Feudtner Chris, DiGiuseppe David L, Neff John M
Pediatric Advanced Care Team and the Pediatric Generalists Research Group, Division of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
BMC Med. 2003 Dec 23;1:3. doi: 10.1186/1741-7015-1-3.
To help design population-based pediatric palliative care services, we sought to describe the hospital care received in the last year of life by children and young adults who died. We also determined the proportion with complex chronic conditions (CCCs) and tested whether the use of hospital services increased as the date of death drew nearer.
For all deaths occurring under 25 years of age from 1990 to 1996 in Washington State, USA, we linked death certificate information to hospital utilization records and analyzed the timing and duration of hospitalizations and the nature of hospital procedures during the year prior to death.
Of the 8 893 deaths, 25 % had CCCs. Among infants with CCCs, 84 % were hospitalized at the time of death and 50 % had been mechanically ventilated during their terminal admission. Among the 458 CCC neonates dying under a week of age, 92% of all days of life were spent in the hospital; among the 172 CCC neonates dying during the second to fourth weeks of life, 85 % of all days of life were spent hospitalized; among the 286 CCC infants dying during the second to twelfth month of life, 41 % of all days of life were spent hospitalized. Among children and young adults with CCCs, 55 % were hospitalized at the time of death, and 19 % had been mechanically ventilated during their terminal admission. For these older patients, the median number of days spent in the hospital during the year preceding death was 18, yet less than a third of this group was hospitalized at any point in time until the last week of their lives. The rate of hospital use increased as death drew near. For subjects who had received hospital care, 44 % had governmental insurance as the source of primary payment.
Infants who died spent a substantial proportion of their lives in hospitals, whereas children and adolescents who died from CCCs predominantly lived outside of the hospital during the last year of life. To serve these patients, pediatric palliative and end-of-life care will have to be provided in an integrated, coordinated manner both in hospitals and home communities.
为帮助设计基于人群的儿科姑息治疗服务，我们试图描述死亡儿童和青年在生命最后一年所接受的医院治疗情况。我们还确定了患有复杂慢性病（CCC）的比例，并测试了随着死亡日期临近，医院服务的使用是否增加。
对于1990年至1996年在美国华盛顿州发生的所有25岁以下死亡病例，我们将死亡证明信息与医院利用记录相链接，并分析了死亡前一年的住院时间和时长以及医院治疗程序的性质。
在8893例死亡病例中，25%患有CCC。在患有CCC的婴儿中，84%在死亡时住院，50%在临终入院期间接受了机械通气。在458例年龄小于一周岁的CCC新生儿死亡病例中，其生命的92%在医院度过；在172例在出生后第二至第四周死亡的CCC新生儿中，其生命的85%在医院度过；在286例在出生后第二至第十二个月死亡的CCC婴儿中，其生命的41%在医院度过。在患有CCC的儿童和青年中，55%在死亡时住院，19%在临终入院期间接受了机械通气。对于这些年龄较大的患者，死亡前一年在医院度过的天数中位数为18天，但在其生命的最后一周之前，该组中不到三分之一的人在任何时间点住院。随着死亡临近，医院服务的使用率增加。对于接受过医院治疗的患者，44%以政府保险作为主要支付来源。
死亡的婴儿在医院度过了相当长的生命时光，而死于CCC的儿童和青少年在生命的最后一年主要生活在医院之外。为服务这些患者，儿科姑息治疗和临终关怀必须在医院和家庭社区以综合、协调的方式提供。
