Hospice is specialized medical care for those with a life-threatening illness, typically reserved for patients expected to live a year or less who have lessened or stopped curative treatments. Of course, the prognosis isn’t always accurate and can be even harder to predict in children as they generally have healthier organ systems, and some may get better, even “graduating” from hospice as their health improves and it’s no longer required.

Unfortunately, hospice care for children is underutilized – of the approximately 44,000 pediatric deaths a year, according to a 2014 study, “Who are the children using hospice care?” fewer than 10% of children utilize it for end of life care. Children’s hospice is a bit different than it is for older adults. While relieving pain and managing symptoms is the focus, helping to improve quality of life, children may also receive curative treatments and receive care from various providers too.

The Hospice Care Team

A board-certified physician with training in pediatrics is part of the hospice care team. The doctor may have another area of specialty, too, such as oncology or neonatology. He or she typically works in coordination with the child’s other physicians and healthcare providers and will provide insight into managing symptoms like pain, nausea. or difficulty breathing. The doctor’s role is to also guide the team in understanding the medical aspects of the child’s condition.

Other team members usually include a nurse who helps to manage pain and other symptoms along with home health aides who are trained in hospice care and can assist with daily care needs.

A social worker is likely to be on hand to help the child and family members cope with emotional and other issues related to their condition, while a grief counselor can provide education for members of the family on loss and grief. There may be others such as art and music therapists, rehab therapists, nutritionists, and psychologists helping too. The team as a whole helps both the child and family caregivers cope with the challenges of the illness and focus on emotional support.

Helping to Determine the Level of Pain and Where It’s Coming From

Children, especially young children, often have difficulty explaining their pain, including how much it hurts and where it is. A hospice doctor and other team members use techniques specific to children, such as body language and special charts to determine how bad the pain is and to identify where it’s coming from.

Providing the Appropriate Pain Relief

It’s more difficult to provide medicine that will treat pain and other symptoms in children as their bodies are smaller, and they process it differently. Many can’t swallow pills. A hospice doctor understands which medicine to prescribe in the right doses while recommending ways the child can take it, such as pills that dissolve on the tongue, liquids, or special patches.

Helping Children Understand Their Illness and Medical Care

Depending on the child’s age, many don’t understand their illness or why they need tests and medicines. The doctor and other hospice team members can help the child understand what they’re going through in an age-appropriate way. They can also recommend ways for the child to express his or her feelings, such as through art, music, or play.