The Motivations and Consequences of Dying at Home: Family Caregiver Perspectives

Jacquelyn J. Benson, Benyamin Schwarz, Ruth Brent Tofle, Debra Parker Oliver

Research output: Contribution to journalArticlepeer-review

6 Scopus citations

Abstract

Although ample research suggests that individuals prefer to die at home, the realities of a home death experience, from the perspective of family members, are not well understood. The following study addresses this gap in knowledge via a narrative analysis about the process of dying at home. Five family caregivers participated in semistructured interviews about their experiences witnessing and supporting the end-of-life process of an older family member who died at home. Their stories paint a vivid picture about the motivations and consequences of the experience, including themes such as caregivers’ immense feelings of uncertainty regarding their caregiving abilities and decision making, the significance of the home environment as a symbol of comfort and security, the influence of family and social networks, and “dying well” as a social justice issue. Overall, the caregivers’ narratives support the notion that being at home is considered an essential aspect of ”dying well.” However, the narratives also demonstrate that dying at home presents many challenges for family members, especially to those with limited resources and social support. Thus, the authors caution against viewing the home death as a proxy for a good death.

Original languageEnglish
Pages (from-to)278-336
Number of pages59
JournalJournal of Housing for the Elderly
Volume32
Issue number3-4
DOIs
StatePublished - Oct 2 2018

Keywords

  • death and dying
  • end of life
  • Family caregiving
  • home
  • narrative analysis

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