TY - JOUR
T1 - Life and priorities before death
T2 - A narrative inquiry of uncertainty and end of life in people with heart failure and their family members
AU - Molzahn, Anita E.
AU - Sheilds, Laurene
AU - Bruce, Anne
AU - Schick-Makaroff, Kara
AU - Antonio, Marcy
AU - Clark, Alexander M.
N1 - Publisher Copyright:
© The European Society of Cardiology 2020.
PY - 2020/10/1
Y1 - 2020/10/1
N2 - 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.
AB - 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.
KW - Heart failure
KW - chronic illness
KW - end-of-life
KW - family
KW - narrative inquiry
KW - qualitative research
UR - http://www.scopus.com/inward/record.url?scp=85084577022&partnerID=8YFLogxK
U2 - 10.1177/1474515120918355
DO - 10.1177/1474515120918355
M3 - Journal Article
C2 - 32340476
AN - SCOPUS:85084577022
SN - 1474-5151
VL - 19
SP - 629
EP - 637
JO - European Journal of Cardiovascular Nursing
JF - European Journal of Cardiovascular Nursing
IS - 7
ER -