Hospice care was once provided only to children who were no longer being treated for their terminal illness, but today children’s hospice services and treatments can be given at the same time. It can be provided in a private care facility, hospital, or the child’s own home so that they can spend their remaining time surrounded by family, pets, and belongings in comfort. Because of how it was handled in the past, many are still under the impression that hospice services for children haven’t changed.
Hospice care allows families and their children to spend as much time at home as possible, but a lot of families are comforted in the ways of the hospice setting and find close relationships with the nurses and doctors providing the care. It’s often that families realize the amount of care given in the hospice setting, while at home the care may be limited and relationships aren’t formed, so your child always sees a “complete stranger” coming in. Talk with your child and family to see what kind of care is best for them, and all of you before committing yourself to anything.
Research published in the Journal For Specialists in Pediatric Nursing analyzed the approximately 44,000 child deaths every year and found that many die with a serious health condition but have never enrolled in hospice care, with less than 10 percent utilizing it at the end of life. Choosing hospice for your child can be a difficult decision, but it usually means that they’ll be able to enjoy the highest quality of life possible. At the same time, you’ll want to consider ways of keeping your child as happy as possible no matter what type of setting the care is provided in.
Be Honest and Open
By being as honest and open as possible, your child will feel less anxious simply knowing what to expect. By allowing your child to ask questions and talk about fears, you’ll get a better understanding of how he or she views death so that you can respond in the most comforting and appropriate way. Discussing your child’s death will also enable both of you to have closure, by expressing love, saying goodbye, and sharing memories. It’s important to use direct and simple language rather than terms like “going to sleep.”
Of course, you’ll want to take into account your child’s age and developmental level. A child who is preschool-aged or younger is likely too young to understand the permanence of death although an elementary school-aged child is likely starting to grasp the concept. Teenagers facing death often have had feelings of immortality that are now being challenged, although they usually have an adult understanding.
Let Your Child Experience Childhood as Long as Possible
Facing death is something that should be reserved for adults. Kids don’t get the chance to say they’ve lived their lives and have done many things, but the process can quickly mature them. That makes it important to encourage your child to enjoy their childhood as fully as possible, such as attending school, playing with friends, exploring the outdoors, and reading. Setting short-term goals like taking a special trip can help provide more meaning.
Fulfilling a Wish
There are a number of organizations that offer to fund a “wish” that a terminally ill child has. If possible, help your child decide what they would most like to do before passing, whether it’s a visit to Disney World, meeting a celebrity, or anything else. Those granted wishes make for wonderful memories not only for the child but the whole family. Giving them something to look forward to is one of the best things you could do for them since they are so focused on the end of their life and wondering what will happen tomorrow or next week.
Provide Comfort
Anyone who is dying can find comfort in knowing they won’t be alone, including children. Always be by their side during these final moments and never take anything for granted. They need reassurance that they will be missed and won’t die alone. It’s important for parents and other loved ones to let them know that they will be there by their side when death happens. While it can be a difficult promise to keep, make every effort to be there during those final moments.
Give Permission to Let Go
Even very young children often want to be brave to prevent further suffering to their parents and siblings. They see everyone around them sad and crying, and can’t imagine what it’s going to be like when they’re gone. They don’t want to hurt their families, but they know that they have no control and get scared of what’s going to happen. Some may even need “permission” to die as they fear their death will be too much for loved ones to handle. It’s important to give permission that allows them to let go. As this can be very difficult for a parent, oftentimes, it’s more appropriate for a person who is close to both the child and parents, such as an aunt, uncle, or family friend.
Talk About the Good Times
Remind your child of all the things they’ve accomplished and done in their life. This can be emotional for the parents and is very hard, but may make your child smile and think of all the happy things that happened. Whether it was family vacations to the beach or milestones in school and play, or when they brought the puppy home for the first time. Anything that your child can look back on will make them happy and all of their accomplishments will feel like a lot to them.
Bring Home to Them
Your child’s most comforting place is their home, and hospice settings can feel cold and the opposite of comforting. Ask a nurse beforehand, but bring blankets, wall decor, a warm lit lamp, string lights, and anything from their bedroom at home to make the space more cozy and welcoming. Having their items from home will simply make the process a bit better, no matter what. If you have a family pet like a rabbit, cat, or dog, always bring them with you so your child can ease any worries and stresses they may have.
Meet Your Child’s Needs
When caring for a terminally ill child, parents feel helpless and depressed since they cannot do anything for their child’s condition. When you still have time, never take advantage of it. Fulfilling and engaging activities like exploring the outdoors, reading, and watching good movies together are making sure your child is still making the most use of their day. If they can still attend school, ask their teacher if he/she can make videos, draw pictures and write letters to their classmates.
Have your child keep setting goals, like finishing that book or taking a special trip to the farmer’s market or an even bigger trip to the beach. This way your child will still have meaning and a point to wake up every day and look forward to something. Make sure they keep their friendships and always keep in touch with their classmates; if they can have them visit in hospice, even better.
