Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice:

Despite a gradual shift in the focus of medical care among terminally ill patients to a palliative model, studies suggest that many children with life-limiting chronic illnesses continue to die in hospital after prolonged periods of inpatient admission and mechanical ventilation. To (1) examine the characteristics and location of death among hospitalised children, (2) investigate yearwise trends in these characteristics and (3) test the hypothesis that professional ethical guidance from the UK Royal College of Paediatrics and Child Health (1997) would lead to significant changes in the characteristics of death among hospitalised children. Routine administrative data from one large tertiary-level UK children's hospital was examined over a 7-year period (1997-2004) for children aged 0-18 years. Demographic details, location of deaths, source of admission (within hospital vs external), length of stay and final diagnoses (International Classification of Diseases-10 codes) were studied. Statistical significance was tested by the Kruskal-Wallis analysis of ranks and median test (non-parametric variables), chi(2) test (proportions) and Cochran-Armitage test (linear trends). Of the 1127 deaths occurring in hospital over the 7-year period, the majority (57.7%) were among infants. The main diagnoses at death included congenital malformations (22.2%), perinatal diseases (18.1%), cardiovascular disorders (14.9%) and neoplasms (12.4%). Most deaths occurred in an intensive care unit (ICU) environment (85.7%), with a significant increase over the years (80.1% in 1997 to 90.6% in 2004). There was a clear increase in the proportion of admissions from in-hospital among the ICU cohort (14.8% in 1998 to 24.8% in 2004). Infants with congenital malformations and perinatal conditions were more likely to die in an ICU (OR 2.42, 95% CI 1.65 to 3.55), and older children with malignancy outside the ICU (OR 6.5, 95% CI 4.4 to 9.6). Children stayed for a median of 13 days (interquartile range 4.0-23.25 days) on a hospital ward before being admitted to an ICU where they died. A greater proportion of hospitalised children are dying in an ICU environment. Our experience indicates that professional ethical guidance by itself may be inadequate in reversing the trends observed in this study.

To describe the patient mortality over a 10-year period in a paediatric intensive care unit (PICU) including patient demographics, length of stay, cause and mode of death and to compare these findings with pre-existing literature from the western world. A retrospective chart review. A UK tertiary PICU. All children who died in the PICU over a 10-year period between 1 November 1997 and 31 October 2007 (n = 204). None. Data recorded for each patient included patient demographics, length of stay and cause of death according to the International Classification of Disease-10 classification, and mode of death. Mode of death was assigned for each patient by placement in one of four categories: (i) brain death (BD), (ii) managed withdrawal of life-sustaining medical therapy (MWLSMT), (iii) failed cardiopulmonary resuscitation (CPR) and (iv) limitation of treatment (LT). Over the study period, findings showed a median length of stay of 2 days (IQR 0-5 days), with a mortality rate of 5%. The most common mode of death was MWLSMT (n = 112, 54.9%) and this was consistent across the 10-year period. Linear regression analysis demonstrated no significant change in trend over the 10 years in each of the modes of death; BD (p = 0.84), MWLSMT (p = 0.88), CPR (p = 0.35) and LT (p = 0.67). End-of-life care is an important facet of paediatric intensive nursing/medicine. Ten years on from the Royal College of Paediatrics and Child Health publication 'Withholding or withdrawing life sustaining treatment in children: A framework for practice', this study found managed withdrawal of MWLSMT to be the most commonly practised mode of death in a tertiary PICU, and this was consistent over the study period.