Most children in Minnesota with terminal health conditions die either in the hospital or at home. Even though the hospice movement has been growing in recent years and Minnesota has 15 residential hospice homes for adults, there are none in the state for kids.
Katie Lindenfelser, a Coon Rapids therapist, wants to change that and has launched a project called Children's Lighthouse of Minnesota, hoping to raise $8 million and open an 8- to 10-bed children's hospice home in the next three to five years.
It would be among only a handful in the United States, although there are many such homes in the United Kingdom and elsewhere.
Lindenfelser had no idea that her experience working at an Australian children's hospice would inspire her to quit her music therapy job. All she knew was that Australia's hospice model for children was unlike anything she had witnessed working with terminally ill children in U.S. hospitals or in their own homes.
The Australian hospice had a playground and game rooms where kids could romp and interact with each other, even though some were very sick.
When she returned to the Twin Cities in 2008, Lindenfelser couldn't shake the thought that Minnesota needed a similar hospice facility just for kids.
"I was working again in the hospital and seeing, week after week, kids coming to the hospital to die because they didn't want to be at home necessarily, and their family members running through the hall screaming that their sister or brother, daughter or son was dying," she said.
Lindenfelser has been at the bedside many times, guitar in hand, to soothe a child with music when they can't have any more pain medication. It's the kind of work that a lot of people wouldn't want to do. But Lindenfelser thinks creating a hospice home, filled with the comforts of childhood, is the logical next step.
There are only two hospice homes for kids in the United States, in Arizona and California. In contrast, there are more than 40 in the United Kingdom. Lindenfelser thinks the model hasn't caught on in the U.S. in part, because the American medical system concentrates most of its effort on curing kids.
"That would be the best thing in the world, wouldn't it -- that children didn't die? But that's not the reality. So we can make that experience the best that it can be, even though it's horrifying," she said.
Dr. Stefan Friedrichsdorf, medical director of the Institute for Pain and Palliative Care at Children's Hospitals and Clinics of Minnesota, agrees on the need. Friedrichsdorf had also been exploring the possibility of opening a children's hospice home when he heard about Lindenfelser's project.
He met with her recently, and says he feels optimistic that they might be able to collaborate on a building together that would provide both hospice and respite for families.
"When you get into a children's hospice anywhere in the world, you will see lots of laughter, lots of fun," said Friedrichsdorf. "Most of the time, most of the children who are in a free-standing children's hospice are there for respite."
Zach Tift wishes a children's hospice had been an option for his daughter Maryah. She battled cancer for more than six years before succumbing to the disease in May 2010. Maryah, who turned 16 in hospice eight days before she died, was adamant that she not die in the hospital or at home.
"One of the things that Maryah did not want is for her siblings to see when she actually passed," Tift said. "She wanted them to be around as much as they could, but not for that actual moment."
Tift called around to several adult hospice homes to see if there was space for his daughter. After being turned down several times, he finally found one that would accept her. Tift is grateful to that hospice, but he says it wasn't an ideal place for his teenager to spend her final weeks of life.
"She knew she was the youngest," Tift said. "Even though she had a tremendous respect for elders, she still wanted to feel those connections and be around other kids her age, to be around staff that understood her. That part, I think, was really difficult for her."
Lindenfelser's effort is not the first in Minnesota. In the 1990s a group of donors raised thousands of dollars to open Deva House. That effort ultimately failed, due in part to the expense of converting a donated mansion into a wheelchair-accessible facility.