Parents of children with life-threatening conditions are expected to make difficult decisions every day. Among them may be whether to talk to their sick child and their siblings about the possibility of death. If parents choose to talk to their children about their sick child's prognosis, the palliative care team can be there to help.
Should I Talk to My Child About Death?
Palliative care professionals agree that children typically know more than their parents think they do. Parents can gauge what their children know through the questions children ask. If a terminally ill child asks, for example, "Am I going to die?" they may not want to hear "Everyone is going to die someday." Instead, this can be a signal that the child knows their condition is life threatening.
Some professionals will recommend open and direct communication with children about the child's prognosis at all times. Others may say it's only necessary to tell the child as much as the child asks to know. All acknowledge that each family is different.
If parents avoid children's questions, the children may ask someone else or hold the questions in, which could result in unnecessary anxiety. Acknowledging rather than disregarding questions can build trust and show children that their concerns are important. This may increase the likelihood that children come to their parents with future questions.
During the course of a child's illness, the child and their siblings may feel left out. The child who is sick may recognize that parents always whisper or leave the room to talk to doctors. The siblings will notice that more attention is focused on the sick child. Without continued open communication, children may draw the wrong conclusions from these observations.
How Should I Talk to My Child About Death?
Experts advise parents to be honest and concrete in discussions about death. Avoid euphemisms. Adults use euphemisms to avoid uncomfortable subjects, but children, who think literally throughout a great deal of childhood, may not pick up on these cues.
If a parent tells a child whose sibling has died that the sibling is sleeping, the child may expect the sibling to wake up. If the parent says the sibling will not wake up, the child may fear going to sleep and not waking up.
Though the words are difficult to say, professionals agree that parents should use terms like "die," "dead," and "dying." If parents cannot say these words, the palliative care team can help explain as much as the parents want their children to know.
How Do I Break Bad News to My Children?
Maintaining open communication with children from the time of diagnosis onward lessens the likelihood of suddenly surprising a child with bad news later on. Keeping children up to date at every stage of treatment can make breaking bad news easier.
When a child has been following the progress of treatments, a parent or palliative care professional can say something similar to, "Remember the medicine we hoped would make you better? It's not doing what we hoped it would do."
Still, it won't be easy to start the conversation. Social workers and child life specialists recommend a number of resources -- such as story and activity books -- that may help break the ice and help explain difficult concepts. Professionals also encourage parents to use children's questions as opportunities to start a conversation.
What Should I Expect?
When a family member has a life-threatening condition, frequently children will ask questions. The older they get, the more specific their questions will be. As teenagers, they may even be the ones guiding the conversation.
Although the answers to their questions may bring bad news, children do not process bad news in the same way that adults do. Parents may be hurt by this. Adults understand the permanence of death immediately, so we respond with tears. Children, especially those under age 12, may not understand the permanence of death right away, so they may not have a strong initial reaction to bad news.
Children can feel insecure during heavy or serious conversation. They may want to get back to normal as soon as possible. This may mean returning quickly to the game they were playing or the TV show they were watching. This doesn't mean the child didn't hear or understand. Parents can join the child in the activity in order to be there when questions arise.
When a child is dying, many parents want the siblings to be at the child's bedside with the rest of the family. Child life specialists will help facilitate this, but they advise parents that siblings may want to leave the room quickly and return to what they were doing before. Parents should understand that this behavior is normal.
What Can My Child Understand?
Each year of a child's life brings enhanced ability to understand the reality and permanence of death.
Infant and toddler siblings of a sick or dying child can feel loss through:
- Absence of a parent or of a sibling due to the treatment or death of the sibling
- Interruption to routine caused by the treatment or death of a sibling
- Grief and stress of their parents or other family members
- Make time each day to hold, rock, and cuddle the sibling.
- Keep the child on a schedule as much as possible.
- Play a recording of parents reading a story or talking to the sibling in the parent's absence.
3- to 5-year-olds have response that are shaped by the way they see the world:
- They are magical thinkers and don't understand the difference between fantasy and reality. They may believe death is temporary or reversible.
- They are ego-centric and may believe the death of a sibling is punishment for something they did.
Tips for helping 3- to 5-year-old siblings cope with their feelings about a sick or dying child:
- Use concrete language, such as "die," not euphemisms such as "sleep."
- At this age a child can understand "Your brother's body stopped working"; "Your sister stopped breathing."
- Make it clear to siblings that the death is not a consequence of something they did.
6- to 9-year-olds have a more evolved sense of dying:
- They associate death with old age. They may not understand that they or a sibling could die.
- They know more about how the body works, so they may have specific questions about how someone dies. A sibling may think that a bruise on their own body indicates the same illness a brother or sister had.
- They may associate death with frightening images from cartoons, such as ghosts and spirits.
Tips for helping 6- to 9-year-old siblings understand their feelings about a sick or dying child:
- Use visual aids they can understand. Child life specialists have used marshmallows to explain tumor growth or described leukemia as a thickening of the blood.
- Make specific references to organs like heart and lungs.
- Make clear that death is not like the images in cartoons.
- Make clear to siblings that what happened to a brother or sister doesn't happen to everyone.
10- to 12-year-olds understand the permanence of death:
- They know that death is final and will happen to everyone including themselves.
- They understand that their own death or the death of a sibling will cause sadness in others. A sick child at this age may say they have to hold on for their parents' sake.
- They will respond more like adults with anger, sadness, and fear.
- They will have increasingly more specific questions about the illness and about death.
- They can find information on their own.
Tips for helping 10- to 12-year-old siblings of a sick or dying child:
- Find opportunities for constructive venting of feelings, such as sibling groups at hospitals and art or play therapies.
- Provide as much specific, factual information as possible.
- Keep siblings in regular routines as much as possible. It may not seem like long, but professionals advise that children under age 12 not miss more than a week of school after a sibling has died. But they acknowledge that each child has unique needs.
- After a death, make sure siblings still have a clear role in the family, but don't let them take on a parent's role.
Teenagers understand death with a more personal and long-term view:
- They may want to talk to their friends more than to their parents.
- They understand more on their own, so adults are validating information rather than giving it.
- They understand their lives in the context of others', so they will want to leave a legacy and plan for their own deaths.
- They can find information on their own.
Tips for helping teenage siblings of a sick or dying child:
- Let friends and boyfriends or girlfriends be involved. Palliative care teams encourage friends to visit and extend their support services to them.
- Don't be hurt when teenagers seek the support of their friends more than their parents.
- As teenagers' grief is more like that of adults, teenagers who lose a sibling may need more time off of school and regular activities.
Children can be included in discussions about death and dying, but parents need not do it on their own. Palliative care professionals can help parents decide whether, when, and how to open this difficult conversation.