A place for parents



Women spearhead effort for hospice for sick children



By JOSH WILLIAMSON / Journal Tribune Staff Writer



Amanda Maliski feels grateful she can take joy from the moments shared last winter with her dying baby daughter Haley, smiling at one memory in particular.

It happened in a Boston hospital, shortly before the leukemia had run its course in the 23-month-old toddler. Maliski, then a 23-year-old single mother from Sanford, realized chemotherapy had not lowered Haley's blood count levels enough for her to receive a crucial bone marrow transplant. 

"I was overwhelmed by it all, and really frustrated. I took Haley into an empty waiting room and slammed the door," she says. "Here I am, on the verge of breaking down after so many months of it, and Haley smiled at me. We just started dancing. She started giggling and laughing. We danced, and I was able to laugh, too."

Maliski is not sure she would have had the strength or understanding to share that happy time with her daughter, or all the other moments, without the support of Dr. Kate Eastman's Jason Program, the only pediatric hospice program in New England.

"Kate did so much for me," Maliski says. "She helped me to understand the cycle of life. She let me understand the situation could be bad or good. I could let it build me, and make me stronger, and cherish the times I did have with Haley."

Eastman started her Portland-based program a year ago knowing that parents like Maliski need community-based support when their children are dying. She is working to create networks of social workers, medical experts, business owners and other community members into hospice-oriented teams around the state.

She also hopes someday to start Jason's House, a hospice home where families can spend the difficult times together when a cure is not likely. But Eastman and other hospice programs for adults are perhaps most importantly working to change what she considers a pervasive attitude about death and dying within both the medical field and society.

"It doesn't mean giving up. It is about hope," she says. "With the Jason Program, it's about offering a child and a family the support that they wouldn't otherwise have."

Curing is not always an option, Eastman says, but caring is. 

"As a society we don't recognize death and grief, or the impact that dying and grief have on us all," she says. "For example, when a family member dies, most employers offer just three days off, including the day of the funeral."

Eastman says that for parents of dying children, work, bills, the mortgage and just about every other aspect of life are put aside. 

Maliski agrees.

"For me, Haley was everything. All I could see was her. All I could feel was her. We were a team, and I was her advocate," she says. "As a parent, all you want to do is protect and care for your child. I couldn't leave her to go to work. There were times when I just really didn't know how we were going to get by."

Maliski says there was little financial support from Medicaid, which does not include pediatric hospice benefits, or other avenues. In one instance Eastman describes as "appalling," the government tried to collect a debt from Maliski as her daughter was literally on her deathbed.

"Right near the end, people from Social Security called up and told me I had to pay them $220," Maliski says. "I just couldn't believe it."

The Jason Program and Sanford community raised money for Maliski, which ended up paying for the funeral. 

Eastman feels Maliski's experience reflects the low priority and limited resources given to families when the question is how, rather than if, a loved one will face death.

Beyond the six-month federal limit on hospice benefits for adults and the other hurdles to hospice programs, Eastman says the idea of accepting the death of a loved one and growing from it is instinctually hard for many to accept.

The Jason Program's $20,000 operating budget comes from private grants and fund-raising efforts, Eastman says. A photo of Haley is featured on a fundraising CD of Maine musicians, including Schooner Fare and the Portland String Quartet, which is being sold locally at Tom's of Maine in Kennebunk and Nonesuch Books in Saco.

But Eastman hopes that hospice programs, which are common and well funded in many other countries as part of mainstream medicine, find a place within the American medical landscape as well. Medical schools are beginning to offer training programs, including a pediatric hospice program at the University of New England in Biddeford starting this summer, she says.

And she will host a first-time pediatric hospice conference in April featuring Elizabeth Kubler Ross, who she describes as the "Rosa Parks of hospice care" for her long-standing efforts to establish programs throughout the country.

While Eastman sees these steps and others as reason for optimism, the effort is just beginning, she says.

"A big problem stopping pediatric hospice programs right now is that there really are not that many dying children, compared to other age groups," says Eastman, who is currently working with four families. "Too many people look away from children's needs because of the numbers, and I don't accept that."

Maliski says the support she received altered her life. A year after her daughter's death, the Sanford resident is going to nursing school while substitute teaching and volunteering for the Jason Program. She believes the compassion and understanding she gained, with Eastman's support, during those times with Haley have given her the desire and ability to help others through nursing.

"It was the saddest, most profound and beautiful experience of my entire life, and I would go through it all again if I had to, to learn what I learned," she says. "Now I embrace life. I embrace everybody."