Supporting Children at End of Life

Almost no one feels ready to talk to their child about death – nevertheless that child’s own. Parents and caregivers often worry discussing dying will be seen as losing hope or cause their child to worsen or give up. However, talking about death can help your child both physically and emotionally. They’ll be able to get their questions answered by a trustworthy source, share their fears, and better prepare for the days ahead. Conversations about death can also help bring your family closer together as everyone learns your child’s wishes and desires for the final days of their life. That doesn’t mean it isn’t hard on you both.

Your child likely is nervous too. No matter their age, children can usually feel their health worsening and pick up on changes in the emotions and behaviors of others around them. However, many hesitate to bring it up. Your child may worry that talking about their death will upset you or fear you will be mad at them for “giving up”. For this reason, it is often best to start the conversation yourself.

Talking about a child’s death obviously is difficult, and everyone reacts differently. However, you may feel better able to care for your child and a sense of relief once you start. Having conversations with your child about their death also allows them to say goodbye and take part in memory making activities (link memory making) which you and your family will cherish in the years to come.

Talking to Your Child about Death

• For many, beginning a conversation about death with their child is difficult. Choose a time when your child feels comfortable and safe, and seems to be open to talk. Then start by asking what your child already knows and wants to know about what is going on.
• When sharing, be open and honest, and allow time for them to ask questions when you are done. It’s okay to say, “I don’t know.” So much about death is unknown and many questions are unanswerable. However, you can always ask your child what they think and share your own beliefs as well. For medical questions, reach out to your child’s doctor, child life specialist or social worker for help.
• The way information is shared, and the questions children ask, will vary based on their age and developmental stage. Use your best judgement and select words and explanations your child will connect with and understand. For more information on grief and children’s understanding of death by age, see the Anticipatory Grief section.
• Use concrete language, especially with younger children. Avoid phrases such as going to sleep, passing away, or resting, as these can confuse or even frighten your child. Simple and accurate words (i.e. death / dying) are best.
• Follow your child’s lead, listen, and be aware of their reactions and yours. Don’t pressure them to share their thoughts but create space so that they know if they want to talk about how they are feeling or ask questions, they can.
• Remind your child that the their illness and impending death is not their or anyone else’s fault. Nor is it a punishment for something they did wrong. Sometimes there are no explanations for why bad things occur.
• You can encourage sharing and expression of feelings by modeling it yourself. It is okay to cry in front of your child and explain why you are sad. This shows they can do the same and demonstrates healthy coping. If you have very strong emotional reactions (for example, need to sob uncontrollably), find some support for yourself away from your child as well.
• Remind your child (and yourself) that it is okay to be sad and that there is no one right way to grieve. Everyone experiences grief differently, and it does not always follow a certain pattern or timeline.
• Some children find it helpful to hear good news with the bad. For example, if your child is stopping treatment and returning home, you might mention they will not have to be at the hospital as often and can spend more time with people they love. It can also be reassuring to hear about the care they will receive to make them comfortable in the time they have left.
• It can be helpful to think about these conversations as ongoing. Some children might not want a lot of information at once, while others might want all of it immediately. It is okay to pause if you feel like your child needs a break to process and come back to it another time. It is also important to check in regularly as time goes on.
• Remind your child that you love them and will always be there to support them. Some children also want to be assured that everyone will remember them after they are gone.
• Consider sharing with your child that you have other adults to help you with your feelings, and that they are not responsible for your emotions. Let them know you will be alright no matter what happens or what they share. Many children worry about their parents, and some may hide their feelings as a result.
• Some people find it easier to have these conversations while doing an activity. Ideas include coloring and other forms of art, building or playing with blocks, playing with silly putty and other fidget toys or working on a puzzle. Using books, tv shows or movies that talk about death can also help. For a list of ideas, check out Resources for Children at End of Life.
• Recognize your own emotions and limits. If you feel you might need or want some support in having these conversations, ask a professional from your medical or hospice team, a child life specialist, or a psychologist or social worker for guidance. Some caregivers also find it helpful to have a close family member or friend there to support them. Finally, you may want to set aside some alone time before or after difficult conversations to process your emotions.
• Your child may wish to speak with an adult in addition to, or in place of, a parent or caregiver. Friends and family, medical professionals, coaches, counselors, and religious figures are all good options. Really, it only matters that they are trustworthy, and your child is comfortable.

You know your child best and have likely had many difficult conversations throughout the treatment process. But discussing a child’s own death is a different thing all together. To avoid misunderstandings and provide support, the tone and words you use are important. Below are some phrases that may help. Be sure to adjust them so they sound like you and are relatable to your child.

• Getting started: “Some things can be hard to talk about, but we want you to know you can always talk to us about anything. We want to know what you are thinking and feeling. And want you to know that we will always be honest.”
• Assessing Understanding and Knowledge: “How do you feel your treatments are going?” “What worries do you have?” “What do you think happens after you die?”
• Explaining: “Your doctors don’t think the treatments are working. They don’t have any other medicines to treat your illness.” or “Your doctors don’t think your body will be able to get better.” It can also be helpful to discuss death from a biological standpoint, for example, “When someone dies, their body no longer works. They stop breathing and can’t feel pain any longer.”Some families find stories useful for explaining death to their child, followed by a discussion, asking “What did you think about what we read/watched?”.Finally, assure your child it is not their fault. “Sometimes there are machines or medicines to help a person to get better. Sometimes, however, there is nothing that works. The doctors cannot make them better. This is the case for you, but it is not your fault. There is nothing you said or did to make this happen.”
• Religious/Spiritual Beliefs: Some families find it helpful to include their cultural. religious or spiritual beliefs about death when having these conversations. Religious leaders can also provide help in having these conversations and/or direct support to your child. Even if you do not have your own specific beliefs, you might want to include comforting statements that help your child feel safe, such as, “You won’t be in pain anymore.”
• Inviting Questions: “What questions do you have?” “What are your worries?” “Do you have any other questions right now?”
  It is also important to assure your child they can come back with questions later. “If you ever have any questions, we are here to support you. If you’d like to talk to your doctors or someone else that can help, we can arrange that as well.”
• Modeling and Expressing Emotions: “We know this might be difficult, scary, and emotional to hear. It’s okay to feel whatever you are feeling, and we want you to know you can talk to us about it.”
• Addressing Your Child’s Worries About the Family: “We love you, so we are very sad. But we will take care of each other.” “We will always think about you.” “We will be okay.”
• Addressing your child’s worries about pain or the dying process: “There are medicines the doctors will give you to help keep you as comfortable as possible.” “We are going to do everything we can to help and will stay with you throughout this process.”
• Supporting & Reassuring: “We are here to support you.” “This is not your fault, you didn’t do anything to cause this.” “We love you and will be here for you.”

Including your child in end of life decisions can be an important part of their (and your) grieving and coping process. Many children feel better knowing there is a plan and having some control over what happens in the final days of their life. You too may feel better knowing you are making decisions that honor your child’s wishes, both before and after they are gone.

However, parents and caregivers often struggle to know how exactly to include their child in end of life decisions and begin this important, if difficult, talk. Some avoid it because they don’t want to upset their child, or worry that they will not understand as they are too young. And of course, if their wishes differ from your own, it can make things even harder. But most find talking to their child about end of life decisions to be incredibly important and healing overall.

The amount your child can be involved in end of life decision-making will vary based on their age and understanding of what is happening. Having a say is often very important to teens and young adults. But even very young children think about their death. Many simply do not talk about it because they are trying to protect those they love. For this reason, your child might need permission or an invitation to open up.

Your medical providers and palliative care team can help you figure how to best involve your child. Several resources, such as My Wishes (children) or Voicing My Choices (teens and young adult), can also guide you. The types of decisions you and your child can make together include who your child wants to care for them, the kinds of treatments they want to receive and avoid, how they want to be treated by others, and what they want their loved ones to know. You can also use advice from the Talking to Your Child About Death section while having these discussions.

Memory making activities are also a great way to involve your child in end of life care and give them some sense of control. It’s common for kids to worry about how their family will cope without them, or that they will be forgotten once they are gone. Memory making activities help them feel they are leaving a legacy behind and will always be important. These activities can also be a good way for the entire family to create positive memories together during this time. Examples of memory making activities include creating art, picking out special items for siblings and recording stories and memories they want others to recall. More ideas can also be found within the sibling and caregiver bereavement sections.

Finally, some children find it helpful to have a say in their end of life ceremony or what happens to their belongings. They may have special wishes regarding the music, decorations, speakers, dress code or location of memorial services. They might also want to choose their own clothes or special items to be buried/cremated with. Others do not wish to think or talk about it at all. As with most things, it’s best to follow your child’s lead and keep communication open should they change their mind.

You’re the expert on your child and have been there for them throughout their life. The ways you’ve found to help them feel better will continue to be valuable as their health declines. However, some adaptions may need to be made. Now, more than ever, open communication and emotional support are incredibly important as well.

Below are a few ways you can support your child in their final days. You can also view our Children at End of Life resources (link) for books, toolkits and websites to help.

• While it can be tempting to let everything go, maintaining structure and routines can help your child cope during end of life, especially if they are younger. Just like during treatment, a family’s routines provide a sense of consistency and normalcy in a situation that is unpredictable and often out of anyone’s control.
• Provide your child with a sense of emotional safety by allowing them to openly recognize and express their emotions, ask questions, and share their fears and concerns. Be sure to assure them you will continue to be there throughout the entire dying process.
• When your child talks about how they are feeling, take the time to truly listen. Refrain from trying to fix or problem solve. Sometimes children just need someone to hear them without judgement and provide love and support.
• Children copy what they see from their parents and trusted adults. By recognizing, expressing, and managing your own emotions in front of your child, you can encourage them to share and teach healthy ways for them to cope with their own.
• Journaling, drawing and reading books about death and feelings (link resources) can all help children cope. You can also continue using stress reducing activities that have worked before. Additional ideas can be found in the Children section (link). You can also speak with child life specialists, social workers and other members of your child’s medical team for more.
• Find ways to give your child a sense of control and independence, especially if they are a teen or young adult. The physical changes that occur before death often make them very dependent. This can lead to feelings of helplessness, frustration, anger, depression and more. (link signs anticipatory grief) The changes in their abilities can also serve as a constant reminder of all that will be lost. Allow them to voice their frustrations and feelings without judgement.
• Be sure to provide time for your child to just be a kid and have fun. Play favorite games together and do other activities, as possible, that they enjoy. Many families also like to find ways to make their final days memorable and do something special they’ve never done before.
• If you have other children, make time for them to spend together. Some parents try to keep children apart, fearing it’ll be too hard or overwhelming for one or both. However, this can send the wrong message, and they may think one of them did something wrong. Being together will allow them to make the most of the time they have left. It can also provide an opportunity for them to say goodbye and begin to find closure. Visit the Grieving Siblings section for more ideas on how your well children can be involved.
• Some children need “permission” to die and let go. Many fear their death will cause too much pain and cling to life even while they suffer. Sometimes, though, parents are not the best person to do this and find it too hard. In this case, another trusted adult or family member can help. Use your best judgement on what your child needs and is appropriate.

It is expected for a child to struggle with both the physical and emotional parts of dying. They may also seem to be doing well, only to suddenly get worse. (More on typical reactions of dying children can be found here [link anticipatory grief]) And there is plenty that you and your family can do to help. But some children also need support from a trained professional.

Some signs your child may benefit from additional support as they are coping with their terminal illness and dying include:

• Significant changes in mood or behavior
• Withdrawing or isolating
• Becoming easily overwhelmed
• Expressing they are having a difficult time or desire additional support
• Threatening or engaging in self-harm
• You are having difficulty supporting your child due to your own emotions

If your child is experiencing any of these symptoms, or if distressing emotions go on for weeks and/or interfere with everyday life, it may be time to reach out for help. Talk to your child’s medical team, another trusted medical provider and/or your insurance company for referrals to a psychologist, psychiatrist, or other mental health provider. Support groups and religious figures can also offer supplemental support during this difficult time.

Below are a few suggested books, website and toolkits to help your child as they near end of life. You can also find more resources to help children cope at any stage in their treatment process on our Resources page.

Books

• Gentle Willow: Story for Children about Dying by Joyce C. Mills
• On the Wings of a Butterfly: A Story about Life and Death by Marilyn J. Maple
• The Purple Balloon by Chris Raschka
• Beyond the Rainbow: A Workbook for Children in the Advanced Stages of a Very Serious Illness
• The Gift of Gerbert’s Feathers by Meaghann Weaver, MD MPH and Lori Wiener, PhD DCSW
• When Something Terrible Happens: Children Can Learn to Cope with Grief by Marge Heegard
• The Fall of Freddie the Leaf: A Story of Life for All Ages by Leo Buscaglia
• The Invisible String by Patrice Karst and Geoff Stevenson
• Invisible String Workbook by Patrice Karst & Dana Wyss

Websites

• Kids Wish Network – Kids Klub

Toolkits

• My Wishes (children) or Voicing My Choices (Teens and Young Adults)
• For Caregivers of a Child with Serious Illness – Conversation Starter Guide