Coping When Your Child Is Near the End of Life

Making a Care Plan

When a child has a serious illness, the time may come when a cure isn't possible or when treatment to help the child live longer isn't working. Hearing that a child will die causes feelings of deep pain, loss, and helplessness in parents—and in other loved ones, such as grandparents. Even as parents try to cope with these feelings, they have to make choices about what the rest of their child's life will be like.

You might have questions like:

• How can I make sure that my child is not in pain and is comfortable?
• How can my child have as normal a life as possible near the end of life?
• Should I tell my child that they will die?
• Can my child stay at home? Or do they need to be in the hospital?

Your family and your child's doctor can work together to create a plan of care that will give your child the best quality of life. Your child can still receive medicines or other treatments to manage pain, anxiety, or other symptoms. Families also can have spiritual and grief counseling.

Hospitals usually have social workers and child life specialists who can help you organize the details of your child's care—in and out of the hospital. They can also help address any emotional needs for you and your child.

Hospice is available for care at home. It provides medical care, emotional support, and spiritual resources for people who are not likely to live for more than 6 months. Your child may be able to go home from the hospital with hospice care. If care at home isn't possible, a hospice center for children may be available in your area.

Ask the doctor if your child can spend the remaining time at home. Many families want to take their child home. That's where their child can be most comfortable, surrounded by family members, pets, toys, and books.

Other families may choose to have their child cared for in the hospital or in a hospice center. They may not be able to care for the child at home for many reasons. They may not have enough room for medical equipment. Or they may not be physically able to care for their child.

Getting Support

Knowing that your child is going to die is devastating for parents and other loved ones. The news can be overwhelming. After all, children are expected to outlive their parents. But you can find support and comfort from family and friends, doctors, nurses, counselors, and social workers.

Expect that you will have strong feelings. How you react may surprise you. There is no right or wrong way to feel. Some parents cry a lot, are angry, and express their emotions openly. Other parents may be quiet and don't cry around other people.

If you want to talk, seek out close family members, friends, or spiritual advisers. You also can choose to have counseling. Your child's doctor or another health professional can provide the names of grief counselors and support groups. A counselor also can help the ill child and your child's siblings. You might try to approach a member of your child's health care team. Talk to the person you feel most comfortable with. It could be a doctor, but it may be a child-life specialist, a nurse, or a social worker.

Ask for help from family and friends, or have someone else ask for you. Your loved ones may want to do something to show their support. They can bring meals or clean your house. They can help give out information to others about your child's condition, so you don't have to keep telling other people what's happening. Websites from groups like CaringBridge and Lotsa Helping Hands offer ways others can help you, including setting up a calendar to schedule delivery of meals and other help.

Seek respite care. Although you may feel that you need to be with your child all the time, caring for a seriously ill person can be hard physically and emotionally. The end of life can be a marathon, not a sprint. You need to take breaks to rest and gather your physical and emotional strength. Your child needs it too. You can't give your best to your child if you're exhausted.

Respite care is a brief time away from daily caregiving. During a break, you may want to spend time with your partner, with your other children, or alone. Other caregivers can step in to tend to your child's needs during that time. If a formal respite care program isn't available in your area, see if a family member or friend can take care of your child for a few hours.