In America, we tend not to die well. The U.S. ranked ninth out of 80 countries on the Economist’s Quality of Death Index for 2015. Buoyed by the high quality of end-of-life care, we lag behind other developed nations in terms of affordability and the number of specialists helping us die—for every 1,200 patients dying in 2011, there was just one qualified doctor. Meanwhile the United Kingdom—where the idea of end-of-life care was invented—was ranked first thanks to near-universal patient understanding of the services available to them and for ease of access to those services.
There’s been a growing trend in recent years to recognize these shortcomings in the U.S. But even as new methods are employed, there’s one group of patients that have been left out: kids.
In the U.S., about 41,000 children and young adults die each year from a variety of illnesses, ranging from congenital defects to accidents. Many of them qualified for palliative care, which includes planning and pain management, and for hospice care, which is provided in the last six months of life. But the number of dying children is dwarfed by the more than 2.5 million adults who die each year, many of whom also qualified for these end-of-life services. And that’s precisely the problem: The low demand has made it very tricky to set up effective palliative care programs for children.
But that doesn’t mean there isn’t a need. It’s just been hard to fill.
Most pediatricians want to focus on kids getting better. So they don’t want to move or pay large sums to go back to school for the training they would need to help kids die. And doctors already specializing in hospice care for adults aren’t a perfect solution either, says pediatric nurse Suzanne Gwynn. Children have different needs.
Physically, children are smaller and more sensitive, especially to drugs. While too few painkillers can leave a kid to suffer, too many can hinder cognitive development or cause other damage. In a specialized fellowship, doctors learn how to walk this line, as well as navigate dosing for a patient too young to communicate the extent of their pain clearly.
The emotions a family experiences when a child is dying are also unique, and the care team must be aware of these nuances. Terminally ill children should receive art and music therapy to help them enjoy their final days and process their fears. While people often step in to care for dying family members, helping an older parent die is different from parting with your 6-year-old. As a result, parents of dying children need to be educated in symptom management and pain alleviation as well as be provided with emotional support and respite. Their other children are often also young and forced to spend months or years of their life waiting at hospital bedsides. These kids struggle to comprehend death, let alone the death of a brother or sister. They need help to cope with their impending loss, too.
Without doctors, nurses and social workers trained in the nuances of their grief, families can feel unsupported. One study found that while the majority of Swedish parents remembered someone on the end-of-life care team going above and beyond to provide support at the end of their child’s life, 25 percent also remembered a another provider doing or saying something that hurt them or their family, compounding their grief.
In addition to wading through their sadness, families want to try to find joy in the time they have left. Specialized providers are ready to make this happen, whether it’s by packing up pain medications to take on a family trip, or suspending treatment so a teenager can go to prom. Without specialized providers who can plan for such events, some of these moments may be missed, Gwynn says.
And yet, specialized services for dying children remain relatively scarce. One reason for the problems facing end-of-life care in general is that palliative care often demands physical closeness between a patient and their provider. Long stays in the hospital could solve this, but often cause other problems, because most Americans want to die in their homes.
In response, adult hospice care has grown to the point that many adults, even in rural areas, have access to in-home hospice care. Services for children, however, tend to still be limited to big cities with well-established children’s hospitals, where the few doctors who have done pediatric palliative care fellowships are concentrated.
Some families have tried to bridge this gap in care by signing up for an adult hospice nurse to care for their child in the home. But they find that many nurses choose to serve adults for a reason, Gwynn says. Signing up to be a palliative care nurse already requires a very specific temperament—signing on to do the same job for children is a step beyond. Many adult nurses don’t want to care for children, Gwynn says, or don’t feel able to help them die.
This is only exacerbated by the U.S.’s death-denying medical system. Medical intervention is so often successful in extending lives, Americans tend to be even more unwilling than most when it comes to stopping treatments even when they aren’t working or coping with the inevitability of death. This is especially difficult with children, who most of us believe are simply not supposed to die.
Still, what keeps most pediatric care providers up at night is not death or loss. It’s insurance.
Many palliative and hospice care programs are not sufficiently reimbursed by insurance companies. While this is a problem for both children and adults, pediatric palliative and hospice care is uniquely expensive. Children tend to die from more complex illnesses than adults, which require intensive management over many years. Children also need additional social workers, art therapists, and other forms of support. Adults, meanwhile, tend to have shorter illnesses, require fewer services and spend, on average, only 72 days in hospice care before dying.
The lower cost of adult care is further offset by the large number of adult palliative and hospice care patients. While some adult patients need extra services, most don’t, so the average cost of care in the entire adult hospice population remains low. Because insurance tends to reimburse one flat daily fee for patients receiving end-of-life care, hospices can divert the money they save on one stable patient to another patient in need of more intensive care. Because almost all pediatric patients require intensive and long-term care, and the overall number of pediatric patients is small, the average cost of care in this population remains high, as there are few “cheap” patients to offset the costs of more “expensive” patients.
Other countries have found their own successful and sustainable solutions. In the U.K., pediatric patients with life-limiting illness can enroll in a dedicated child hospice home, a compromise between hospital care and an in-home environment. The first of these homes in the world, Helen House, was founded in Oxford, England, in 1982. There, children can receive specialized medical care at a time while surrounded by family in a home-like environment. Today, dozens of these homes are operating across England, as well as Canada and Australia.
Some providers are trying to adapt this hospice-home model in the U.S., but so far they’ve had little success. Gwynn, the pediatric nurse, has tried for years to open Ladybug House in Washington state. She envisions a sprawling estate that would allow families from rural areas across the Pacific Northwest to live in Seattle, near the region’s only children’s hospital, but still feel like they’re at home, whether that was originally Walla Walla, Washington, or Wasilla, Alaska. But insurance companies have been reluctant to reimburse even the most fundamental parts of palliative and hospice care, so they’ve been characteristically hesitant to underwrite a project as comprehensive as Gwynn’s.
Homes in the U.K. have overcome the same obstacle through philanthropy. Only 15 percent of the $5 million pounds required to operate the U.K.’s Helen Houses each year comes from the National Health Service and local governments. But Gwynn has found many Americans are unaware of the needs of dying children or, when she tells them her plan, think such a facility shouldn’t be paid for primarily with private funding.
Skepticism exists even among Gwynn’s peers in the pediatric palliative care industry. “When you ask children what’s important to them, most say, ‘I want to be at home.’ They don’t want to be in a facility,” says Glenn Komatsu, a pediatric palliative and hospice care expert in California.
The exact right method of delivering child-focused palliative care in the U.S. is clearly to be determined. For now, it seems the start of the conversation would come in acknowledging that there is even a problem at all.