Background: Although in-depth interviewing is well suited to studying the sensitive topic of
end-of-life decision making, no reports have been published assessing the effects on parents
of participating in interviews regarding end-of-life decision making for critically ill children.
Objective: To examine the reactions of pediatric intensive care unit (PICU) patients' parents
to interviews on end-of-life decision making for their child.
Methods: We conducted semistructured interviews on end-of-life decision making with
PICU patients' parents from two tertiary care PICUs. We approached 117 parents of 102 patients.
Seventy-four parents (63%) of 69 patients participated.
Results: Forty-three parents (61%) described the interview as "a good experience," 20 (29%)
as "a neutral experience," and 1 (1%) as "a bad experience." The parent who judged the interview
negatively stated that, "It bothers me a little bit because my son is [out] there having
difficulties and I'm in here and not out there." Fifty-four of 59 parents (92%) said they would
participate in another similar interview. Most parents (92%) felt the medical community
should continue research on end-of-life decision making. Themes identified from the responses
included: emotional reaction to the interviews; exposure to end-of-life decision-making
issues; impact on parents' views; and impact on future end-of-life decision making. Parents'
comments suggested that many perceived the interviews as beneficial.
Conclusions: This study demonstrates the willingness of many parents of critically ill children
to participate in study interviews regarding end-of-life decision making, a topic that
most parents felt was important and warranted more research.
