Faculty of Nursing, University of Alberta, Canada.
School of Nursing, University of Victoria, Canada.
Eur J Cardiovasc Nurs. 2020 Oct;19(7):629-637. doi: 10.1177/1474515120918355. Epub 2020 Apr 27.
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.
The purpose of this study is to describe how people diagnosed with heart failure and their family members describe uncertainty related to impending death.
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.
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.
大多数晚期心力衰竭患者在生命末期都准备不足且支持不足。迄今为止，研究主要集中在对综合征管理或自我护理阶段的一般患者描述上。很少有研究深入探讨生命末期或从家庭成员的角度来探讨这一问题。
本研究旨在描述心力衰竭患者及其家属如何描述与即将到来的死亡相关的不确定性。
采用社会建构主义的观点进行了叙述性探究。20 名参与者参与了超过 60 次访谈：12 名心力衰竭患者（8 名男性和 4 名女性；平均年龄 67.3 岁）和 8 名家庭成员（平均年龄 61.6 岁）进行了两次深入访谈，大约相隔 3-4 个月，之后在 2-3 个月后进行电话随访。确定了六个关键主题/故事情节。这些包括：医生提供的预后信息；无论何时我去世，我都会去世；我对失去并不陌生，但……；在生命的脆弱中继续前进；最终在未知中生活；以及准备的需要。
晚期心力衰竭患者和家属的死亡和临终的六个关键故事情节是一致的。他们希望与医生更好地沟通。许多参与者对医生如何向他们传达晚期心力衰竭的预后表示不满，即使他们已经预料到了这个消息。参与者希望与医疗保健提供者进行坦诚、开放的对话，承认他们已经到了生命末期，但不要消除所有的希望。
