Kid-Size Care with Hospice Hawaii

Hospice Hawaii not only cares for terminally ill adults, but now children, too.

illustration: jing jing tsong

Children are not small adults. It sounds obvious, but when it comes to hospice care, there haven’t been kid-specific hospice services in Hawaii until now.

“Caring for terminally ill children and their families is not the same as caring for terminally ill adults,” says Hospice Hawaii president Kenneth Zeri, who recently oversaw the launch of the Pediatric Care Program. “The complexity demanded that we have a dedicated team.”

While the loss of a loved one is never easy, Zeri explains that providing end-of-life care for a child can be even more traumatic for families. “It goes against the natural order,” he says. “The loss of a child is a devastating loss, not just a loss of today, but a loss of the future.”

The new, dedicated pediatric staff cares for about a dozen children each year, ranging in age from infants with congenital anomalies to children and teenagers with terminal cancer.

Much of the pediatric hospice care mirrors the support system for adults, such as making sure the patients are as comfortable as possible, and counseling them and their family and friends. “When I first meet a patient, I really listen to them, hear what their goals and needs are,” says Debbie Clark, a licensed clinical social worker. “With children, you have to think outside of the box.”

Clark’s workdays start and end in the homes of her patients. She employs what Hospice Hawaii calls a developmentally appropriate method, tailoring the patients’ care and support based on their ages and interests. Often, that simply means playing with the child. “They just want a normal life, they want to be a normal child,” she says.

While patient and family counseling helps many adult patients, both Clark and Zeri say art therapy and pet therapy has been successful for pediatric patients. “I always make sure I have old, comfortable clothes with me,” says Clark with a laugh. “We make a great big mess and that’s when they start talking.”

Following the loss of a child, Hospice Hawaii provides bereavement counseling and holds a bereavement camp for families every summer.

“It’s very special work,” says Zeri. “It’s a real honor to come into a family’s life like this.”