By YANJIE WANG
Capital News Service
LANSING — When her son Charlie was diagnosed with a terminal brain cancer at 2, Abigail Waller didn’t find any pediatric hospice in her community of East Lansing, or elsewhere in mid-Michigan.
Charlie now is 4, and Waller said 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 only 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.
Wiseman said Sparrow takes pediatric hospice case by case, and Charlie is its first patient.
However, Lansing is not the only community in mid-Michigan that lacks hospice services specifically for children with life-threatening illnesses.
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 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 too 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.”
Gloria Danna Brooks, president of the community-based nonprofit Ann Arbor Hospice, said it serves approximately 250 patients a day, of whom up to 10 are pediatric patients.
And last year, 24 of its 1,900 patients were children seeking hospice care, she said.
Brooks said, “It takes special skills and resources to care for a seriously ill child, and many hospices do not offer specialized pediatric care.” Children respond differently to illness and treatment, as well as to medications, so her organization provides a unique plan of care for each one.
“In any community it would be difficult to just run a program for children only and not have it be a part of one that also serves adults,” she said.
Due to the small number of children, Lisa Ashley, president of Hospice and Palliative Care Association of Michigan in DeWitt, said maintaining the competency of the professional staff to treat children is challenging and costly when most of their patients are adult or elderly.
And Spicketts agreed.
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.”
Also statewide, the overall picture of pediatric end-of-life care has not changed as many parents still struggle while seeking hospice care for their children, Spicketts said.
With the 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.
By YANJIE WANG