A hospice and palliative care pediatrician is one who is trained in palliative medicine, specialized care for infants, children and adolescents with life-limiting and life-threatening illness—including genetic disorders, cancer, prematurity, neurologic disorders, heart and lung conditions and others.
Pediatric palliative care doctors help patients and families cope with serious illness by supporting the treatment of the underlying illness and at the same time striving for the best quality of life. They focus on providing relief from the symptoms, pain, and stress of a serious illness. Their goal is to improve quality of life for the child and also the family.
What Training do Hospice and Palliative Medicine Pediatricians Have?
- Four years of medical school
- Three years of residency training in pediatrics
- Board certification in pediatrics
- Additional subspecialty training in hospice and palliative medicine
In 2008, the American Board of Pediatrics began certifying Hospice and Palliative Medicine pediatricians via a comprehensive examination process.
Types of Conditions Patients Receiving Palliative Care May Have Include:
- Conditions for which curative treatment is possible but may fail, such as cancers
- Conditions requiring intensive long-term treatment aimed at maintaining the quality of life, such as cystic fibrosis
- Progressive conditions in which treatment is exclusively palliative after diagnosis, such as Duchenne’s muscular dystrophy or other neurodegenerative disorders
- Conditions involving severe, non-progressive disability, causing extreme vulnerability to health complications, such as hypoxic ischemic encephalopathy
Types of Services Provided by a Hospice and Palliative Medicine Pediatrician May Include:
- Identifying patient and family values and beliefs, including how they define ‘quality of life’
- Guidance as patients and families face medical decisions
- Developing a comprehensive plan of care that will include curative and supportive care
- Managing distressing symptoms such as pain
- Helping families prepare for the end of a child’s life
- Journeying with patients and families through the uncertainty that often comes with a serious illness
- Fostering clear communication between caregivers, including medical providers and family members.
When Does a Hospice and Palliative Medicine Pediatrician Get Involved in a Child’s Care?
Pediatric palliative care is appropriate at any age and at any stage of an illness and can be provided along with treatments meant to cure. Ideally, palliative care begins at the time of diagnosis, so that families have this extra layer of support all the way along their child’s continuum of care. This benefits both the child and the family by relieving the symptoms, pain and emotional wear-and-tear that can make facing a serious illness so difficult for the child and the family caregivers.
Where Can I Find a Hospice and Palliative Medicine Pediatrician?
Families often first meet the Hospice and Palliative Medicine pediatrician at the hospital or during a clinic appointment. (Parents may ask to receive a palliative care consult for their child, if it is not initially offered.)
Hospice and Palliative Medicine pediatricians work collaboratively with a team of other professionals. The team may include nurses, social workers, child life specialists, psychologists, and chaplains.
Members of the palliative care team follow patients over time, including while the child is at home. They offer support over the phone, and some will make home visits. Many teams can be reached 24/7.