End-of-life care in a pediatric intensive care unit: the impact of the development of a palliative care unit

Abstract

Background: The purpose of this paper is to describe how end-of-life care is managed when life-support limitation is decided in a Pediatric Intensive Care Unit and to analyze the influence of the further development of the Palliative Care Unit. Methods: A 15-year retrospective study of children who died after life-support limitation was initiated in a pediatric intensive care unit. Patients were divided into two groups, pre-and post-palliative care unit development. Epidemiological and clinical data, the decision-making process, and the approach were analyzed. Data was obtained from patient medical records. Results: One hundred seventy-five patients were included. The main reason for admission was respiratory failure (86/175). A previous pathology was present in 152 patients (61/152 were neurological issues). The medical team and family participated together in the decision-making in 145 cases (82.8%). The family made the request in 10 cases (9 vs. 1, p = 0.019). Withdrawal was the main life-support limitation (113/175), followed by withholding lifesustaining treatments (37/175). Withdrawal was more frequent in the post-palliative group (57.4% vs. 74.3%, p = 0.031). In absolute numbers, respiratory support was the main type of support withdrawn. Conclusions: The main cause of life-support limitation was the unfavourable evolution of the underlying pathology. Families were involved in the decision-making process in a high percentage of the cases. The development of the Palliative Care Unit changed life-support limitation in our unit, with differences detected in the type of patient and in the strategy used. Increased confidence among intensivists when providing end-of-life care, and the availability of a Palliative Care Unit may contribute to improvements in the quality of end-of-life care.

Clinical Factors Influencing End-of-Life Care in a Chinese Pediatric Intensive Care Unit: A Retrospective, post-hoc Study

“…As highlighted previously, we found that PICU deaths accounted for most deaths within our tertiary care pediatric hospital ( 14 ). A previous study in a Japanese PICU reported the mortality rate to be ~3.3%, which was consistent with that reported in our study (3.6%).…”

“…Since the 1990s, WLST practices have been well-defined in literature ( 14 , 23 ). We examined WLST status at death based on medical records.…”

“…We examined WLST status at death based on medical records. All deaths were classified into two groups: WLST group (death after WLST) ( 14 ) and fCPR group [death after full intervention, including cardiopulmonary resuscitation (CPR)]. Withdrawal of life-sustaining treatment was defined as discontinuing the life-sustaining intervention/treatment that was already in place.…”

“…Withdrawal of life-sustaining treatment was defined as discontinuing the life-sustaining intervention/treatment that was already in place. Withholding treatment was defined as the non-initiation or the decision not to escalate a life-sustaining treatment ( 14 , 24 , 25 ). Life-sustaining treatments included CPR, inotropic or vasoactive medication, mechanical ventilation, renal replacement therapy, and extracorporeal membrane oxygenation (ECMO).…”

“…As a result, the ethical practices of withholding and withdrawing life-sustaining treatments (WLST) in children ( 11 ), have become common in PICUs in many countries ( 2 , 12 , 13 ). Consequently, the goals of care get redefined—to ensure support and comfort to the patient's parents rather than providing a cure, and to attend to the psychosocial needs of dying children and their families which will promote optimal EOL care, and thus facilitate a peaceful death ( 14 , 15 ). Major factors have been shown to strongly influence the decision to WLST including, geographic parameters, religious and cultural beliefs, societal values, race, legal concerns, subjective evaluation of the benefits and burdens of life support, the nature of the underlying disease, the quality of life prior to hospitalization, and the expected suffering secondary to the pathology ( 12 , 16 , 17 ).…”