For most of us, even if we're well-aware of its broad definition, the term "palliative care" is associated with old age. Maybe we'll widen the image field to encompass the frail, middle-aged cancer patient and the shattered accident victim in the emergency department but, in general, we’ll picture the person in need of palliative care as someone knocking at death's door in the fullness of a mature life.
Not Robert Macauley, M.D. His first thought is of children — children with severe illness or injuries. Macauley is medical director of the pediatric advanced care team, or PACT, at Vermont Children's Hospital in Burlington, part of the University of Vermont/Fletcher Allen Health Care system. He's one of fewer than 100 board-certified palliative care pediatricians in the entire country, and his practice is a wrenching reminder that pain, suffering and death have no respect for innocent youth.
Palliative care addresses the spectrum of needs of people who are very sick. It's about alleviating physical torment and debilitating symptoms like nausea and agonizing efforts to breathe, but it's also about providing emotional and spiritual comfort, dignity, and hope for anxious patients and their families. Pediatric palliative care at Fletcher Allen is a transdisciplinary team effort, notes Macauley, emphasizing the unusual prefix to signify that members of his team — physicians, nurses, social workers, medical psychologists, chaplains and art, music and play therapists — are encouraged to cross professional boundaries, “notice things outside their own professional experience” and interact to respond appropriately. "They're not pigeonholed into their own specific subject," he says.
Palliative care has the same focus whether the recipient is a child or an adult. But one of the big differences, Macauley says, is that the trajectory of childhood illness is often longer. And the presumption is that treatment will be more aggressive: A diagnosis that might lead to a conversation about pure palliation and hospice care for a cancer-ridden 90-year-old, he explains, will set off a vigorous round of chemotherapy for a 9-year-old.
And the success rate of the curative therapies that can go hand-in-hand with palliative care is heartening, he declares: "Fortunately, very few pediatric patients, on a percentage basis, die."
Extreme prematurity and cancers fall into the category of potentially survivable conditions for which PACT services may be a powerful adjunct. Others include incurable conditions like muscular dystrophy and cystic fibrosis, whose course can be altered through intensive treatment. Then there are progressive conditions like glycogen-storage diseases, which are metabolic disorders that result from a defect in breaking down glycogen into glucose, and severe cerebral palsy, for which palliative care can play a major role in improving quality of life. The American Academy of Pediatrics, notes Macauley, recommends that the full arsenal of palliative care services be deployed at diagnosis and continued throughout the course of illness, whether the outcome ends in cure or death.
Palliative care for children poses distinct challenges, Macauley notes. Indeed, he says, "every stage of childhood presents different opportunities and different issues at the same time."
Newborns and infants are nonverbal. Toddlers and preschoolers have a flimsy grasp of abstract concepts like death. Teenagers are willful. Many children don’t fully understand that death is a permanent state. Palliative care doctors who treat adults are "wonderful verbal communicators," Macauley says, but with children "you have to figure out other ways" to make meaningful connections.
"Parents have bigger issues," he notes. "They understand the stakes. And certain words throw them — like 'morphine.' When you bring that up, parents will have a concern about addiction."
Support for siblings is as crucial as bolstering the inner resources of family caregivers, adds Macauley. Like their parents, they’re in distress, worried about their brother or sister, perhaps lonely and resentful at having been relegated to the role of second fiddle in the household, perhaps burdened with new responsibilities.
Moreover, says Macauley, "You're always dealing with a sense of injustice. Death is a very sad thing. I wouldn't want to say that one death is more tragic than another … but when you've lived to a nice old age there's a sense that, well, this is inevitable. That concept does not apply to children.
"I like to say," he continues, "that every specialty has a procedure." In orthopedics, it's the joint replacement; in cardiology, it's the stent; in oncology, it's chemotherapy or radiation. And so on. For palliative care physicians, he suggests, "Our 'procedure' is the family meeting. We get people together and we talk."
At the outset, he says, "'Palliation' kind of throws people off, especially when it comes to kids. It creates misconceptions … as if we’re going to give up." Unlike the cardiologist, the urologist or the nephrologist, he continues, "I don't have an organ system that's my focus. I translate. I try to give a sense of the big picture … to keep everything in perspective."
Trauma cases are harrowing. "The more acute the onset, the more difficulties there are, because parents haven't had time to think about these things," Macauley says. Not infrequently, the ethical dilemma he and his team have to work through with the family comes down to, "What do you do when there's no good option?"
Hardest of all, though, are “situations where the parents are requesting treatments for kids who are too young to make decisions, but the burden [of the treatment] so far outweighs the benefits that it’s hard to justify,” he says. "At some time you have to tell parents, no, we can't use fifth-line chemotherapy with a one-in-a-hundred-million chance of success." It's time to think about hospice.
But even that does not mean for children what it means for adults. Medicare and private insurance plans that pay for adult hospice care limit eligibility to patients expected to live no longer than six months. And they stipulate that hospice patients forgo further treatments aimed at curing the condition. Under the Patient Protection and Affordable Care Act, however, palliative care is a mandated Medicaid benefit for all children with terminal diagnoses through age 20, and curative treatment may continue simultaneously. Parents no longer have to choose between respite and possible remedy.
Moreover, a number of states have pursued Medicaid waivers that allow children with terminal conditions to receive hospice services — care coordination, counseling, family training, expressive therapies like art and music, and relief for parents and caregivers — for as long as they need it, up to age 21.
Still, in his emotionally charged subspecialty, Macauley says, "the best thing you can ever hear is, 'We don't need you.'"
David Ollier Weber is a principal of the Kila Springs Group in Placerville, Calif., and a regular contributor to H&HN Daily.
For more on advanced illness management, see the February 2013 cover story "Choices at the End of Life".