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Palliative care for vulnerable populations

Published online by Cambridge University Press:  13 February 2012

Deborah Stienstra  and
Harvey Max Chochinov
Deborah Stienstra*
Affiliation:
Disability Studies, University of Manitoba, Winnipeg, Canada
Harvey Max Chochinov
Affiliation:
Department of Psychiatry, University of Manitoba, and Manitoba Palliative Care Research Unit, Cancer Care Manitoba, Winnipeg, Canada
*
Address correspondence and reprint requests to: Deborah Stienstra, Disability Studies, 128 Education Building, University of Manitoba, Winnipeg, MB Canada R3T 2N2. E-mail: [email protected]
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Abstract

Objective:

The purpose of this article is to identify how inclusive and accessible palliative care can be achieved for all, including those labelled as vulnerable populations.

Method:

Drawing on a review of existing literature as well the research of the Vulnerable Persons and End-of-Life New Emerging Team (VP-NET), this article reflects on what changes can be made within palliative care to make it more inclusive.

Results:

Experiences of marginalization often result, intentionally or unintentionally, in differential treatment in healthcare. This increased vulnerability may result from attitudes of healthcare providers or from barriers as a result of “normal” care practices and policies that may exclude or stigmatize certain populations. This may include identifying when palliative care is necessary, who receives palliative care and where, and what is necessary to complement palliative care.

Significance of results:

Inclusive and accessible palliative care can become possible through building on the existing strengths in palliative care, as well as addressing existing barriers. This may include treating the whole person and that person's support team, including paid support workers, as part of the unit of care. It involves ensuring physically accessible hospice and palliative care locations, as well as thinking creatively about how to include those excluded in traditional locations. Inclusive palliative care also ensures coordination with other care services. Addressing the barriers to access, and inclusion of those who have been excluded within existing palliative care services, will ensure better palliative and end-of-life care for everyone.

Keywords

AccessibilityPalliative careInclusionVulnerabilityMarginalization
Type
Special Section: Vulnerability and Palliative Care
Information
Palliative & Supportive Care , Volume 10 , Issue 1 , March 2012 , pp. 37 - 42
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: Canadian Partnership Against Cancer.Google Scholar
Chochinov, H.M. (2002). Dignity-conserving care — A new model for palliative care. Journal of the American Medical Association, 287, 2253–2260.CrossRefGoogle 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
Chochinov, H.M., Hack, T., McClement, S., et al. (2002). Dignity in the terminally ill: A developing empirical model. Social Science & Medicine, 54, 433–443.CrossRefGoogle ScholarPubMed
Fawcett, G. (2009). Caregivers with disabilities: Debunking the myth. Policy Research Directorate, Human Resources Skills Development CanadaMay 2009.Google Scholar
Gill, C.J. (2006). Disability, constructed vulnerability, and socially conscious palliative care. Journal of Palliative Care, 22, 183–191.CrossRefGoogle ScholarPubMed
Janz, H. (2006). “Voices at Dying: Dying to be Heard.” 16th International Congress of the Terminally Ill, McGill University, Montreal, Quebec, September, 2006.Google Scholar
Kaufert, J.M., Wiebe, R., Lavallee, M., et al. (Forthcoming). Seeking physical, cultural, ethical and spiritual “safe space” for a “good death”: The experience of Indigenous peoples in accessing hospice care. In Religious Understandings of a ‘Good Death’ in hospice palliative care. Coward, H. & Stajhuhar, K. (eds.). New York: SUNY Press.Google Scholar
Kaufert, J., Wiebe, R., Schwartz, K., et al. (2010). End-of-life ethics and disability: Differing perspectives on case-base teaching. Medicine, Health Care and Philosophy, 13, 115–126.CrossRefGoogle Scholar
Kellerman, W.J.P. Writing on the insides of my eyelids. http://www.umanitoba.ca/outreach/vpnet/LD-patrick.htm.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. DT (eds.). Washington, DC: American Association on Intellectual and Developmental Disabilities, pp. 201–218.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. (eds.). Baltimore: Johns Hopkins University Press, pp. 225–241.Google Scholar
Schwartz, K.D. & Lutfiyya, Z.M. (2009). “What lay ahead.” A media portrayal of disability and assisted suicide. Journal of Research in Special Educational Needs, 9, 27–38.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
Troschuk, L., Atherton, C. & Keys, S. (2006). “A Good Life until the End: Palliative Care and People with Disabilities.” www.vp-net.ca.Google Scholar
Woods, A., Willison, K., Kington, C., et al. (2008). Palliative care for people with severe persistent mental illness: A review of the literature. Canadian Journal of Psychiatry, 53, 725.CrossRefGoogle ScholarPubMed