Directives on the adequacy of therapeutic effort in children. Experience at the Peadiatric Palliative Care Unit of the Pereira Rossell Hospital Centre (2009-2015)

Abstract

Introduction: in certain patients, “directives on the adequacy of therapeutic effort” (DAET) known as advanced care planning are important tools to align medical care to patient’s and family’s objectives of care.

Purpose: to describe characteristics of patients assisted by a paediatric palliative care unit (PPCU) with DAET and the degree in which they were respected in children who died.

Methods: descriptive, retrospective study. Period: 1/January/2009- 31/December/2015. Population: children assisted by the UCPP with DAET. Variables: age, pathology, prosthesis carried, primary caregiver, participants in decision-making process, form of registration, measures “TO PERFORM” and “NOT TO PERFORM”, time between recruitment by PPCU/DAET, death, time between DAET/death, place of death, DAET accomplished.

Results: DAET was found in 11.8% (73/618) of patients; median age: 3.8 years old; 75.3% had severe neurological impairment; 84.9% carried at least one prosthesis; primary caregiver: mother 72.6%. Participants in decision-making process: healthcare team and primary caregiver 94.5%. Registration in specific document: 60.3%. DAET included: “TO PERFORM”: analgesia and comfort care: 100%, admission to moderate care: 86.3% and “NOT TO PERFORM”: cardiopulmonary resuscitation: 100%, admission to intensive care: 86.3%, mechanical ventilator assistance 83.5%. Time between recruitment by PPCU/DAET: median: 13 months. 53.4% (39/73) died, in the hospital 76.9%. Time between DAET/death, median: 7 months. DAET were followed in 97.4%.

Discussion and conclusions: 11.8% of children assisted by PPCU had DAET. Decision-making was shared between health providers and caregivers in most cases. DAET were respected in almost all children who had them and died.