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US Hospice Structure and its Implications for the “Right to Die” Debate

An Interdisciplinary Study of the “Feeling of Being a Burden to Others”

Abstract

This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others (FBO). A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has worsened over time. Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide (PAS). The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents.

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Notes

  1. 1.

    “Amberview Hospice” is a pseudonym. Our Lady of Perpetual Help Home is not, as consonant with my agreement with the home’s management.

  2. 2.

    “Simon” is a pseudonym. All the individuals mentioned in the ethnography have been de-identified to preserve their anonymity.

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Correspondence to Harold Braswell.

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Braswell, H. US Hospice Structure and its Implications for the “Right to Die” Debate. Bioethical Inquiry 16, 525–534 (2019). https://doi.org/10.1007/s11673-019-09938-w

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Keywords

  • Feeling of being a burden to others
  • Hospice and palliative care
  • Disability studies
  • Euthanasia
  • Familial caregiving