There are several reasons for this, starting with the fact that states have different regulations and licenses. Finances prove to be the biggest hurdle, however. Some 20 groups across the country are currently raising money, trying to establish their own homes. Comparing George Mark and its American peers, real and prospective, with their equivalents in England is instructive. There, the National Health Service and local governments cover 22 percent of the costs, on average, while the rest as is the case with George Mark comes from philanthropic sources.
But because these homes have deep roots in England, funding them there is much easier than it is in the United States. The buildings themselves have often been financed by donations, minimizing initial costs. Doctors and patients tend to pursue every drug and procedure to the last drawn-out end. Letting a child die violates that ethos. After it reopened six months later, financial considerations played a much more central role in its operations. Because California pays for respite stays for disabled children, even those with normal life expectancies, George Mark began to take in many more such residents.
Reimbursements can be inconsistent or meager. But until then, how to build more of them? John Irwin, who was the medical director at Dr. In adult facilities, strict criteria must be met first for overnight stays, showing why home care is insufficient.
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Then, if patients survive there longer than expected — more than a week generally raises flags — they may have to move back home to die or pay out of pocket for room and board. Some specialists in pediatric palliative care would rather not see health care dollars be directed toward these houses at all.
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Hospital stays are expensive, but this approach is far more sustainable because it uses existing infrastructure. Feudtner agrees, though he would focus on expanding home hospice care. But you could not, with double the money, build anywhere near the number of these facilities you would need. The cost comparison is crude: If hospice care was overhauled to serve children and their families, it would potentially cost more than adult services because the care delivered would most likely be more specialized and time-intensive.
The impulse to serve the collective many over the individual few is hard to assail. And yet, for those who have seen how certain children and families desperately and urgently need and benefit from the care at George Mark, so, too, is the vision of hospice homes devoted to children. At one point, a deer walked onto the patio and put its nose against the window.
The next morning, relatives and friends returned and gathered in the Crescent Cove living room.
At a. The nurses gave Parker medications to make him comfortable. Alissa held him. Thirty minutes later, his heart stopped. The staff looked after everyone, not just Parker. Home-cooked meals continually appeared from the kitchen. When Hadley became restless, volunteers played with her. It was a safe place for our emotions and how we were all feeling. To try to lessen some of the grief of returning home, Crescent Cove took in all his medical equipment. Since his death, staff members have called the Grafs several times and visited them at their home.
In January, Nathalia Hawley, a terminally ill year-old with metastatic bone cancer, entered Crescent Cove for the first time.
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Though she had been reluctant initially, uncertain about what the place was, she liked it so much that she stayed for two weeks. What she found especially meaningful was doing art projects with the staff. When we spoke a few weeks before her death this April, she paused every two to three words to regain her breath. For the Golds, also, that has been the consoling power of the place.
The first time they saw it in something close to its current state was one fall Saturday in , when the renovations were nearly complete. Emily Gold slowly pushed Lizzie in her stroller in and out of each bedroom, pausing in front of the windows to look out at the lake. It is a connection that will survive Lizzie, who died in a hospital on May 9.
A viral infection led so swiftly to a collapsed lung and then death that the Golds had no opportunity to take her to the hospice home for the end. Shortly after Lizzie died, however, the family drove to the facility, arriving just before her body, brought by a funeral van. Her nurse from Crescent Cove went out to get her, removed the white cloth she had been wrapped in and carried her back into the home. Helen Ouyang is a physician, writer and assistant professor at Columbia University. She has been a finalist for the National Magazine Award. This is her first article for the magazine.
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