As a pediatric resident, Amy Trowbridge, MD, encountered the death of a patient infrequently. Later in her career, she found the same was true for the residents she teaches.
“Generally, this is a good thing. Chronically or critically ill children are living longer, fuller lives, and that should be celebrated,” says Trowbridge, an assistant professor of pediatrics and palliative care at Seattle Children’s Hospital.
However, Trowbridge worried that pediatric residents do not receive enough exposure to family-centered, end-of-life care. “When children die, they deserve to have a clinical team caring for them that is competent and experienced in providing this type of care,” Trowbridge offers.
Trowbridge and colleagues wanted to quantify how often residents are involved in the care of a child at the end of life, and under what circumstances. Researchers conducted a retrospective chart review of all deceased patients at a children’s hospital over a three-year period. The study revealed that most pediatric residents had limited exposure to end-of-life care.1 This was expected; more surprising was the finding that the average pediatric resident is involved in the care of a child at the end of life less than six times over their residency.
“That’s not very many, and this is in a very busy, highly specialized children’s hospital,” Trowbridge observes, adding that the numbers probably are even lower in residency programs at community hospitals or less specialized children’s hospitals. “When we consider this from an educational perspective, it begs the question of how do we best train residents in end-of-life care?”
For ethicists, it is important to bear in mind that end-of-life care is a rare clinical event for trainees. “These trainees may need extra support, as well as clinical insight and education from all of the involved consultants in the case, including ethicists,” Trowbridge explains.
Most deaths in pediatrics do not involve ethical concerns. However, ethical questions regarding decision-making and discontinuation of life-extending therapies are common.
Trowbridge says ethicists can approach these cases “with the awareness that from a learner perspective, these situations are rare and often one of the most challenging and memorable experiences of pediatric trainees.”
- Trowbridge A, Bamat T, Griffis H, et al. Pediatric resident experience caring for children at the end of life in a children’s hospital. Acad Pediatr 2019; Jul 31. pii: S1876-2859(19)30341-9. doi: 10.1016/j.acap.2019.07.008. [Epub ahead of print].