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死亡时刻之后:重症监护病房临终住院后家庭的悲伤与丧亲之痛经历

Beyond the hour of death: Family experiences of grief and bereavement following an end-of-life hospitalization in the intensive care unit.

作者信息

Bandini Julia I

机构信息

Brandeis University, USA.

RAND Corporation, USA.

出版信息

Health (London). 2022 May;26(3):267-283. doi: 10.1177/1363459320946474. Epub 2020 Aug 4.

Abstract

End-of-life decision-making is an important area of research, and few sociological studies have considered family grief in light of end-of-life decision-making in the hospital. Drawing on in-depth interviews with family members in the intensive care unit (ICU) during an end-of-life hospitalization and into their bereavement period up to six months after the death of the patient, this article examines bereaved family members' experiences of grief by examining three aspects from the end-of-life hospitalization and decision-making in the ICU that informed their subsequent bereavement experiences. First, this article explores how the process of advance care planning (ACP) shaped family experiences of grief, by demonstrating that even prior informal conversations around end-of-life care outside of having an advance directive in the hospital was beneficial for family members both during the hospitalization and afterwards in bereavement. Second, clinicians' compassionate caring for both patients and families through the "little things" or small gestures were important to families during the end-of-life hospitalization and afterwards in bereavement. Third, the transition time in the hospital before the patient's death facilitated family experiences of grief by providing a sense of support and meaning in bereavement. The findings have implications for clinicians who provide end-of-life care by highlighting salient aspects from the hospitalization that may shape family grief following the patient's death. Most importantly, the notion that ACP as a social process may be a "gift" to families during end-of-life decision-making and carry through into bereavement can serve as a motivator to engage patients in ACP.

摘要

临终决策是一个重要的研究领域,很少有社会学研究从医院临终决策的角度考虑家庭悲痛。本文通过对重症监护病房(ICU)中患者临终住院期间及患者去世后长达六个月的丧亲期间家庭成员的深入访谈,从ICU临终住院和决策的三个方面来审视丧亲家庭成员的悲痛经历,这些方面影响了他们随后的丧亲经历。首先,本文探讨了预先护理计划(ACP)的过程如何塑造家庭的悲痛经历,证明即使在医院没有预先指示的情况下围绕临终护理进行的非正式谈话,对家庭成员在住院期间和丧亲之后都是有益的。其次,临床医生通过“小事”或小动作对患者和家庭的关怀,在临终住院期间和丧亲之后对家庭都很重要。第三,患者死亡前在医院的过渡时期,通过在丧亲期间提供支持感和意义感,促进了家庭的悲痛经历。这些发现对提供临终护理的临床医生具有启示意义,突出了住院期间可能影响患者去世后家庭悲痛的显著方面。最重要的是,ACP作为一个社会过程,在临终决策期间可能是给家庭的一份“礼物”,并延续到丧亲过程中的这一观念,可以激励患者参与ACP。

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