1. Putting Pediatric Palliative Care in Prime Time Improving Quality of Life for Children with Cancer
Rebecca Kirch, JD1 , Diane Meier, MD2 and Christina Ullrich, MD3
1American Cancer Society, Washington, DC; 2Icahn School of Medicine at Mount Sinai School, New York, NY; 3Dana Farber Cancer Institute, Boston, MA
Background
Good Health
Quality Treatment
Good QOL
Results
Cancer remains THE leading cause of disease death in children, with 15,780 new cancer cases and 1,960 deaths expected among US children and adolescents this year. 1 in 530 adults aged 20 to 39 are childhood cancer survivors.
Research has improved treatments and boosted survival in some types of pediatric cancer, but treatment toxicities still cause a majority of children to experience distressing side effects and late effects —conditions that often cause significant suffering that continues into adulthood and last lifetimes.
For these children and their families, treating the pain, symptoms and stress of cancer is as important to them as treating the disease.
Pairing pediatric palliative care with delivery of anti-cancer therapies has emerged as the new model for optimal comprehensive cancer care that focuses on the quality of life for the child and family as an essential aspect of managing the disease.
Overcoming the Identity Problem
Palliative care is a relative unknown among consumers (92% really don’t know what it is), yet many providers still associate palliative care with terminal prognosis and believe it becomes useful only near the very end of life.
These misconceptions associating it with “giving up hope,” EOL or hospice remain one of the biggest barriers that keep patients and families from accessing palliative care’s benefits.
How you define palliative care has a big impact on how people feel about it. People understand and want palliative care if we use their own words to describe it.
Children and Families Want What Pediatric Palliative Care Delivers
Using consistent and clear consumer-tested messages to explain palliative care really matters
Once people understand what palliative care is, they have an extremely positive feeling about this type of care:
95% say patient & family education about palliative care as part of treatment is important
92% would be likely to consider palliative care for themselves or their families
92% also said they believe patients should have access to palliative care at hospitals nationwide
A majority of the 275 parents of pediatric cancer patients responding to the October 2014 survey (preliminary findings) that used the consumer-tested palliative care definition reported similar positive feelings:
Consumer Awareness
Q: How knowledgeable, if at all, are you about palliative care?
Q: How important do you think it is that designated pediatric palliative care services be made available at all hospitals in the U.S. caring for children with cancer and their families?
Q: Considering this definition, how likely, if at all, would you be to consider pediatric palliative care for your child during cancer treatment?
Not too likely 2%
Undecided 9%
Somewhat likely
14%
Very likely
72%
Not too important 1%
Undecided 8%
Somewhat important
12%
Very important
77%
Pediatric Palliative Care Resources
Brochure explains pediatric palliative care and its benefits as an integral part of cancer treatment and survivorship care
Includes palliative care definition from consumer research
A new book about pediatric palliative care for families will soon be available from the American Childhood Cancer Organization (acco.org)
Brochure and related short video are available for free download at: org
“Give us the words to use to get
the care we need”
Key messages to explain palliative care:
Palliative care helps to provide the best possible quality of life for patients and their families.
Palliative care helps patients and families manage the pain, symptoms, and stress of serious illness.
Palliative care is a partnership of patient, medical specialists, and family.
Palliative care provides an extra layer of support for families and patients with serious illness.
Palliative care is appropriate at any age and at any stage of a serious illness and can be provided along with curative treatment.
Summary of consumer research findings available at
Future Directions
Methods
Pediatric palliative care is positioned to play a prominent role in addressing the challenges of childhood cancer and survivorship across the continuum:
Additional focused research is essential to improve quality of life and minimize symptoms for the 380,000 childhood and adolescent cancer survivors now living in the US.
Expanding access to pediatric palliative care services in ambulatory and hospital settings is essential to improve consistency in the level of services and staffing available to children and their families across the country.
Practitioner advocacy and engagement in advancing the palliative care public policy agenda will be instrumental in expanding workforce training and access to integrated palliative care services for all seriously ill adults and children so these patients and families can benefit from the most comprehensive cancer care possible.
Campaign information is available at 
A national telephone survey was conducted in June 2011 among 800 adults age 18+ to develop effective messages and provide a roadmap for communicating with consumers and policymakers on the benefits and future direction of palliative care
In addition, an American Childhood Cancer Organization online survey completed in October 2014 by 275 parents of pediatric cancer patients asked about their pediatric palliative care knowledge, experience and preferences regarding its availability as part of comprehensive cancer treatment.