1 School of Psychological Sciences, The University of Melbourne, Parkville, VIC, Australia.
2 Advance Care Planning Program, Northern Health, Bundoora, VIC, Australia.
Palliat Med. 2019 Jul;33(7):802-811. doi: 10.1177/0269216319845794. Epub 2019 May 3.
It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and family caregivers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end-of-life.
To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death.
Semi-structured interviews with patients and family caregivers, which were analysed thematically using qualitative description.
SETTING/PARTICIPANTS: A total of 17 participants (8 patients and 9 caregivers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative homecare organisation in Melbourne, Australia.
The process of forming location preferences was shaped by uncertainty relating to the illness, the caregiver and the services. Patients and caregivers dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, patients and caregivers expressed their choices as contextual, personal, relational, conditional and flexible preferences.
These findings suggest that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.
人们常说，绝症患者更喜欢在家中接受临终关怀。然而，目前尚不清楚这些偏好是如何形成的，如果患者和家属照顾者的决策过程相似，以及对护理地点和死亡地点的偏好是否存在差异。了解这些细微差别对于支持人们做出决策并最终在临终时提供更好的护理至关重要。
深入了解绝症患者及其家属如何决定首选的护理地点和死亡地点。
对来自澳大利亚墨尔本一家急性姑息治疗医院病房、一家亚急性临终关怀病房和一家姑息治疗家庭护理机构的 17 名患者（8 名）和家属照顾者（9 名）进行半结构化访谈，采用定性描述的方法进行主题分析。
地点/参与者：共 17 名参与者（8 名患者和 9 名照顾者），他们是从澳大利亚墨尔本的一家急性姑息治疗医院病房、一家亚急性临终关怀病房和一家姑息治疗家庭护理组织招募而来。
形成地点偏好的过程受到与疾病、照顾者和服务相关的不确定性的影响。患者和照顾者在思想、情感和行动层面上处理这种不确定性。在这个过程的最后，患者和照顾者将他们的选择表达为情境性、个人化、关系性、有条件和灵活的偏好。
这些发现表明，在许多情况下，临终决策并不以明确和稳定的选择结束。了解偏好的可变性及其形成过程的原因对临床医生和研究人员都具有重要意义。
