Theme Descriptions
Dignity Conserving Care
Harvey Max Chochinov leads a team of researchers that have generated some of the first empirical data addressing how dignity can be understood in end of life care. This research has shown that patients experiencing a loss of dignity are more likely to endorse psychological and physical symptoms of distress, including pain, loss of will to live, depression, hopelessness and overall poor quality of life. The research has yielded an empirically based model of dignity in patients which provides caregivers a therapeutic map of the issues that may affect individual experiences of dignity. The VP-Net research is working on determining whether and to what extent the dignity model applies to vulnerable individuals.
Policy Frameworks
In phase one of the project Deborah Stienstra with April D’Aubin and Jim Derksen investigated the Canadian policy contexts within which end of life care for vulnerable persons occurs and evaluated the extent to which vulnerable individuals are included as target populations for palliative care initiatives. They also investigate the gaps in existing programs, and the impact existing disability-related policies have on palliative care. From key informant interviews and policy document reviews, the team has developed policy backgrounders that highlight policy frameworks federally and in four provincial jurisdictions (Alberta, Manitoba, Ontario and Newfoundland). Focus groups of people with disabilities in each of the four provinces, coordinated by the Council of Canadians with Disabilities, have been used to develop an analysis paper that identifies the ways in which the needs of people with disabilities are or are not being met in palliative care. The data collected from these focus groups was compiled into five fact sheetsthat identify the key issues and potential advocacy actions for the disability community. These fact sheets were shared in community forums in four provinces.
Ethics and Decision-making
Joe Kaufert and Rhonda Wiebe, along with student researcher Lisa Labine are examining the ethical frameworks in which end-of-life decision-making occur by and/or for people with disabilities. They are seeking to identify the value systems and clinical decision frameworks of consumers, their family/support circle members, and service providers that influence decisions concerning medical care for people with disabilities who may be facing critical or end-of-life circumstances.
Their research involves:
- A review of academic and consumer organization-based literature on disability issues and end-of-life ethics, as well as content analyses of policy statements and case studies;
- An examination of both service provider and consumer initiated frameworks for end-of-life decision-making;
- In-depth interviews with 50 key informants including: persons with disabilities; informal care providers and family members; service providers; local community advocates; disability rights advocates from both Canada and the US; palliative care specialists and other physicians; legal experts; medical ethicists from across Canada; and others concerned about disability issues, poverty, access to appropriate health care and other determinants of health.
- Focus groups with stakeholders including Aboriginal peoples and service providers. An initial focus group dealt with student physicians’ attitudes to end-of-life issues for people with disabilities. Additional focus groups are planned in 2007 to examine responses to narrative decision frameworks and workbooks promoting values clarification and specification of treatment preferences by persons with disabilities.
- The formation of an Advisory Committee including individuals with disabilities, representatives of consumer organizations, professional care providers, legal human rights experts and health ethicists.
Social Valuation
Zana Marie Lutfiyya leads research initiatives within this theme that examine the influence of the social (de)valuation of vulnerable populations through the construction of perceptions and biases on end of life care. The team is working to identify the nature of perceptions/biases regarding end of life care for vulnerable populations as held by selected care professionals, portrayed in the popular media, and embedded in policy documents. The research proposes that positive perceptions might result in a positive valuation of the person leading to treatment with respect, dignity, and sensitive end of life care. Conversely, biases might include a devaluing of the person, leading to less positive treatment and potentially death hastening activities.
The researchers are developing, pilot testing, refining and disseminating training modules to be used with a variety of end of life care professionals. The potential benefits of the dignity model developed by Chochinov’s theme, as they apply to vulnerable populations, will also be incorporated into these modules. In conjunction with Kaufert’s theme, the team is developing case scenarios to allow practitioners to systematically become aware of their own biases/perceptions and reflect on how these might influence decision making.
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