If your child faces a life-threatening disease or life-limiting medical condition, it can be undoubtedly challenging on them and your family. Treatments and medications that may be necessary to save or extend your child’s life can sometimes take as much toll on them as the illness itself.
This is where palliative care may be available and helpful. It’s been shown to improve the quality of life of patients and that of their families who are facing challenges with a serious illness, whether those are psychological, social or spiritual.
If you’re unfamiliar with palliative care services or have some concerns – especially as it relates to other forms of care like hospice – Rachel Cramton, MD, a hospitalist and director of the pediatric palliative care program at Banner Children's broke down the what, why and when of palliative care.
What is pediatric palliative care?
Pediatric palliative care is specialized medical care for children – from newborns through young adulthood. This care is focused on providing relief from the symptoms and stress of a serious illness with the goal of improving quality of life for the child and family.
“I really think of palliative care as an extra hug of services,” Dr. Cramton said. “It doesn’t replace specialists, but it is there to help with a child’s serious or life-limiting disease — diseases that can cause them to have lots of hospital visits, issues and concerns.”
Pediatric palliative care focuses on the relief of side effects, discomfort and pain, symptoms, emotional stress and other difficulties associated with an illness.
Who is on a palliative care team?
Palliative care is a team-based approach to your child’s care. Typically, a palliative care team will include doctors, nurses, child life specialists, social workers, religious and spiritual advisors, nutritionists, pharmacists and more.
This team works collaboratively with you, your child and your child’s treating physicians to develop and administer an individualized care plan.
“As palliative care professionals, we have the gift of time,” Dr. Cramton said. “Whereas your child’s treating physicians may only have 20 to 30 minutes with your child, we can give you as much time as needed for another layer of support and guidance.”
How does palliative care differ from hospice?
“Sometimes when I meet with parents for the first time and mention palliative care for their child, there is some hesitancy and fear surrounding this word, and I think often it’s because they believe we’re there because there is no longer any hope for their child,” Dr. Cramton said. “But palliative care doesn’t take hope away. We’re there to help families understand what they’re hoping for. We also hope alongside them.”
Palliative care is focused on anyone with a serious illness regardless of their prognosis and choices for care. Unlike with hospice, which is care focused on the comfort and emotional needs during the final months of life, children can receive palliative care alongside curative and life-extending treatments.
How does pediatric palliative care differ from adult palliative care?
Children experience a variety of complex illnesses that aren’t seen in adults. Even illnesses seen in adults can act differently in children. As well, children grow and develop as they go through an illness.
Therefore, all specialized medical care, including palliative care, is tailored to meet the unique needs of infants, children and young adults. This can involve a play therapist, child life specialist and/or child behavioral specialist.
What are the benefits of pediatric palliative care?
Now that you understand what palliative care is, here are some of the benefits of this type of care:
Symptom and pain management. Pediatric palliative care professionals can help provide relief of symptoms, such as pain, shortness of breath, nausea and difficulty sleeping. They can help your child and family cope with anxiety, depression and stress and give you coping strategies to feel better.
Palliative care providers can also refer you and your child to specialists if you need additional care.
Decision-making. Dealing with a complex medical system can be difficult and confusing, especially if your child is receiving care in more than one location. You may struggle with the amount of information given and making the “right” choice for your child.
Your palliative care team can help you better understand your child’s condition, including how it may impact their life and future. They can gather and process information about complicated treatments and therapies and help you weigh your options.
The more informed you are, the more you can make care decisions aligned with your values, goals and preferences.
Communication. Your palliative care team supports communication between you and your child’s medical team and can help communicate your values, goals and preferences to your providers so that you can receive care on your terms. They put the focus of care back where it should be – in your hands.
“An example of this is a circumstance where a family is thinking about not fighting after their child’s third relapse with cancer, and the oncologist says there is something else they can try that may give them more time but requires additional hospital stays,” Dr. Cramton said. “Sometimes families think they are letting their oncologist down. But if a family just wishes to spend the last remaining time with their child at home, this is where we can help communicate their wishes to their provider.”
Family support. The palliative care team focuses on supporting the people around your child, including siblings. They can help build a support network, such as community resources and support groups, that makes coping with illness easier for your child and family.
Is my child eligible for palliative care?
Children with various conditions receive palliative care. Chances are if your child is dealing with a serious illness, condition or injury, palliative care is a good idea.
“Anyone with a life-altering or life-threatening condition is eligible,” Dr. Cramton said. “This can include but certainly isn’t limited to children with cancer, muscular dystrophy, congenital heart disease, kidney or liver disease and genetic disorders.”
Where do I find pediatric palliative care for my child?
If you’re ready to take the step of seeking out palliative care for your child, talk to your child’s health care provider or treating specialists about what resources are available to your child.
Takeaway
Living with a life-threatening or life-limiting illness can take a toll on your child and family. Pediatric palliative care exists to ease the burdens associated with having a serious disease and improve quality of life.
Speak with your child’s provider to learn more about palliative care available to your child. There may be resources that can help provide your child the comfort and support needed to live life more fully. To find a Banner Health specialist near you, visit bannerhealth.com.
