Cambia Palliative Care Center of Excellence at UW Medicine, University of Washington, Seattle, Washington, USA.
Department of Health Systems and Population Health, School of Public Health, University of Washington, Seattle, Washington, USA.
J Am Geriatr Soc. 2024 Jul;72(7):2111-2119. doi: 10.1111/jgs.18965. Epub 2024 May 27.
Goals-of-care discussions (GOCD) are uncommon in persons living with dementia (PLWD) despite the likelihood of eventual loss of decisional capacity in the population. The Jumpstart Guide, an existing serious illness communication priming tool, can improve GOCD in certain populations, but has not previously been adapted for use among PLWD and their caregivers.
Using human-centered design (HCD), we adapted the Jumpstart Guide for use with PLWD and their caregivers. We conducted qualitative interviews with clinicians and caregivers of PLWD. Six team members conducted qualitative rapid analysis of interviews leading to the development of summary templates and integrative matrices. Four iterations of the Jumpstart Guide led to the final version.
Thirteen clinicians and 11 caregivers were interviewed. Interviews provided key insights into the unique barriers PLWD and their caregivers face during GOCD, including discomfort with accepting a dementia diagnosis and concern with using "serious illness" to describe dementia, as is commonly done in palliative care. Clinicians described differences in GOCD with PLWD compared to other serious illnesses, and the challenge of getting patients and families to think about future health states. Interviews led to Jumpstart Guide adaptations in the following domains: (1) format and structure, (2) content, and (3) specific language. Suggested changes included prioritizing naming a decision-maker, changing conversation prompts to improve accessibility and understandability, ensuring the Jumpstart Guide could be used with patients as well as their caregivers, and altering language to avoid references to "serious illness" and "abilities."
Using HCD yielded valuable insights from clinicians and caregivers about the unique barriers to conducting GOCD among PLWD and their caregivers. These insights were used to adapt the Jumpstart Guide for use with PLWD and their caregivers, which is currently being tested in a pragmatic randomized controlled trial in outpatient clinics.
尽管人群中最终可能会丧失决策能力，但患有痴呆症的患者（PLWD）的目标关怀讨论（GOCD）仍然很少见。Jumpstart Guide 是一种现有的严重疾病沟通启动工具，可以改善某些人群的 GOCD，但之前并未针对 PLWD 及其护理人员进行改编。
我们使用以人为中心的设计（HCD）对 Jumpstart Guide 进行改编，以用于 PLWD 及其护理人员。我们对 PLWD 的临床医生和护理人员进行了定性访谈。六名团队成员对访谈进行了定性快速分析，从而制定了总结模板和综合矩阵。经过四轮 Jumpstart Guide 的迭代，最终形成了最终版本。
采访了 13 名临床医生和 11 名护理人员。访谈提供了有关 PLWD 和其护理人员在 GOCD 中面临的独特障碍的关键见解，包括对接受痴呆症诊断的不适感以及对使用“严重疾病”来描述痴呆症的担忧，因为这在姑息治疗中很常见。临床医生描述了与 PLWD 相比，GOCD 在其他严重疾病中的差异，以及让患者和家属考虑未来健康状况的挑战。访谈导致 Jumpstart Guide 在以下领域进行了改编：（1）格式和结构，（2）内容和（3）特定语言。建议的更改包括优先指定决策者，更改对话提示以提高可及性和可理解性，确保 Jumpstart Guide 可用于患者及其护理人员，以及改变语言以避免提及“严重疾病”和“能力”。
使用 HCD 从临床医生和护理人员那里获得了有关在 PLWD 及其护理人员中进行 GOCD 的独特障碍的有价值的见解。这些见解被用于改编 Jumpstart Guide 以用于 PLWD 及其护理人员，目前正在门诊诊所进行实用随机对照试验。
