Views of bereaved multiple-birth parents on life support decisions, the dying process, and discussions surrounding death

Objective: This study assessed the experiences of bereaved parents of multiples with resuscitation and life-support discussions, the death process, and conversations with health-care professionals about death. Study Design: In all, 71 bereaved parents of multiples recruited from Internet support groups completed a narrative e-mail survey assessing many facets of bereavement. Numeric data were analyzed using simple quantitative analysis, with a grounded theory approach used for qualitative data. Results: Most decisions were collaborative, with occasional directive comments. Some decisions were made during crises. Occasionally, parents initiated life-support discussions. Multidisciplinary meetings occurred with 30%, but were desired by more parents. A total of 18% of parents encountered criticism of choices. Most parents attended resuscitation, and found meaning in holding their dying children. Many desire privacy, availability of symptom management, and family or clergy involvement. Photographs of multiples together are valued. Parents offered many suggestions for compassionate death notification, which most felt should occur in person if parents are not present for the death. Respondents valued clear, prompt discussion of the cause of death, and clinician availability for later review of clinical events or decisions. Conclusions: Multiple-birth parents' choices resemble those of singleton parents at the end of an infant's life.