Abstract 193 Clinical Bioethics Poster Symposium, Tuesday, 5/4

Most NICU deaths follow decisions to withhold or withdraw some type of life-sustaining treatment(LST), but few studies explore the process by which such decisions are made. To better describe this process, we interviewed the involved parents, doctors and nurses of NICU babies who died. Semi-structured interviews focused on the respondents' understanding of the baby's condition at the time of the LST decision and of their role in the decision making process. Interviews conducted by a hospital chaplain trained in both bioethics and grief counseling were transcribed and analyzed for recurrent themes. RESULTS: Most deaths occurred either in the first days of life or after a sudden, unexpected event, leaving little time for reflection or discussion. A number of themes recurred in parental interviews. Many parents reported that the during the events surrounding their child's death. they felt shocked, powerless, or in a dreamlike state ("The doctor came in and told me...she was in critical condition. That's all I remember...I kept drifting off." or "The nurses in Labor and Delivery were very good, very kind, but I was sort of in shock.") Sometimes, mothers were quite ill themselves. At other times, these feelings seemed to stem from psychological denial or disbelief. In the weeks after a baby's death, many parents voiced concerns about whether everything had been done. ("I just wish I knew if there was a chance ever and did they do everything, or was there something else they could've done.") Some parents were eager to talk about the events and their feelings surrounding the death; others felt that talking just "reopened old wounds." Doctors tended to view decisions about withholding or withdrawing LST as purely medical decisions, made only after it was clear that further treatment would be futile. Even then, they waited for parental concurrence before stopping ("Something kept me resuscitating, maybe longer than we should've. I wanted to get some word from them... They needed a little time.) Nurses often felt powerless to influence decisions, and expressed concern that the doctors continued treatment for too long. ("He should never have been resuscitated. It was a matter of inexperienced residents. The nurses were pretty upset and told them to quit.") Nurses often provided more emotional support for parents than did doctors, and were often left emotionally drained themselves. Nurses, but not doctors, sometimes took some time off after one of their patients died. CONCLUSIONS: This study suggests that there may be a schism between the intellectualized, bioethical vision of appropriate decisions about LST and the emotional reality. Although we try to empower parents, they often feel overwhelmed and powerless, usually accede to decisions made by doctors, and frequently have unexpressed doubts later about the decisions that were made. A process that acknowledges their inherent vulnerability, rather than one that constructs them as empowered, might be preferable.