By Deborah L. Dokken
July 7, 2007
When my daughter Abigail was born, and spent months in intensive care, we knew what kind of day it would be when we saw which nurse was assigned to her. So much hinged on the nurses and other clinicians, the lifelines to our baby. One would send off signals that it would be easier if we stayed out of the way. But another would encourage us to parent Abigail in any way possible. Reach out and touch her hand, stroke her head. That nurse told us it made a difference, that our daughter knew we were there, that she knew I was her mom.
Abigail died when she was only six months old and despite incredible advances in medical technology, about 55,000 children still die in U.S. hospitals every year due to prematurity, accidental injury, cancer, birth defects, or other serious illness. Many other children live each year with potentially life-threatening conditions.
Next month, it will be five years since a seminal report, When Children Die, by the Institute of Medicine (IOM) focused its critical eye on end of life care for children. It’s a tough and often unspoken subject, but the IOM tackled it head—on with strong recommendations on ways the medical establishment can and should do more to relieve the suffering—both physical and emotional—of our youngest and most vulnerable patients and their families. I was fortunate to be one of the parents who addressed the IOM about the needs of children and families.
Sadly, five years have produced some, but not enough, progress.
Certainly, significant changes have occurred. The health care system has established some new practice standards, new palliative care teams in place in pediatric hospitals, new educational opportunities for professionals, and coalitions addressing the reimbursement of services for children with life-threatening conditions. Important changes have also been made to better communicate with and support family members.
But medical care for seriously ill children is still lacking in what might be called “the human touch” or “medicine with a heart.” More doctors, nurses, social workers, and others need to improve the ways they interact and communicate with young patients and their families, particularly around the often unthinkable decisions required in end-of-life care.
Toward that end, more than 1,000 physicians, nurses, social workers, and other clinicians, representing 250 institutions, have taken time to participate in workshops where they learn from bereaved parents what young patients and their families go through and need. Developed by the Initiative for Pediatric Palliative Care, these three-day workshops have proved transforming. As one physician said, “the learning was enhanced and illuminated by the parents’ presence, generosity, input, and sharing…I’m blown away and will never be or teach the same.”
Families, too, have benefited, seeing their own painful experience of caring for and losing a child lead to improved care and treatment for others.
Beyond communication and family involvement, we still need better management of pain and other symptoms, more research related to palliative care, and, most importantly, the assurance that all children with potentially life-threatening conditions have access to quality care, whether in the hospital or at home. These were some of the conclusions of a recent forum of clinicians and families representing 50 pediatric programs across the country, the first gathering of its kind since the IOM report.
The landmark report took the position that better care is achievable if coordinated efforts are made at many levels. Five years later, collaboration is occurring, often for the first time—across disciplines, among institutions, within communities, and between clinicians and families. Many health professionals see new hope for humanizing their daily practice. As one said, “the clinicians’ role in health care is really a small part. Family and community are required to make the ‘ensemble’ complete.”
Deborah L. Dokken, MPA, is Associate Director of the Initiative for Pediatric Palliative Care at Education Development Center in Newton, Massachusetts.