Resisting the hospice narrative in pursuit of quality of life
AbstractThe overall hospice philosophy is to provide care that enhances a dying person’s quality of life. Most individual’s quality of life is improved when they embrace hospice eligibility and reimbursement requirements, such as stopping burdensome and ineffective curative treatment, addressing pain and other symptoms, and seeking avenues for closure. However, this institutionalized prescription for enhancing quality of life at the end of life does not work for all patients. This article considers what happens when patients’ personal definitions of quality of life at the end of life resist the prevailing narrative of appropriate hospice care. Using a series of examples from more than 600 hours of participant observation, our findings reveal narratives of resistance that fall into three themes: i) patients and/or family members who deny the imminence of death despite an admission to hospice; ii) patients who request treatments usually defined as curative; and iii) patients who resist the organizational constraints imposed by the institutionalization of the hospice model of care. Analysis of these themes illustrates the subjective nature of quality of life at the end of life and the pressures of standardization that may accompany the growth and maturity of the hospice industry in the United States.
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Copyright (c) 2017 Jillian A. Tullis, Lori A. Roscoe, Patrick J. Dillon
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