Introduction

Physicians are now able to intervene and treat children with critical illnesses that were once considered fatal. Prolongation of life without meaningful survival is not the goal of medical therapy. There is increasing understanding that medical intervention initiated to sustain life may also be withdrawn when further care is deemed to be futile without hope of a meaningful recovery. As science and technology continue to further develop, issues surrounding end of life care warrant an increased focus to facilitate a more compassionate dying process.

Objective

The purpose of this study was to retrospectively analyze the modes of death in our multidisciplinary PICU, analyze the demographics and details surrounding the deaths, and to identify patients who received palliative care prior to dying.

Methods

We retrospectively reviewed all mortalities in our multidisciplinary medical/surgical PICU from 8/1/91 to 7/31/00 and from 8/1/00 to 11/30/08. Age range for admission is birth to 21 years. Demographic data and details of death were collected and analyzed. Limitation of care (LOC) was defined as institution of a Do Not Attempt Resuscitation Order, prescription of arbitrary limits on ventilatory or cardiovascular support. Withdrawal of Care (WOC) was defined as active removal or substantial lowering of ventilator or cardiovascular support with expectation of imminent death. All other cardiorespiratory deaths were considered failed resuscitation (FR). Brain death (BD) was diagnosed by accepted clinical criteria and at least one confirmatory examination (radio-nucleotide cerebral perfusion scan or EEG).

Results

From 8/1/91-7/31/00 there were 7,487 admissions and 392 deaths (mortality 5.2%). From 8/1/00-11/30/08 there were 5,833 admissions and 209 deaths (mortality 3.6%). Of the 601 mortalities, 576 charts were available for review. Frequencies of modes of death for the study period for 8/1/91-7/31/00 were LOC 88 (23%), WOC 97 (26%), FR 119 (31%), and BD 75 (20%). Frequencies of modes of death for the study period of 8/1/00-11/30/08 were LOC 43 (22%), WOC 77 (39%), FR 42 (21%), and BD 35 (18%). The median length of stay (LOS) was comparable to those patients who had WOC and LOC (13), while the median length of stay for patients with FR and BD were 8 and 2 respectively. Comparing the two study periods WOC became more common (39% v 26%) with FR becoming less common over time. For the study period of 8/1/00-11/30/08 palliative care was provided for 48% (95) of patients. Of those patients who received palliative care 59% had WOC(56), and 38% (38) had LOC.

Conclusions

Limitation and withdrawal of care together are the most common modes of death in our PICU. Withdrawal of care has become a more common mode of death in the PICU over the past decade. Although limitation and withdrawal of care are the most common modes of death for over half our population, less than half received palliative care. This prompted a focus group to spearhead the formation of a Pediatric Palliative Care Committee and finally a pediatric palliative care team in September 2008. The mission is to address the needs of medically complex children from the time of diagnosis, and to assist them and their families in improving quality of life. It is our goal that all children with life threatening illnesses will receive palliative care, and their families will be continually supported throughout the death and dying process whether in the PICU, hospital ward or at home.