Joliet hospice recently tripled the size of its pediatric program

No way are these children going without care.

That was Mary Kay Sheehan’s stance when she learned that 80 seriously ill children in a Barrington pediatric hospice program would lose in-home hospice and palliative care when a for-profit company – that doesn’t handle pediatric care – bought the former nonprofit JourneyCare.

Sheehan, CEO of Lightways Hospice and Serious Illness Care in Joliet – formerly Joliet-area Community Hospice – said the new organization contacted Lightways and asked if they could admit the children into its program.

Lightways agreed.

“I couldn’t let them go without care,” Sheehan said. “That was just troubling to me.”

New challenges

However, taking on JourneyCare’s youngest patients tripled the size of Lightways’ pediatric program, raising a new set of financial challenges since Lightways is a nonprofit, Sheehan said.

“We do not have the money to offset that,” Sheehan said. “My board of directors knew that. But we made a conscious decision to do that. We felt it was the right thing to do.”

One benefit of admitting the 80 children to Lightways is that it now can care for pediatric patients anywhere in northern Illinois, Sheehan said.

She gave two reasons why nonprofit hospices typically don’t care for children.

“One, it’s financially a challenge because insurance and Medicaid don’t cover the cost of care,” Sheehan said. “And, No. 2, it’s hard on your staff. The good news is that we have enough children and enough staff that we will make it work. But it’s definitely a challenge.”

Eight staff members at JourneyCare, including nurses, social workers and chaplains, also moved to Lightways, Sheehan said.

Sheehan said everyone is adjusting to the expansion. The new staff members are adapting to a new work environment, families in different cultures and even a new medical records program.

“I have to retrain these nurses to [deliver service] in a way that makes financial sense while taking great care of the kids,” Sheehan said. “And so, we’ll get there. But the thing is, too, with the cost of gas the way it is and these nurses coming from Joliet all the way to Lake Forest and then into the city, it’s hard on them; they have a hard job. Expenses are high right now.

“But all that really matters is that these kids and the families get the care they need. As long as I focus on that, everything else will fall into place.”

Lightways also added two child life specialists, Sheehan said. Child life specialists help the children in the program – as well as their siblings – work through their feelings in ways other than talk therapy, Sheehan said.

Child life specialists also work with the families to create legacy projects, such as writing and recording songs or making a ceramic project.

“The child life specialists are young and energetic and just have beautiful spirits,” Sheehan said.

Sheehan said Lightways had hired one child life specialist before admitting the children from JourneyCare; the second child life specialist came from JourneyCare.

Hospice for children is different than hospice for adults

Caring for children in a hospice setting is different than caring for adults, Sheehan said. For one, adults choose hospice and consent to the services.

“Taking care of dying children is just a whole different thing,” Sheehan said. “They’re not consenting; they’re not of age to consent. And so parents have to make the decision for them. And it’s a horrible decision to make.”

Secondly, adults in hospice typically have stopped treatments. That’s not usually the case with children, she said.

“Because how do you stop treating a child?” Sheehan said. “How do you stop caring for a child? So they typically get their chemo and radiation, and you give them the comfort care of hospice. And that’s why it’s costly. Because you’re doing both simultaneously.”

Sheehan said she feels it’s unfair to ask parents to make a choice between treatment and hospice for their children in order for children to receive hospice care.

“That’s an impossible decision to make for parents,” Sheehan said. “And we don’t want them to have to make that decision.”

Children in Lightways’ palliative care program are chronically ill children who will live for longer periods of time, Sheehan said. They may have neurological issues or birth defects, or they could be on ventilators or need dialysis, she said.

“Their parents need support to care for them,” Sheehan said. “The horrible part is that there’s no reimbursement for palliative care – yet.”

The financial side of a pediatric program

When Illinois’ Pediatric Palliative Care Act goes into effect Jan. 1, 2023, private insurers and Medicaid plans will be required to include a pediatric palliative care and hospice benefit, according to Lightways.

But that won’t include other aspects of pediatric care, such as in-home visits by child life specialists, music therapists, massage therapists and other complementary therapists, according to Lightways.

Sheehan said Lightways is in “full throttle” mode in raising additional funds, too. Lightways’ fundraising plan includes requesting grants and private donations and starting the Little Lights Fund to help support the pediatric and palliative care program, she said.

According to Lightways, this restricted fund will cover $750,000 to $1 million in “nonreimbursed expenses associated with Lightways’ pediatric program.”

Tickets also still are available to Lightways’ annual fundraising dinner Sept. 8 at the Bolingbrook Golf Club. To buy tickets, visit lightways.org/40annualdinner.

“We’re just hoping to break even,” Sheehan said. “We’re not in this to make money, just to cover the cost of care.”