Objective: Pain and quality of death are important considerations in treatment choices for children. Our objective is to assess the intensive care-associated experiences of 22-25 weeks gestational age (GA) infants who die despite intensive care treatment.
Study design: In a 1:1 case-control study, medical records were screened for all inborn 22-25 weeks GA infants who received intensive care treatments between 2014 and 2020. Cases were all infants who died. Each case was matched by GA and birth weight to an infant who survived to discharge (control). Data was collected on cases and controls for a matched timeframe based on the case's duration of intensive care treatment. Information collected included intensive care-associated negative experiences (invasive procedures, surgeries, use of pain medication) and positive experiences (enteral feedings, being held by family).
Results: The cases (n=20) survived for 0 to 93 days, with median (IQR) survival 8 (5, 24) days. The mean (SD) number of invasive procedures was higher for cases than controls, 34 (30) vs. 24 (22), p=0.004. Cases underwent 8 surgeries compared to 4 in the controls. Additionally, compared to controls, cases spent more time receiving pain medications (64% vs. 27%, p<0.001) and without being fed (54% vs. 39%, p<0.001). Half of cases were never held by parents until the day they died.
Conclusion: Extremely premature infants who die despite intensive care face more treatment burdens than the survivors. Larger studies are needed to confirm these findings and gather information necessary for informed decisions about intensive care treatment of these infants.
Keywords: Bioethics; Invasive Procedures; Periviable Birth; Premature Birth; Quality of Death; Treatment Burden.