Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, Dublin, Ireland.
School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland.
BMJ Support Palliat Care. 2023 Dec;13(4):374-385. doi: 10.1136/bmjspcare-2022-003525. Epub 2022 Mar 22.
BACKGROUND: Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood. OBJECTIVES: To identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care. METHODS: A systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text. RESULTS: After full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other's preferences for care. Patients' advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers. CONCLUSIONS: Patients and family caregivers in palliative care can accommodate each other's preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness.
背景:在姑息治疗中,决策通常涉及患者和家庭照顾者。然而,姑息治疗中患者和家庭照顾者在决策方面的一致性和分歧是如何表现和发挥作用的,目前还不是很清楚。
目的:确定支持姑息治疗中患者和家庭照顾者在姑息治疗偏好和决策方面的一致性和分歧的关键因素和/或过程;并确定患者和家庭照顾者如何管理姑息治疗中决策方面的分歧。
方法:对 2000 年 1 月至 2021 年 6 月期间发表的原始研究进行了系统评价和叙述性综合,使用了以下数据库:Embase;Medline;CINAHL;AMED;Web of Science;PsycINFO;PsycARTICLES;和 Social Sciences Full Text。
结果:经过全文审查,有 39 项研究被纳入综合分析。这些研究主要集中在临终关怀以及患者和家庭照顾者对患者护理的偏好上。我们发现,姑息治疗中患者和家庭照顾者之间的分歧可能表现为关系冲突,并可能源于对彼此护理偏好缺乏了解和沟通。患者病情的进展和即将死亡,以及对未来护理包括预先护理计划的开放对话,可以促进患者和家庭照顾者之间的共识。
结论:姑息治疗中的患者和家庭照顾者可以相互适应对方的护理偏好。需要进一步的研究来充分了解在病情进展的背景下,患者和家庭照顾者如何达成共识。
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