Today’s guest blog comes to us from Dr. Tressia Shaw, MD, Medical Director at Ryan House in Phoenix. Ryan House provides care and support to children with life-limiting or life-threatening conditions. AzCentral.com did a story on Ryan House last year calling it “an Arizona Gem,” and describing it as “an innovative concept at the forefront of pediatric palliative care.” To hear what families say about Ryan House, click here or on the picture below. The Arizona Hospital and Healthcare Association (AzHHA) is proud to call Ryan House one of its Healthcare members!
Pediatric Palliative Care
Often when I meet a child and family for the first time, there is some confusion about why palliative care is getting involved. Many people think that you only get palliative care once everyone has “given up” or it is time to transition to end of life care. While end of life care is part of what palliative care does, it is certainly not the only focus. Palliative care addresses physical, intellectual, emotional, spiritual, and social needs that a patient and family can encounter throughout the entire trajectory of a life limiting illness or condition. This philosophy of care seeks to “optimize quality of life by anticipating, preventing, and treating suffering” in an approach that is patient and family centered and advocates for their goals and choices. Care is coordinated and can occur alongside life prolonging or curative measures.
So, what does this kind of care really mean for children and their families?
Ideally, the palliative care team meets a child and family at or near the time of diagnosis of a life limiting condition. An initial meeting might focus more on understanding of the diagnosis and setting goals of care, while also providing emotional support about the news of a life limiting diagnosis. With the entire family in mind, siblings may need special support in understanding what is happening. Over time, as a child’s condition changes, the Palliative Care team often discuses medical interventions with the family and child to determine goals of care and how these decisions would affect the child’s quality of life. Management of symptoms that may be affecting quality of life is a constant discussion. If end of life care is needed, the team discusses choices, supports the family in their decisions, provides emotional support, and symptom management for comfort. Palliative Care often helps with difficult decisions that families face in their child’s care. To hear how Palliative Care helps families and children in their own words, please visit these links on the Courageous Parents Network:
It is difficult to estimate how many children in the United States qualify for Palliative Care services. Children’s International Project on Palliative/Hospice Services (ChiPPS) estimated in 2001 that on any given day 8,600 children in the US likely qualify for Palliative Care services. Many people feel this number is much larger as the population of children with complex chronic medical conditions continues to grow. What is clear is that this is a growing specialty, with 69% of US hospitals reporting a palliative care program, but only 30% of programs reporting home visit services.
In Phoenix, Arizona, we are very fortunate to have Palliative Care services available that can span the continuum of care – hospital based, an inpatient hospice/palliative care unit, and home based services. The most unique part of this continuum is Ryan House www.ryanhouse.org. Ryan House provides respite and palliative care services, as well as, end of life care through hospice services. Ryan House just recently celebrated its 7th anniversary and is one of only a few pediatric specific respite, palliative care, and hospice units in the country.
Ryan House isn’t simply a place of care, it is also a place of comfort. A home away from home for the patients and families who need it most. An innovative facility that can change the way we think about pediatric palliative care – and help Arizona take another step toward one day becoming the Healthiest State in the Nation!”