Pediatric palliative care is specialized medical care for children living with a serious illness. Palliative care focuses on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the child and the family.
A specialty trained team of doctors, nurses, social workers, chaplains and others provide palliative care. The team works together with the child’s other clinicians as an extra layer of support. Palliative care is appropriate at any age and at any stage of an illness. It is appropriate for neonates, perinates, infants, children, adolescents, and young adults, and it can be provided along with treatment meant to cure.
Palliative care is based on need, not prognosis. It is best to start palliative care as early as possible. This benefits both the child and the family.
Pediatric palliative care addresses serious medical conditions, including genetic disorders, cancer, prematurity, neurologic disorders, heart and lung conditions and others. It relieves the symptoms of these diseases, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping, anxiety and depression. In short, it helps the child and the family improve their quality of life.
Pediatric palliative care is family-centered. It helps with communication and coordination of care. With the close communication that palliative care provides, families are better able to choose options that are in line with their values, traditions and culture. This improves the well-being of the entire family.
The Pediatric Palliative Care Team
What makes palliative care so unique? Together, members of the palliative care team take the time to get to know both your child and your family. Because every child and family has individual needs, you may meet and work with different members of the team at different times.
One of the team’s main goals is to make sure that everyone considers the family’s situation and how to make their journey a bit easier. This may include symptom management, communication, and family support.
The Typical Palliative Care Team
Doctor: The palliative care doctor is a palliative care specialist who also has training in pediatrics. In addition to palliative care, he/she may have another area of specialty within pediatrics (such as neonatology or oncology). The doctor’s role is to offer insight into the management of symptoms (such as pain, trouble breathing and nausea), and to guide the team in understanding the medical aspects of the child’s condition.
Nurse Practitioner: The palliative care nurse practitioner plays an important role by managing symptoms and for caring for the entire family. Palliative care nurse practitioners are skilled in guiding families through the complex situations of hospitalization and care at home.
Nurse Coordinator: Palliative care nurse coordinators have knowledge of resources within the hospital and the community. They generally have experience working with agencies that provide children with nursing care, equipment and therapies to improve quality of life. They also have a good sense of how to help other health care providers work together.
Social Worker: Pediatric palliative care social workers help children and their families cope with the trauma of illness. They may help access mental health services for patients, their parents and their siblings. They are also often aware of resources that help with financial and other issues.
Child Life Specialist: Child life specialists help children understand their illness. They use play, dialogue, art, music writing exercises and other approaches. Often they become the child’s “safe harbor” and closest source of support. In addition, child life therapists help brothers and sisters process their own experience of having a sibling who has a serious illness.
Others: Pediatric palliative care teams may also include pharmacists, art and music therapists, chaplains, psychologists, rehabilitation therapists, dietitians and more.
How Palliative Care Helps the Child
The main goal of pediatric palliative care is to allow your child to grow and develop through childhood in the face of serious illness.
Pediatric palliative care teams help your child and family caregivers cope with the challenges of illness and hospitalizations by relieving the symptoms of the disease or the side effects of treatments.
The palliative care team also focuses on supporting the people around your child, including siblings. They provide you and your child’s other medical teams with resources for medical care at home or closer to home. They also coordinate care among your child’s healthcare team and improve communication between you and the primary medical team.
Pediatric palliative care teams manage common symptoms, such as pain, shortness of breath, depression, anxiety, nausea, spasticity and seizures. They explain ways to care for children in unique circumstances, including those who need fetal and neonatal care or suffer from chronic illnesses. They also offer practical advice about making difficult medical decisions and about caring for children outside the hospital and in the community.
A pediatric palliative care team helps whenever and wherever needed, whether in the hospital, at home or in the community. How palliative care can help often depends on how your child is feeling. That’s why having access twenty-four hours a day, seven days a week to a team that knows your child is key.
How Palliative Care Helps Parents and Other Loved Ones
Pediatric palliative care recognizes that many people are affected by a child’s illness, especially parents, siblings and other family members. This also includes extended family, classmates and friends. Providing support for anyone in a sick child’s life who is living with serious illness is an important part of palliative care.
The team approach of palliative care addresses different needs and priorities and can be flexible as needs change. Some family members may benefit from referrals to individual or family counseling. Some siblings may receive support through pediatric therapies such as Child Life programs, art or music.
Many parents struggle with how to talk to their children about illness. Many siblings struggle as well. The palliative care team can provide guidance, resources and connections with appropriate resources for anyone involved in a child’s life, including the school and community.
For parents in particular, dealing with the complex medical system can be a difficult and troubling task. Many seriously ill children have many medical providers taking care of them, and receive treatment in more than one location. This can add to parents feeling overwhelmed and confused by the amount of information they are given.
Parents also struggle with making the “right” choice for their child and family. These decisions can range from practical issues—like whether to send a child to school during medical treatments—to more complicated ones about which medical treatments to try. By spending time getting to know the patient and family, the pediatric palliative care team can help them make decisions that are in line with their goals and values.
Pediatric vs. Adult Palliative Care
People who care for ill children know that their needs are very different from those of adult patients. As anyone who works in pediatrics knows, children are not simply little adults!
Children experience a variety of complex illnesses that are not seen in adults. Even illnesses that are seen in adults can act differently in children because of their unique anatomy and physiology. Children are also growing and developing as they go through an illness. Therefore, all specialized medical care, including palliative care, must be tailored to meet the needs of infants, children and adolescents.
Palliative care can be helpful to all people living with a serious illness and at any stage of their disease. This is particularly the case in children, because they are resilient in illness in ways that adults are not.
Similarities include:
- Palliative care can start at the beginning of an illness and be given along with treatment meant to cure.
- Palliative care aims to improve quality of life by relieving distressing symptoms.
- The team helps with decision making and figuring out care goals.
- Palliative care is medical care but it also involves a team of different disciplines that includes doctors, nurses, social workers and others.
Differences include:
- Having a serious illness is not a “normal” condition for most children. This presents unique challenges in caring for the children and their families.
- Medical decisions for young children are usually made by their family caregivers. Adult patients may make their own decisions.
- Pediatric palliative care can also involve a play therapist, child life therapist and/or child behavioral specialist.
Where Your Child Can Get Pediatric Palliative Care
Families often first meet the pediatric palliative care team at the hospital or clinic appointment. Follow-up visits can also take place in either of these locations. However, many teams will continue to offer care and support via telephone and home visits once the child is at home.
The home environment can be the most comforting and safest place for a child facing a serious illness. Palliative care at home is often supported with the help of a home nursing agency, a community care agency and the child’s primary physician. Some pediatric palliative care teams even offer families 24/7 access so that they can call day or night with questions.
