Russwurm Martin, Rabaev Anetta, Hoyer Joachim D, Haas Christian S, Volberg Christian, Russ Philipp
Division of Nephrology, Centre for Internal Medicine, University Hospital Marburg, Philipps University Marburg, Marburg, Germany.
Institute of Pharmacology, Philipps University Marburg, Marburg, Germany.
Kidney Int Rep. 2024 Aug 3;9(10):2981-2987. doi: 10.1016/j.ekir.2024.07.035. eCollection 2024 Oct.
Considering that mortality among patients on dialysis is high, it would be advisable for patients, relatives, and care givers to acknowledge that after dialysis initiation for many patients, the last phase in life has begun. We sought to investigate the frequency of precautionary planning directives, contemplation about the end-of-life (EOL) and embedding of patients' wishes in the interaction with relatives and the treating nephrologists.
In a questionnaire-based interview survey, we investigated the frequency of precautionary planning, EOL wishes, and frequency of relatives' or medical professionals' conversations with patients about those wishes as well as possibly associated demographic, socioeconomic and medical factors. The interviews were conducted by a single investigator in 7 dialysis centers in Germany.
From 349 identified patients, 268 (77%) participated. The participants (36% female) had a median age of 70 (interquartile range [IQR]: 58-80) years and had spent a median of 3 (IQR: 1-7.5) years on dialysis. Overall, 46% of patients on dialysis contemplated their EOL wishes at least occasionally. Of those, 85% talked about EOL wishes with their relatives, whereas 19% discussed them with their nephrologists, yet another 28% would like to have such a discussion with their nephrologist.
Almost half of patients on dialysis contemplate their EOL and the vast majority engage in discussions about that with their relatives. Despite patients being interested, the frequency of consultation of nephrologists on EOL care is low. This study suggests that there is a substantial but unmet need for EOL care consultation for patients on dialysis.
鉴于透析患者的死亡率很高，患者、亲属和护理人员最好认识到，对许多患者而言，开始透析后生命的最后阶段已经开始。我们试图调查预防性规划指令的频率、对临终（EOL）的思考以及患者的意愿在与亲属和主治肾病专家互动中的体现情况。
在一项基于问卷调查的访谈研究中，我们调查了预防性规划、临终意愿的频率，以及亲属或医疗专业人员与患者就这些意愿进行交谈的频率，还有可能相关的人口统计学、社会经济和医学因素。访谈由一名调查员在德国的7个透析中心进行。
在349名确定的患者中，268名（77%）参与了调查。参与者中女性占36%，年龄中位数为70岁（四分位间距[IQR]：58 - 80岁），透析时间中位数为3年（IQR：1 - 7.5年）。总体而言，46%的透析患者至少偶尔会思考他们的临终意愿。其中，85%的患者与亲属谈论过临终意愿，而19%的患者与肾病专家讨论过，另有28%的患者希望与肾病专家进行这样的讨论。
几乎一半的透析患者会思考他们的临终问题，绝大多数患者会与亲属进行相关讨论。尽管患者有兴趣，但肾病专家就临终护理进行咨询的频率较低。这项研究表明，透析患者对临终护理咨询有很大需求，但尚未得到满足。
