Department of Oncology, Aarhus University Hospital, Aarhus C, Denmark.
The Palliative Team, Aarhus University Hospital, Aarhus C, Denmark.
BMJ Support Palliat Care. 2017 Sep;7(3):335-340. doi: 10.1136/bmjspcare-2015-000886. Epub 2015 Sep 30.
Advance care planning (ACP) is a process of discussing and recording patients' preferences for future care, aiming to guide healthcare decisions at the end of life (EOL).
To explore nuances in the long-term impact of ACP by studying patient and relative experiences.
A qualitative follow-up interview study. Interviews were recorded, transcribed and analysed using thematic synthesis.
SETTING/PARTICIPANTS: 3 patients with a life-limiting disease (lung or heart disease), affiliated with a major Danish hospital, and 7 relatives were interviewed 1 year after participating in an ACP discussion.
The experiences were diverse. Some patients and relatives felt 'relieved', 'more secure' and more in control due to ACP. To some, ACP had led to open communication rather than 'beating around the bush', and to spending more quality time together. However, others perceived ACP as irrelevant. Some stated that the patient's wishes had not been met regardless of ACP. Others felt that EOL questions cannot be realistically considered until 'you're in the middle of it', because many factors are involved. In one case, participating in ACP led to a patient-relative conflict, resulting in EOL issues being 'tucked away'.
The study reveals great diversity in patient and relative experiences of ACP. The study challenges previous research which mainly emphasises ACP as a valuable tool to optimise EOL care. This study stresses the importance of awareness of the highly individual nature of preferences and needs of patients and relatives regarding information, involvement and communication about EOL care.
预先医疗照护计划（ACP）是一个讨论和记录患者对未来医疗偏好的过程，旨在为生命末期（EOL）的医疗决策提供指导。
通过研究患者和家属的经验，探讨 ACP 对长期影响的细微差别。
一项定性随访访谈研究。对访谈进行录音、转录和分析，采用主题合成法。
地点/参与者：3 名患有绝症（肺部或心脏疾病）的患者，与丹麦一家大医院有关联，7 名家属在参与 ACP 讨论一年后接受了访谈。
经验各不相同。一些患者和家属感到“如释重负”、“更有保障”、“更能掌控局面”，因为他们进行了 ACP。对一些人来说，ACP 促进了开诚布公的沟通，而不是“拐弯抹角”，并让他们有更多的时间在一起。然而，其他人则认为 ACP 无关紧要。一些人表示，无论是否进行 ACP，患者的意愿都没有得到满足。其他人则认为，只有在“身临其境”时，才能现实地考虑 EOL 问题，因为涉及到许多因素。在一个案例中，参与 ACP 导致了患者-家属冲突，导致 EOL 问题被“搁置”。
该研究揭示了患者和家属在 ACP 方面的经验存在很大差异。该研究挑战了之前主要强调 ACP 作为优化 EOL 护理的有价值工具的研究。这项研究强调了对患者和家属关于 EOL 护理的信息、参与和沟通的偏好和需求的高度个体化性质的认识的重要性。
