Pediatric Hospice: Empowering Children & Families
As a Certified Child Life Specialist (CCLS), I have had the distinct honor of working with hundreds of families as they cope with illness, hospitalization, and trauma. In the pediatric hospice setting my role is to help patients navigate the end of a child’s life, and empower families and children as they have difficult conversations and a wide range of emotions.
Deciding when and how to engage with hospice services can be overwhelming. This guide includes resources that you may find helpful if your child’s medical team has mentioned hospice as a possible next step in your child’s care.
What is pediatric hospice care?
Pediatric hospice is a service provided to children who are terminally ill and considered to be close to the end of life. Typically, it is a service used by families with a child who has a life expectancy of less than 6 months. However, in many cases it is difficult to predict outcomes, so hospice programs often have the flexibility to extend services as needed.
Hospice care is recommended when curative treatments are no longer available or practical, and enhancing quality of life takes priority over attempting to extend the amount of time a seriously ill child may live. Hospice care is family-centered and interdisciplinary, meaning patients and families receive care for physical, emotional, social, and spiritual well-being. These services are typically extended to the whole family, including any siblings who may need support throughout the process. Hospice services can be provided in-home so that families may remain together and children can be in an environment that is familiar to them, or in a hospice facility if the family prefers. When hospice begins the family will establish goals related to providing comfort, enjoyment of life, and pain management, allowing families to focus on making memories and being present with their child.
Who is part of a pediatric hospice care team?
Every program is different, so it is important to check with any hospice organization to learn more about their services, but typically, a pediatric hospice care team will include the following individuals.
Doctors will oversee your child’s medical needs including decisions related to medications.
Nurses and aides can provide direct care to your child including administering medication, bathing, changing clothing and bedding, feeding and more.
Social Workers provide counseling and support to children and families. Their work includes helping identify appropriate resources and aids throughout the hospice journey.
Child Life Specialists provide support to pediatric patients and their siblings to help them understand their diagnosis and process their feelings. They also engage families in legacy-building and memory-making activities.
Chaplains of all denominations and religious affiliations provide spiritual support to children and families.
Volunteers can provide respite for caregivers, play opportunities, and help for other needs.
Family members including parents and siblings are a part of the care team and should participate in direct care as they are willing and capable. This is your time to be with your family and your loving care is important for your child.
Hospice Care, Concurrent Care & Palliative Care
While some use the terms interchangeably, hospice and palliative care are different. Palliative care is a support that can be added to a treatment plan at any time after diagnosis, while hospice is focused on end-of-life care. The two types of treatment utilize many of the same practices, but are applied at different times during a child’s illness. To learn more about pediatric palliative care, check out this RedTreehouse.org resource guide.
Concurrent care allows children to continue being treated by their primary medical teams and even pursue curative options while also receiving hospice. Any child under the age of 21 who is eligible for Medicare or the Children’s Health Insurance Program (CHIP) is eligible for this type of care. Ask your doctor of receiving palliative care alongside their other medical treatment may be right for your child as a next step before making a decision about pursuing hospice care.
Helpful resources
The National Hospice and Palliative Care Organization helps families with general information about hospice care to help in making informed decisions. They also help families interested in care find a program in their area.
When searching for the right fit for your family, you may meet with multiple hospice providers. The Mayo Clinic and Medicare both offer lists of helpful questions to ask during this process.
The Courageous Parents Network is a non-profit dedicated to empowering families of children with serious illnesses. Their library has stories from families who have experienced hospice care, and other resources that may be helpful.
When a child dies the whole family needs support. The Compassionate Friends is a non-profit organization with chapters in all 50 states that connects families to bereavement resources.
The Dougy Center focuses on childhood grief, with resources that might come in handy when talking with your children about death.
Support Now is a wonderful resource that allows family and friends to offer support during hard times. It lets your community be there for you in so many different ways, without overwhelming your already overwhelmed life.
The Pediatric Hospice Care support pathway on RedTreehouse.org has additional resources that may be helpful to you and your family.
Children’s Books
One of the most relatable and effective ways to connect with children is through books. There are many amazing books to help kids cope with the fear and grief that often surrounds the hospice experience. These are just a few of my favorites. If you make the decision to engage in hospice care for your child, as their team if they have any book recommendations.
Reading books on challenging topics can be overwhelming and emotional. Remember that it is ok, and may even be helpful for children to see your emotions as it reminds them that their own emotions are normal and healthy. If you would prefer to have someone else read these books with you and your children, ask your hospice team to read with you or watch a recorded reading (links to YouTube recordings are included where available).
The Invisible String (ages 4-8), by Patrice Karst, focuses on grief, loss, and separation with a reassuring and gentle touch.
The Memory Box (ages 4-10), is a story about loss that speaks directly to memories and the many ways we can keep memories alive. It has a great call-to-action for children and families to create memory boxes, while helping to identify important feelings.
Cinnamon Roll Sunday: A Child’s Story of Anticipatory Grief (ages 8-11) by Jennifer L. Allen, discusses the difficult topic of anticipatory grief. This is a great story for any family unsure of how to approach the uncertainty of illness and having difficult conversations about the future.
I’m On Hospice: A Children’s Book for Processing and Coping with a Terminal Illness (age 5+), by Sydney Crane, is a great tool for introducing hospice care to children. It opens the door for conversation and discussion around terminal illness, and what kind of care children can expect.
This Book is For All Kids, But Especially My Sister Libby. Libby Died (ages 5+), by Jack Simon, is the story of 5-year-old Jack who had a lot of questions and observations when his sister died. His mom kept a diary of them, which later became this book. It is such a special book that really captures what grief looks like and reminds children and families that they are not alone in these thoughts.
I miss you: A First Look at Death (ages 4-8) does a wonderful job of explaining death to younger children. Written by a counselor and psychotherapist, it also covers feelings and ways to cope with grief and loss.
Books for Caregivers
Through a Child’s Eyes (recommended for caregivers) by Karen Longstreth, is for any caregiver struggling with what to say to their children during loss and grief. The author discusses difficult topics such as death, organ donation, cremation, burial, and cemeteries in ways that make them developmentally appropriate for children.
Alyssa Friedberg is a Certified Child Life Specialist, Certified Child and Adolescent Grief Counselor, and the founder of Chicago Child Life Consulting. She is passionate about helping children and families navigate healthcare experiences and ensuring all children have access to child life services.