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With a population 5 times greater and a land mass 40 times larger, you might expect that the United States offers medical services on a much larger scale than our British neighbors. However, one notable exception is palliative care for children with life limiting illness in medical facilities designed specifically for that purpose. As recently as last year, the US had two pediatric palliative care (PPC) Houses compared to the UK’s 55.
PPC Houses are warm, home-like medical facilities, intentionally small in scale, serving fewer than 12 patients at a time, and offering multidisciplinary care to children with life limiting conditions and their families. The staff typically includes a medical director, nursing director, nurses, psychologist, social worker, and child life specialist – all with expertise in pediatric palliative care.
The first pediatric palliative care house in the United States, George Mark Children’s House, opened in 2004 and is located in the San Francisco Bay Area. In 2010 Ryan House opened in conjunction with an adult hospice in Phoenix, Arizona. This year, two new Houses have opened or will soon open: Crescent Cove in Minneapolis and Ava’s House in Sioux Falls, South Dakota (fall 2018). There are another 22 PPC Houses in various stages of development throughout the United States.
While we have a great way to go in recognizing and offering medical and psychosocial care in a comforting setting to all the seriously ill children who might benefit, we are witnessing growth of PPC Houses, and the emergence of a “Like House Coalition”. The following services may be offered by PPC Houses:
- Respite care to provide families responsible for around the clock care of their child with a temporary break, and children with a medically safe and enjoyable place to stay;
- Transitional care to help parents and other guardians learn how to provide care for a child after release from an acute care facility; and
- End of life care to provide compassionate medical care for the child, relieve the discomfort and stress of illness while offering psychosocial support to family, and the time and space to focus on their loved ones.
Founded in 2017 by GMCH, Ryan House and other PPC houses under development, the “Like House Coalition” meets monthly to report progress, share best practices, and explore opportunities for joint activities to raise the visibility of PPC Houses. Potential areas of work for the Coalition include the promotion of uniform licensing and care standards, as well as to inform the development of specific programs in PPC Houses, such as palliative aquatic therapy for medically fragile children.
To learn more about a PPC House, watch Kathy Hull’s George Mark Children’s House’s founder’s 2016 TED Talk.
For more information, please contact Ken Sommer, Facilitator of the Like House Coalition and Director of Advancement, George Mark Children’s House, a Center of Excellence in Pediatric Palliative Care.