“She and Anthony decided they would take him off the ventilator the day after his birthday party,” writes Helen Ouyang, MD, in the New York Times. Ouyang leads off her Times article with the story of Alissa and Anthony Graf, who had to make a decision no parent should ever face: putting their 1-year-old son Parker on hospice. And, yes, Parker died the day after his first birthday.
Ouyang is an assistant professor at Columbia University. She is also a writer and, oh, what a writer. By focusing on Parker, who had been born with a malformed brain and other children and families struggling with end-of-life issues, Ouyang drives home the point that non-home-based hospice care for the roughly 43,000 children who die each year is simply not an option.
Hospice facilities are built for the old and dying, not the young and dying.
And while some of these facilities will “take in pediatric patients, there are only three houses in the country that have been specifically designed for children.” The Grafs didn’t want Parker to die at home; they didn’t want that to be a memory that they and their other child would have to live with. But neither did they want Parker to die “amid the fluorescence and thrumming machinery of an intensive-care unit.”
More to the point: End-of-life care in a home can be expensive and inadequate. “Torrie Fields, who manages palliative care at Blue Shield of California, calls it a ‘chicken-and-egg situation’,” writes Ouyang. “Until there are more children’s hospice homes, insurers can easily dismiss them as something they don’t need to cover. If more children’s hospice homes were up and running, then that model of care would be recognized and insurers could be pressured to provide reimbursement. But until then, how to build more of them?”