Please can we have the Perinatal Hospice approach now.
Thankyou to Pauline Thiele for writing so bravely about her son Liam
and for the pointers she gives to better practice. It seems that, as a
profession, we still flounder when faced with someone who wants to
continue a pregnancy where the child is unlikely to survive. In this case,
Pauline was able to gather around her a supportive GP, paediatrician and
palliative care specialist but still had to endure lack of communication
between departments and crass insensitivities.
Amy Kuebelbeck,a journalist, and Deborah L Davis, a developmental
psychologist have recently published a resource book for women/couples who
find themselves in the same situation as Pauline and her husband. "A Gift
of Time - Continuing Your Pregnancy When Your Baby's Life is Expected to
Be Brief" is compiled from interviews and questionnaires, shaping parents'
own experiences into a comprehensive companion, from the time that
problems are discovered, through pregnancy, birth and beyond. Amy
Kuebelbeck, since the death of her own son, has been an advocate of the
"perinatal hospice movement". This does not require dedicated teams
(although that is the ideal) but is an "approach" or "model" in which
health professionals, family and friends can work together with the
parent(s)to provide hospice care for the unborn child
Pauline Thiele recommends management plans and multidisciplinary
working where a pregnancy is complicated by fetal abnormality. The
perinatal hospice approach would provide the framework for such a way of
Competing interests: 18 years ago, my husband and I had wonderful support from hospital staff during my pregnancy with our first daughter, who was found to have renal agenesis during a scan at 18 weeks.