The outcome of treatment limitation discussions in newborns with brain injury

Abstract

Background: Most deaths in severely brain-injured newborns in neonatal intensive care units (NICUs) follow discussions and explicit decisions to limit life-sustaining treatment. There is little published information on such discussions.

Objective: To describe the prevalence, nature and outcome of treatment limitation discussions (TLDs) in critically ill newborns with severe brain injury.

Design: A retrospective statewide cohort study.

Setting: Two tertiary NICUs in South Australia.

Patients: Ventilated newborns with severe hypoxic ischaemic encephalopathy and periventricular/intraventricular haemorrhage (P/IVH) admitted over a 6-year period from 2001 to 2006.

Main outcome measures: Short-term outcome (until hospital discharge) including presence and content of TLDs, early childhood mortality, school-age functional outcome.

Results: We identified 145 infants with severe brain injury; 78/145 (54%) infants had documented TLDs. Discussions were more common in infants with severe P/IVH or hypoxic-ischaemic encephalopathy (p<0.01). Fifty-six infants (39%) died prior to discharge, all following treatment limitation. The majority of deaths (41/56; 73%) occurred in physiologically stable infants. Of 78 infants with at least one documented TLD, 22 (28%) survived to discharge, most in the setting of explicit or inferred decisions to continue treatment. Half of long-term survivors after TLD (8/16, 50%) were severely impaired at follow-up. However, two-thirds of surviving infants with TLD in the setting of unilateral P/IVH had mild or no disability.

Conclusions: Some critically ill newborn infants with brain injury survive following TLDs between their parents and physicians. Outcome in this group of infants provides valuable information about the integrity of prognostication in NICU, and should be incorporated into counselling.

Keywords: Ethics; Neonatology; Palliative Care.

Figure 1

Flowchart of cohort, including outcome at latest follow-up (GOS, Modified Glasgow Outcome Score); N/A—long-term outcome data not available; TLD—treatment limitation discussion; HIE, hypoxic–ischaemic encephalopathy; P/IVH, periventricular/intraventricular haemorrhage; PVL, periventricular leucomalacia; uni, unilateral; bilat, bilateral; ICH, intracranial haemorrhage. Modified GOS categories: 1—functionally normal, 2—mildly disabled but likely independent, 3—moderately disabled and dependent on care, 4—severely disabled and totally dependent on care.

Figure 2

Severity of illness and treatment limitation discussions (TLD). Each line represents the course of an individual infant. Decisions are classified according to the infant's physiological stability at the time of discussion, while the symbols represent the result of discussions. The shaded area in the lower figure indicates infants who were not ventilated (NV) at the time of discussion. (A) Newborns with hypoxic–ischaemic encephalopathy and other intracranial pathology (‘other intra-cerebral haemorrhage’); (B) newborns with P/IVH (periventricular/intraventricular haemorrhage) and P/IVH+ periventricular leucomalacia. ▲, survived-no parental decision documented; X, died following decision to limit or withdraw treatment; , limitation/withdrawal -survived; ● survived-parental decision to continue treatment; , unilateral decision; open-ended lines, patient survived to discharge; □, decision made at referring hospital.