CLINICAL NEWS
• What are the most effective communication techniques for improving patient and family outcomes?
• How can we best help patients and families make
decisions for care that are centered on their personal
values?
• How can we most effectively train clinicians (both
younger and more established clinicians) in these
techniques?
Bereavement Counseling
The need for training in pediatric palliative care is
particularly great in the area of bereavement. Dr. Wolfe
offered this example: When families receive a pediatric
cancer diagnosis and are told that 80 percent of children
with that diagnosis survive, the parents hear that their
child has a 20 percent chance of dying and experience
tremendous uncertainty.
“Bereavement care begins from the moment of
diagnosis and continues past the lifespan of the child,”
Dr. Wolfe said. “While all interdisciplinary clinicians who
care for children with cancer should have basic pediatric
palliative care knowledge, skills, behaviors, and attitudes,
most physicians learn primarily through trial and error,
and 71 percent of training programs lack a curriculum
for pediatric palliative care.8 Nurses, as well, need specific
training.”
While prolonged grief, isolation, behavioral health
concerns, and economic and health decline persisting
for years after a loss of a child are frequent, Dr. Weiner
stated, many families do not seek or cannot find available
support services.9 Dr. Weiner recommended the creation and implementation of financially
sustainable continuity-of-care models
extending for the whole family, at least
through the second year post-loss. She
asked, as well, for rigorous prospective research and quality improvement
projects encompassing education and
training, interdisciplinary care initiatives and interventions, advanced care
planning models, and formulation and
implementation of standards.
Finally, she said, “We must work collaboratively. If we work in our individual
silos, we will get absolutely nowhere.”
Also, she added, because there will never
be enough resources to meet health-care
needs, priorities need to be set.
“A top priority of the ACS,” Rebecca
Kirch, JD, the ACS Director of Quality of Life and Survivorship told ASH
Clinical News, “is to put quality of life on
equal par with curative treatment in our
strategic planning for both clinical and
basic research.”
The common theme of the workshop:
we need better – and earlier – education
for families and providers. She added,
“This workshop made it crystal clear that
we have a long way to go in preserving
quality of life and avoiding preventable
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