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Complexity Requires Specialty
Physicians in Michigan work to provide comfort and support to children with life-threatening conditions and their families
"How do we do the best we can for babies and children spending the last days of their much too short lifetime in the hospital," Doctor Pituch wondered.
Doctor Pituch gathered his experiences in providing end-of-life care for the children who suffered throughout the AIDS epidemic to begin a program that would give individuals of any age, and their families, the support needed while facing chronic and terminal illnesses. He and Maureen Giacomazza, RN, collaborated to establish a pediatric palliative care practice at the University of Michigan.
Pediatric palliative care has since expanded to provide care for thousands of children and their families each year. There is an invested interest throughout the country in ensuring children who face the rarity of such diseases with the resources and support needed to live as long and well as possible. The Concurrent Care for Children provision in the Affordable Care Act and philanthropic gifts are expanding the accessibility of pediatric palliative care services for both children and their families.
"Children exist in the context of the family," Doctor Pituch says. "In addition to the care required by the child, we need to help families face the conditions and make these challenging decisions. We also need not forget the networks and bereavement support required for parents who lose a child. In other types of medicine when one dies, the parent-to-parent connections and relationships with the practitioners often disappear. One of the goals of the work we do is to narrow the hole left after the death of a child as much as possible."
Palliative care is offered for four different categories of illness. Care is offered for children with diseases that are life-threatening but have potential to be cured, children born with abnormal life expectancy but with unknown or unpredictable factors involved, children who have faced a tragic accident, and children confronting fatality. Children are complex individuals who face particularly complex conditions. With complex conditions for children, comes complex decision-making for parents.
"Complex decision-making is a specific skill that those involved in providing palliative pediatric care are specially trained in. Effective care takes a diverse team of specialists -- physicians, nurses, social workers, chaplains, physical therapists, occupational therapists," Jeanne Lewandowski, MD, says.
Doctor Lewandowski has worked with children throughout the state on both ends of the pediatric palliative care spectrum. She has worked with children who live a long time in medically fragile conditions with a long trajectory toward death and children who are in their last days. Pediatric palliative care focuses on supporting quality decision-making and improving the quality of life for both the child and the family, regardless of where in the process the disease is.
"Children are hopeful humans who bring great joy to their families. I am fortunate to get to be a part of their special journey," Doctor Lewandowski says. "They deserve love and support, and the medical community, and society, here in Michigan is doing a darn good job. Pediatric palliative care has a ways to go, but we're doing worthwhile work."