No one ever wants to think about a child in pain, let alone a child having to face a serious life-limiting or terminal illness. It’s always a heartbreaking situation.
As hospice professionals, we feel heartbroken, too. We know it is a privilege to be invited into the family’s circle of support. As trained end-of-life professionals, we focus our efforts to bringing the terminally-ill child comfort and care while supporting their parents and siblings through their very difficult journey.
The Difference in Caring for Children at End of Life
Anyone who cares for children knows that they can not be treated as small adults. In addition to facing different illnesses and disease trajectories, they are still growing and developing physically, mentally, and emotionally. All care needs to be tailored to the specialized needs of the individual child.
Understandably, parents will pursue all possible cures and treatments to help save their child. Palliative care can be an important part of their team by keeping the child’s side effects managed while their other physicians focus on a cure.
If the situation reaches a point where no additional treatment is possible, the focus turns towards not just keeping the child comfortable, but enabling them to have the highest possible quality of life for all their remaining time. Unlike adults who often decline slowly over time, terminally-ill children may still be playing and able to engage in fun activities up to just days before they pass away.
During this time, it’s important to keep the mood light and focus on enjoying time with the child. The hospice team supports this by singing with children, playing games, and creating special moments for the parents to share with their terminally-ill child.
When a parent turns to hospice for additional support, they are not giving up on their child. They are ensuring the child has the most care possible.
One of the biggest challenges with providing care to young children is if they are not yet speaking clearly. However, children can make it clear that they are in pain. And in some cases, they can hide their pain to avoid treatment or to show they are brave. Trained hospice care professionals can understand the subtle signs of unexpressed pain and ensure the child gets the care they need.
Support for the Family of a Terminally-Ill Child
Hospice care does not just support the terminally-ill child. The hospice team works to support the family as they come to grips with the situation.
Social workers and chaplains will help parents and siblings with emotional support. Healthy siblings can often feel left out, and our team of emotional support specialists can help them feel included and supported while offering age-appropriate tools to help them express their fears, frustration, and sadness.
Social workers can also help the family make funeral arrangements for their child. While bereavement specialists can help family members deal with anticipatory grief and continue their support after the child’s death.
No one wants to think about a child in pain or losing their life, but when a family finds themselves experiencing this, they want experienced professionals by their side to provide them and their child with comfort and support. Crossroads Hospice & Palliative Care is here to help. To learn more about how we meet the needs of terminally-ill children, please call 1-888-564-3405.
If you found this information helpful, please share it with your network and community. Copyright © 2020 Crossroads Hospice & Palliative Care. All rights reserved.