末期患者家屬參與「預立醫療計劃」的討論行為

Family Members’ Behavioral Presentation during Participation in Terminal Patients’ Advance Care Planning

研究目的：以健康行為理論為視角，探討社區醫療末期患者之家屬參與患者的預立醫療計劃（advance care planning, ACP）討論，於跨理論模式之不同行為改變階段（前思考期、思考期、準備期、行動期、維持期）的特徵。研究方法：個案研究法。於2014年12月至2015年5月間，邀請十位末期病患家屬，就其參與ACP討論經驗接受個別訪談。訪談資料以理論性主題分析法分析。研究結果：本研究整理了討論行為在五個改變階段的特徵，並歸納以下四個不同階段的區分因素：（1）討論意圖：前思考期缺乏討論意圖或對議題持迴避態度。（2）個人反思複雜程度：思考期僅對議題有簡單直覺的考量；準備期可提出較細緻具體的理由；行動期能連結抽象價值觀進行思考。（3）溝通主動性：行動期開始有主動與他人就議題交流討論的行動。（4）持續反思：透過持續反思由行動期進展至維持期。研究結論：（1）將參與末期病患之ACP討論視為家屬的健康行為，在臨床應用上有積極預防的意義。（2）以改變階段觀點結構「討論行為」除了可具體化行為內涵，亦凸顯行為的複雜性。（3）不同改變階段適合不同的改變促進策略。（4）「疾病因應之文化意涵」及「醫病關係」是未來促進ACP討論時需留心的議題。

Purpose: In Taiwan, terminal patients’ advance directives are largely handled by family members. However, few studies have investigated family members’ experiences. We treated family members’ participation in patients’ advance care planning as a kind of health behavior that prepares family members for future psychosocial stress, which they may encounter while caring for the patient in the terminal stages. We adopted the transtheoretical model as a framework. This model posits that health behavior change goes through 6 stages (precontemplation, contemplation, preparation, action, maintenance, and termination), which correspond to different stages of preparation in terms of motivation and cognition. The aim of this study was to investigate characteristics of terminal patients’ family members’ behavioral presentations at different stages of change while participating in patients’ advance care planning in a home-based care setting. Methods: Using a case study approach, we conducted 10 one-on-one, semi-structured interviews with family members of terminal patients. Verbatim interview data were submitted to thematic analysis using a deductive approach focused on the 5 stages of health behavior change from the transtheoretical model in order to categorize each participant’s preparedness for advance care planning discussions. Results: We identified the concrete characteristics of each stage of change while participating in discussions of advance care planning. We derived 4 key characteristics to distinguish the stages of change. (1) “Avoidant attitude” was the key characteristic of the precontemplation stage. (2) Levels of concreteness and elaboration in “reflection and expression of a personal viewpoint” differentiated between the contemplation, preparation, and action stages. (3) “Activeness in communication” distinguished the preparation stage from the action stage. (4) “Recurrence of reflection” distinguished the maintenance stage from the action stage. Conclusions: (1) Casting participation in patients’ advance care planning discussions as a kind of health behavior prepares family members not only for patients’ upcoming bio-psycho-social problems that correspond to the patient’s dying process but also for their own issues of life and death. (2) The stages of change described by the transtheoretical model help to depict the behavior surrounding advance care planning in concrete terms, and to reveal the complexity of discussion behavior. (3) Family members in different stages of advance care planning discussion have a different cognitive and motivational basis for behavioral change, and can profit from different intervention strategies. (4) Cultural indications for coping with illness and the physician-patient relationship need to be borne in mind in future work on promoting family participation in advance care planning.