A perspective that comes from continuity of care over many years. An awareness of local resources. A sense of who a family is. An appreciation of the things that give life meaning and value to a child and family. Isn’t this care a lot to offer families of seriously ill children? What happens to all of this knowledge when a child becomes more ill and spends increasing amounts of time in the hospital? General pediatricians are uniquely poised to help children with serious illness and their families.
I am now a member of the pediatric advanced care team, a joint palliative care program of Dana-Farber Cancer Institute and Boston Children’s Hospital, but I spent most of my career as a primary care pediatrician, practicing in Cambridge and Boston. I found great satisfaction in helping usher children and families through an incredible period in their lives as I treated the normal illnesses and injuries of childhood and helped to prepare my young patients for healthy adulthoods. Like virtually all pediatricians, I also had some patients facing serious, life-limiting conditions. Some died. Although these children received important aspects of their treatment from specialists, I increasingly realized that I could — and should — have an ongoing role in their care.
Palliative care strives to improve the quality of life of patients facing life-threatening illnesses, as well as the quality of life of their families. It does so through the prevention and relief of suffering by early identification and treatment of pain and other problems, whether physical, psychosocial, or spiritual. It is a relationship-focused intervention, which dovetails with a core strength of primary care. Recent Massachusetts state requirements that physicians be trained in end-of-life care and pain management present a powerful opportunity to capitalize on this strength and integrate the primary care pediatrician into the team caring for seriously ill children.
The need is great. More children are living longer with conditions that previously were fatal at young ages. Even though more infants cared for in our NICUs are surviving, some are burdened by ongoing illness. The large numbers of children with complex, chronic illnesses in our hospitals also spend much of their time at home with their families. It is there that their lives take shape and meaning.
Home includes community and the pediatricians whose practices encompass not only the seriously ill child but healthy siblings, friends and neighbors. Pediatricians know the families they serve and the resources in the communities in which they practice. They understand what animated previous decisions, what the families’ goals are, and how the families confront risk. Children with “terminal” illnesses often lead meaningful lives for years. Indeed, 70 percent of patients consulting palliative care are alive after a year. Even with end-of-life care, primary care pediatricians can promote a life-centered approach that helps families clarify their priorities and helps ensure that their experience remains consistent with what the family wants for their child.
General pediatricians can also offer much to hospital-based medical teams, whose care improves when their understanding of a child goes beyond “the kid with a certain diagnosis in room 4 who’s on a ventilator.” How do the choices being asked of the family align with their long-standing priorities? What will a tracheostomy mean, for instance, in terms of the local school system and community supports? Successful collaboration between the primary care physician and specialty team includes the timely sharing of information, mutual inclusion in clarifying goals of care and medical decision-making, coordinated designation of responsibilities, and explicit review of case management and social work needs.
General pediatricians are well positioned to handle basic issues of adjustment, behavior and siblings. In collaboration with palliative care specialists, they can provide basic pain and symptom management. Pediatricians’ ongoing relationships with patients and their families can inform discussions of prognosis, suffering, goals of care and code status. Families appreciate their pediatrician’s continued involvement. In conducting research on families that lost a child, I found that even when medical decisions were outside the realm of primary care, it mattered to them that the pediatrician remained informed. It mattered that they could come to the pediatrician for explanations and their perspective. It mattered that the pediatrician focused on their bereavement needs. The community-based pediatrician, after all, has a privileged role that will continue with the family and their surviving children.
Supporting community-based pediatricians to do much more for children with complex, life-limiting illness is a logical extension of what they already do and builds on their considerable strengths. Anything the medical system can do to promote this translates into better, more cost-effective care for these children and their families.
Richard Goldstein is a pediatrician. This article originally appeared in The Forum, the quarterly newsletter of the Massachusetts Chapter of the American Academy of Pediatrics.