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.
Plans to open Gilchrist Kids took shape after Johns Hopkins Medicine approached Gilchrist Hospice Care about the need for a children's hospice. Hopkins has a pediatric palliative care program, which is similar to hospice but doesn't prepare the child for death. University of Maryland Medical System also helped develop the hospice.
Gilchrist expects to serve about 75 families from all of the Baltimore region's hospitals in its first year.
Dr. Bob's Place, to be located on North Eutaw Street near Martin Luther King Boulevard, would have 10 private rooms, public rooms and play areas. Officials expect to begin home care by the end of this year and inpatient service by early next year.
Nationally, more strides are being made in hospice care for children.
The federal health care reform legislation, most of which takes effect in 2014, allows children who are enrolled in either Medicaid or the Children's Health Insurance Program to receive hospice services while still receiving curative treatment related for a terminal illness.
And the National Hospice and Palliative Care Organization recently created standards to help hospice programs set up children's services.
"We want you to develop a program, but we want to make sure you develop a program with standards that benefit children," said Susan Huff, director of Pediatrics at Home, the Johns Hopkins program that treats children with major illnesses in their homes. Huff also co-authored the standards for children's hospice.
For Kayla, home hospice care comes as mitochondrial disease, which once left her with a slow heartbeat, now has progressed so that her heart stops for periods, sometimes while she was sleeping. The disease destroys a person's mitochondria, the powerhouse of cells, and eventually leads to organ failure.
"I wake up every day and wonder if this is going to be the last day I have with my daughter," said her dad, Stephen. "Not all parents have to do that."
For years, doctors couldn't diagnose the condition that had Kayla attached to a feeding tube, unable to walk, susceptible to seizures and intolerant of the heat. As part of her own research, Kayla's mom found herself one day reading about mitochondrial disease. She was recently diagnosed with a milder form of it herself.
Stephen and Dawn pushed for doctors to test Kayla for the disease, flying to Atlanta to one of the two hospitals in the country that could perform the fresh muscle biopsy that detects the illness.
The Murphys had finally uncovered Kayla's condition; she was 3 years old. The bad news: There is no cure.
In many respects Kayla has beaten the odds of her condition. She turned six last month, though some doctors didn't think she would live that long. She recently took a trip to Disney World and likes to watch Nickelodeon and go to the movies. She giggles hysterically when her dad picks her up and makes funny faces.
Hospice volunteers and workers, along with the nurse who cares for her daily, help to ensure that she is comfortable. They coordinate the purchase of feeding tubes and other supplies. They soothe her on days and nights she can only cry. They sit by her side when she's sick.
They've also supported Kayla's parents, encouraging them to communicate with each other about their feelings, a task that can be complicated by their differing personalities. Stephen deals with his life's obstacles by joking around. Dawn is more serious and practical.
And though painful, hospice workers and volunteers have prompted them to think about uncomfortable subjects, like planning a funeral. The Murphys say they simply want Kayla to be happy.
"We just want to make her comfortable and give her the best support that we can," Stephen said.