Hostname: page-component-586b7cd67f-dsjbd Total loading time: 0 Render date: 2024-11-25T23:00:37.475Z Has data issue: false hasContentIssue false
  • English
  • Français

Making “ethical safe space” in the translation of contested knowledge: The role of community debate in defining end-of-life decision ethics

Published online by Cambridge University Press:  21 December 2012

Joseph Kaufert ,
Karen Schwartz ,
Rhonda Wiebe ,
Jim Derksen ,
Zana M. Lutfiyya  and
Dean Richert
Joseph Kaufert*
Affiliation:
Department of Community Health Sciences, Faculty of Medicine, University of Manitoba, Winnipeg, Canada
Karen Schwartz
Affiliation:
Canadian Centre on Disability Studies, Winnipeg, Canada
Rhonda Wiebe
Affiliation:
Council of Canadians with Disabilities, Winnipeg, Canada
Jim Derksen
Affiliation:
Council of Canadians with Disabilities, Winnipeg, Canada
Zana M. Lutfiyya
Affiliation:
Department of Educational Administration, Foundations and Psychology, Faculty of Education, University of Manitoba, Winnipeg, Canada
Dean Richert
Affiliation:
Council of Canadians with Disabilities, Winnipeg, Canada
*
Address correspondence and reprint requests to: Joseph Kaufert, Department of Community Health Sciences, Faculty of Medicine, S113C Medical Services Bldg, University of Manitoba, 750 Bannatyne Ave., Winnipeg, MB. R3E 0W3Canada. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The objectives of this article are, first, to document a unique process of research knowledge translation (KT), which the authors describe as the creation of “ethical safe space,” and, second, to document the narratives of forum participants and describe their interaction in a dialogue about vulnerability, the authority of physicians, and the perspective of people with disabilities on the policy.

Method:

Narrative data from qualitative interviews with individual key informants and focus groups were used to identify speakers with specific expertise on policy, disability perspectives, and bioethical issues, who were invited to participate in the Forum on Ethical Safe Space. The planning workgroup adopted a model for enabling representative participation in the public forum designed to reduce the impact of physical, sensory, financial, language, and professional status barriers. Using the transcripts and keynote speakers' printed texts, primary themes and patterns of interaction were identified reflecting the alternative perspectives. Through the development of a workshop on ethical, legal, and disability-related implications of professional policy guidelines developed by the College of Physicians and Surgeons of Manitoba, we provided a qualitative analysis of the discourse involving experts and disability community members supporting alternative positions on the impact of the policy statement, and discuss ethical, legal, and disability rights issues identified in the public debate.

Results:

Contested policy and ethical frameworks for making decisions about withdrawing and withholding life supporting treatment may influence both the perspectives of palliative care providers and patients referred to palliative care facilities. An innovative model for KT using a public forum that enabled stakeholders with conflicting perspectives to engage with ethical and professional policy issues asserting the physician's authority in contested decisions involving withdrawing or withholding life-supporting treatment, was a successful way to engage stakeholders supporting alternative positions on the impact of the policy statement and to discuss ethical, legal, and disability rights issues identified in the public debate.

Significance of results:

Discussion during the forum revealed several benefits of creating ethical safe space. This model of workshop allows space for participation of stakeholders, who might not otherwise be able to interact in the same forum, to articulate their perspectives and debate with other presenters and audience members. Participants at the forum spoke of the creation of ethical safe space as a starting point for more dialogue on the issues raised by the policy statement. The forum was, therefore, seen as a potential starting point for building conversation that would facilitate revising the policy with broader consultation on its legal and ethical validity.

Keywords

Ethical safe spaceKTtreatment policy
Type
Original Articles
Information
Palliative & Supportive Care , Volume 11 , Issue 2 , April 2013 , pp. 123 - 133
Copyright
Copyright © Cambridge University Press 2012

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.)

References

REFERENCES

Child and Family Services of Manitoba v. R.L. (1997). 154 D.L.R. (4th) 409 (Man. C.A.).Google Scholar
College of Physicians and Surgeons of Manitoba. Withholding and Withdrawing Life-Sustaining Treatment. http://www.cpsm.mb.ca/statements/st1602.pdfGoogle Scholar
Derksen, J. & Chochinov, H. M. (2006). Disability and end-of-life care: Let the conversation begin. Journal of Palliative Care, 22, 175–182.Google Scholar
Downie, J. (2008a). The legal status of unilateral withholding and withdrawal of treatment: A National overview. In End of Life Ethics and Decision-Making: Current Policy Debates about Withholding and Withdrawing Life-Sustaining Treatment. Summary of June 9, 2008 Knowledge Translation Forum. Wiebe, R. & Neufeld, L. (eds.), pp. 44–51. Winnipeg: Department of Community Health Sciences, University of Manitoba.Google Scholar
Downie, J. (2008b). Whose decision is it anyway? An exploration of unilateral withholding and withdrawal of potentially life-sustaining treatment in Manitoba. In End of Life Ethics and Decision-Making: Current Policy Debates about Withholding and Withdrawing Life-Sustaining Treatment. Summary of June 9, 2008 Knowledge Translation Forum. Wiebe, R. & Neufeld, L. (eds.), pp. 37–43. Winnipeg: Department of Community Health Sciences, University of Manitoba.Google Scholar
Edwards, M. (2008). Probing the ethics of minimum goals of life-sustaining treatment and a physician's final authority. In End of Life Ethics and Decision-Making: Current Policy Debates about Withholding and Withdrawing Life-Sustaining Treatment. Summary of June 9, 2008 Knowledge Translation Forum. Wiebe, R. & Neufeld, L. (eds.), pp. 67–68. Winnipeg: Department of Community Health Sciences, University of Manitoba.Google Scholar
Ermine, W. (2007). The ethical space of engagement. Indigenous Law Journal, 6, 193-2-3.Google Scholar
Gill, C.J. (2006). Disability, constructed vulnerability, and socially conscious palliative care. Journal of Palliative Care, 22, 183–189.Google Scholar
Golubchuk v. Salvation Army Grace General Hospital and others (2008). MBQB 49.Google Scholar
Graham, I. & Tetroe, J. (2009). Implementation of evidence. International Journal of Evidence-Based Healthcare, 7, 157–158.CrossRefGoogle ScholarPubMed
Kaufert, J. & Wiebe, R. (2008). Conference overview. In End of Life Ethics and Decision-Making: Current Policy debates about Withholding and Withdrawing Life-Sustaining Treatment. Summary of June 9, 2008 Knowledge Translation Forum. Wiebe, R. & Neufeld, L. (eds.), pp. 5–8. Winnipeg: Department of Community Health Sciences, University of Manitoba.Google Scholar
Kaufert, J. & Locker, D. (1990) Rehabilitation ideology and respiratory support technology. Social Science and Medicine, 29, 867–877.Google Scholar
Kaufert, J., Wiebe, R., Schwartz, L., et al. (2010). End-of-life ethics and disability: Differing perspectives on case-based teaching. Medicine Health Care and Philosophy, 13, 115–126.CrossRefGoogle ScholarPubMed
Linton, S. (1998). Claiming Disability, Knowledge and Identity. New York: New York Press, 8.Google Scholar
Longmore, P.K. (2003). Why I Burned My Book and Other Essays on Disability. Philadelphia: Temple University Press.Google Scholar
Nantais, D. & Kuczewski, M. (2004). Quality of life: The contested rhetoric of resource allocation and end-of-life decision making. Journal of Medicine and Philosophy, 29, 651–664.Google Scholar
Newell, C. (2006). Disability, bioethics, and rejected knowledge. Journal of Medicine and Philosophy, 31, 269–283.Google Scholar
Oliver, M. (1998). Theories of disability in health practice and research. British Medical Journal, 312, 1446–1449.Google Scholar
Rodriguez v. British Columbia (Attorney General) (1993). 3 S.C.R. 519.Google Scholar
Rogers, J.D. & Martin, F.H. (2009). Knowledge translation in disability and rehabilitation research: Lessons from the application of knowledge value. Mapping to the case of accessible currency. Journal of Disability Policy Studies, 20, 110–126.Google Scholar
Sawatzky v. Riverview Health Centre Inc. (1998). 167 Dominion Law Reports (4th) 359 (Man.Q.B.)Google Scholar
Straus, S.E., Tetroe, J. & Graham, I. (2009). Defining knowledge translation. Canadian Medical Association Journal, 181, 165–168.Google Scholar
Stienstra, D. & Chochinov, H. (2006). Vulnerability disability and palliative end of life care. Journal of Palliative Care, 22 166–174.CrossRefGoogle ScholarPubMed
Webster, G. (2008). Between a rock and a hard place: Is the CPSM Statement an ethical remedy. In End of Life Ethics and Decision-Making: Current Policy Debates about Withholding and Withdrawing Life-Sustaining Treatment. Summary of June 9, 2008 Knowledge Translation Forum. Wiebe, R. & Neufeld, L. (eds.), Department of Community Health Sciences, Winnipeg, University of Manitoba, 52–58.Google Scholar
Wiebe, R. & Neufeld, L., ed. (2008). End of Life Ethics and Decision Making: Current Policy Debates about Withholding or Withdrawing Life Sustaining Treatment. Summary and Edited Transcript Proceedings of June 9, 2008 Knowledge Translation Forum. Winnipeg: Department of Community Health Sciences, Faculty of Medicine, University of Manitoba.Google Scholar