Founders of a new Iowa-based pediatric hospice facility have recently pushed legislation forward to help improve the availability of end-of-life support for terminally ill children and their families.

Mason’s Light House is anticipated to open in 2027 or 2028, depending on state licensing processes and funding, according to Shanna Sieck, founder and board president of the nonprofit organization. Located in Iowa City, Iowa, the facility will be the first pediatric hospice and respite care center in the state.

Mason’s Light House has a two-pronged purpose to improve access for underserved pediatric populations and advocate for legislative changes that better address their vast unmet needs, Sieck said. The nonprofit has supported Mason’s Law, legislation that recently passed in Iowa designed to establish regulatory guidelines for pediatric hospice and palliative care centers. The legislation may have reverberating impacts on more equitable care delivery beyond just the state’s borders, she stated.  

“More training and education is needed across the board with pediatric hospice, and that’s not just a need to be addressed in Iowa,” Sieck told Hospice News. “Mason’s Light House is trying to make it easier for children and families to get the care and support that they need throughout their whole journey. We’ve worked on this with legislators for quite a while on Mason’s Law trying to figure out the best way to provide these hospice and palliative care services. [It’s] a really big win not just for Iowa, but we will be helping kids in other states to be able to get this care more easily.”

Pediatric challenges leading to legislative change

Mason’s Light House is currently inching closer to its $2.5 million fundraising goal to purchase the facility’s property. The nonprofit also has received a $100,000 grant from the Ronald and Ruby Holden Foundation to fuel the project.

The pediatric hospice and respite care center will feature seven rooms, each with a family suite. Other features will include dining and living rooms, a hydrotherapy pool, a sensory and a media room with a recording studio and a video gaming area. The recording area is in part designed to help families to capture the sound of their loved ones’ voice and laughter, according to Sieck.

Services available at Mason’s Light House will include care coordination and family navigation, pain and symptom management, respite and physical or occupational therapies. The center will also provide family-centered care such as spiritual, psychosocial and emotional support, assistance with advance care planning and bereavement care. Grief support will be available to families on its services as well as to surrounding communities.

“A lot of times there’s so many stressors for families, whether it’s another sibling that needs your attention at the same time as your medically complex kid,” Sieck said. “We’re trying to help family units to stay together, take some of those stressors and logistic and financial burdens away and provide support to navigate a hard time.”

Navigating a terminally or seriously ill child’s needs is an overwhelming and challenging feat for many parents, Sieck said. Her son Mason Sieck is the facility’s namesake, who died in 2021 of a rare disease. He had received home-based hospice care until his symptoms needed greater support, eventually receiving a referral for facility-based care at Crescent Cove in Minnesota.

Traveling the long out-of-state journey was a difficult and challenging experience as his condition declined, Sieck said. But the range of interdisciplinary, pediatric- and family-focused care made an impactful difference at the end of life, she added.

Many families go through a similar, fragmented process of receiving facility-based support, a significant challenge that drove the launch of Mason’s Light House forward alongside the nonprofit’s advocacy efforts, according to Sieck. Medically complex children often have several clinical specialties managing their condition, with care coordination and communication a key benefit of receiving hospice and palliative support, she added.

“We just didn’t have a lot of options in our small town, and we didn’t want any other family to experience the things that we did,” Sieck said. “There are families with multiple kids having to travel out of state to get care from specifically designed children’s respite and hospice care facilities. Mason wished that every kid that needed a place like Crescent Cove could go there. That has fueled our fire to get this facility and this bill started in Iowa and make sure families have access.”

Introduced on February 27, 2025, Mason’s Law recently passed to establish eligibility requirements for facility-based pediatric palliative care. Individuals with life-limiting conditions who are not expected to survive past 21 years of age are eligible to receive these services under the proposed law. Hospice programs are defined as providing 24/7 access to supportive medical or other services to terminally ill patients and their families during the final stages of an illness, including through death and bereavement. 

The legislation also included language to define pediatric palliative care centers as residential facilities that provide respite and end-of-life care programs. Additionally, Mason’s Law establishes licensing requirements for new facilities such as geographic guidelines that assess population needs and regulatory standards.

Mason’s Law is modeled after a similar bill that passed in Minnesota. The latter state is among a handful nationwide that define palliative care eligibility within their Medicaid hospice programs, joined by North Carolina, North Dakota, Washington and Virginia. Colorado, Maryland and New York include palliative care as part of their health care facility licensing. These services are available only to individuals with a terminal or life-limiting condition, typically those 20 or 21 years old and younger.

Meanwhile, Massachusetts, Vermont and California have Medicaid pediatric palliative care programs that outline eligibility determinations, promote awareness and establish parameters to support educational and workforce development.

“This [legislation] is trying to change things for kids diagnosed as medically complex or medically fragile,” Sieck said. “I think what a lot of providers do is provide hospice for peds as little adults, but there aren’t many parents who are just going to leave their kid someplace and go home to sleep well. Mason’s Light House is geared to be free of charge to families during the hardest experiences of their life, providing respite and giving them a break from the financial burden aspect of it. It could lead the way for all these other pediatric homes trying to emerge that are going through the same legal, legislative processes without any real definitions in place. It’ll provide a structure for family-centered facility care so that for-profit companies can’t come in and take advantage.”