Follow up care of bereaved parents after treatment withdrawal from newborns
H E McHaffiea, I A Laingb, D J Lloydc
a Medical Ethics,
Department of Medicine, University of Edinburgh, Edinburgh, Scotland,
UK, b Neonatal Unit, Simpson
Memorial Maternity Pavilion, Edinburgh, c Aberdeen Maternity Hospital, Aberdeen, Scotland,
UK
Correspondence to: Dr McHaffie, Medical Ethics, Department of Medicine, University of Edinburgh, Royal Infirmary, Lauriston Place, Edinburgh EH3 9YW, Scotland, UK hazel.mchaffie{at}ed.ac.uk
Accepted 9 October
2000
OBJECTIVE
To explore
parents' experiences of bereavement care after withdrawal of newborn
intensive care.
DESIGNFace to face
interviews with 108 parents of 62 babies born over two calendar years
in the East of Scotland.
RESULTSOnly 22% were
seen by six weeks after the death, 10% were not recalled before 6-11
months, and 8% were not seen at all in the first year. All except one
couple saw the neonatologist who had cared for their baby. Only 33%
remembered a neonatal nurse being present. Most (88%) were seen in the
study hospital. Parents highlighted a number of specific needs.
Appointments should be: (a) scheduled soon
after the death of the baby and certainly within two months of the
death irrespective of whether or not autopsy results are available;
(b) with the named neonatologist;
(c) in a setting away from the hospital if
possible. Parents value: (a) efforts to find
out how they are coping; (b) full frank
information given sensitively to enable them to build up a cohesive
picture of what happened and assess their future risks;
(c) reassurance where possible, but half
truths, false reassurances, and broken promises are unacceptable.
CONCLUSIONSFollow up
care is a crucial part of the management of families from whose babies
treatment has been withdrawn. Resources devoted to it should be
re-examined to provide a service more in tune with parental need. In
choosing the place, timing, and conduct of the meeting, staff should be
sensitive to the expressed wishes of the parents themselves.
Keywords: follow up; treatment withdrawal; bereaved parents; neonatal
© 2001 by Archives of Disease in Childhood
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