In February 2002 Sean, a triplet who had a brain-bleed before birth, was born with an abnormal accumulation of fluid on his brain (hydrocephalus). He had multiple brain infections and in May 2002 was expected to live days maybe weeks. He was placed into the Carousel Program’s hospice care*. The infant’s family was homeless with many needs. Sean’s care and family support were all encompassing and critical. He was eventually transferred out of hospice care and into the Carousel Program’s palliative care** because his terminal diagnosis exceeded six months.
Sean recently celebrated his first birthday. Through prudent patient care coordination, his clinicians are hoping to transfer Sean out of palliative care and into home health care***. He has experienced incredible medical advancements.
The movements of a carousel ride exemplify Sean’s progress beginning with hospice care, passing through palliative care, and eventually rotating into home health care. His health continues to whirl round and round while at the same time to move up and down.
The Carousel Program is committed to the well being of pediatric patients and their families. Even though Sean’s purpose of care has changed over the past year, his health care professionals have not. The care team that started with Sean when he was admitted into pediatric hospice care has transitioned with him into palliative care and will eventually shift into home health care with him as well. This continuity of care is critical to the physical and mental health of all pediatric patients and their families.
Challenge of Pediatric Patient Care
Sean’s home medical care has been comprehensive and effective. This patient’s case presents a difficult challenge for the Carousel Program. To illustrate this point, we have broken down Sean’s patient care into a manageable example. We will review three months of his palliative medical history.
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October
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November
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December
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Number of Hours
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14.25
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19.25
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16.25
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DSHS billable visits
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2
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2
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5
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Actual Costs
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$570
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$770
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$650
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Reimbursement (anticipated)
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$246
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$246
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$615
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Difference (loss)
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($324)
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($524)
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($35)
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Summary
In 2002, 33% of Washington State’s DSHS Palliative Care Project deaths were patients of our Carousel Program. The Carousel Program provided service to 1/3 of Washington State’s underserved pediatric palliative care population. The need for pediatric patient care is rising and yet the reimbursement schedule does not fund our costs. This program is critical to the well being of children like Sean living in the central Puget Sound area. In an effort to be fiscally responsible, our Board of Directors has aggressively compared our actual costs to the reimbursements received. Our Board is coordinating an internal and external funding structure to help combat this blatant discrepancy so that patients like Sean will continue to receive our specialized pediatric home health services.
Definitions
*Hospice Care: Seeks to enhance the quality of life for children with a terminal prognosis of six months or less.
**Palliative Care: Seeks to enhance quality of life in the face of a life-limiting diagnosis that exceeds a six-month prognosis. The medical care can be aggressive/curative as well as comfort care only.
***Home Health Care: Service for children recovering at home from an accident, illness, surgery, or coping with a chronic illness.
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