Centre for Research Ethics and Bioethics (CRB), Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
Department of Research and Development, Region Kronoberg, Växjö, Sweden.
BMC Palliat Care. 2024 Apr 5;23(1):91. doi: 10.1186/s12904-024-01412-8.
The aim of this study was to explore how palliative care staff reason about the autonomy challenge that arises when a patient who has first said he wants full information appears to change his mind and rejects being informed.
The study had a qualitative and exploratory design. Participants (physicians, registred nurses, social workers, physiotherapists and occupational therapists) were recruited from palliative care teams in southern Sweden. Six separate focus group interviews with a total number of 33 participants were conducted. The teams were asked to discuss a fictional case of a man who first wants, then rejects, information about his situation. The interviews were audiotaped and transcribed verbatim. Reflexive thematic analysis following Braun and Clarke was undertaken to analyse data.
The analysis resulted in three themes: Patients have a right to reject information, Questioning whether this patient WANTS to reject information and There are other values at stake, too. Although participants endorsed a right to reject information, they were unsure whether this right was relevant in this situation, and furthermore felt that it should be balanced against counteracting factors. The effect of such balancing was that participants would aim to find a way to present relevant information to the patient, but in a probing and flexible way.
In their work with dying patients, palliative care staff meet many autonomy challenges. When faced with a choice to withhold information as per a patient's wishes, or to provide information with the patient's best interest in mind, staff find it hard to balance competing values. Staff also find it hard to balance their own interests against a purely professional stance. The overall strategy seems to be to look for caring ways to impart the information.
本研究旨在探讨当一位最初表示希望获得全面信息的患者似乎改变主意并拒绝被告知时，姑息治疗人员如何应对自主权挑战。
本研究采用定性和探索性设计。参与者（医生、注册护士、社会工作者、物理治疗师和职业治疗师）从瑞典南部的姑息治疗团队中招募。进行了六次单独的焦点小组访谈，共有 33 名参与者。团队被要求讨论一个虚构的案例，即一名男子最初想要了解自己的情况，但随后拒绝了。采访进行了录音并逐字转录。采用 Braun 和 Clarke 的反思性主题分析对数据进行了分析。
分析结果产生了三个主题：患者有权拒绝信息、质疑该患者是否真的想拒绝信息以及还有其他价值观需要考虑。尽管参与者认可拒绝信息的权利，但他们不确定这种权利在这种情况下是否相关，并且还认为应该平衡其他因素。这种平衡的结果是，参与者将旨在寻找一种向患者提供相关信息的方法，但要以试探性和灵活的方式进行。
在为临终患者提供服务时，姑息治疗人员会遇到许多自主权挑战。当面临按照患者的意愿隐瞒信息或出于患者的最佳利益提供信息的选择时，工作人员发现很难平衡相互竞争的价值观。工作人员还发现很难平衡自己的利益与纯粹的专业立场。总体策略似乎是寻找关怀的方式来传达信息。
