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Caring For Kids With Life-Threatening Illnesses


Kansas City, MO – The idea that a child might die is something that's difficult to grasp, even for hospitals. Children's Mercy in Kansas City has only had a palliative care program for a few years. Rosemary Hubble manages the program. She's a petite woman, originally from Great Britain. But as KCUR's Elana Gordon reports, she serves an important - though not prominently featured - role at the hospital.


Children's Mercy's palliative care program is not in a very obvious part of the hospital. It's located past the elevators, around several hallways, over in the education wing between Truman medical center and Children's Mercy.

It's kind of like a maze getting there.

When you finally do get to Rosemary Hubble's office, it's a stark contrast to the bland hallways in the surrounding area.

"My office has been called the most eclectic office in Children's," Hubble says. "Because I have my [pictures of] race car drivers, my people carrying their work on their back. I have my witches. I have my toys. I have my vultures..."

Hubble laughs and points to Vern and Vernette, two stuffed animals poised on top of a nearby shelf.

"They're loveable," she says. "But they're actually symbolic of the whole issue of how we don't want to talk about death."

Hubble says confronting death can be even more difficult when it comes to a child.

"Because children represent our future. They shouldn't die. The work of a child is to play," says Hubble. "And so when they are ill, and when they have a terminal diagnosis, it becomes even harder for society, family, and even the medical team to actually acknowledge that this may happen, and will happen sometimes."

Which is why, perhaps, programs like the one Hubble oversees are relatively new. The American Academy of Pediatrics issued what Hubbble refers to as a 'wake-up' call in the year 2000. Hubble says before that time, she'd been working in the hospice field and would rarely see a child getting comfort care. She came over to Children's Mercy in 2004. That's when the hospital officially launched its Pediatric Advanced Comfort Care Team [PACCT] (The oncology department, however, has had its own program).

Hubble says PAACT grew out of a desire to create a hospital culture that's more comfortable addressing the complex issues that arise when a child's possibly facing death.

"Part of how it started here was there was a physician who was working with a family with a child with cerebral palsy, who multiple times came in to the intensive care unit to be treated for pneumonia," Hubble says. "[The child was] put on a vent, and it was a very poor quality of life. And it was suggested that they [the family] don't have to, that you have a choice. And the mother and father worked at different speeds to come to accept it was ok to allow a child to die in the normal process of the prognosis, rather than keep doing things because they could."

"And that's one of the issues we have," says Hubble. "Is that we have a lot of technology that we can do. And the question is, should we always use it? Because sometimes we are doing it to the child rather than for the child. And we always need to base it on what is the quality of life for the child."

Hubble says palliative care stresses the importance of treating symptoms as much as the illness itself. She says unlike for adults, though, the two approaches - aggressive interventions for a cure on the one hand, and palliative comfort care on the other - can go hand in hand for children.

In fact, Children's Mercy's program has just four full time nurses, but they work within a child's primary care team, starting right at the time a child's diagnosed with a life-threatening disease. Hubble says PACCT's role is to help create a space for families to figure out that balance of care.

She says there's no standard right or wrong decision. But more than anything else, it's about living.

"When I have a child who has a neurologically devastating condition and the family make decisions to maybe have that child have a tracheostomy - to have a whole in the throat - so he can have help breathing at night, so he can then play with his siblings and go to pre-school - that is quality of life. That's living," says Hubble.

Some of the kids that PAACT has worked with are no longer at risk of dying. About 350 have died since 2004.

Hubble says she and the other nurses in the comfort care program have learned to think about dying differently from how doctors typically do.

"In some situations we can't cure, but we may be able to heal. And we may be able to care," says Hubble. "We can always care. And I think that's the nuts and bolts of what we end up doing - there's that dichotomy that death is seen as failure. And yet in reality, it can be the healing of the existential suffering of that whole angst we have."

Hubble says working in pediatric palliative care can have its personal toll. But as for becoming numb to the suffering?

"I've always said the day I don't feel a child's death is the day I quit," she says.

Hubble has had her own bout with serious illnesses, too. She says working in palliative care [and before that, hospice] has allowed her to not only take a more holistic approach with patients, but also come to terms with her own health and mortality.

"And that's partly why I've stayed in it," says Hubble. "Because it keeps me honest with my own life, and makes me recognize I have this moment, that you and I are talking. I don't have anything else. And that's what's important. And that's what we give our parents, our children, that when we are with them, all that is important is that moment or that time."

Hubble says accepting the reality that death is going to happen at some point, that it's a natural part of the process, is a first step to having that presence. And she says doing so helps enhance the meaning in each moment of a child's life...however long, or however short, that may be.


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