Iowa Senate advances bill to license palliative care centers for kids with life-threatening illnesses

DES MOINES — When doctors told Shanna Sieck that her nearly 7-year-old son Mason needed to be put in hospice after his five-year-long battle with cancer, her family moved from Grinnell into a care center in Minneapolis to live out his final days.

The family’s move to Minnesota stemmed from Iowa’s lack of pediatric palliative care centers — residential facilities that provide support to children and young adults with shortened life expectancies as well as their families. Sieck said they tried home hospice, but it didn’t work for their family.

Iowa’s absence of PPCCs is not unique. Minnesota’s center is one of three in the U.S., with the other two in Arizona and California.

But Sieck wants to pave the way for Iowa and other states to establish more PPCCs, and lawmakers at the Iowa Capitol are considering her proposal to do just that.

House File 933, named “Mason’s Law,” would create a pediatric palliative care license to establish residential care facilities for those under 21 with chronic and life-threatening illnesses who are expected to have shortened life expectancies. Under the legislation, these facilities would have limits of 12 patients.

Currently, no states have established licenses specifically for PPCCs. The three states with facilities create them under other licenses.

During a Senate health and human services subcommittee meeting Wednesday, Sieck said the legislation would help fill the gaps between hospital care and home care as all of Iowa’s residential hospice facilities are for adults.

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“These children are not expected to live to their 21st birthdays,” Sieck said. “I'm not sure how our family would have gotten through the end of life with our son Mason, without traveling to Minnesota to find that care and support.”

Sieck’s nonprofit Mason’s Light House recently secured land west of Iowa City to build a PPCC that would provide services for children, young adults and families, free of cost. Services include overnight respite care, family navigators, pain and symptom management, occupational therapies, sibling support, spiritual support, psychosocial and emotional support, and advanced care planning. The center will be built if the bill becomes law.

Under the legislation, PPCCs established with the new license would be exempt from state residential care facility requirements that don’t allow facilities to provide care and services to individuals on a nonemergency basis. The bill also would exempt PPCCs from certificate of need requirements.

Groups and hospitals, including the Blank Children's Hospital, the Iowa American Academy of Pediatrics and the Hospice and Palliative Care Association of Iowa, are all registered undecided on the bill.

The bill, which unanimously passed the Iowa House in March, was advanced Wednesday by all three members of the Senate subcommittee — Sens. Kara Warme, R-Ames; Annette Sweeney, R-Iowa Falls; and Sarah Trone Garriott, D-West Des Moines.

“Working in the youth behavioral health space, we like to say kids are not just little adults, right? We need a different type of care and a different approach,” Warme said. “Some families may not want a child with terminal illness to die at home, because of what that might mean for the memories for siblings and others in the family, and so I like the thought of something new that has worked elsewhere.”

Trone Garriott said she supports the bill but has some questions about the logistics of the legislation.

“I was a pediatric hospital chaplain, and so I know that it's incredibly important to have services that are geared towards younger patients and their families,” Trone Garriott said. “Recruiting and retaining quality staff for these patients is a significant challenge in our state. What about this legislation is going to incentivize and draw people to our state?”