Van den Block Lieve, Deschepper Reginald, Bossuyt Nathalie, Drieskens Katrien, Bauwens Sabien, Van Casteren Viviane, Deliens Luc
End-of-Life Care Research Group, Vrije Universiteit Brussel, Laarbeeklaan 103, 1090 Brussels, Belgium.
Arch Intern Med. 2008 Sep 8;168(16):1747-54. doi: 10.1001/archinte.168.16.1747.
Population-based studies monitoring end-of-life care are lacking. This study describes involvement of caregivers, access to specialist palliative care, treatment goals (cure, life-prolonging, or palliation), and content of end-of-life care (physical, psychosocial, or spiritual) in a representative sample of dying persons in Belgium.
We performed a mortality follow-back study in 2005 (Sentinel Network Monitoring End-of-Life Care [SENTI-MELC] study). Data were collected via the nationwide Sentinel Network of General Practitioners, an epidemiological surveillance system representative of all Belgian general practitioners. Each week, all 205 participating practices reported all deaths of patients in their practice and registered the care provided in the final 3 months of life. Sudden, unexpected deaths were excluded.
We studied 892 deaths. General practitioners, nurses or geriatric caregivers, and informal caregivers were often involved in end-of-life care in 76%, 78%, and 75% of cases, respectively. Specialist multidisciplinary palliative care services were provided in 41% of cases. Two to 3 months before death, a palliative treatment goal was in place for 37% of patients, increasing to 81% in the last week of life (P < .001). Two to 3 months before death, physical, psychosocial, and spiritual care was provided to a (very) large extent to 84%, 36%, and 10% of patients, respectively. These numbers increased to 90%, 54%, and 25%, respectively, in the last week of life (P < .001).
In Belgium, most dying patients have both formal and informal caregivers. Provision of specialist palliative care is far less frequent. A transition from cure to palliation often occurs late in the dying process and sometimes not at all. Psychosocial and spiritual care is delivered considerably less frequently than physical care.
缺乏基于人群的临终关怀监测研究。本研究描述了比利时临终患者代表性样本中照顾者的参与情况、获得专科姑息治疗的机会、治疗目标（治愈、延长生命或姑息治疗）以及临终关怀的内容（身体、心理社会或精神方面）。
我们在2005年进行了一项死亡率回顾性研究（临终关怀哨兵网络监测研究[SENTI-MELC]）。数据通过全国性的全科医生哨兵网络收集，该网络是代表所有比利时全科医生的流行病学监测系统。每周，所有205家参与的医疗机构报告其机构内患者的所有死亡情况，并记录生命最后3个月提供的护理。排除突然、意外死亡情况。
我们研究了892例死亡病例。全科医生、护士或老年护理人员以及非正式照顾者分别在76%、78%和75%的病例中经常参与临终关怀。41%的病例接受了专科多学科姑息治疗服务。在死亡前两到三个月，37%的患者确立了姑息治疗目标，在生命的最后一周这一比例增至81%（P <.001）。在死亡前两到三个月，分别有84%、36%和10%的患者在很大程度上接受了身体、心理社会和精神护理。在生命的最后一周，这些数字分别增至90%、54%和25%（P <.001）。
在比利时，大多数临终患者既有正式照顾者也有非正式照顾者。专科姑息治疗的提供频率要低得多。从治愈到姑息治疗的转变通常在临终过程后期才发生，有时根本没有发生。心理社会和精神护理的提供频率远低于身体护理。
