title: Vulnerability, disability, and palliative end-of-life care.
abstract: Palliative care has paid exceedingly little attention to the needs of disabled people nearing the end of life. It is often assumed that these individuals, like all patients with little time left to live, arrive at palliative care with various needs and vulnerabilities that by and large, can be understood and accommodated within routine standards of practice. However, people with longstanding disabilities have lived with and continue to experience various forms of prejudice, bias, disenfranchisement, and devaluation. Each of these impose heightened vulnerability, requiring an honest, thoughtful, yet difficult revisiting of the standard model of palliative care. A proposed Vulnerability Model of Palliative Care attempts to incorporate the realities of life with disability and how a contextualized understanding of vulnerability can inform how we approach quality, compassionate palliative care for marginalized persons approaching death.
authors.affiliation: Interdisciplinary Master's Program in Disability Studies, University of Manitoba, Winnipeg, Canada.
authors.forename: Deborah
authors.initials: D
authors.lastname: Stienstra
authors.forename: Harvey Max
authors.initials: HM
authors.lastname: Chochinov
mesh_terms: D001291:Attitude of Health Personnel; D001293:Attitude to Death; D001294:Attitude to Health; D002170:Canada; D006233:Persons with Disabilities / Q000523:psychology / Q000706:statistics & numerical data; D004645:Empathy; D005190:Family / Q000523:psychology; D007722:Health Knowledge, Attitudes, Practice; D006297:Health Services Accessibility / Q000458:organization & administration; D006301:Health Services Needs and Demand; D006801:Humans; D017146:Models, Organizational; D008960:Models, Psychological; D010166:Palliative Care / Q000458:organization & administration / Q000523:psychology; D010344:Patient Advocacy; D026684:Personal Autonomy; D010686:Philosophy, Medical; D011287:Prejudice; D011369:Professional-Patient Relations; D011788:Quality of Life / Q000523:psychology; D012938:Social Perception; D012945:Social Values; D035862:Vulnerable Populations / Q000523:psychology / Q000706:statistics & numerical data