integrated end-of-life care: A Health Canada Synthesis Research Project (Final Report). Edmonton, AB: Author.Google Scholar
Wilson, D.M., Northcott, H.C., Truman, C.D., Smith, S.L., Anderson, M.C., Fainsinger, R.L., & Stingl, M.J. (2001). Location of death in Canada: A comparison of 20th-century hospital and nonhospital locations of death and corresponding population trends. Evaluation & the Health Professions, 24(4), 385–403.CrossRefGoogle Scholar
Wilson, D.M., & Ross Kerr, J.C. (1998). An exploration of Canadian social values relative to health care. American Journal of Health Behavior, 22(2), 120–129.Google Scholar
Wilson, D.M., Smith, S., Anderson, M., Northcott, H., Fainsinger, R., Stingl, M., & Truman, C.D. (2002). Twentieth-century social and health-care influences on location of death in Canada. Canadian Journal of Nursing Research, 34(3), 141–161.Google Scholar
Wilson, D.M., Truman, C., Huang, J., Sheps, S., Birch, S., Thomas, R., & Noseworthy, T. (2007). Home care evolution in Alberta: How have palliative clients fared? Healthcare Policy Journal, 2(4), 44–56.Google Scholar
Wilson, D.M., Truman, C., Huang, J., Sheps, S., Thomas, R., & Noseworthy, T. (2005). The possibilities and realities of home care. Canadian Journal of Public Health, 96(5), 385–389.Google Scholar
Zhukovsky, D.S. (2000). A model of palliative care: The palliative medicine program of the Cleveland Clinic Foundation. A World Health Organization Demonstrations Project. Supportive Care in Cancer, 8(4), 268–277.Google Scholar