It’s hard enough to have end-of-life discussions with adults who face a life-threatening illness and need to figure out how to deal with it, but when such a talk involves seriously sick kids, it gets even tougher. Some children are too young to understand what’s happening to them, and even those who do usually aren’t allowed to make major medical decisions for themselves.

To help health care workers initiate discussions with pediatric patients and their parents earlier, and increase awareness and the use of palliative care – comprehensive treatment and planning to address the discomfort, symptoms and stress of serious illness – the National Institutes of Health’s National Institute of Nursing Research (NINR) launched the Palliative Care: Conversations Matter® campaign.

The University of Vermont Children’s Hospital is one of three evaluation sites nationwide that the NINR chose to test its Conversations Matter campaign materials for nine months. About 20 Vermont doctors and nurses participated and are now providing feedback on the program.

Robert Macauley, M.D., a professor of pediatrics at the UVM College of Medicine and medical director of clinical ethics for UVM Medical Center, coordinated the Conversations Matter pilot program. The NINR liked the idea of including a hospital in a rural area, Macauley says.

Children with advanced disease often have to go to larger cities or at least bigger hospitals for the kind of specialized treatment they need, so that’s more often where palliative care experts are, he says. “To have a pediatric palliative care program in a rural area is unusual.”

UVM Children’s Hospital launched its Pediatric Advanced Care Team eight years ago.  Like many other pediatric palliative care programs, the program avoids the word “palliative” on purpose. “If you have that word on your badge, sometimes they won’t let you in the door,” he says of patients and their families.  “You’re the guys who talk about dying, and some people think that means giving up.”

The Conversations Matter campaign, Macauley says, gives hospital staff a tool to raise awareness. Palliative care is still a growing field, particularly in pediatrics. Most patients don’t realize that it goes well beyond hospice, Macauley says.

For an adult to receive hospice care, he has to be in the last six months of life and refuse life-prolonging treatment.  But as a result of the Affordable Care Act, children in the last six months of life can still pursue potentially curative treatment while on hospice.

That still doesn’t address the needs of children with serious illness who may have more than six months to live.  In 2010, Vermont became one of only a handful of states to implement a Medicaid waiver for pediatric palliative care.  As a result, any child who is likely to die before age 21 is eligible to receive five core services from the state Pediatric Palliative Care Program: care coordination; family training; expressive therapies; skilled respite; and family grief or bereavement counseling.

Read more about the NINR Palliative Care: Conversations Matter® campaign.

PUBLISHED

01-15-2015
Carolyn Shapiro