This is a book whose time has come.
We are nurses who have seen poor decisions made at the bedside when an infant or child should have been allowed to die with dignity and love and instead received interventions that caused suffering and heartache.
We have said, "I cannot do it. I cannot resuscitate this child one more time."
We understood what a family's life would be like, but they did not, or could not.
We are caregivers to children readmitted over and over, whose parents, upon giving birth to a baby with a life-limiting condition, were not given an option of palliative care.
We have cried with parents and physician colleagues.
We have held children in our arms whose parents stopped coming.
We now have assistance. For any reader who will care for an infant or child at the time of death, or will send a child home with hospice, a new handbook exists that will be a guiding source for years to come.
The authors, Rana Limbo, Brian Carter, and Charlotte Wool, are names well known in the perinatal and neonatal ethics community. They have worked to create 24 chapters solidly packed with information. They have brought in experts in the field to write chapters. The book is divided into five sections: Understanding Palliative Care; Caring for the Whole Family in Palliative Care; Planning and Decision Making; Physical Aspects of Palliative Care: Diagnosis, Treatment, and Outcomes; and Supporting Families and Care Providers through the Nuances of Palliative Care. They reframe the term "incompatible with life" to "compatible with love." The highlights to me were the chapters on working with surgeons and the chapter on medications and comfort measures for the child. I appreciated the pictures on making mementos and the artwork on the cover. I thought it was brilliant to also include a chapter on the mother's postpartum pain. I appreciated the chapter on providers suspending their own biases.
I reviewed the page proofs of this new book. I felt pride, honor, dignity, happiness, and tearfulness...so many feelings wrapped into one. I thought of the growth in the field, from the early work of Kris Swanson and Esposito and Woods in 1980s, the work Brian Carter and I conducted early on and years of further studies and consultations, the support of the National Perinatal Association and the National Association of Neonatal Care, and all the work of Rana Limbo and her colleagues at Resolve Through Sharing and Pregnancy Loss and Infant Death Association. I was touched seeing those early names of pioneers in the field (Hellman, Mendes, Jameton, McHaffie, Kavanagh, Keubelbeck, Kenner, Sumner, Calhoun, Brandon, Carnavale, McGrath, Leuthner, Lamberg, Lathrop, and Torkildson) appear again. I missed seeing Alex Campbell, Peter Hulac, and Kristina Orfali, who also influenced the field.
The depth of this book, with extended inclusion of diagrams, pictures, policies, Web sites, and references, will shape health care thinking in the field. This work will stand. It will provide guidance to others to create a better world for families and caregivers.