Caring for a Terminally Ill Child: A Guide for Parents

Key Messages

• If your child's cancer cannot be cured, treatment transitions to managing your child's symptoms in a comfortable setting.
• Continue to work with your child's cancer care team to understand how your child's needs will change.
• Talking with your child about death and dying is extremely difficult; how and when you have these discussions is a personal decision.
• Take the time to know what to expect and seek support during this distressing time

Despite everyone's best efforts, it may not be possible for doctors to cure your child's cancer. However, incurable does not mean untreatable. Children with advanced cancer, also called end-stage or terminal cancer, can sometimes live for many months or even years with their cancer. It is important to have open and honest conversations with your child's doctor and health care team to express your family's feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families.

During this time, treatment should focus on controlling the cancer when possible and managing symptoms so the child can enjoy a high quality of life for as long as possible. Parents play a crucial role in helping their child continue to live a fulfilling and comfortable life, as well as helping their child prepare for a peaceful and dignified death.

Palliative care and hospice care

Palliative care is treatment to help a child with cancer be as comfortable as possible and live well at every stage of their disease. Palliative care focuses on treating pain and all other physical symptoms caused by cancer or its treatment. In addition, palliative care addresses the psychological, social, and spiritual needs of the child and family. Palliative care is not an alternative to disease-directed treatment (treatment to eliminate the disease), and children with cancer often receive palliative care and disease-directed treatment at the same time.

Palliative care should begin as early as possible in the cancer treatment process and continue throughout the course of cancer. Because children with advanced cancer can live for months or years, treatment that maintains a high quality of life is especially important. Palliative care can help ensure that children with advanced cancer continue to live comfortably with their cancer and have a chance to enjoy just being a child.

Hospice care focuses on quality of life during the last months of life. Often, hospice care is limited to the last six months of life and excludes patients who are still receiving disease-directed treatment. Because many children with advanced cancer continue to receive disease-specific treatment throughout the course of their illness, they may not be eligible for hospice care, but they will continue to receive palliative care services. Both palliative and hospice services can be provided at home, in a hospital, or in a private care facility.

Many families want their children to spend the majority of their remaining time in the comfort of their own home surrounded by family, pets, and special belongings. Palliative care enables most children to remain comfortably at home for as long as possible, returning to the hospital to receive necessary treatments, for example. However, some children and families are reassured by the hospital environment and find comfort in the close relationships they may have developed with the hospital staff and other children. With this in mind, families may choose to receive care at the hospital instead of at home. In addition, some families wish to be in the hospital as the end of life approaches, whereas others prefer to be at home. You may wish to talk with your child's medical team about the setting that feels best to you, your child, and your whole family.

The need to talk with your child

Talking with your child about a serious illness, and especially about his or her own death, is probably the most difficult step in caring for a child with advanced cancer. How and when you talk with your child about death and dying is a personal decision influenced by many factors, including the expected course of your child's cancer and your opinion about what your child should be told. If your child's cancer is advancing slowly, you may have more time to decide when and what to tell your child. If your child's cancer develops more rapidly, you may decide to talk with your child right away. Nobody knows your child better than you; you are the best judge of what to tell your child and when to say it.

Many parents believe they can protect their child by not telling him or her the truth. However, most children with advanced cancer already know or suspect that they are dying. They sense the truth from listening to and watching the adults around them and from experiencing the changes inside their body. It is important to be honest and open; allow your child to discuss his or her fears and questions. Your child will feel less anxious and alone if he or she knows what to expect and can count on you for support and love. If your child senses he or she cannot talk with you, he or she may feel isolated, lonely, and more afraid. Not talking about your child's death also prevents both you and your child from bringing closure to his or her life by sharing memories, expressing love, and saying good-bye.

You may find some of the questions your child asks about death upsetting. Knowing how your child views death will help you understand and respond to these questions. A major factor influencing your child's understanding of death is his or her developmental level. Preschool-aged children are too young to understand the concept of death, but they do fear separation. They need extra reassurance with frequent touches and hugs. School-aged children are just beginning to understand death, but their understanding is not well developed. They may view death as a separation or as a person, such as a ghost or an angel. Teenagers have a more adult understanding of death, but this understanding directly challenges their feelings of immortality and their growing need for independence.

Your child's understanding of death is also influenced by cultural norms, your family's religious beliefs, and things he or she has seen on television or read in books. Different cultures and religions have different beliefs about the meaning of death and what happens after death. These beliefs influence how your child understands and feels about death and dying. For example, a belief that you and your child will see each other again after death can be comforting.

How to talk with your child about death

Although talking about death and dying is always difficult, it can be more difficult for some families and individuals than for others. Your family dynamics and communication style influence this conversation. For example, some families have a more open communication style and are used to talking about difficult subjects and expressing uncomfortable emotions. These families may have a less difficult time talking about death than families who are not as used to talking openly.

In addition to advice from social workers, nurses, child life psychologists, or other specialists, the following tips may be helpful:

• Ask open-ended questions that give your child the chance to answer in his or her own way. For example, ask, "How did you feel when Grandma died?" rather than a "yes-no" question, such as "Were you sad when Grandma died?"
• Look for hidden meanings in your child's questions or comments. For example, if your child asks, "What do you think happened to Grandma after she died?" your child may also be asking what will happen to him or her.
• Look for "teachable moments"—everyday moments that are opportunities talk about what your child is thinking and feeling. Teachable moments could be an animal dying or the illness of a character in a book or a movie.
• Younger children may find it easier to communicate through play or art. Your child may find it easier to talk about the feelings of his or her sick teddy bear or a child in a picture.
• Look for signals from your child that he or she is ready to talk, such as asking you questions or bringing up the subject of death, even if it is the death of an animal or an imaginary person.
• Look for signals that your child is done talking for the moment, such as changing the subject, looking away, fidgeting, or playing with toys rather than listening to you. It is important to respect your child's need to drop the conversation.

The following are additional points to keep in mind when talking with your child about death:

• Use simple, direct language that your child can understand. Use the words death and dying rather than misleading or confusing terms, such as passing away or going to sleep.
• Have many conversations with your child, and let him or her know that you or someone else is always available to talk. Encourage, but don't force your child to express emotions—positive and negative.
• Reassure your child that he or she will not be alone. It is critical that children know their parents will be with them when they die and that parental love and support will continue.
• Reassure your child that after death, any pain and suffering go away and never come back.
• Children need to know that they made a difference in the lives of others. Remind your child of the special things he or she has done and the teachers, friends, nurses, and others who will always remember him or her. Reassure him or her that your special feelings and love will continue forever.
• Discuss your family's religious or spiritual beliefs about death and what happens after death.
• Many dying children feel guilty for leaving their parents and worry about what will happen to their family without them. You may need to give your child "permission" to die so he or she can do so peacefully and without guilt.

Meeting your child's needs

Although parents often feel powerless caring for a child with advanced cancer, there are many things you can do to help meet your child's psychosocial and physical needs. As your child's cancer progresses, his or her needs will change. Paying close attention to your child's behavior will help you adjust to these changing needs. It is important to allow your child to continue just being a child for as long as possible.

• Give your child time to play and engage in other age-appropriate activities, such as watching television, reading, or playing outside.
• Encourage your child to continue attending school, even if he or she cannot attend full time. If your child must miss school for a long time, ask the teacher to have the class write letters, draw pictures, or make videotapes.
• Encourage your child to maintain friendships and other meaningful relationships.
• Encourage your child to continue setting goals. Short-term goals, such learning to read or taking a special trip, help children gain a sense of achievement and give meaning to their lives.
• Continue to set limits on your child's behavior and practice normal parenting. Without limits, your child will feel overwhelmed and out of control.
• Advocate for your child to help ensure that pain and other symptoms are quickly and effectively treated.

As your child's cancer progresses and death approaches, your child will have additional needs.

• Give your child as much privacy and independence as possible, including personal care, decision-making, and the desire to be alone.
• Encourage your child's end-of-life wishes, such as giving away special belongings or writing letters to friends.
• Give your child time to say good-bye to family, friends, teachers, and other special people. This can be done in person, with letters, or through a parent.
• Stick to comfortable routines. If possible, try to keep the same caregivers.
• Continue to make caregivers and medical staff aware of your child's physical needs, especially the need for pain management.
• Without using graphic or frightening descriptions, talk about the physical symptoms and changes your child can expect as his or her cancer progresses. Knowing what to expect will make him or her less anxious and afraid.

Help for parents

Parents are not supposed to outlive their children, and nothing can erase the anguish and distress that parents experience caring for a child with advanced cancer. The following are suggestions to help parents cope:

• It is normal to experience emotions such as anger, guilt, and frustration. Talk with your spouse, family members, or friends about your feelings and fears.
• Seek support from a professional grief counselor or attend a support group with other parents. The hospital staff can help you locate a counselor or support group.
• The dual role of parent and caregiver can be physically and emotionally exhausting. Take advantage of offers for help from family and friends. Use respite care services to allow yourself a break from caregiving. Learn more about taking care of yourself as a caregiver.
• Ask the medical staff to go over symptoms that occur close to death, such as skin and respiratory changes. Knowing what to expect will help you feel more prepared and enable you to be with your child when death occurs.
• Consider making funeral arrangements in advance, as well as other plans such as whether to have an advance directive or an autopsy. When you make these plans in advance, you can spend time with your child and avoid making decisions in a crisis.
• Take time to just be with your child and tell him or her how much you love him or her. Some parents and children, as well as siblings, find it helpful to look through photo albums and share stories and memories of times spent together.

More Information

How a Child Understands Cancer

Grieving the Loss of a Child

Advanced Cancer Care Planning

End-of-Life Care

Additional Resources

National Cancer Institute: When the Cancer Cannot Be Cured

Hospice Net: Talking to Children About Death and Children's Understanding of Death

Aging With Dignity: Voicing My Choices