A new program from the Hospice of the Piedmont will extend its end-of-life care to the region’s children and their families.
Piedmont Kids, which will be under the hospice’s new Center for Children, will begin seeing new patients in January.
Hospice CEO Dr. James Avery said many people think about older adults when they think about hospice programs.
“Our vision is that no one in Central Virginia has to die alone and in pain,” Avery said. “That also includes children.”
Officials at the hospice — which provides services in Charlottesville and Albemarle, Augusta, Nelson, Buckingham, Fluvanna, Louisa, Orange, Greene and Madison counties — estimated that about 3,000 children in the area live with a life-threatening illness or condition, and that about 10 percent of them are in need of end-of-life care.
Avery, said that support for children was one of the most frequently mentioned issues he heard about when he joined the Hospice of the Piedmont a year and a half ago.
In 2007, the organization created Journeys, a pediatric bereavement program for young family members of people who have died. Avery said Journeys would join Piedmont Kids under the Center for Children.
Avery said Pediatric Kids will take a multidisciplinary approach, including nurses, doctors, social workers and chaplains, to help the patient and family be more comfortable and stay at home together.
Avery said that Piedmont Kids initially would be designated as an end-of-life care program instead of a hospice program.
The distinction between the two has to do with federal financial support, working with Medicaid and Medicare, he said. Hospice programs must meet federal requirements of only admitting Medicaid or Medicare patients who have six months or fewer to live, according to the website for the U.S. Social Security Administration.
The Hospice of the Piedmont estimates that the Piedmont Kids program will serve between 15 and 18 families during its first year.
Since the program is not a federal hospice program, it will be completely supported by donations, Avery said.
Last week, ACAC chose Piedmont Kids, as the beneficiary of a month-long fundraising drive that allowed people to join the gym for 25 days in September for $25. The program received $30,000.
Avery said that Piedmont Kids, once it starts seeing patients in January, will be the third children’s end-of-life care program in the state, joining Noah’s Kids in Richmond and Edmarc Hospice for Children in Hampton Roads.
Portsmouth-based Edmarc has been serving children and their families for about 35 years. Its executive director, Debbie Stitzer-Brame, said that, by making hospice care available to children, “ultimately, you’re saving families.”
She said programs like Edmarc and Piedmont Kids unify families and take stress off of other community services.
“We owe it to them [children] to rally around them, to provide them care and support,” Stitzer-Brame said.
Avery said the Center for Children would work to improve Hospice of the Piedmont’s care not only for children, but also for their families. He said studies have shown that the grieving process for families who have lost a child generally takes much longer than for families who have lost an adult.
“Studies actually show some parents won’t recover until they are out of their child-bearing years,” Avery said. “They may need help for 15 years.”
He said the main way ill children will be referred to the program will be through their doctors.
Dr. Noreen Crain, the medical director of the pediatric palliative care program at the University of Virginia Children’s Hospital, is one of those doctors. Crain works with her team to provide pain and symptom management for young patients.
“There are times when it [palliative care] becomes parallel to hospice,” she said. Crain described hospice programs as generally “broader, bigger, and ideally starts earlier.”
Crain said her team treated between 10 and 15 new patients each year for the first decade of her time as director, but after generous donations to the program, she said, they have been able to triple the number of children they treat.
She said the Piedmont Kids program would “mesh well” with the mission of the palliative care team, extending care from in-patient services to more services in children’s homes. “It helps to keep the focus on children and families,” she said.
“Not every child is going to have the outcome we all hope for,” Crain said. “This is about keeping promises and standing by families in a broad way.”