Death,Palliative care,Hospice,Child,United States,Pediatrics,Pain,Adult,Pain management,Nursing

American Children Deserve a Better Death

January 3, 2017
in Kids

Photo illustration by Slate. Photo by Jupiterimages/Thinkstock. Specialized services for dying children remain relatively scarce. 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...

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