End-of-life ethics and disability: differing perspectives on case-based teaching

Abstract

The way in which medical professionals engage in bioethical issues ultimately reflects the type of care such patients are likely to receive. It is therefore critical for doctors and other health care professionals to have a broad understanding of disability. Our purpose in this paper is to explore ways of teaching bioethical issues to first year medical students by integrating alternative approaches. Such approaches include (a) the use of the narrative format, (b) the inclusion of a disability perspective, and (c) the presentation and facilitation of classes by people with disabilities. We consider how these new kinds of presentations are evaluated by students, faculty, people with disabilities and professional ethicists. We hope new knowledge may provide health care professionals with a greater understanding of the perspectives of patients with disabilities, who are confronted by conflicting ethical values and frameworks for decision-making in their interaction with such professionals.

Palliative care for vulnerable populations

“…Support for this type of work can be developed through education and training for those who provide palliative care. Materials or workshops that bring forward and value the experiences of those who have been created vulnerable are especially effective in raising awareness of hidden assumption (Kaufert et al, 2010). Using novel knowledge translation methods such as theater or humor can also help the process of reflection (Janz, 2006).…”

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

“…The disability studies literature recognizes the impact of the care provider in ethical decision making and emphasizes the role of formal undergraduate medical education and informal clinical socialization of physicians caring for persons with disability in community practice settings. The ethics theme of VP-Net research documented the teaching approaches and case materials engaging disability perspectives in end-of-life ethics in the pre-clinical curriculum of the University of Manitoba (Kaufert et al, 2010). Our research documented the impact of introducing medical students to an interdisciplinary approach, combining the perspective of disability studies and bioethics perspectives, which emphasizes the social model of disability and involves persons with disability as teachers.…”

“…Healthcare professionals and clinical ethicists may not fully appreciate how mass media, professional socialization, and popular language use represent disability in terms of negative quality of life, emphasis on limitations in functional capacity, and perceived experience of Ethical safe space in end of life ethics suffering (Longmore, 2003). These representations of disability may, therefore, negatively impact how the quality of life of a person living with disability is understood by both health professionals and the general public (Kaufert et al, 2010). Specifically, popular and professional representations of disability may affect people with disabilities and their care providers in crisis situations (Nantais & Kuczewski, 2004).…”

Care, Compassion, or Cost: Redefining the Basis of Treatment in Ethics and Law

“…52 Similarly, there is distrust among many with chronic conditions of the current inclination in many jurisdictions to advance autonomy as a rationale in cases where patients seek to refuse care but reject autonomy in cases where patients or their surrogates seek continuing care. 52 Similarly, there is distrust among many with chronic conditions of the current inclination in many jurisdictions to advance autonomy as a rationale in cases where patients seek to refuse care but reject autonomy in cases where patients or their surrogates seek continuing care.…”

“…"Many people with disabilities tend to distrust how medical professionals (de)value their lives and misrepresent their quality of life." 52 Similarly, there is distrust among many with chronic conditions of the current inclination in many jurisdictions to advance autonomy as a rationale in cases where patients seek to refuse care but reject autonomy in cases where patients or their surrogates seek continuing care. 53 If they are not at the end of life, then the nature of their lives is often perceived as so limited as to deserve only "comfort care" rather than aggressive treatment.…”