That quotation is the title of a touching and thought provoking article just published (Berg SF, Paulsen OG, Carter BS. Why Were They in Such a Hurry to See Her Die? American Journal of Hospice and Palliative Medicine. 2013;30(4):406-8.) It is the personal story of a couple who had a baby with trisomy 18. Their individual history mirrors much of what Annie Janvier, Barb Farlow and Ben Wilfond described in their survey of many hundreds of families. It relates the lack of comprehension of many that they did not want an abortion, and the sometimes outright refusal to consider any options in the care of their baby.
At one point the couple go to see a neonatologist to discuss options of care: this was the response ‘The physician gave us the impression that this monster should have been removed long ago and that she was as good as dead.’
The most disturbing part of the story occurs when Evy is born. Despite an agreement to provide modest resuscitation if she doesn’t breathe immediately, no-one intervenes and the father, an intensive care physician/anesthesiologist, has to take her and do the resuscitation himself.
The parents describe how much the 3 days of Evy’s life affected them for the good, which helps us to remember that the value of a life cannot be measured in hours.
The story is accompanied by a discussion by Brian Carter, in which he addresses the issues, and the need to individualize our counseling and decision -making to the desires and values of the family. I think I can be proud that he then uses a list that I created for a previous blog post. It is a list of tips and suggestions to use when talking to parents who have a fetal, or neonatal, diagnosis of a potentially life-limiting condition. It was based on comments from families in Annie Janvier’s paper referred to above, of things that they appreciated, and things that they disliked, in their interaction with physicians, and other care-givers. Unfortunately he improved it a little (and also toned down the language a bit for a respectable journal rather than a blog). So here is the Carter revision of the Barrington tips for being a humane doctor (or other caregiver) in that situation.
(You can click to enlarge)