Rutz Voumard Rachel, Dugger Kaley M, Kiker Whitney A, Barber Jason, Borasio Gian Domenico, Curtis J Randall, Jox Ralf J, Creutzfeldt Claire J
Department of Neurology, Harborview Medical Center, University of Washington, Seattle, WA, United States.
Department of Palliative and Supportive Care, Lausanne University Hospital, University of Lausanne, Lausanne, Switzerland.
Front Neurol. 2021 Sep 17;12:710783. doi: 10.3389/fneur.2021.710783. eCollection 2021.
Patients with severe acute brain injury (SABI) lack decision-making capacity, calling on families and clinicians to make goal-concordant decisions, aligning treatment with patient's presumed goals-of-care. Using the family perspective, this study aimed to (1) compare patient's goals-of-care with the care they were receiving in the acute setting, (2) identify patient and family characteristics associated with goal-concordant care, and (3) assess goals-of-care 6 months after SABI. Our cohort included patients with SABI in our Neuro-ICU and a Glasgow Coma Scale Score <12 after day 2. Socio-demographic and clinical characteristics were collected through surveys and chart review. At enrollment and again at 6 months, each family was asked if the patient would prefer medical care focused on extending life vs. care focused on comfort and quality of life, and what care the patient is currently receiving. We used multivariate regression to examine the characteristics associated with (a) prioritized goals (comfort/extending life/unsure) and (b) goal concordance. Among 214 patients, families reported patients' goals-of-care to be extending life in 118 cases (55%), comfort in 71 (33%), and unsure for 25 (12%), while care received focused on extending life in 165 cases (77%), on comfort in 23 (11%) and families were unsure in 16 (7%). In a nominal regression model, prioritizing comfort over extending life was significantly associated with being non-Hispanic White and having worse clinical severity. Most patients who prioritized extending life were receiving family-reported goal-concordant care (88%, 104/118), while most of those who prioritized comfort were receiving goal-discordant care (73%, 52/71). The only independent association for goal concordance was having a presumed goal of extending life at enrollment (OR 23.62, 95% CI 10.19-54.77). Among survivors at 6 months, 1 in 4 family members were unsure about the patient's goals-of-care. A substantial proportion of patients are receiving unwanted aggressive care in the acute setting after SABI. In the first days, such aggressive care might be justified by prognostic uncertainty. The high rate of families unsure of patient's goals-of-care at 6 months suggests an important need for periodic re-evaluation of prognosis and goals-of-care in the post-acute setting.
重症急性脑损伤（SABI）患者缺乏决策能力，这就需要家属和临床医生做出目标一致的决策，使治疗与患者假定的医疗目标相匹配。本研究从家属的角度出发，旨在：（1）比较患者的医疗目标与他们在急性期接受的治疗；（2）确定与目标一致的治疗相关的患者和家属特征；（3）评估SABI发生6个月后的医疗目标。我们的队列包括神经重症监护病房（Neuro-ICU）中的SABI患者，且在第2天后格拉斯哥昏迷量表评分＜12分。通过调查和病历审查收集社会人口统计学和临床特征。在入组时以及6个月后，分别询问每个家庭患者是更倾向于接受以延长生命为重点的医疗护理还是以舒适和生活质量为重点的护理，以及患者目前正在接受何种护理。我们使用多变量回归分析来研究与（a）优先目标（舒适/延长生命/不确定）和（b）目标一致性相关的特征。在214例患者中，家属报告患者的医疗目标为延长生命的有118例（55%），为舒适的有71例（33%），不确定的有25例（12%）；而接受的治疗以延长生命为重点的有165例（77%），以舒适为重点的有23例（11%），家属不确定的有16例（7%）。在一个名义回归模型中，将舒适置于延长生命之上与非西班牙裔白人以及临床严重程度较差显著相关。大多数将延长生命作为优先目标的患者接受了家属报告的目标一致的治疗（88%，104/118），而大多数将舒适作为优先目标的患者接受了目标不一致的治疗（73%，52/71）。目标一致性的唯一独立关联因素是在入组时假定的目标为延长生命（比值比23.62，95%置信区间10.19 - 54.77）。在6个月时的幸存者中，四分之一的家庭成员不确定患者的医疗目标。相当一部分患者在SABI后的急性期接受了不必要的积极治疗。在最初几天，这种积极治疗可能因预后不确定性而合理。6个月时家属不确定患者医疗目标的比例很高，这表明在急性后期环境中，对预后和医疗目标进行定期重新评估的需求很大。
