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Heightened vulnerabilities and better care for all: Disability and end-of-life care

Published online by Cambridge University Press:  13 February 2012

Deborah Stienstra ,
April D'Aubin  and
Jim Derksen
Deborah Stienstra*
Affiliation:
Disability Studies, University of Manitoba, Winnipeg, Canada
April D'Aubin
Affiliation:
Disability Studies, University of Manitoba, Winnipeg, Canada
Jim Derksen
Affiliation:
Vulnerable Persons and End-of-Life Care Network (VP-NET), Winnipeg, Manitoba, Canada
*
Address correspondence and reprint requests to: Deborah Stienstra, Disability Studies, 128 Education Building, University of Manitoba, Winnipeg, MBCanadaR3T 2N2. E-mail: d_stienstra@umanitoba.ca
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Abstract

Objective:

The purpose of this study was to assess the extent to which vulnerability was present or heightened as a result of either disability or end-of-life policies, or both, when people with disabilities face end of life.

Method:

People with disabilities and policy makers from four Canadian provinces and at the federal level were interviewed or participated in focus groups to identify interactions between disability policies and end-of-life policies. Relevant policy documents in each jurisdiction were also analyzed. Key theme analysis was used on transcripts and policy documents. Fact sheets identifying five key issues were developed and shared in the four provinces with policy makers and people with disabilities.

Results:

Examples of heightened vulnerability are evident in discontinuity from formal healthcare providers with knowledge of conditions and impairments, separation from informal care providers and support systems, and lack of coordination with and gaps in disability-related supports. When policies seek to increase the dignity, autonomy, and capacity of all individuals, including those who experience heightened vulnerability, they can mitigate or lessen some of the vulnerability.

Significance of results:

Specific policies addressing access to community-based palliative care, coordination between long-standing formal care providers and new care providers, and support and respect for informal care providers, can redress these heightened vulnerabilities. The interactions between disability and end-of-life policies can be used to create inclusive end-of-life policies, resulting in better end-of-life care for all people, including people with disabilities.

Keywords

Palliative care policyDisability policyHeightened vulnerabilityCoordination of careDisability supports
Type
Special Section: Vulnerability and Palliative Care
Information
Palliative & Supportive Care , Volume 10 , Issue 1 , March 2012 , pp. 17 - 26
Copyright
Copyright © Cambridge University Press 2012

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References

REFERENCES

Annable, G., Stienstra, D. & Chochinov, H.M. (2010). Addressing disability in cancer care. Toronto, ON: Canadian Partnership against Cancer.Google Scholar
Chochinov, H.M. (2007). Dignity and the essence of medicine: The A, B, C and D of Dignity Conserving Care. British Medical Journal, 335, 184–187.CrossRefGoogle Scholar
Cohen, L.L. (2008). Racial/ethnic disparities in hospice care: A systematic review. Journal of Palliative Medicine, 11, 763–768.CrossRefGoogle ScholarPubMed
Crawley, L.M. (2005). Racial, cultural, and ethnic factors influencing end-of-life care. Journal of Palliative Medicine, 8, 58–69.CrossRefGoogle ScholarPubMed
Fawcett, G. (2009). Caregivers with disabilities: Debunking the myth. Policy Research Directorate, Human Resources and Skills Development Canada, Ottawa.Google Scholar
Fineman, M.A. (2008). The vulnerable subject: Anchoring equality in the human condition. Yale Journal of Law and Feminism, 20, 1–23.Google Scholar
Greiner, K.A., Perera, S. & Ahluwalia, J.S. (2003). Hospice usage by minorities in the last year of life: Results from the National Mortality Follow Back Survey. Journal of the American Geriatrics Society, 51, 970–978.CrossRefGoogle Scholar
Human Resources and Skills Development Canada (HRSDC). (2009). Advancing the Inclusion of People with Disabilities: 2009 Federal Disability Report. Ottawa: HRSDC.Google Scholar
Johnson, K.S., Kuchibhatla, M. & Tulsky, J.A. (2008). What explains racial differences in the use of advance directives and attitudes toward hospice care? Journal of American Geriatrics Society, 56, 1953–1958.Google Scholar
Kroes, G., Watling, J. & Policy Research Institute. (2009). Healthy Transitions to Adulthood: Moving to Integrated Mental Health Care: A Workshop Report. Ottawa: Policy Research Institute, Government of Canada.Google Scholar
Lutfiyya, Z.M. & Schwartz, K.D. (2010). Applying the dignity-conserving model of care to people with intellectual disabilities at end of life. In End of Life Care for Children and Adults with Intellectual and Developmental Disabilities. Friedman, S.L. & Helm, D.T. (eds.). Washington, DC: American Association on Intellectual and Developmental Disabilities.Google Scholar
Lutfiyya, Z.M., Schwartz, K.D. & Hansen, N. (2009). False Images: Reframing the End-of-Life Portrayal of Disability in the Film Million Dollar Baby. In Bioethics at the Movies. Shapsay, S. (ed.), Baltimore: Johns Hopkins University Press.Google Scholar
McColl, M.A., Stienstra, D., Shortt, S.E., et al. (2005). Reducing Inequities in Access to Primary Care for People with Disabilities. Final Report to Canadian Institutes for Health Research. Kingston, ON: Queen's University.Google Scholar
Stienstra, D. & Chochinov, H.M. (2006). Vulnerability, disability and palliative end-of-life care. Journal of Palliative Care, 22, 166–174.CrossRefGoogle ScholarPubMed
Stienstra, D. & Wiebe, R. (2006). Finding our way home: Home and end-of-life transitions for people with disabilities. Canadian Journal of Urban Research, 15, 19–35.Google Scholar
Subcommittee of the Standing Senate Committee on Social Affairs, Science and Technology. (2000). Quality End-of-Life Care: The Right of Every Canadian. Ottawa: The Senate of Canada.Google Scholar
Wiebe, R., Stewart, G., Kaufert, J., et al. (2009). “Introducing Medical Students to Perspectives on Independent Living and the Experiences of Persons with Disabilities.” Poster Presentation, Canadian Conference of Medical Educators, Edmonton, May 3–4, 2009.Google Scholar