Department of Nephrology, Odense University Hospital, Odense, Denmark.
Department of Clinical Research, Family Focused Healthcare Research Center (FaCe), University of Southern Denmark, Odense, Denmark.
J Ren Care. 2022 Sep;48(3):154-167. doi: 10.1111/jorc.12399. Epub 2021 Oct 7.
Advance care planning is a process that supports adults of any age and stage of illness in understanding and sharing their values, life goals, and preferences regarding medical care. Chronic kidney disease is a progressive and lifelong disease. Close relatives often represent patients' most important support. Advance care planning is recommended to be a continuous part of a person's ongoing treatment and is not solely related to end-of-life care. However, no studies have focused on advanced care planning for patients with chronic kidney disease earlier than the onset of a terminal illness.
The aim is to describe experiences of and perspectives on advance care planning among patients with chronic kidney disease and their close relatives.
We conducted a meta-ethnography of studies that used individual, dyad, and focus group interviews. We searched five electronic databases: PubMed, Cinahl, Embase, PsycINFO, and Scopus and reference lists of relevant articles.
Seven articles were included. Participants had a need for advance care planning to make shared decisions about treatment and everyday life. The responsibility for initiating advance care planning lay with the healthcare professionals. Differences between advance care planning goals among patients, relatives, and healthcare professionals complicated the advance care planning process. A focus on day-to-day care at the expense of focusing on advance care planning gave an impression of a lack of competencies and interest. For some patients, the involvement of relatives was of significant value; however, it could be associated with burden and pressure.
Patients with chronic kidney disease and their families have a need for early advance care planning before dialysis or transplantation is initiated, so as to facilitate shared decision-making related to treatment options and everyday life. It is important that patients, their relatives, and healthcare professionals share the same advance care planning goals, to get sufficient discussions and thus, achieve clarity about prognosis, medical care, and the illness trajectory.
预先医疗照护计划是一个支持任何年龄和疾病阶段的成年人了解并分享其对医疗照护的价值观、生活目标和偏好的过程。慢性肾脏病是一种进行性的、终身性疾病。近亲属通常是患者最重要的支持。预先医疗照护计划被建议作为一个人持续治疗的持续组成部分，而不仅仅与临终关怀相关。然而，尚无研究关注慢性肾脏病患者在疾病终末期之前的预先医疗照护计划。
本研究旨在描述慢性肾脏病患者及其近亲属对预先医疗照护计划的体验和观点。
我们对使用个体、二人组和焦点小组访谈的研究进行了荟萃元分析。我们检索了五个电子数据库：PubMed、Cinahl、Embase、PsycINFO 和 Scopus 以及相关文章的参考文献列表。
共纳入 7 篇文章。参与者需要预先医疗照护计划来共同决策治疗和日常生活。启动预先医疗照护计划的责任在于医疗保健专业人员。患者、亲属和医疗保健专业人员之间预先医疗照护计划目标的差异使预先医疗照护计划过程复杂化。关注日常护理而忽视预先医疗照护计划给人一种缺乏能力和兴趣的印象。对于一些患者来说，近亲属的参与具有重要价值；然而，这可能伴随着负担和压力。
在开始透析或移植之前，慢性肾脏病患者及其家属需要进行早期预先医疗照护计划，以促进与治疗选择和日常生活相关的共同决策。重要的是，患者、其亲属和医疗保健专业人员应具有相同的预先医疗照护计划目标，以进行充分的讨论，从而明确预后、医疗照护和疾病轨迹。
