Therapeutic effort adequacy directives. Experience of a Pediatric Palliative Care Unit

Abstract

Limitation of medical treatment (LOMT) directives are a relevant clinical-ethical procedure in the care of children with life-threatening conditions.

Objective: To describe the percentage and characteristics of patients with LOMT records, including recommendations, time to implementation, and adherence.

Patients and Method: Retrospective study between 2009 and 2024, in children cared for by the Pediatric Palliative Care Unit of the Centro Hospitalario Pereira Rossell in Uruguay (UCPP-CHPR). The variables evaluated were age, pathology, participants in decision-making, record, measures “to be performed” and “not to be performed”, time between UCPP-CHPR referral/ LOMT decision and between LOMT/ death, place of death, and adherence to the LOMT directives.

Results: LOMT were recorded in 18.2% (244/1341) of patients; the median age was 4.8 years and 66% had severe neurological impairment. Healthcare teams and caregivers participated in the decision-making process in 88% of cases. The record was performed in a specific form in 88.5% of the cases. The LOMT directives included “to be performed”: analgesia and comfort care (100%), admission to the general pediatric ward (96%); and “not to be performed”: cardiopulmonary resuscitation (96%), admission to intensive care (98%), and mechanical ventilation support (98%). 4 patients underwent compassionate extubating. The median time between UCPP-CHPR/ LOMT was 6 months. A total of 77.4% (189/244) of the patients died, 70% of them while admitted. The median time between LOMT/ death was 3 months. The adherence rate to LOMT directives was 98%.

Conclusions: Almost one-fifth of the children cared for by the UCPP-CHPR had LOMT directives. In most cases, healthcare professionals and caregivers participated in the decision-making process, and the directives were recorded in a specific form in the clinical history. In almost all deceased children, the LOMT directives were respected.