Background
In this article, we review the history of how clinicians have understood and responded to the suffering of children with serious illnesses, highlighting how an initially narrow focus on anxiety
eventually transformed into a holistic, multidimensional awareness of suffering. Through this transition, and influenced by the adult hospice movement, pediatric palliative care emerged as a new discipline. Becoming a discipline, however, has not been a panacea. Challenges remain for the next generation of pediatric palliative care professionals to address.
Design and Participants
This was a literature review by pediatric palliative care clinicians. Dr Sisk conceptualized the manuscript, performed a literature review, and drafted the initial manuscript; Drs Feudtner, Sourkes, Bluebond, Langner, Hinds, and Wolfe participated in conceptualizing and planning the review study, and reviewed and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
Results
The field of pediatric palliative when small groups of individuals from diverse professional backgrounds became aware of the suffering of children and thought we could do better. Since palliative care began a half century ago, these initial individual efforts have coalesced into a network of like-minded professionals dedicated to relieving the suffering of children with serious, life- limiting illnesses. This development has benefitted from the collaboration of nurses, social workers, anthropologists, physicians, psychologists, academics, advocates, and parents. Now, the passionate leaders who drove this initial development are handing the field over to the next generation. Building on this firm foundation, this next generation must address persistent challenges while also adapting to the changing realities of medicine, politics, and society.
Commentary
The field of pediatric palliative care began a half century ago when small groups of individuals from diverse professional backgrounds became aware of the suffering of children and
thought we could do better. They had a vision for something better for our suffering pediatric patients. Now the suffering of children has been framed as an ethical issue, and the World Health Organization has framed palliative care as an international human right. Quality research has rapidly advanced in the last decade. Yet problems remain. For example, since palliative care is typically a consulting service, to maximize impact it requires the engagement of a primary medical team. Also, to provide seamless care for children at the end of life remains a challenge as children transition from hospital to home or from hospital-based palliative care/hospice to community-based hospice or nursing service.
Bottom Line
To face these and other remaining challenges will require the same compassion and vision of those who initially drove the development of this emerging specialty. The leaders who drove this initial development in palliative care/community hospice are handing the field over to the next generation. Future studies need to move beyond identifying problems and barriers toward implementing the most effective clinical practices to minimize suffering. To achieve these research goals, this field must further develop infrastructure, training, and funding mechanisms to support the development of investigators. This will allow us as palliative care providers to adapt to the changing realities of what lies ahead.
Source: Sisk BA, Feudtner C, Bluebond-Langner M, Sourkes B, Hinds PS, Wolfe J. Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children. Pediatrics. 2020 Jan;145(1):e20191741. doi: 10.1542/peds.2019-1741. Epub 2019 Dec 5. PMID: 31806669; PMCID: PMC6939842.
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