Better hospice options for kids

A new report highlights barriers to pediatric palliative care

Parents and health workers say Pennsylvania offers few care options for gravely ill children. A task force convened by the Department of Public Welfare documents the obstacles that keep kids from receiving good end-of-life care.

Listen: [audio:090512tereport.mp3]

A group of parents and healthcare providers wrote the report. Parents said they were sometimes steered, even forced toward aggressive treatment when what they wanted was comfort care for their dying child. Social worker Mary McSherry helped lead the task force.

McSherry: The services out there in the state are pretty pitiful, and the understanding of what palliative care is for children is minimal.

McSherry is part of the pediatric palliative care team at the Children’s Hospital of Philadelphia. Specialists there help families work through the “what ifs” of medical care in the face of death.

McSherry: That’s a scary thing, as a parent to have to say to your child, ‘You’re dying.’ Or if their child says ‘Am I dying?’ being able to say those words, ‘Yes you are.’

The task force wants more pediatric palliative care teams around the state, better training for care providers and financial assistance for parents.

Task force members say most hospice programs in Pennsylvania don’t accept children as patients. Pediatrician Chris Feudtner says some hospice workers hesitate because their training doesn’t easily translate to pediatric care.

Feudtner helped to start a palliative care team at the Children’s Hospital of Philadelphia. But he says doctors who are unfamiliar with the specialty worry that a focus on comfort care, instead of cure, will lead to legal problems, especially if foregoing treatment shortens a child’s life.

Feudtner: The laws need to be unambiguously clear that with an appropriate decision-making process that that is an ethical and legal thing to do.

The palliative care task force presents its recommendations to lawmakers this month.