Levy M, Duffy C M, Pollock P, Budd E, Caulfield L, Koren G
Hospital for Sick Children, Toronto, Ontario, Canada.
J Palliat Care. 1990 Spring;6(1):11-5.
To assess the necessity and feasibility of introducing a home-based palliative care program for children admitted to our neurosurgical unit and diagnosed as being terminally ill, we conducted an analysis of all such patients admitted to our unit over an 18-month period. Of a total of 30 patients, 22 (73.4%) had central nervous system tumors, 6 (20.0%) had myelomeningocele/hydrocephalus, and 2 (6.6%) had arteriovenous malformations. The mean duration +/- SEM of hospitalized days prior to death and the proportion of time spent hospitalized during the terminal phase of illness were 28.8 +/- 4.77 and 0.327 respectively, for the 23 patients who died and on whom adequate data were available. Sixteen (70.6%) of these 23 patients died in hospital. Nine (30.0%) of the total group of patients were studied prospectively during the last 6 months of this study to determine the extent of their symptoms and to ascertain whether it would be feasible for them to be managed at home. The most troublesome symptoms in this subgroup were feeding difficulties, gastrointestinal symptoms, breathing difficulty, and seizures. These symptoms were managed either by (a) medications administered orally or by feeding tube or rectally, or by (b) noninvasive procedures carried out by a nurse under the direction of the admitting neurosurgeon. This study suggests that prolonged hospitalization for children diagnosed as being terminally ill can be avoided by introducing a home-based palliative program with involvement from a nurse and a physician familiar with drug therapy for terminally ill children.
为评估在我们神经外科病房收治的被诊断为绝症的儿童中引入居家姑息治疗项目的必要性和可行性，我们对该病房在18个月期间收治的所有此类患者进行了分析。在总共30例患者中，22例（73.4%）患有中枢神经系统肿瘤，6例（20.0%）患有脊髓脊膜膨出/脑积水，2例（6.6%）患有动静脉畸形。对于23例死亡且有足够数据的患者，死亡前住院天数的平均时长±标准误以及疾病终末期住院时间所占比例分别为28.8±4.77和0.327。这23例患者中有16例（70.6%）在医院死亡。在本研究的最后6个月期间，对全部患者中的9例（30.0%）进行了前瞻性研究，以确定其症状程度，并确定他们在家中接受治疗是否可行。该亚组中最棘手的症状是喂养困难、胃肠道症状、呼吸困难和癫痫发作。这些症状通过以下方式处理：（a）口服、经饲管或直肠给药，或（b）由护士在收治神经外科医生的指导下进行无创操作。本研究表明，通过引入由熟悉绝症儿童药物治疗的护士和医生参与的居家姑息治疗项目，可以避免被诊断为绝症的儿童长期住院。
