Hospice of Michigan and Arbor Hospice have launched the Van Allsburg Pediatric Hospice Art Program, having raised $1 million in donations with support from the locally-based children’s book author, expanding the two hospices’ existing art program. The program reflects a rising tide of pediatric-specific services growing among hospice and palliative care providers nationwide.
Hospice of Michigan and Arbor Hospice & Palliative Care formed an affiliation in 2016 to better serve patients and families while helping to strengthen and expand the future of nonprofit hospice throughout the Great Lake state, creating a network of community-based hospices. Providers in the NorthStar Care Community reach nearly 5,100 patients collectively across Michigan each year. Hospice of Michigan alone currently serves more than 4,000 patients annually in 50 counties in Ann Arbor and surrounding communities.
Though seniors receive most of the hospice care in the United States, a growing number of hospice and palliative care providers are focusing services on youth-specific patient populations with serious or terminal illnesses. While data is scarce on pediatric hospice utilization, providers are increasingly recognizing that many seriously ill children have a need to receive palliative or hospice care in their homes.
“It was identified in the mid-90s that we needed a dedicated pediatric program, which means you don’t just take your adult hospice caregivers and adjust them just to take care of a child. Children have such different needs. We really needed to have a program dedicated to the physical, emotional and spiritual care in hospice care just for kids. and that program just grew steadily all throughout the state as the [Jo Elyn Nyman] Anchors Programs for Children,” said Marcie Hillary, senior vice president of community relations and chief development officer for NorthStar Care Community. “It developed out of the need for complementary therapies like massage therapy and music therapy.”
Hospice of Michigan and Arbor Hospice created the Van Allsburg Pediatric Hospice Art Program as part of the Jo Elyn Nyman Anchors Program for Children, which developed out of philanthropic support to help children receiving hospice care “really live and make the most through their end-of-life journey,” according to Hillary. The newest initiative is an extension of the program intended to provide expressive art sessions for pediatric hospice patients and their families across Michigan’s lower peninsula.
Representatives from both hospices approached children’s book author Chris Van Allsburg at a local book signing in Grand Rapids, Mich., to consider premiering his book “The Polar Express” to benefit the children’s hospice program. With support from proceeds of the author’s books and movies based on them such as “Zathura” and “Jumani,” the hospice organizations created the art program for their youngest patients and families throughout the state.
Two clay owl sculptures created by Chris and Lisa Van Allsburg’s daughters as children helped inspire the $1 million pediatric hospice art program. Created as an elementary school art project, each daughter’s different personalities were apparent in unique ways through the owl sculptures, serving as a special memory for the Allsburgs. The owls represent how parents can enjoy their children’s creations long after they’ve passed, in addition to the benefits art programming can bring to patients.
“We want to be able to give this to these mothers and these fathers, and we wanted it to be of such a good quality that they will have this to look at and hold onto forever,” said Hillary. “The art kits are beautiful, and everything is very high quality. Because whatever the child puts this on, this has to last forever.”
The pediatric hospice art program is designed to support more than the patient’s individualized needs to include their entire family. Initially aimed to launch in person at the beginning of March, the program began virtually and more quietly than anticipated when the coronavirus pandemic forced the need to socially distance to prevent spread among staff and vulnerable patient populations.
When in-person patient services became limited to medical visits, hospices took many of their services online and leveraged telehealth. Volunteer-based services and therapies moved to virtual platforms, with the art program beginning with video sessions.
The art program has a much different look in light of COVID-19, but this created some advantages. With an online program, the hospices were able to reach patients and families in remote areas of the state, as well as more populated regions.
“We envisioned our art teacher would show up at a doorstep, bring an art kit and do lessons with the kids,” said Hillary. “The pandemic hit and we realized we could still hand-deliver the art kit at the doorstep, but we would have a social worker and the art teacher over Zoom with the family online. We would have never been able to do that pre-pandemic might not have thought of it.”
The hospices’ art program provides virtual art lessons to pediatric patients and provides their families and caregivers the option to participate or take a respite care break. After families are enrolled, they can participate in the roughly hour-long weekly sessions that are tailored to each child’s individual needs and factor in aspects such as age and physical abilities or limitations as their illness progresses.
While virtual for the duration of the pandemic, visits to patients and families in the home are a future goal for the program, which in time may expand to include art programming for adult patients of North Star Care Community hospices.
“We are discussing doing an actual art show that will probably be online and virtual as a way to really help families be able to share and remember their loved ones and also share with the greater community some of these art pieces,” Hillary told Hospice News. “We may use the example of this program to inform a potential art program for adults in hospice. We’re really trying to look at how we can share the gift of what we’ve been given with this program.”