Life and priorities before death: A narrative inquiry of uncertainty and end of life in people with heart failure and their family members

Anita E. Molzahn, Laurene Sheilds, Anne Bruce, Kara Schick-Makaroff, Marcy Antonio, Alexander M. Clark

    Research output: Contribution to journalJournal Articlepeer-review

    9 Citations (Scopus)

    Abstract

    Background: Most patients with advanced heart failure are ill-prepared and poorly supported during the end of life. To date, research has focused primarily on generalized patient accounts of the management or self-care phase of the syndrome. Little research has examined the end of life in depth or from the perspectives of family members. Aims: The purpose of this study is to describe how people diagnosed with heart failure and their family members describe uncertainty related to impending death. Methods and results: A narrative inquiry was undertaken using a social constructionist perspective. Twenty participants took part in over 60 interviews: 12 participants with heart failure (eight male and four female; mean = 67.3 years) and eight family members (mean = 61.6 years) engaged in two in-depth interviews, approximately 3–4 months apart, followed by a telephone follow-up 2–3 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 heart failure 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 heart failure was communicated to them, even if they anticipated the news. Participants wanted frank, open conversations with their healthcare providers that both acknowledged that they were at end of life but did not remove all hope.

    Original languageEnglish
    Pages (from-to)629-637
    Number of pages9
    JournalEuropean Journal of Cardiovascular Nursing
    Volume19
    Issue number7
    DOIs
    Publication statusPublished - 1 Oct. 2020

    Keywords

    • chronic illness
    • end-of-life
    • family
    • Heart failure
    • narrative inquiry
    • qualitative research

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