Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
Department of Health Sciences, Luleå University of Technology, Sweden.
Gerontologist. 2020 Sep 15;60(7):1332-1342. doi: 10.1093/geront/gnaa012.
There is a substantial body of research on advance care planning (ACP), often originating from English-speaking countries and focused on health care settings. However, studies of content of ACP conversations in community settings remain scarce. We therefore explore community-dwelling, older adults' reasoning about end-of-life (EoL) values and preferences in ACP conversations.
In this participatory action research project, planned and conducted in collaboration with national community-based organizations, we interviewed 65 older adults without known EoL care needs, about their values and preferences for future EoL care. Conversations were stimulated by sorting and ranking statements in a Swedish version of GoWish cards, called the DöBra cards, and verbatim transcripts were analyzed inductively.
While participants shared some common preferences about EoL care, there was great variation among individuals in how they reasoned. Although EoL preferences and prioritizations could be identical, different individuals explained these choices very differently. We exemplify this variation using data from four participants who discussed their respective EoL preferences by focusing on either physical, social, existential, or practical implications.
A previously undocumented benefit of the GoWish/DöBra cards is how the flexibility of the card statements support substantial discussion of an individual's EoL preferences and underlying values. Such in-depth descriptions of participants' reasoning and considerations are important for understanding the very individual nature of prioritizing EoL preferences. We suggest future users of the DöBra/GoWish cards consider the underlying reasoning of individuals' prioritizations to strengthen person-centeredness in EoL conversations and care provision.
关于预先医疗指示(ACP)的研究很多,这些研究通常来自英语国家,且侧重于医疗保健环境。然而,关于社区环境中 ACP 对话内容的研究仍然很少。因此,我们探讨了社区居住的老年人群在 ACP 对话中关于生命末期(EoL)价值观和偏好的推理。
在这个参与式行动研究项目中,我们与全国社区组织合作进行计划和实施,对 65 名没有已知 EoL 护理需求的老年人进行了采访,询问他们对未来 EoL 护理的价值观和偏好。通过对瑞典版 GoWish 卡片(称为 DöBra 卡片)中的陈述进行分类和排序来激发对话,并用逐字记录的谈话记录进行归纳分析。
虽然参与者对 EoL 护理有一些共同的偏好,但个体之间的推理存在很大差异。尽管 EoL 偏好和优先级可能相同,但不同的人对这些选择的解释却大不相同。我们通过来自四个参与者的数据来说明这种差异,他们通过关注身体、社会、存在或实际影响来讨论各自的 EoL 偏好。
GoWish/DöBra 卡片的一个以前未被记录的好处是,卡片陈述的灵活性如何支持对个人的 EoL 偏好和潜在价值观进行大量讨论。这种对参与者推理和考虑的深入描述对于理解 EoL 偏好的个人性质非常重要。我们建议未来的 DöBra/GoWish 卡片使用者考虑个人优先级背后的推理,以加强 EoL 对话和护理提供中的以人为主导。