Pediatric Palliative Care

Pediatric palliative care is both a philosophy of care and an organized program for delivering care to children with life-threatening conditions and those children's families. The recognition that the child and the family are the unit of care is the foundation upon which palliative care is based. Palliative care promotes clear and culturally sensitive communication among the child, family, and their primary caregivers that assists the family to understand the diagnosis, prognosis, and benefits and burdens of treatment options. It is an integrated approach in which medical science and humanism are merged with the goal of addressing physical, psychosocial, and spiritual needs of these children and their families. It is achieved through an interdisciplinary approach that uses a combination of active and compassionate therapies designed to enhance quality of life for the child and family, thereby minimizing suffering, optimizing function, and providing opportunities for personal growth. Pediatric palliative care is not simply providing care at the end of a child's life; the pediatric palliative care philosophy should be implemented at the time of diagnosis and continue through the child's death, attending to families' needs during bereavement. Palliative care is appropriate over the continuum of a progressive, lifethreatening condition and may be initiated in conjunction with curative treatment.

History of Pediatric Palliative Care

The hospice movement that began in the 1960s with the establishment of St. Christopher's Hospice by Dame Cecily Saunders in London, England, laid the foundation for providing care for individuals with life-limiting illnesses and their families in specialized locations. In the United States, the hospice movement grew from a grassroots beginning with most programs designed as home care support. The hospice concept was adapted to hospital settings of caring for the dying with the establishment of the first hospital-based palliative care unit in Montreal, Canada, established by Dr. Balfour Mount, who coined the term palliative care in 1972.

The development of palliative care for children followed the early footsteps of adult models of care and thus has a more recent history. Loci of care available for palliation in children can be loosely categorized into inpatient, primarily tertiary care children's hospitals, or domiciliary facilities and outpatient or home-based programs. In some places, home care programs are coordinated through inpatient facilities. In addition to the standard [Page 799]hospital, there are freestanding palliative facilities, commonly referred to as hospices. The first of these, Helen House, established in England in 1982, led the way for the establishment of nearly 40 similar facilities throughout the United Kingdom and for the first freestanding children's hospices in North America (Canuck Place in Vancouver, Canada, in 1995), in Australia (Bear Cottage in Sydney in 2000), and in the United States (George Mark Children's House near San Francisco in 2004). In Canada, the hospice concept was applied to children's hospital settings in the mid-1980s with pediatric palliative care programs in both Toronto and Montreal Children's Hospitals. In the United States, the early pediatric palliative care movement was primarily directed toward supporting the dying child and family in their home environment, beginning with Dr. Ida Martinson's pioneering the first home care program for dying children in Minnesota in 1972. The first U.S. hospital-based pediatric palliative care program started in 2001. In hospitals, the pressure for delineated areas for children receiving palliation came originally from those services carrying significant numbers of children with chronic illness in their terminal phase, such as oncology and cystic fibrosis services. In the past decade, many children's hospitals have instituted palliative care programs to provide support and follow-up to children with these and other life-limiting conditions.

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