How do I get started with pediatric palliative care?
The first thing to do to get started with pediatric palliative care is to put together a care team. Here’s who might be part of a pediatric palliative care team:
- Doctor: This will likely be a palliative care specialist who’s also a pediatrician. The doctor will guide the care team in understanding the medical aspects of your child’s illness.
- Nurse practitioner: The palliative care nurse practitioner can help manage the physical symptoms of your child’s illness, such as pain, trouble breathing, or nausea (being sick in the stomach). They can also guide your family through treatments and help you manage care at home.
- Nurse coordinator: Palliative care nurse coordinators have knowledge of resources within the hospital and the community. They can also help different health care providers work together.
- Social worker: Pediatric palliative care social workers can help your child and your family cope with the stress of an illness. They can connect your family with counselors or other health care providers or help with financial and other issues.
- Child life specialist: Child life specialists can help your child understand their illness by using strategies such as play, dialogue, or art. They can also help your other children cope with having a brother or sister who’s ill.
- Pediatric palliative care teams may also include pharmacists, art and music therapists, chaplains, psychologists, rehabilitation therapists, dietitians, and more.
All of these people can help care for a child with a serious or chronic illness and help families decide the best course of action. But the most important person is, of course, the child themselves. Here are some tips on how to involve a child in their palliative care:
How can a child be involved in their own care?
Parents and legal guardians have to make the final decision about a child’s care. However, involving the child in their own care and decision-making process can help them feel less anxious about what’s happening to them.
- Talk about the illness and treatments that may be done in an age-appropriate way. The care team can help parents and caregivers find strategies for how to do this.
- Be open to talking about feelings of anxiety, fear, anger, and sadness.
- Some children find it easier to express their feelings through creative forms of therapy, such as art and music.
- Some families have cultural or spiritual traditions that can help children process what is happening to them.
How can I learn more about pediatric palliative care?
Online resources to learn more about pediatric palliative care: