Even without the ongoing COVID-19 pandemic, pediatric hospice patients and their families face a variety of end-of-life care needs that are unique from those of adult patients. Yet, youth-specific hospice patients are among those most underserved in the nation. Connecticut-based Regional Hospice is building the North Star inpatient wing to expand upon its children’s hospice programming and better serve youth patient populations and their families.
Regional Hospice’s North Star Campaign is supporting the build of the North Star wing.
“This space will be the only dedicated children’s hospice residence in the Northeast,” said President and CEO, Cynthia Emiry Roy. “There’s only four pediatric hospices now in the entire U.S., and this will be the fifth one built. Children’s hospitals don’t have this kind of pediatric hospice in-house programming as a resource. They don’t have anywhere to send dying kids to a place just for them.”
Pediatric hospice patients can range in age generally from prenatal to 21 years. Care is comprehensive and more family-centered, going beyond the immediate needs of the patient. Currently across the country, existing insurance policies do not cover respite care for children. Children often receive acute care in a hospital or children’s hospital, incurring high costs, keeping them away from home, and offering parents little opportunity for a break. Oftentimes, families become a one-income household versus dual income when one parent becomes the primary caregiver for their child.
“The North Star wing that we’re building would also provide respite to children who are terminally ill and their parents, as well as a place their child may choose to live in their last days,” Roy told Hospice News. “This new wing in our facility gives them the opportunity to leave their child with somebody who’s trained, educated and who knows the illness and can take care of all of the medications and address all their needs cohesively in the same setting, while also providing a little bit of a break from caregiving.”
From her own personal experience of losing her best friend at the age of 16 to leukemia, Roy was inspired to build a center with a children’s unit that was specific and unique just to their needs. Regional Hospice currently provides hospice care to terminally ill children and babies exclusively in the home setting and in their Center for Comfort Care and Healing. The North Star wing will provide an option for pediatric hospice patients and families to have continuity of care.
In collaboration with Roger Ferris + Partners, a Connecticut architecture firm, Regional Hospice is creating the children’s wing on its second floor to feature four patient suites, a living room and a family kitchen to create a space for kids that is special and playful for young hospice patients. Each patient room will feature a planetarium on every ceiling, along with a rooftop patio.
“The wing was inspired by the North Star as the center point that guides people in the night,” Roy said. “It almost has a treehouse kind of feel to the suites because they look out at the top of the trees and the beds will roll out onto the patio area so that kids can get outside because a lot of terminally ill children can’t get out of bed.”
Fundraising efforts and donations are covering the majority of the unit’s cost. While overall philanthropic response has been positive, according to Roy, impact of the coronavirus outbreak on giving potential is a concern, along with supply needs and staffing.
“Right now, our most eminent concerns are supplies, and making sure we have the correct supplies needed for the patients and in the instance that they do get sick,” said Roy. “One of the things we’ve noticed is that a lot of community-building goodness comes out of emergency situations like these. People are finding ways to support others, and we’ve even received supply donations from people just trying to do things that can help others in need.”
Supporting staff who provide care to pediatric hospice patients is also a consideration, as Regional Hospice offers several therapeutic and holistic services to staff, volunteers and patients alike. Plans for the North Star children’s hospice wing build are set to continue, with extra precautionary measures in place.
According to a report from the U.S. Centers for Disease Control and Prevention (CDC), children are not at higher risk of contracting the coronavirus disease than adults. However, those who suffer from a chronic or life-limiting illness are at increased risk of infection, as shown by recent data from the Kaiser Family Foundation (KFF). The data reflected that patients who have diagnoses that are common to hospice patients are at the highest level of risk, and this includes pediatric populations.
“Families and patients need to know that they can enjoy their lives and stay healthy during this time and have a good quality of life with the time they have left,” Roy told Hospice News. “We certainly don’t want them to get sick with this COVID-19 virus. That’s our biggest concern at the moment.”