Pohl Annika, Liljeroos Maria, Jaarsma Tiny
Physician in Family Medicine and Palliative Medicine, LAH Norrköping, Vrinnevi Hospital, Norrköping, Sweden.
Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden.
PLoS One. 2025 Jul 23;20(7):e0328993. doi: 10.1371/journal.pone.0328993. eCollection 2025.
Discussions about severe illness and the coming death do not often take place with patients with heart failure and their family. We therefore aimed to investigate how patients with end-stage heart failure and their family who discussed terminal illness and the imminence of death with a physician, experienced such communication, how they handled life emotionally and practically after said discussions, and if/how this changed over time.
A longitudinal interview study. Ten patients with end-stage heart failure and their closest kin were visited by a physician at home and discussed terminal illness during one visit and the imminence of death during another visit. They were interviewed three times about how they experienced the communication and how they handled life in this situation and in relation to the discussions. The interviews were analysed using qualitative thematic analysis by Braun and Clarke.
Two main themes and five subthemes were found. The first theme was 'an honest and clear message hurts, but it would be worse if nothing was said', and the subthemes included information on the experiences of communication, the desired level of communication by patients and family members and factors facilitating communication. The second theme was 'A clear message helps in handling life' with the subthemes of coping psychologically and practically. The findings indicate that for some patients and family members it was hard to have discussions about end-stage heart failure and the imminence of death. However, they found the discussions important and were happy that the information was not withheld from them. The discussions helped in handling life and most patients and family seemed to have found a way to accept and handle the situation. Practical planning often did not start until they heard from the physician that death could come soon.
This study confirms that patients and family members want and appreciate discussions about severe illness and the imminence of death and find them important. This can encourage physicians to change behaviour and engage in honest discussions, and to educate and train colleagues to do the same.
关于重症和即将到来的死亡的讨论，在心力衰竭患者及其家人中并不常见。因此，我们旨在调查终末期心力衰竭患者及其家人与医生讨论绝症和死亡临近情况时，他们如何体验这种沟通，在上述讨论后他们在情感和实际生活中如何应对，以及这是否/如何随时间变化。
一项纵向访谈研究。十位终末期心力衰竭患者及其最亲近的亲属在家中接受医生拜访，一次拜访讨论绝症，另一次拜访讨论死亡临近情况。就他们如何体验沟通以及在这种情况下和与讨论相关的生活中如何应对，对他们进行了三次访谈。访谈采用布劳恩和克拉克的定性主题分析法进行分析。
发现了两个主要主题和五个子主题。第一个主题是“诚实清晰的信息令人痛苦，但不说更糟糕”，子主题包括沟通体验信息、患者和家庭成员期望的沟通水平以及促进沟通的因素。第二个主题是“清晰的信息有助于应对生活”，子主题包括心理和实际应对。研究结果表明，对于一些患者和家庭成员来说，讨论终末期心力衰竭和死亡临近情况很困难。然而，他们认为这些讨论很重要，并且很高兴没有对他们隐瞒信息。这些讨论有助于应对生活，大多数患者和家属似乎已经找到了接受和应对这种情况的方法。实际规划通常直到他们从医生那里得知死亡可能很快到来才开始。
本研究证实患者和家属希望并重视关于重症和死亡临近情况的讨论，并认为这些讨论很重要。这可以鼓励医生改变行为，进行诚实的讨论，并教育和培训同事也这样做。
