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Talking With Children at the End of Life

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If you have children in your life, you face the added challenge of figuring out how and when to tell them that you’re not going to recover. If you’ve stopped anti-cancer treatments such as chemotherapy, there may be a period when you start to look better and feel better. In a child’s mind, that can turn into “Well, Mom/Grandmom looks better so she must be getting better.” Try to take advantage of this time to enjoy your children and make more lasting memories for them. Maybe take a special vacation or day trips — whatever your time and budget allow. At some point, though, it’s important to let them know that you will be leaving them.

There is an understandable impulse to protect children from bad news. But trying to shield them from the reality will only make things more difficult. The worst way for children to learn bad news is to overhear it or to sense that something is wrong but never be told the truth. Start the conversation early enough so that you can talk about it over time and they can process the information and ask questions. Keep in mind that you don’t have to limit this to a single conversation. You can introduce the topic gradually, perhaps first letting them know that the treatments aren’t working the way your doctors hoped they would. You can explain that you’re not going to get better, but that the time you have together now is what matters. The age of the child (whether it’s your own child, a grandchild, or a niece or nephew) will shape the conversation. No matter how old the child is, being honest at a level they can understand is key.

Some other advice you may find helpful:

  • Consider introducing age-appropriate books about dying. With younger children especially, simple stories can help them understand what is going to happen. Ask a children’s or school librarian for suggestions.
  • Tell your children how they will be cared for after you’re gone. Tell them exactly what the plan is for their futures. If you’re partnered, let them know who will help your partner care for them. If you’re a single parent, let them know who will step in to take care of them and where they will live. If there are other adults you’ve asked to be a presence in their lives, tell your children who they are.
  • Keep routines as normal as possible. Encourage your children to stick to their routines now — school, play, friends, and activities — and tell them they can continue those routines after you’re gone. Make sure they know you want them to continue their daily schedules.
  • Spend time reminiscing. Look through old photos and relive the memories you’ve built as a family. Make sure your kids know where to find those photos in the future, too, whether they’re in books or on your phone, tablet, or computer. Make them a photo book if you have the time, or present them with a treasured photo (or photos) of the two of you.
  • Spend time with each child separately. This can be a challenge, but it doesn’t have to be a huge time commitment. Watch a movie or favorite TV show together. Draw or color or paint. Sit and have a snack. Just talk. Go out for lunch or a treat. When you have the energy, use the time to focus on them.
  • Help children find an outlet for their emotions. There are many options available for children in families facing the loss of a parent: support groups, summer camps, special programs just for children and teens in the same situation. Hospitals often have professional therapists, social workers, and counselors who can help when children lose a parent, grandparent, or other close relative. If there is someone outside the home your child trusts, such as a school counselor or coach or teacher, ask that person to play the role of sounding board. Children need an outlet for their feelings.
  • Let their schools and other activity leaders (coaches, instructors) know what’s going on. Your child may act out in unexpected ways or their typical behavior may change — they may seem angry, sad, or withdrawn. The adults in their lives should know what is going on at home. Certainly these adults don’t have to mention your diagnosis to your child; in fact, some kids like having spaces in their lives that are free of talk about cancer. Over time, though, some of these adults could become a key source of support.
  • If your child is old enough and seems interested, bring them to a doctor’s appointment with you. Your child or children might find it reassuring to meet with your care team and hear them talk about your situation. It could take some of the mystery out of what’s happening and help them see that you are in good hands. They also might find it helpful to be able to ask some questions of the doctor themselves.
  • Consider writing letters or making audio or video recordings that will make you an ongoing presence in your children’s lives. Some people time them to special occasions in the future, such as graduations, birthdays, weddings, or other milestones. Others create albums or keepsake books or video diaries. Entrust a loved one with giving these items to your children over time.
  • If your children are old enough, let them choose how much (or how little) they want to be there at the very end. There will come a time when you are actively dying and the end is drawing near. If you’re at home, of course, your children will be there, too. If you’re in a hospice care setting, they likely will come to visit you, as they would if you were in the hospital. You and your partner and/or other relatives can work together to figure out what your children can handle. If your child wants to be with you during this time, that’s fine. If it’s too upsetting and they pull away, that's fine, too. In either case, they should stick to their daily routines as much as possible. Say your goodbyes at the time you think works best for them.
  • With young children, avoid comparing dying to sleep. Dying is final; sleep is not. They need to know that you’re not coming back. They also might become fearful of sleep if it’s associated with dying.

For more information and resources, you can visit the Parenting at a Challenging Time (PACT) Program at the Massachusetts General Hospital Cancer Center.

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