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Revista Médica del Uruguay

versión impresa ISSN 0303-3295versión On-line ISSN 1688-0390


PEREIRA, Inés et al. Directives on the adequacy of therapeutic effort in children. Experience at the Peadiatric Palliative Care Unit of the Pereira Rossell Hospital Centre (2009-2015). Rev. Méd. Urug. [online]. 2017, vol.33, n.1, pp.46-71. ISSN 0303-3295.


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.


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.


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.


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.

Palabras clave : Pediatric palliative care; Decision making; Advance care planning; Adequacy of therapeutic effort..

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