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End of Life Care: The Experience of Seniors and Informal Caregivers

Published online by Cambridge University Press:  31 March 2010

Margaret M. Ross*
Affiliation:
University of Ottawa
Michael J. MacLean
Affiliation:
University of Regina
Roy Cain
Affiliation:
McMaster University
Scott Sellick
Affiliation:
Northwestern Ontario Regional Cancer Care Centre
Rory Fisher
Affiliation:
University of Toronto*
*
Requests for offprints should be sent to:/Les demandes de tirés-à-part doivent être adressées à: Margaret M. Ross, Leyland Private, Ottawa, Ontario, K1V 0X8, ([email protected])

Abstract

As Canada's elderly population grows, an increasing number of seniors will require care as they face the end of life. Relatively little research attention, however, has been given to end-of-life issues, including those related to treatment and care for persons who are both old and dying. Families and health care providers have little direction and guidance to ensure an optimum quality of life for seniors prior to death and during the period of bereavement. This article presents an abbreviated summary of the literature regarding end-of-life issues and challenges for seniors who face a life threatening illness and are at, or near, the end of their lives. The article is also informed by a series of focus groups with elderly and other informal caregivers regarding the giving of help and getting support while caring for persons who are dying. It concludes with a response to this evidence by making a series of recommendations aimed at ensuring optimal end-of-life care for seniors who are dying and their families.

Résumé

Au fur et à mesure de l'augmentation de la population des personnes âgées au Canada, un nombre croissant d'aîné(e)s auront besoin de soins pour affronter la fin de leur vie. Par ailleurs, les recherches ont peu porté sur les questions reliées à la fin de la vie, que ce soit celles des traitements ou des soins pour les personnes qui sont à la fois âgées et mourantes. Les familles et les fournisseurs de soins de santé disposent de peu d'orientation et d'encadrement pour assurer une qualité de vie optimale aux personnes âgées avant leur décès et pendant la période de deuil. Cet article présente un bref aperçu de la documentation sur les questions reliées à la fin de la vie et sur le défi que représente une maladie qui menace la vie des personnes âgées qui sont en fin de vie ou qui s'en rapproche. L'article se fonde sur des informations qui proviennent de groupes de réflexion sur les personnes âgées et d'autres aidants naturels et portent sur l'aide et l'appui que l'on donne et reçoit en s'occupant de personnes en fin de vie. L'article se termine par une série de recommandations qui portent sur les meilleurs soins pour les personnes âgées à l'article de la mort et pour leur famille.

Type
Articles
Copyright
Copyright © Canadian Association on Gerontology 2002

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Footnotes

*The authors would like to acknowledge funding received from Health Canada for the summarization of the literature, the organization of focus groups with informal caregivers and the development of A Guide for End-of-Life Care for Seniors. An Ontario Ministry of Health Career Scientist award to Dr. Margaret Ross also facilitated the development of this manuscript. A special note of acknowledgement goes to the focus group participants who shared their experience of caring for seniors who are dying.

References

Aronson, J., Marshall, U., & Sulman, J. (1987). Patients awaiting discharge from hospital. In Marshall, V.W. (Ed.). Aging in Canada: Social Perspectives (2nd edition) (pp. 538549). Markham, ON.: Fitzhenry & Whiteside.Google Scholar
Bruce-Jones, P., Roberts, H., Bowker, L., & Cooney, V. (1996). Resuscitating the elderly: What do patients want? Journal of Medical Ethics, 22, 154159.CrossRefGoogle ScholarPubMed
Buckman, R. (1993). Communication in palliative care: A practical guide. In Doyle, D., Hanks, C., MacDonald, N. et al. , Oxford Textbook of Palliative Medicine (pp. 4761). Oxford, England: Oxford University Press.Google Scholar
Canadian Study on Health and Aging Working Group. (1994). Canadian study on heath and aging: Study methods and prevalence of dementia. Canadian Medical Association Journal, 150(6), 899913.Google Scholar
Field, M.J., & Cassel, C.K. (1997). Approaching death: Improving care at the end of life. Washington, DC: National Academy Press.Google Scholar
Fisher, R., Ross, M.M., & MacLean, M.J. (2000). A guide to end of life care for seniors. Ottawa, ON: Health Canada.Google Scholar
Fry, P.S. (1990). A factor analytic investigation of home bound elderly individuals' concerns about death and dying and their coping responses. Journal of Clinical Psychology, 46(6), 737748.3.0.CO;2-L>CrossRefGoogle ScholarPubMed
Garvin, J., & Chapman, C. (1995). Clinical management of dying patients. Western Journal of Medicine, 163(3) 343345.Google Scholar
Hall, P., Stone, G., & Fiset, V. (1998). Palliative Care: How can we meet the needs of our multicultural communities? Journal of Palliative Care, 14(2), 4549.CrossRefGoogle ScholarPubMed
Kelner, M., & Bourgeault, I. (1993). Patient control over dying: Responses of health care professionals. Social Science and Medicine, 36(6), 757765.CrossRefGoogle ScholarPubMed
Ley, D.C.H. (1989). The elderly and palliative care. Journal of Palliative Care, 5(4), 4358.CrossRefGoogle ScholarPubMed
MacLean, M.J., Kelley, M.L., Arthur, M., & Stones, M. (1999). Palliative care in rural Canada. Ottawa, ON: Health Canada.Google Scholar
Marshall, V.W. (1986). A sociological perspective on aging and dying. In Marshall, V.W. (ed.). Later life: The psychology of aging (pp. 125147). Beverly Hills, CA: Sage.Google Scholar
Perls, T.T., Morris, J.N., Ooi, W.L., & Lipsitz, L.A. (1993). The relationship between age, gender and cognitive performance in the very old: The effect of selective survival. Journal of the American Geriatrics Society, 41, 11931201.CrossRefGoogle ScholarPubMed
Roberts, D.K. (1993). The experience of dyspnea in late stage cancer: Patients' and nurses' perspectives. Cancer Nursing, 16(4), 310320.CrossRefGoogle ScholarPubMed
Ross, M., & Crook, J. (1995). Pain in later life: Present state of knowledge (pp. 319). In Ranjan, R. (ed.). Chronic pain in old age: An integrated biopsychosocial perspective. Toronto, ON: University of Toronto Press.Google Scholar
Ross, M., & Crook, J. (1998). Elderly recipients of home nursing services: Pain, disability and functional competence. Journal of Advanced Nursing, 27, 11171126.CrossRefGoogle ScholarPubMed
Ross, M.M., & McDonald, B. (1994). Providing palliative care to older adults: Context and challenges. Journal of Palliative Care, 10(4), 510.CrossRefGoogle ScholarPubMed
Ross, M., Rosenthal, C., & Dawson, P. (1997). Patterns of caregiving following the institutionalization of elderly husbands. Canadian Journal of Nursing Research, 29(2), 7997.Google ScholarPubMed
Roy, D.J. (1999). Palliative care in Canada 1999 - A question period. Journal of Palliative Care, 15(1), 35.Google ScholarPubMed
Samaroo, B. (1996). Assessing palliative care educational needs of physicians and nurses: Results of a survey. Journal of Palliative Care, 12(2), 2022.CrossRefGoogle ScholarPubMed
Sankar, A. (1993). Images of home death and the elderly patient. Generations, 17(2), 5963.Google Scholar
Senate of Canada (2000). Quality end-of-life care: The right of every Canadian. Ottawa, ON: Senate of Canada.Google Scholar
Shidler, S. (1998). Participation of chronically ill older adults in their life-prolonging treatment decisions: Rights and opportunities. Canadian Journal on Aging, 17(1), 123.CrossRefGoogle Scholar
Statistics Canada (1997). A portrait of seniors in Canada, 2nd edition, Ottawa, ON: Statistics Canada.Google Scholar
Viola, R., Wells, G., & Patterson, J. (1997). The effects of fluid status and fluid therapy on the dying: A systematic review. Journal of Palliative Care, 13(4), 4152.CrossRefGoogle ScholarPubMed
Wilson, D. (1993). Sustaining life through tube feeding: Factors influencing surrogate decision making. Canadian Journal on Aging 12(3), 298310.CrossRefGoogle Scholar
Wilson, D. (1999). End of life preferences of knowledgeable senior citizens for assisted suicide. Paper presented at the Canadian Association on Gerongology conference, Ottawa.Google Scholar