Few hospice services available for children
Charlie now is 4, and Waller said that, although he is doing well with medication, it doesn’t change the prognosis that there is no cure.
Thanks to Charlie’s case, however, Sparrow Hospital is piloting a collaborative program for its pediatrics department to address the need of hospice care for children, said Michelle Wiseman, director of Sparrow Hospice and Palliative Care Services.
“Big metropolitan cities like Grand Rapids, Ann Arbor and Detroit have pediatric hospice, but here in Lansing the problem is we don’t have enough children,” she said.
Mary Spicketts, director of the pediatric hospice program of Hospice of Michigan in Ada, said the state doesn’t have enough such programs, especially “in rural areas such as the mid-Michigan, north and northeast regions.”
She said the majority are in Southeast Michigan and West Michigan.
And the common reason remains the same: Few families with dying children seek hospice care.
Vicky Lorencen, a communication specialist at Allegiance Health in Jackson, said the hospital provides hospice service for patients of all ages, but it decided to “devote its services to adults” because the number of dying children who need hospice locally is small.
“There was one time, years ago, when we had specialized staffing for children who need care, but we only had two or three children a year,” she said. “That was not sustainable.”
Pediatric hospice requires a physician to certify that a terminal illness is expected to limit the child’s life expectancy to typically six months or less, the same requirement as for adults. But special education and training are necessary to understand the children’s current situation and prepare their families for what will happen, Spicketts said.
“Pediatric hospice programs are not typically even close to being profitable in today’s health care environment where hospitals and hospices are struggling to stay within budget,” she said. “It is seen as a budget-buster, and programs are either eliminated or severely restricted in both staffing and ability to provide expert pediatric end-of-life care.”
Holding out hope that a cure can be found, turning to pediatric hospice is often the last choice of parents whose child has a terminal illness, she said.