Following the right PATH to better pediatric care
St. Louis program shows the way
It is financially impossible for some hospices to make the policy changes necessary to accommodate terminally ill children. These hospices should consider aligning with a local hospice or hospital that has pediatric palliative care expertise, says Kim Oberst, RN, BSN, pediatrics director for the Hospice of Michigan in Southfield.
One program that takes this approach can
be found at SSM Cardinal Glennon Children’s Hospital in St. Louis. In 1998, the Pediatric Approach to Hospice Support (PATHS) program began to evaluate and assess pediatric end-of-life care through clinical application, education, and the development of best practices in dealing with terminally ill children.
One PATHS component is its Footprints project, which focuses on the need for advance care planning and continuity of care, starting with the child’s diagnosis all the way through to the end stages. According to project director Suzanne S. Toce, MD, a neonatologist, "For families to experience a peaceful death with their child, we need to share their burden."
This pilot program, one of 22 Promoting Excellence in End-of-Life Care projects sponsored by The Robert Wood Johnson Foundation, highlights anticipatory guidance and continuity of care as two critical factors that benefit the child. "We have found that the best way to help a terminally ill child is to provide a way for one doctor to follow the child throughout the course of the illness," says Toce. "We also emphasize the family’s values in the treatment approach."
A by-product of this program is the development of the Just In Time educational curriculum. "This training is offered to any professional — hospice nurses, emergency room physicians, pediatric nurses, and general practitioners — who will be providing care to a terminally ill child in a community," says Toce.
Similar to the Education for Physicians on End-of-Life Care program in format, the training introduces palliative care principles into clinical practice. "We are aiming for the child to be cared for in the community," says Toce. The team currently is developing an evaluation tool to assess quality of life for terminally ill children.
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