Dawn Murphy holds her daughter Kayla, who seemed more interested… (Baltimore Sun photo by Jed…)
When the debilitating cell disease that had plagued their daughter since birth began last year to stop her heart for several minutes at a time, Dawn and Stephen Murphy turned to home hospice care.
Hospice helped with both the practical and emotional aspects of caring for a 6-year-old child with a terminal illness. Hospice nurses made sure Kayla was comfortable in her Havre de Grace home. Counselors helped the parents cope with the possibility of death.
"We don't want her to be in a sterile hospital environment," said Kayla's mom, Dawn. "We want her to be home with her own things."
But Community Hospice of Maryland suddenly shut down its children's program, Gemstones, earlier this year, notifying the Murphy family in a letter that it had become too expensive to run. The family looked for another children's program, only to discover there were none.
The Murphy family's search for hospice care as their daughter's illness entered its most dire phase underscores the extent to which children are underserved in the hospice industry, which has been geared to adults.
In Maryland, a new home-based hospice program called Gilchrist Kids hopes to fill part of the void and began taking patients — including Kayla — last month. It is the only hospice program in the state currently dedicated entirely to children. And later this year, Dr. Bob's Place, a $4.6 million facility being built in Baltimore, will offer both inpatient and home-based hospice care exclusively for children.
Most children die in intensive-care units at hospitals or in emergency rooms, where the focus is on treatment, rather than comfort and quality of life. Others die at home, but without the hospice services that focus on making the last days painless and comforting.
It's a predicament found in Maryland, where about 900 children die a year, and across the country. Only about 10 percent to 20 percent of dying children receive hospice care, according to the National Hospice and Palliative Care Organization.
That's partly because it can be more costly and complicated to care for dying children, and because insurance rules have made it more difficult for children to qualify for coverage of hospice care.
About 4,000 hospices operate in the United States, but only about 10 percent care for children. There are 30 licensed hospice facilities in Maryland, according to the Hospice and Palliative Care Network of Maryland. While all will take children, they are largely facilities for adults.
"We have been going along like this for 30 years since the hospice movement was started," said Christine Crabbs, executive director of the Hospice and Palliative Care Network of Maryland. "Now, we're realizing that children unfortunately do get terminal illnesses and they do pass away just like adults."
Experts point to a number of reasons why hospice has been largely absent from care plans for dying children.
Oftentimes a team of caregivers with a pediatric specialty is needed to treat child patients, meaning their cases can be more expensive and complex. Children also frequently need more nurse visits than adults.
"There are developmental considerations that are different," said Catherine Y. Hamel, executive director and chief operating officer of Gilchrist Hospice Care in Baltimore County, the parent of Gilchrist Kids. "A two-year-old just can't understand the same thing. The tools you use to explain things are different. You as a clinician have to understand what a child can and can't understand."
Paying for children's hospice also can pose thorny issues.
Under traditional Medicaid models, the state-federal insurance program for the poor, doctors must give children a prognosis of six months to live to qualify for hospice. But that's often not possible because children are more likely than adults to fluctuate in and out of terminal phases, making it harder to predict life expectancy.
This has wide-reaching implications because Medicaid covers health care costs for many terminally ill children, and many private insurance companies follow its rules.
Also, in many cases, parents don't want to forego any potentially curative treatment to put a child in hospice, viewing this as giving up on a child's chance to live longer.
"The philosophy [in hospice] is you have six months left to live and you're not going to do any curative type of treatments; it's symptom management," Crabbs said. "Most children aren't treated that way."
Community Hospice of Maryland shut down the pediatric division because it couldn't afford to staff it with medical workers who specialize in caring for children, said Mollie Haines, director of communications for The Washington Home & Community Hospice, which owns Community Hospice of Maryland. Haines also said children often end up staying longer in hospice than adults, adding to costs.