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LIFE AND PRIORITIES BEFORE DEATH: A NARRATIVE INQUIRY OF UNCERTAINTY AND END OF LIFE IN PEOPLE WITH HEART FAILURE AND THEIR FAMILY MEMBERS

  • Author(s) / Creator(s)
  • Background: Most patients with advanced heart failure (HF) are ill-prepared and poorly supported during the end of life (EOL). To date, research has focused primarily on generalized patient accounts of the management or self-care phase of the syndrome. Little research has examined EOL in depth or from the perspectives of family members.
    Aims: To describe how people diagnosed with HF and their family members describe uncertainty related to impending death.
    Methods and Results: A narrative inquiry was undertaken using a social constructionist perspective. 20 participants took part in over 60 interviews: 12 participants with HF (8 male and 4 female; mean=67.3 years) and 8 family members (mean=61.6 years) engaged in two in-depth interviews, approximately three to four months apart, followed by a telephone follow-up two to three months later. Six key themes/storylines were identified. These included: prognosis messages received from physicians; whenever I die, I die; loss isn’t new to me but….; carrying on amidst the fragility of life; ultimately living not knowing; and the need to prepare.
    Conclusion: The six key storylines of death and dying with advanced HF were consistent for both patients and family members. There was a desire for better communication with physicians. Many participants were critical of how the prognosis of advanced HF was communicated to them, even if they anticipated the news. Participants wanted frank, open conversations with their health care providers that both acknowledged that they were at EOL but did not remove all hope.

  • Date created
    2020-01-01
  • Subjects / Keywords
  • Type of Item
    Article (Published)
  • DOI
    https://doi.org/10.7939/r3-qa4n-5m16
  • License
    Attribution 4.0 International