Nearly 1,000 of the more than 40,000 people who die
each year in Maryland are children under 18. With almost
every one of those deaths, a pediatric palliative care
program can offer support to the child and to the family
through the dying process and beyond.
A recently released comprehensive report, "Challenges
and Opportunities to Improve Pediatric Palliative Care in
Maryland," makes recommendations for improving the care of
dying children and summarizes the results of the Maryland
Pediatric Care Summit held last fall at the
Johns Hopkins School of
Nursing and hosted by the Johns Hopkins Harriet Lane
Compassionate Care Program.
The summit findings focus around five central
themes--denial of death, compassionate communication,
continuity of care, public education and overcoming
barriers--and reviewed current programs and services. From
these themes, the more than 40 parents and health care
professionals attending the summit developed eight
recommendations for improving pediatric palliative care:
Make palliative care services
family-centered.
Integrate palliative care with
curative care.
Educate families, health care
professionals and the public.
Develop innovative models of care
delivery.
Improve facilities and space
within hospitals to provide palliative and end-of-life
care.
Develop pediatric-focused policies
and practices.
Develop an interdisciplinary
statewide model for the provision of pediatric palliative
care from pre-natal through adolescence.
Establish resource networks for
professionals and parents.
At the summit, the participants also chronicled the
state of pediatric palliative care in Maryland; identified
gaps in the clinical care, financing and policy that affect
the care of dying children and their families; and created
a model of parent-professional cooperation. These same
advocates have been instrumental in establishing the
Pediatric Palliative Care Coalition of Maryland, which is
now refining action steps to accomplish the recommendations
and is exploring other opportunities for collaboration and
education.
Cynda Rushton, a School of Nursing faculty member and
HLCC program director, organized the summit with Nancy
Hutton, of the School of Medicine, and Elizabeth Reder and
Barbara Hall, both of the Johns Hopkins Hospital Children's
Medical and Surgical Center. "Above all," Rushton said,
"this summit demonstrated that family-centered, integrated
and interdisciplinary pediatric palliative care is the
preferred model of care. It works with — not instead
of — other treatments. We hope to bring to Maryland
innovative programs that will deliver that model of care
from the time of diagnosis and for the benefit of both the
child and the family."