Disability Perspectives on Health Care Planning and Decision-Making

Stein, Gary L.; Kerwin, Jeanne

doi:10.1089/jpm.2010.0159

Cited by 29 publications

(31 citation statements)

References 10 publications

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“…[4][5][6][7] Few studies have focused on the needs of people who have acquired an early onset disability before needing EOL care services. 8 Yet, approximately 21 million Americans with physical disabilities 9 will ultimately face EOL issues. Although most people experience a functional decline at the EOL and become increasingly disabled as death approaches, 10 the EOL experience may be different for those with a long-term functional limitation prior to needing EOL care.…”

mentioning

confidence: 99%

End of Life and Women Aging with a Disability

Volker

Zolnierek

Harrison

et al. 2012

Journal of Palliative Medicine

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Approximately 21 million noninstitutionalized Americans with physical disabilities will ultimately face end-oflife [EOL] issues. Studies have documented disparate care and poorer outcomes for persons with preexisting disabilities who have life-limiting illnesses, which raises the question of how EOL experiences may differ for these individuals. The aim of this qualitative, descriptive study was to explore how EOL issues might emerge within the life stories of women aging with functional disabilities. Interview data were obtained from a larger, ongoing ethnographic study focused on the creation of an explanatory model of health disparities of disablement in women with mobility impairment. Each participant was interviewed three to four times using a life-course perspective that captures life trajectories and transitions experienced over time. For this analysis, 41 interviews were selected from 20 participants who discussed issues related to death and dying. Content analysis of the data revealed five analytic categories: death as a signpost, impact of others' deaths, deaths that affected personal insights and choice, EOL possibilities, and a personal brush with death. EOL issues were manifested in a variety of ways that revealed both determination to remain as independent as possible within the context of declining functional ability and uncertainty regarding the future.

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confidence: 99%

End of Life and Women Aging with a Disability

Volker

Zolnierek

Harrison

et al. 2012

Journal of Palliative Medicine

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“…Notably, our participants with disabilities were less positive about their control over EOL decisions than participants who did not have a disability. This raises a question about potential EOL care concerns for PWDs, which might be rooted in the concern some disability activists have voiced about denial of preferred life-sustaining measures for PWDs [18][19] or might have other origins. Additional research is warranted to pinpoint the nature of this concern and suggest appropriate responses.…”

Section: Discussionmentioning

confidence: 99%

“…Until such evidence-based approaches to advance care planning are formulated, practitioners should be mindful of potential biases about QOL for PWDs and not discount lifesustaining measures based on an assumption that life with a disability is not worth living. 33 Given that ethics committees often advise HCPs, patients, and families about controversies regarding withholding and withdrawing life-sustaining interventions and requests for futile care, such committees should have at least one member well versed in disability and civil rights issues. 5 In sum, the disability perspective must be included in the ongoing quest to improve quality and choice at the EOL, including decisions on how best to allocate limited resources for EOL care.…”

Section: Discussionmentioning

confidence: 99%

“…PWDs, however, may worry that ADs might be used to prematurely withhold lifesustaining interventions and hasten death. 18 Disability activist Diane Coleman described the advance care planning movement as one that ''developed under the false premise that the primary or only problem is overtreatment of dying people'' and argued that it should ''address undertreatment of people who may or may not be terminally ill.'' 19 We know that PWDs want to retain good QOL at the end of life and maintain autonomy, control over health-related decisions, and choice, 20-21 but we do not know whether ADs are an appropriate mechanism for this goal. The present study therefore examines relationships among attitudes about ADs, QOL, and health locus of control among disabilities activists, defined as persons who engage in activities that promote the rights of PWDs.…”

Section: Introductionmentioning

confidence: 99%

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Advance Directives, Control, and Quality of Life for Persons with Disabilities

Volker

Divin-Cosgrove

Harrison

2013

Journal of Palliative Medicine

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“…It is guaranteed in provincial/state law in Canada (Dunbrack, 2006;Lambert et al, 2005) and the United States (Stein & Kerwin, 2010) that the patient has the ultimate decision for selfdetermination for health care and must give informed consent for any treatment. If the individual is not capable of making his or her own decisions, legal mechanisms are in place in many jurisdictions to assign an appropriate proxy decision maker, whose responsibility is to ensure that the patient's wishes and beliefs are respected (Castillo et al, 2011;Dunbrack, 2006;Sabatino, 2007).…”

Section: Legal Aspects Of Advance Decision Makingmentioning

confidence: 99%

The Allied Health Care Professional's Role in Assisting Medical Decision Making at the End of Life

Lambert¹

2012

Topics in Language Disorders

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As a patient approaches the end of life, he or she faces a number of very difficult medical decisions. Allied health care professionals, including speech-language pathologists (SLPs) and occupational therapists (OTs), can be instrumental in assisting their patients to make advance care plans, although their traditional job descriptions do not include this role. The allied health care professional is often in a trusted position, permitting insight into the values and beliefs of the patient and facilitating the depth of communication necessary when making difficult decisions. Professionals who work with clients at the end of life need to be aware of the many issues surrounding endof-life decision making and the preparation of advance directives for care. This article provides an overview of the complex issues the practicing clinician needs to keep in mind when assisting clients with advance care planning. This service requires that clinicians step outside their roles as rehabilitation experts, a move that is supported by professional associations. The concepts of medical decision making and informed consent are discussed in the context of decisions made in advance of illness at the end of life. The professional needs also to be aware of the legalities of advance decision making, as laws and statutes differ between states/provinces. There are overarching pieces of legislation that inform local legal and policy issues; the impact of these is briefly addressed. Various forms of documenting advance care plans, as well as their strengths and weaknesses, are discussed. Decision models are introduced as a means of guiding the clinician to provide quality care. Means of offering practical assistance to the client, such as motivational interviewing, the careful selection of appropriate educational material, and prevention of undue influence on the patient are discussed. Finally, the role of the allied health care professional in advocating for the client during the implementation is addressed. Understanding how the advance care plan should be implemented when a patient becomes incapable is essential when advocating for and protecting the rights of the patient. When a professional is prepared with the requisite understanding of all of the facets of advance care planning, he or she can become a strong ally for the patient and the family at this very important phase of life.

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Disability Perspectives on Health Care Planning and Decision-Making

Cited by 29 publications

References 10 publications

End of Life and Women Aging with a Disability

End of Life and Women Aging with a Disability

Advance Directives, Control, and Quality of Life for Persons with Disabilities

The Allied Health Care Professional's Role in Assisting Medical Decision Making at the End of Life

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