The Foundation is at the forefront of the movement to build awareness of palliative care generally and to promote pediatric palliative care specifically. Palliative care is often misunderstood. People often associate it with end-of-life care or “giving up” — especially when facing a serious health challenge. At its core, palliative care is an extra-layer of support that is provided by an interdisciplinary team of doctor, nurse, social worker and other specialists to provide relief from the symptoms, pain and psycho-social and emotional stress of disease for both the patient and the family. It is appropriate for any stage of illness and can be concurrent with curative treatments. The goal of palliative care is to ensure quality of life and to ensure that families are agents in the care plan so that medical decisions are patient and family-focused, not disease-driven. Imagine then what an especially powerful role palliative care plays for parents caring for children with life-limiting illness! It makes ALL the difference. It is our vision that all families whose children suffer from life-threatening or limiting illness have access to palliative care.
Organizations we have partnered with and funded:
American Academy of Pediatrics
The Foundation partnered with the AAP’s Section on Hospice and Palliative Medicine to produce the award-winning film Cameron’s Arc, which tells the story of how sensitive family-centered care was delivered by a community pediatrician from the time of diagnosis through to end-of-life of an with Tay-Sachs disease. It explores effective parent-profesional communication across critical points in the care of a terminally ill child, and is designed as a training tool for pediatric professionals. Of Cameron’s Arc, reknowned doctor Dr. Arnold Gold says, “This film demonstrates how a caring, respectful relationship between doctors and patientscan lead to better outcomes, even in the face of inevitable death. This film will inspire insight and kindle appreciation for the art of medicine – and would be beneficial to doctors at every stage of their professional experience…from medical student to veteran clinician.”Cameron’s Arc is available through the AAP Bookstore.
Boston Children’s Hospital/Dana-Farber’s Palliative Advance Care Team
The Foundation funded a two-year nurse fellowship at one of the world’s leading pediatric palliative care teams.
Boston Medical Center
The Foundation funded research into the role of the primary care doctor in quality of end-of-life care for poor children in urban hospitals. The findings were published in 2013 in the Journal of Palliative Medicine.
This is part of our ongoing commitment to build the field, to identify the range of pediatric palliative care services for families across critical divides such as income and geography and to provide programming that meets the needs of all families.
CAPC funds palliative care program development in hospitals around the country. The Foundation’s support of the CAPC’s activities in pediatrics has resulted in: (1) the publication in the journal PEDIATRICS of the results of a ground-breaking survey of existing palliative care programs in children’s hospitals nationwide; (2) the development of pediatric palliative care programs through five seminars reaching over 1000 pediatric specialists; (3) the enhancement of CAPC’s pediatrics curriculum; and (4) additional outreach activities to build the field.
NPCRC stimulates and funds research to improve care for seriously ill patients and their families. The Foundation has funded a pediatric fellowship for Dr. Kira Bona’s work to understand the relationship between poverty and patterns of care in children with life-threatening illness. This work will lay the foundation for a multi-center trial examining the impact of family material hardship on suffering in pediatric oncology patients. We are pleased to support this focus on disparities in pediatric palliative care.