Trends in Palliative Care Research 2023; Issue #06

Commentary By:

Esther Lee, Pediatrician and Palliative Medicine Specialist – BC Children’s Hospital Complex Care Program and Canuck Place Children’s Hospice Esther enjoys browsing through every aisle at Costco. She is a pediatrician and medical lead for the Complex Care program at BC Children’s Hospital and a palliative medicine specialist at Canuck Place Children’s Hospice. Her interests include advocacy for improved support of families with children with health complexity, improved communication in serious illness and in crisis, health improvement science, and humanity in medicine.

Feature Article

Wilkinson, D. J., & Bertaud, S. (2023). End of life care in the setting of extreme prematurity—Practical challenges and ethical controversies. Semin Fetal Neonatal Med, 101442.


“Abby is precious especially as Abby’s older sister died as a stillborn.” This is what Abby (name changed) mother told me on the day that Abby died. Abby was born at 25 weeks gestation age (GA), at a very small weight even for her early birth. Abby’s 8-month course in the NICU was rocky. Parents saw her feistiness and the ongoing intensive treatments being offered as a sign to continue, until it was clear she couldn’t go on. Their faith also guided their decision making. Since Abby survived many critical deteriorations in the early months, her parents did not lose hope when she deteriorated near the end, although it seemed clear to the medical teams that her body was not able to keep up, despite the maximal intensive treatments.

Wilkinson and Bertaud’s “End of Life care in the setting of extreme prematurity – practical challenges and ethical controversies” was a well-timed read after the encounter I had with Abby. This five-page article focuses on the end-of-life care (EOLC) of infants of extreme prematurity, defined as born before 28 weeks gestation.
1. Background: Babies with extreme prematurity constitute only ~0.5% of overall births, but make up a large proportion of patients in the NICU (in high income countries) and 40% of deaths. Within this population, >80% of premature babies born 26 weeks or later survive.
2. EOLC in the delivery room:
A Neonatal “grey zone” is where parental decisions prior to birth determines the EOLC at delivery. The boundaries of this grey zone are challenging, with ongoing medical advances. The issue of whether the NICU and/or palliative care team should be involved is discussed and whether parallel planning can support a plan to shift gears, depending on how the baby looks after birth.
3. End of life decision making in the NICU: This is the part I was most interested in. Some statistics: in high income settings, 66-75% of babies of extreme prematurity survive to be discharged from the NICU. Those who do not survive, 25% die in the first 24 hours and 50% 24h – 1 month and 25% later. In NICUs in N. America, Europe and Australia, most deaths occur after limitation of life-sustaining treatment.
How should EOLC decisions compare between the delivery room and in the NICU?
The main challenge is the perceived difference between withholding and withdrawing life-prolonging treatment although professional guidelines indicate these are ethically equivalent. The authors suggest that if the parents find it more difficult to withdraw care, that this would lead to a more stringent approach to EOL decisions.
Two practical methods.
i. The equivalence test:  There is a question about withdrawing treatment (e.g., ventilation) on baby A. If baby B were to present with the same features but not yet on a ventilator and you are prepared to withhold treatment from baby B, then you should be prepared to withdraw treatment from baby A.
ii. The “if I’d only known” test: Imagine you knew then what you know now about baby C (response to treatment, complications, prognosis). Would you have been prepared to withhold treatment at birth then? If so, then you should be prepared to withdraw treatment now.

Back to Abby, I believe my NICU colleagues would have been prepared to withhold treatment at birth using the “if I’d only known” test. However, knowing that these parents ardently hoped for a child, I wonder if this would not have changed the course as parents wanted any chance for their baby to have a chance at life. A related article by Boss “Palliative care for NICU survivors with chronic critical illness” may be helpful for decision making support as even if Abby survived the NICU, there would be chronic medical technology, home health demands and family social, emotional, and financial strain. More research is needed to address enlarging divide between the capacity of medicine to lengthen life and the required resources to support families and medical teams of a child living with health complexity.

Additional References:
Boss, R. D. (2023). Palliative care for NICU survivors with chronic critical illness. Semin Fetal Neonatal Med, 101446.

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