Pediatric Palliative Care: What is it and Who Needs it?
Having a child with a serious illness is difficult for the entire family. Treatments that may be necessary to save or extend a child’s life can sometimes take as much of a toll on them as the illness itself. If your child has a serious illness, palliative care may be available and beneficial while they are being treated for their medical condition. Often confused or equated with hospice care (which is provided when a person is considered to be at the end of their life), palliative care can be added to a treatment plan at any time following the diagnosis of a serious illness. This guide explores the differences between palliative and hospice care, and share resources that may help you determine whether or not a palliative care program could benefit your child’s health and well-being.
What is palliative care?
Palliative care is a specialized type of medical care focused on relieving the physical symptoms of a serious illness and reducing the emotional stress a patient experiences during treatment. It is appropriate at any age, at any time following a serious diagnosis, and you can have palliative care while you are seeking a cure for your illness. The overall goal of palliative care is to improve a person’s quality of life.
Palliative Care: YOU are a BRIDGE from GetPalliativeCare.org
The website GetPalliativeCare.org is entirely dedicated to explaining the role of palliative care in treating serious illnesses and helping people who are interested in receiving palliative care find a program close to them. Their video, Palliative Care: YOU are a Bridge, is a simple, visual explanation of how this type of care is used to support a person through their serious illness.
This guide from the National Institutes of Health provides information on the benefits of palliative care specifically for children and their families.
If you’re just starting to learn about palliative care you probably have a lot of questions. This list covers many of the frequently asked questions about palliative care and can be a great place to start.
One of the best ways to learn about something is through the example of others who have been in your shoes. The podcast presentation of Ryan’s Pediatric Palliative Care story may help you to better understand what happens during the palliative care experience. You can find and read additional Pediatric Palliative Care Stories here.
This documentary video from Akron Children’s Hospital looks at several pediatric palliative care patients and their experiences. Watch Portraits of Life, Love & Legacy Through Pediatric Palliative Care for several different perspectives on this service.
Caring for a Child with a Serious Illness
With a complex medical diagnosis there may be multiple specialists with multiple opinions on how your child should be treated for their illness. Their goals may be centered on the child's medical needs first and foremost. A palliative care specialist or team can help you understand the options in front of you, and balance those treatments with the goals that you and your child have for their life. Attending school, playing outside, following rules set by adults, and having goals and a sense of purpose are all important to a child’s overall well-being. Balancing medical needs alongside the everyday activities of being a kid can contribute to overall quality of life.
Empowering children to play a role in their own care and decision-making can help them feel a little more in control at a difficult time. Voicing My Choices and My Wishes shares conversational guides designed to help young children and teens express their wishes as they relate to their serious illness.
The Courageous Parents Network is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness.
Caring Connections offers a helpline for those caring for someone with a serious illness. Visit their info page to learn more or call 800-658-8898 to find immediate support.
Resources for families and Children with Life-Limiting or Terminal Illnesses
It may not always be possible to cure a child’s illness, but this does not mean that illness is untreatable. Children may undergo treatment for many months or years even when the outcome is an expected death. Palliative care during that time can help a child enjoy a high quality of life for as long as possible. As a caregiver you can play a crucial role in helping a child continue to live a fulfilling and comfortable life. Speaking openly and honestly with your child’s health care team about your family’s needs and concerns is a great first step so they can work with you to find support that is not medical in nature.
This toolkit from the Global Genes Project has information and resources for caregivers of children with a terminal or life-limiting illness, including recommendations for maintaining family stability and balancing finances.
This guide and resources within focus on the comfort and care needs of children with a terminal cancer diagnosis.
This resource from the Courageous Parents Network explains the concept of “anticipatory grief,” discussing how the grieving process begins when you first learn that a profound loss or death will likely occur in the future.
Finding a Palliative Care Provider
If you are ready to take the step of seeking out palliative care for your child, have a conversation with your doctor about the resources that are available in your region.
Get Palliative Care has a provider directory. Be sure to select a provider that specializes in supporting pediatric families, and if there is more than one provider available in your area consider interviewing them to see who is a good fit for your family.
What is Hospice Care?
Hospice care is a type of healthcare that supports a patient’s physical comfort and emotional needs during the final months of their life. It is not meant to accompany treatment that could cure a person of their serious illness, and the treatments provided in hospice are not meant to extend a person’s life. Should the time come for your child to transition from active medical care to end-of-life care, a palliative care team can help you through the process of finding a hospice program. Here are some resources that may be helpful should you find yourself pursuing hospice care.
To learn more about hospice care check out this guide from RedTreehouse.org.
Additional Support for Your Family
If your child has a serious illness there are resources available to help you find relief from the various stressors that may be impacting your family. The following guides from Red Treehouse may be helpful to you.
Contributed by: Simran Patwa, Pre-Medical Student pursuing a Bachelor of Science in Biology, Case Western Reserve University (2022).