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When is Pediatric Palliative and Hospice Care Appropriate? Answers from the Experts
By Nancy Kennedy

The terms "hospice" and "palliative care" have become familiar to most Americans, but there are misunderstandings about just what these terms mean, how they are different and who is eligible to receive such care. This confusion may be more prevalent in pediatrics because the needs of sick children and families are unique and often complex. The Pediatric Palliative Care Coalition (PPCC), a statewide advocacy and education non-profit that endeavors to improve the quality and availability of hospice and palliative care services to children throughout Pennsylvania, offers definitions and information to help explain the terms and clarify how and to whom the services are provided.

According to PPCC and the National Hospice and Palliative Care Organization, pediatric palliative care means child and family-centered care that optimizes quality of life by anticipating, preventing and treating suffering. It is for any child with a serious illness, at any stage, and it is not dependent on prognosis. It addresses physical, intellectual, emotional, social and spiritual needs through the continuum of illness.

Pediatric hospice care provides expert medical care, pain management, and palliative care plus emotional support to patients and families, when a child is facing a life limiting illness or dying. Hospice care focuses on caring, not curing. Palliative care can be given for years, while hospice care is more short-term, usually provided when there is a prognosis of six months or less.

"Pediatric palliative and hospice care is both a philosophy of care and a method for delivering care to children with chronic, complex and life threatening conditions," says Sarah Friebert, M.D., FAAP, FAAHPM, a board certified specialist in the field and a pediatric hematologist/oncologist at Akron Children's Hospital. "It also means care of the family. This care is planned and delivered by an interdisciplinary team and can be provided along with disease-modifying care, also called curative care."

In the United States, an average of 53,000 children die every year, and 400,000 live with chronic, life-threatening illness. According to the Department of Health and Human Services, 15% of American children – 11.2 million kids - are considered to have special medical needs, and many of them have multiple chronic conditions. Many of these children will benefit from palliative and hospice care, but may not be identified as eligible by those caring for them. Betsy Hawley, executive director of PPCC, says that many more children could, and should, receive palliative care services. "Identifying these children is a challenge, but in general services are for any child whose medical condition is such that they will benefit from palliative care, and for any child who is dying or is going to die. Diagnosis alone does not determine eligibility. All sick kids should have access to pediatric palliative care." Very ill children may also be eligible to receive "concurrent care" – a combination of curative care and hospice/palliative care, at the same time. The Affordable Care Act provides for this, so that now, a child that meets hospice eligibility can still get disease-modifying care.

While the death rate for children is decreasing, the population of children with life threatening medical conditions is increasing, due to advances in pediatric medical science: children who would have died a few years ago are now living longer with illnesses that become chronic. Medical conditions of children who do receive services include cancer, congenital heart disease, lung disease, problems associated with prematurity or low birth weight, neurological problems and metabolic diseases, and many more conditions. These children require sophisticated, often high-tech care that must be provided by pediatric-trained healthcare professionals. Pediatric medical care is different from adult care in significant ways – more attention must be given to safety, pain management and communication approaches, and caregivers must be aware of the developmental needs of children and the needs of families.

One of the challenges faced by pediatric palliative and hospice care physicians is developing the workforce that can meet the needs of this population, especially as the trend leans toward community-based care. "We need to attract any potential stakeholder for this population," Dr. Friebert says. "There are not enough pediatric people and we need people to understand and demand this kind of care. A lot of work needs to be done – improving quality, more research, and more creative care - to advance the care of children and families who are coping with life-threatening conditions, chronic/complex conditions, dying and bereavement."

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