Odejide Oreofe O, Cernik Colin, Uno Hajime, Fisher Lauren, Xu Lanfang, Laurent Cecile A, Cannizzaro Nancy, Munneke Julie, Cooper Robert M, Lakin Joshua R, Schwartz Corey M, Casperson Mallory, Altschuler Andrea, Wiener Lori, Kushi Lawrence, Chao Chun R, Mack Jennifer W
Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts.
Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts.
JAMA Netw Open. 2025 Jan 2;8(1):e2454000. doi: 10.1001/jamanetworkopen.2024.54000.
Adolescent and young adult (AYA) patients with advanced cancer often die in hospital settings. Data characterizing the degree to which this pattern of care is concordant with patient goals are sparse.
To evaluate the extent of concordance between the preferred and actual location of death among AYA patients with cancer.
DESIGN, SETTING, AND PARTICIPANTS: This multicenter retrospective cohort study included AYA patients (aged 12-39 years) with cancer who died between January 1, 2003, and December 31, 2019, after receiving care at Dana-Farber Cancer Institute and Kaiser Permanente Northern California or who died between January 1, 2009, and December 31, 2019, after receiving care at Kaiser Permanente Southern California. Data were analyzed from January 12 to July 1, 2024.
Death due to cancer.
Medical record documentation of discussions about preferred location of death, actual location of death, and concordance between preferred and actual location of death.
The analytic population included 1929 AYA decedents, of whom 1049 (54.4%) were female; 227 (11.8%), Asian; 157 (8.1%), Black; 514 (26.6%), Hispanic; and 1184 (61.4%), White. Median age at death was 32 (IQR, 25-37) years. A total of 1226 AYA patients (63.6%) had a documented discussion about preferred location of death. Among those with a documented discussion, 594 (48.5%) did not have a documented preference, 402 (32.8%) wanted to die at home, 177 (14.4%) preferred a hospital death, and 48 (3.9%) desired inpatient hospice. Eight hundred and thirty patients (43.0%) died in acute care settings (256 [13.3%] intensive care unit [ICU], 548 [28.4%] hospital [non-ICU], and 26 [1.3%] emergency department), while 643 (33.3%) died at home and 47 (2.4%) in an inpatient hospice. Among the 528 patients with both a documented preferred death location of home, hospital, or inpatient hospice and documented death in one of these locations, the concordance between preferred and actual location of death was 401 (75.9%). One hundred and sixty-four of 172 patients (95.3%) who preferred a hospital death died there; 224 of 317 (70.7%) who preferred a home death died at home, and 13 of 39 (33.3%) who desired to die in inpatient hospice did so.
Although many AYA patients with cancer died in their preferred location, over one-quarter of those who desired to die at home did not realize this goal. These findings highlight the need for effective solutions to enable goal-concordant care for this population.
患有晚期癌症的青少年和青年（AYA）患者常常在医院环境中死亡。关于这种护理模式与患者目标相符程度的数据稀少。
评估AYA癌症患者首选的死亡地点与实际死亡地点之间的一致程度。
设计、设置和参与者：这项多中心回顾性队列研究纳入了2003年1月1日至2019年12月31日期间在丹娜-法伯癌症研究所和北加利福尼亚凯撒医疗集团接受治疗后死亡的AYA癌症患者（年龄在12 - 39岁之间），以及2009年1月1日至2019年12月31日期间在南加利福尼亚凯撒医疗集团接受治疗后死亡的AYA癌症患者。数据于2024年1月12日至7月1日进行分析。
因癌症死亡。
关于首选死亡地点、实际死亡地点以及首选和实际死亡地点之间一致性的讨论的病历记录。
分析人群包括1929名AYA死亡患者，其中1049名（54.4%）为女性；227名（11.8%）为亚裔；157名（8.1%）为黑人；514名（26.6%）为西班牙裔；1184名（61.4%）为白人。死亡时的中位年龄为32岁（四分位间距，25 - 37岁）。共有1226名AYA患者（63.6%）有关于首选死亡地点的记录在案的讨论。在有记录在案讨论的患者中，594名（48.5%）没有记录在案的偏好，402名（32.8%）希望在家中死亡，177名（14.4%）倾向于在医院死亡，48名（3.9%）希望在住院临终关怀机构死亡。830名患者（43.0%）在急性护理环境中死亡（256名[13.3%]在重症监护病房[ICU]，548名[28.4%]在医院[非ICU]，26名[1.3%]在急诊科），而643名（33.3%）在家中死亡，47名（2.4%）在住院临终关怀机构死亡。在528名记录了首选死亡地点为家中、医院或住院临终关怀机构且在这些地点之一记录了死亡情况的患者中，首选和实际死亡地点之间的一致性为401名（75.9%）。在172名倾向于在医院死亡的患者中，164名（95.3%）在医院死亡；在317名倾向于在家中死亡的患者中，224名（70.7%）在家中死亡，在39名希望在住院临终关怀机构死亡的患者中，13名（33.3%）如愿以偿。
尽管许多AYA癌症患者在其首选地点死亡，但四分之一以上希望在家中死亡的患者未能实现这一目标。这些发现凸显了需要有效的解决方案，以便为这一人群提供符合目标的护理。
