Hospice Hawaii expands help for terminally ill children - Hawaii News Now - KGMB and KHNL

Hospice Hawaii expands help for terminally ill children

Kenneth Zeri Kenneth Zeri
Debbie Clark Debbie Clark

By Teri Okita – bio | email

HONOLULU (HawaiiNewsNow) - November is National Hospice month.

Each year, Hospice Hawaii cares for more 600 patients with terminal illnesses and their families. Although saying goodbye to a loved one is always difficult, it can be especially challenging when it's a child. Earlier this year, the organization launched a formal pediatric program - designed specifically to help children who don't have long to live. It's the first of its kind in the state.

There's likely no greater sadness than a parent outliving a child. As families cope with the life-limiting diagnosis, Hospice Hawaii works to give them more options.

"We really do say, ‘Where are you at on this journey? How can we help you understand it more?'" Hospice Hawaii president, Kenneth Zeri, says recent changes in federal laws now provide pediatric patients with something called 'concurrent hospice care'. "Medicaid will pay concurrently for the support of care that hospice can bring to their home and for hospitalization, if that's needed for the child. It's the best of both worlds."

It means parents can seek life-prolonging therapies for their children through their doctor - while, at the same time, using hospice services in the comfort of their home. Teams of social workers, nurses, volunteers, and therapists make the house calls.

"A lot of these kids want to be normal," says hospice licensed clinical social worker, Debbie Clark. "They want to be at home. They want to be with their siblings. They want to be in their bed. They want to be playing their video games. They want to be a normal child. And a lot of times, they get that by being in the home."

Clark is one of about 100 employees at Hospice Hawaii. She says each patient's experience is different, and her job can get emotional. "Oh, you get attached. I think that's one of the misconceptions is that you have to maintain separation or a disengagement from the family, and it's actually the opposite. To do the work, we need to be very engaged with the family, to be very present with the family and to really develop that sense of trust."

Their job isn't over when a child dies. They help the family through the bereavement process, as well.

Hospice Hawaii cares for children who have several months, a few days - even a few hours to live. This is the organization's 32nd year.

Copyright 2011 Hawaii News Now. All rights reserved.

Powered by Frankly