Nurse helps terminally ill children live well to end

Pam Crayne-Smith helps children die.

Her work with terminally ill kids and their families is as much about life as it is about death. “It’s a journey,” said Crayne-Smith, a nurse with Providence Hospice and Home Care of Snohomish County.

“Kids who are dying are losing so much. If they can control the last part of their lives, it gives them purpose. The focus becomes the child, what they want,” she said. “People let you into their lives. It’s humbling.”

Humble is an apt word for Crayne-Smith, who was reluctant Wednesday to dwell on receiving a statewide award. She was recently named the Homecare Association of Washington 2006 Nurse of the Year.

“I feel like I accepted this award for everybody I work with,” said Crayne-Smith, 45, who lives with her husband on Camano Island.

She’s one of four nurses in the hospice Carousel Program, devoted to infants, children and teens. Along with helping at the end of life, Crayne-Smith visits homes to treat chronic ailments and children recovering from illness or surgery.

“Visits can be twice a day to once a month,” said Sue Brady, director of Providence home health care. As hospital stays become shorter, medical care at home becomes more complex, Brady said.

Trained as a registered nurse at Northern Arizona University in Flagstaff, Crayne-Smith has been with hospice almost 16 years. Early in her career, she worked in emergency rooms. “I wanted to connect more with people,” she said.

Her pediatric hospice patients are expected to have six months or less to live. She sees them daily, for up to four hours, and on any given day will likely have two other home-care visits. Parents of chronically ill children “are just exhausted,” Crayne-Smith said. “They’re doing the best they can to keep these kids home.”

Crayne-Smith is supported in her work by chaplains, social workers, home health aides and volunteers. She meets regularly with doctors and pharmacists.

“When I first meet a family, I tell them I really become part of the family,” said Crayne-Smith. She’s helped children suffering from leukemia, brain tumors, many other cancers, cardiac, respiratory and genetic diseases.

How many has she treated and lost? “Too many to count. Last year, I had six children die,” she said.

“Hospice kids have been through so much. They’re very savvy, especially teenagers,” she said. “They want you to be an advocate for the kind of death they want to have.”

Each family is different. “Some choose aggressive treatment, others pull back. You’re always managing symptoms – pain, mobility, wound care, whatever they want to do,” she said.

An hour with Crayne-Smith is enough to break your heart.

Once, an 8-year-old called to tell her he knew he was dying. He didn’t want his mother to be alone. Another child, whose parents weren’t religious, talked about seeing Jesus. “Sometimes they won’t talk because they don’t want to hurt their parents,” she said.

Most families choose to keep dying children at home. One family had a slumber party while a daughter died. If a patient goes into a coma and there are young siblings, parents may change their minds and go to a hospital.

I asked Crayne-Smith how in the world she talks about death. “You talk to a dying child honestly,” she said. “A lot of these kids are never going to have that first date or know true love. They’ll never buy a house or get married. We try to make it special – that time. We work to give that child the very best death they can have.”

As we talked Wednesday, Crayne-Smith awaited a call. She was to meet with a mother, a teacher, a school psychologist and a principal. “For schools, it’s a scary thing. They worry about the other kids,” the nurse said. “Most hospice kids want to go to school as long as they can.”

The award came as a surprise. Crayne-Smith didn’t know she’d been nominated by her supervisor, Debi Schmidt. This nurse of the year isn’t focused on recognition. Her passion is children, helping them live and die.

Her heart is with parents, too. “There’s not a harder thing,” she said. “You see it in their face.”

Columnist Julie Muhlstein: 425-339-3460 or muhlsteinjulie@heraldnet.com.

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