Navigating a painful journey: St. Vincent Pediatric Hospice helps families cope

Erin Sammons knew nothing about St. Vincent Pediatric Hospice when she gave birth to her son, Hart, last November.

She just knew that Hart had a chromosome disorder, and doctors expected his life to last only minutes or maybe days. The hospice offered help, so she took it.

Hart lived for almost a month, and Sammons said the hospice staff walked her family through every step of that journey.

“It was a tragedy, and my heart breaks every day … but if I could have written how this tragedy plays out, this is how I would have done it,” she said.

Indiana’s lone hospice devoted to children has helped families survive tragedy for nearly four years now. A staff of seven and some volunteers provide care for 10 to 12 children every year in the smallest pediatric specialty St. Vincent Children’s Hospital offers, but they hope to do more.

Hospice workers would like to reach more families at earlier stages, as a small slice of an international movement that nearly doubles in size every year.

Hospice workers helped Sammons, her husband, John, and their five children at the hospice, in their Carmel home and most every place in between.

A nurse visited their home twice a week after Sammons and the baby left the hospital. A chaplain and a child life specialist also checked in regularly.

A few weeks after returning home, Sammons checked into the in-patient hospice, which occupies part of the St. Vincent Pediatric Rehabilitation Center. Hart’s condition had worsened. Hospice staff drove to Carmel to baby-sit so some of the other children could come say goodbye.

After Hart died, social worker Sheila Jesionowski snapped pictures of Erin and the baby, “which is something you wouldn’t think you would want, but it’s something I treasure,” Sammons said.

The St. Vincent Pediatric Hospice offers care and therapy for patient and family. It maintains a couple of in-patient beds, but helps mostly through home care.

The program started because organizers saw a need for child-specific care, said Deb Bosler, a nurse and outreach liaison for the hospice. Many adult hospices offer comfort care for terminally ill children, too, but sometimes that means treating them like mini-adults.

Children, Bosler said, require specific care, such as play therapy. If children can’t put into words what they’re thinking or feeling, hospice staff might give them toys to help them express their emotion.

The cases of terminally ill children also can be more complex and their remaining life span harder to predict. Some children can spend up to two years in hospice care, said Mimi Jose, the St. Vincent Pediatric Hospice chaplain.

These cases force families to confront a different slate of emotions than a patient who’s “old and full of days,” Jose noted.

“With a child, your future with that child has been pre-empted,” she said. “You’re not only dealing with that child dying, your future with that child is blank.”

Follow-up care is different as well. The pediatric hospice delivers follow-up therapy to the child’s family for two years following death. That usually lasts just over a year for the families of adult patients.

St. Vincent pediatric hospice workers say they would like to reach more families and start treatment earlier.

“If we had to serve 100 a year, we could do it; we could just add staff,” Bosler said.

Growth is not a foreign concept for this specialty. Since the early 1980s, the number of children’s hospices worldwide has doubled every year, according to Ann Armstrong-Dailey, CEO of Virginia-based Children’s Hospice International.

However, starting palliative or comfort care earlier can be tough. People can accept that a condition has no cure, “but I think it’s hard to say this is the end,” said Dr. Randy Hock, medical director for the St. Vincent Pediatric Hospice.

Jesionowski also said people have a misconception about pediatric hospice care, that it should be reserved only for a patient’s final days.

The concept of a pediatric hospice has been around in the United States since the 1970s. Armstrong-Daly said about 500 U.S. programs currently exist. She expects more growth thanks to the Internet and a greater awareness.

The prospect of money hasn’t fueled the growth in pediatric hospice care. Private insurance and government programs such as Medicaid offer coverage, but hospice care generally loses money, Bosler said. A provider normally receives $1 in reimbursement for every $1.25 spent on care.

“We’re not in it for financial reasons,” Bosler said. “We’re in it because it’s our mission. We want to reach everyone who needs hospice care regardless of their age or financial status.”

Still, hospice care does provide some financial advantages. It can lower health care costs. For instance, a nurse or doctor on call can manage developments in a child’s home-care case much more efficiently than an expensive ambulance ride to the emergency room.

Hospice care also helps family members keep jobs and valuable insurance by providing counseling that keeps them functioning, Hock noted.

Count Sammons and Lora Henry of Zionsville among those who have seen the benefits of that family support.

Sammons said she has “so much going on in my mind and in my heart right now, I can’t even think clearly.” Sometimes she counts on hospice help to do that for her.

Hospice staff repeatedly checked on Sammons’ children to see how they were handling the situation. They helped the family find relaxation during a time of constant tension.

They helped Sammons’ children deal with the anxiety that they might go to school one day and their brother would be gone when they returned.

This care continued after Hart died. Jesionowski has been particularly helpful, especially with Sammons’ 11-year-old daughter.

“She just notices the signs of what is grief and what is daily, you know, being an 11-year-old or whatever,” Sammons said.

Henry’s 9-year-old son, Grant, spent several months in hospice care before dying last fall from neurological problems. He had been diagnosed with a rare, mitochondrial disease in 1996, and Henry had known since the diagnosis that her third child would die.

Grant started hospice care in 2003 and spent some nights in one of the inpatient beds. “That’s a wonderful facility,” she said. “It doesn’t even feel like a hospice. It’s like a private hotel room, really.” Henry also had a bed in the room, so she could spend the night with her son. A social worker and chaplain visited. A nurse came by every two hours to shift Grant so he wouldn’t develop bedsores. “It was basically like having my own private nurse,” she said.

The program’s benefits extend beyond the patients and their families. “It’s an amazing privilege to do this work,” Jose said. “To be drawn into patient families at this time in their child’s life, it’s a sacred journey.”

Hospice staff say they draw loads of inspiration from the cases they handle. Hock talked about a single parent who balanced the packed social schedules of two teen-age daughters while managing a son in hospice care.

Jose felt the joy of some parents who watched their teen-age son experience a summer camp six weeks before he died. The boy, who suffered from muscular dystrophy, made friendship bracelets. He shot a bow and arrow. He went to a prom.

“I think you see some amazing things in some really difficult situations,” Jesionowski said.