Department of Medicine and Public Health, Divisions of Nephrology and Palliative Care, University of Rochester Medical Center, Rochester, New York.
Division of Nephrology and Kidney Research Institute, University of Washington, Seattle, Washington.
Clin J Am Soc Nephrol. 2021 Nov;16(11):1630-1638. doi: 10.2215/CJN.04860421. Epub 2021 Sep 10.
People receiving maintenance dialysis must often rely on family members and other close persons to make critical treatment decisions toward the end of life. Contemporary data on family members' understanding of the end-of-life wishes of members of this population are lacking.
DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Among 172 family members of people undergoing maintenance dialysis, we ascertained their level of involvement in the patient's care and prior discussions about care preferences. We also compared patient and family member responses to questions about end-of-life care using percentage agreement and the -statistic.
The mean (SD) age of the 172 enrolled family members was 55 (±17) years, 136 (79%) were women, and 43 (25%) were Black individuals. Sixty-seven (39%) family members were spouses or partners of enrolled patients. A total of 137 (80%) family members had spoken with the patient about whom they would want to make medical decisions, 108 (63%) had spoken with the patient about their treatment preferences, 47 (27%) had spoken with the patient about stopping dialysis, and 56 (33%) had spoken with the patient about hospice. Agreement between patient and family member responses was highest for the question about whether the patient would want cardiopulmonary resuscitation (percentage agreement 83%, =0.31), and was substantially lower for questions about a range of other aspects of end-of-life care, including preference for mechanical ventilation (62%, 0.21), values around life prolongation versus comfort (45%, 0.13), preferred place of death (58%, 0.07), preferred decisional role (54%, 0.15), and prognostic expectations (38%, 0.15).
Most surveyed family members reported they had spoken with the patient about their end-of-life preferences but not about stopping dialysis or hospice. Although family members had a fair understanding of patients' cardiopulmonary resuscitation preferences, most lacked a detailed understanding of their perspectives on other aspects of end-of-life care.
接受维持性透析的患者在生命末期往往需要依靠家属和其他亲近的人来做出关键的治疗决策。目前缺乏关于该人群家属对患者临终意愿的理解的当代数据。
设计、地点、参与者和测量：在 172 名接受维持性透析的患者的家属中，我们确定了他们在患者护理中的参与程度以及之前关于护理偏好的讨论。我们还使用百分比一致性和 -统计比较了患者和家属对临终关怀问题的回答。
172 名入组家属的平均（SD）年龄为 55（±17）岁，136（79%）为女性，43（25%）为黑人。67（39%）名家属是入组患者的配偶或伴侣。共有 137（80%）名家属与他们想要做出医疗决策的患者进行了交谈，108（63%）名家属与患者讨论了他们的治疗偏好，47（27%）名家属与患者讨论了停止透析，56（33%）名家属与患者讨论了临终关怀。患者和家属回答的一致性最高的问题是患者是否希望进行心肺复苏（百分比一致性为 83%，=0.31），而对于一系列其他临终关怀方面的问题，一致性则要低得多，包括对机械通气的偏好（62%，0.21）、对延长生命与舒适的价值取向（45%，0.13）、首选死亡地点（58%，0.07）、首选决策角色（54%，0.15）和预后预期（38%，0.15）。
大多数接受调查的家属报告说，他们已经与患者讨论过他们的临终偏好，但没有讨论过停止透析或临终关怀。尽管家属对患者心肺复苏的偏好有一定的了解，但大多数家属对患者在临终关怀其他方面的观点缺乏详细的了解。
