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Pediatric Palliative Care
Pediatric palliative care is an innovative and comprehensive medical management model of care for children with life threatening or life limiting conditions at home and in the hospital. It starts from the time of diagnosis, with hope for cure, and through bereavement if needed. This model was developed in the UK and now is being developed in here. The Institute of Medicine’s 2002 report “ When Children Die” was a catalyst for change in the USA. This model is cost effective and shows increased family satisfaction by reducing number and length of hospitalizations as shown by projects in Utah, Colorado and Florida. (Colorado showed a savings of over $20,000 per child)
- 1,200 children in Minnesota are estimated to be living with a life-limiting or terminal conditions and who would benefit from palliative care services. About 250 of those children die every year in our state. Given the population spread, half of these children (600) are likely to live in the Twin Cities where such care is available. Of these only 80-100 receive palliative care through the only licensed provider in Minnesota, Children’s Hospitals and Clinics of Minnesota. This care is presently partially funded by private payors and in a large part by philanthropy.
- State medical assistance is the primary insurance for 50% of these children. Under the current rules families must choose either personal care attendant help or a palliative care nurse. One choice provides personal cares but no medical case management, the other medical case management but no help with personal cares. One is not complete with out the other.
- Pediatric palliative care and hospice needs are different than adults: Children are emotionally, physically and financially more demanding. As a result, pediatric palliative care requires a system that can respond rapidly to changes in order to provide adequate treatment and prevent unnecessary hospitalizations.
Federal Legislation
The Children’s Compassionate Care Act
This legislation will help provide hope, enhance quality of care for children with life-limiting diseases, and help make pediatric palliative care services, resources, and research available to the families and children who need them most. This bill will help children’s hospitals, like Children’s Hospitals and Clinics of Minnesota, continue providing pediatric palliative care, including pain and symptom management, and expand their ability to offer innovative next generation care for children who are not expected to reach adulthood. This bill will directly help children and families who are facing life-limiting diseases and besides offering hope, this bill will provide access to more care and treatment options.
More information on this bill to follow.
State Legislation
Compassion & Hospice Care For Minnesota’s Children Act of 2008
This legislation would allow all children diagnosed with a condition that they may die from to receive palliative care to improve their quality of life through aggressive pain and symptom management. This bill allows the child and their family to seek treatment that could serve to cure their disease or prolong the child’s life expectancy. This bill will help reduce hospitalizations and improve the quality of life for children and their families.
Learn more about the Pediatric Palliative Care Coalition of Minnesota and the Compassion and Hospice Care for Minnesota Children’s Act of 2008.
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