Department of Family Medicine, McMaster University, DBHSC 100 Main Street West, 5th floor, Hamilton, Ontario, L8P 1H6, Canada.
Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada.
BMC Fam Pract. 2020 May 25;21(1):94. doi: 10.1186/s12875-020-01167-0.
Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people's expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients' wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP.
In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients' knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper.
One hundred two participants provided an analyzable response to the survey when asked why they haven't talked to someone about ACP. Two hundred fifty-four answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The Medical Doctor (MD) should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It's not a priority; and 8. A lack of knowledge about ACP.
Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients' knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers.
尽管以患者为中心的护理在所有医学专业中变得越来越重要，但在临终关怀方面，研究表明，所开的治疗方法并不总是与患者表达的偏好一致。在初级保健环境中，让患者及其家属参与预先医疗指示（ACP）规划，可以提高患者的意愿与患者无法为自己发声时所接受的医疗服务之间的一致性。本研究旨在更好地了解老年患者在与家属和家庭医生谈论 ACP 时所面临的障碍。
在这项多地点横断面研究中，有三个关于患者发现与家属或家庭医生讨论 ACP 困难的原因的自由文本问题，是患者对 ACP 的知识和参与情况的自我管理问卷的一部分。该问卷包括封闭式问题，后面跟着三个开放式问题，在加拿大三个省的 20 个家庭实践中进行了分发。使用主题分析对自由文本回答进行分析，并以此为基础撰写本文。
当被问及为什么他们没有与某人谈论 ACP 时，102 名参与者对调查做出了可分析的回答。254 名回答了与医生交谈的问题，340 名回答了与家人交谈的问题。从自由文本回答分析中出现了八个不同的主题：1. 他们太年轻，不适合 ACP；2. 这个话题太情绪化；3. 医生应该负责提出 ACP；4. 担心会对医患关系产生负面影响；5. 预约时间不够；6. 担心家庭动态；7. 这不是优先事项；8. 缺乏对 ACP 的了解。
我们的样本中的患者描述了 ACP 讨论的许多障碍，包括对这些讨论可能对与家庭成员和家庭医生的关系产生的影响的担忧，以及与患者对 ACP 的重要性、责任或相关性的认识、解释和理解相关的问题。家庭医生可能具有独特的优势，可以利用他们与患者之间的纵向、以人为本的关系来减轻其中的一些障碍。
