Pediatric Palliative Care for Kids with CHDs
Ages 0 - 17 Years
Many families who have a child with a heart defect have heard of pediatric palliative care, but often think it is not for them. They may think their child is not sick enough, or that palliative care means stopping treatment. Does this sound like your family? In fact, palliative care gives support and comfort to many families with heart defects. Palliative care teams help families prioritize goals, make decisions, and coordinate care. Read more to learn if palliative care may be right for you.
In this section
Pediatric palliative care: not what you think!
Many people become nervous when they hear the term “palliative care.” This is usually because they think “palliative care” is the same thing as “hospice care,” and is just for the end of life.
In fact, palliative care is NOT the same thing as hospice care. Palliative care can help people when they are diagnosed, while they are being treated for an illness, and while they are living their lives at home. It can also help people nearing the end of their lives, but patients do not need to be nearing end-of-life in order to have palliative care.
A Pediatric Palliative Care team often includes doctors, nurses, social workers, Child Life specialists, therapists, and spiritual care providers. The whole team works with families to promote comfort and well-being. They often offer care to siblings, as well as parents and patients.
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Who qualifies for pediatric palliative care?
Children and teens qualify for palliative care if they have a condition that could be life-threatening. They do not need to be very sick right now in order to get palliative care. Many people with heart defects could qualify for palliative care. However, most people with heart defects do not receive palliative care. Palliative care can help people withheart defects and their families feel better through the lifespan.
The American Heart Association (AHA) recommends that many people with heart defects should get palliative care. For example, they recommend that patients with heart defects get palliative care if they have:
A genetic syndrome that affects the heart and other systems
Complicated single ventricle disease
Frequent hospital stays (more than 3 a year)
A long hospital stay (more than 2 months)
ECMO for more than 5 days
A VAD
Kidney disease
Significant psychological distress
Trouble communicating with medical providers
Difficulty making decisions
Conflict in the family
A shorter expected lifespan
Families can ask to speak to their hospital’s palliative care team if a child has complex heart disease. In many cases, palliative care can be a powerful and supportive lifelong advocate.
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What does palliative care do?
Palliative care focuses on quality of life, and providers work with patients and their families to make every day as good as possible. Palliative care providers get to know families, and help them to define and realize their goals. Palliative care providers can:
Treat and manage physical pain and discomfort
Help to manage fears, worries, and grief
Guide families to identify their values, goals, and needs
Find support for parents, siblings, and extended family
Help families make decisions they feel good about
Advocate for the family’s goals and interests in the hospital
Connect families to resources in their communities
Help families manage logistics
Usually, palliative care providers can follow patients in the hospital, at home, and in community clinics. They become a familiar and supportive presence through a patient’s life.
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How to find pediatric palliative care
Pediatric palliative care is offered in multiple ways. A family's options for pediatric palliative care can depend on where they live and what resources they have available.
Many families with heart defects can get pediatric palliative care through their hospital. They can ask their doctor for a referral. Doctors and nurses may not recommend pediatric palliative care to families because they also often think about it as hospice care. Remember: palliative care is not just hospice care! Families can advocate for themselves and request pediatric palliative care when their child is getting medical treatment, even when a child is expected to live well into adulthood.
Some states offer free pediatric palliative care to all children with serious illnesses. For example, families in Massachusetts with heart defects can find pediatric palliative care by clicking below. Families outside of Massachusetts should ask their doctor for public palliative care in their communities.
Most communities have clinics and private providers of palliative care. Depending on the clinic, they may be able to offer care at home, in an office, or in an inpatient facility. Families can ask their doctor for programs in their area.
These links are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites.
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More people in your corner
Nearly all families are grateful to have pediatric palliative care as part of their care team. Many families say they wish they had gotten palliative care much earlier than they did.
Palliative care providers can be additional people in your corner, people who have your back, who respect and advocate for your goals, and who support the wellbeing of your whole family.
This content was reviewed by a palliative care provider at Boston Children's Hospital.
Developmental care is best when it is local. Families local to Boston can receive developmental care from the Cardiac Neurodevelopmental Program (CNP), and pediatric palliative care from the PACT team. Families from other regions can use the link below to find their local care team.
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