If your child is facing a life-limiting illness, you may have heard the term “pediatric hospice care” and might have some questions about what this type of treatment can do for your family. What is the goal of pediatric hospice care? What kind of support does it provide? What can you expect from it? Pediatric hospice care can be an essential component of planning for this stage in your child’s life, giving them and your family the support they need to move forward comfortably. While each hospice care plan is unique to the child receiving it, here’s what you can generally expect if you choose this type of care for your child.
What is Pediatric Hospice Care?
Pediatric hospice care aims to help children and their families remain comfortable during the end stages of a life-limiting illness. At this point, curative treatments have been stopped, and the primary concern is maintaining a high quality of life for the child. Hospice care teams, which consist of nurses, doctors, child life specialists, counselors, and other medical professionals, will create a customized care plan designed to address the child and family’s mental, physical and spiritual needs. This care is then provided in the child’s home, allowing them to remain in familiar surroundings and feel as comfortable as possible while receiving treatment.
Many life limiting illnesses come with unpleasant symptoms or medications that cause tiredness, nausea, achiness and other complaints. Pain management is therefore an important component of hospice care. Depending on your child’s needs, the care team may advocate for changing medications, beginning physical or occupational therapy, or establishing a regimen of massage or light exercise to help alleviate some of their symptoms. These treatments can help your child maintain their energy, lessen pain and other symptoms, and continue playing or enjoying hobbies as much as possible.
Mental health is an important component of hospice care. Many children feel scared or angry when they learn about their diagnosis, while others feel worried for themselves and their families. They often find it difficult to discuss these feelings with their parents and other loved ones, even though they may want to have these conversations. Hospice care addresses these needs by providing mental health counseling, which allows children to talk about their feelings and get strategies for managing them from a professional counselor who specializes in pediatric hospice care. The counselor may also suggest various types of therapy such as art, music, or play therapy to help.
If your family observes a religious practice, hospice care can connect your child with chaplains who are specially trained in supporting those with life-limiting illnesses. Children may have questions about what will happen after they pass or find comfort in praying with someone on a regular basis. With the support of a religious person of your faith tradition, your child may be able to accept their illness and remain optimistic during an otherwise difficult time. If your family is not religious, consider whether meditation or other spiritual practices may be helpful, and ask your hospice care team to help you find the right resources.
Families of children with life-limiting illnesses can find themselves overwhelmed when dealing with their child’s care and the many emotions that come with this stage of their life. Hospice care provides families with the resources they need to begin feeling more secure. Your family can take advantage of mental and spiritual counseling as well as the vast knowledge and support of medical professionals. In addition to caring for your child, the hospice care team may be able to talk to your child and their friends about what to expect from their illness, help your family maintain clear communication with other medical professionals involved in your child’s care, connect you with other helpful resources, and provide respite care while you attend to other needs or get some rest. Siblings, who often feel ignored while their brother or sister is receiving care, can particularly benefit from sharing their feelings with a counselor.
Finding a Hospice Care Provider
Speak with KidsCare of the Rockies for more information about pediatric hospice care and to discuss your child’s needs. KidsCare staff has experience in assembling teams of doctors, nurses, counselors and other medical professionals to support families and children with life-limiting illnesses. Each team provides individualized care in your own home, allowing you to spend more time with your child and helping give them a higher quality of life as they transition, and implements a care plan designed specifically to address your child and family’s unique needs.