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Palliative care refers to interdisciplinary care for patients with life-limiting illness which improves quality of life through meticulous treatment of physical, emotional, and spiritual suffering. Palliative care is not focused on prolonging life — although this often occurs — and is definitely not involved in hastening death. Since the focus is entirely on quality of life, palliative care works in collaboration with potentially curative treatment.
When people think of pediatric palliative care, they often think of kids dying of cancer. And, while children facing potentially serious illness which may (or may not) be cured are clearly in need of palliative care, they’re not the only ones. Pediatric palliative care benefits children with chronic disease whose symptoms impact their quality of life, as well as families who are facing difficult decisions regarding treatments that have both benefits and burdens.
Pediatric palliative care is less commonly encountered than adult palliative care, in part because children typically receive more aggressive treatment for serious conditions. It’s been said that when a ninety-year-old is diagnosed with cancer, there’s a conversation about what to do; when a nine-year-old is diagnosed with cancer, chemotherapy is started. Yet, this doesn’t mean that children need palliative care any less; quite the opposite: they need it more because of the aggressive treatment involved, which often causes additional symptoms.
While many people equate palliative care with hospice, it’s clear from the above that they are not the same. To receive hospice benefits, a patient must have less than six months left to live and also must forgo potentially curative treatment. These requirements were designed for adults, and both are problematic for children: many serious pediatric conditions are chronic, thus making it difficult to determine when a patient is in their last six months of life. In addition, most parents are understandably reluctant to decline potentially curative treatment, even if the chance of success is remote.
Fortunately, there is hope on the horizon. Several states have passed legislation making it possible for children with life-threatening (but not imminently terminal) conditions to receive both curative and palliative care through the hospice benefit. Vermont did so in 2010, with implementation of the program currently in process.