What decisions need to be made as your child's health gets worse?
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 is not 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.
How can you make sure that your child is not in pain and is comfortable?
How can your child have as normal a life as possible near the end of life?
Should you tell your child that he or she will die?
Can your child stay at home? Or does he or she need to be in the hospital?
You will be helping to coordinate your child's care among doctors, counselors, and other health professionals. If you have other children, they will need help to cope with the coming loss of their brother or sister.
Setting up a care plan
Deciding to not have treatment—or to stop treatment—to try to cure an illness doesn't mean that your child will have no treatment. 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.
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 his or her remaining time at home. Many families want to take their child home, where he or she can be most comfortable and be around family members, pets, and 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.
Talking openly with health professionals
It can be hard for parents and doctors to be honest with each other about a child's condition and when to change treatment from curing an illness to improving the time a child has left. Sometimes doctors and parents avoid such conversations to spare themselves and each other pain. This mutual pretense, as it's called, can get in the way of agreeing on a treatment plan.1
Try to be honest with your child's doctor about your feelings and concerns about your child's care. It's common to feel guilty or worry that you are "giving up" on your child if you stop trying to cure the illness. Health professionals also may struggle with feeling that they have failed when a child can't be cured. But choosing not to put your child through treatments that aren't working and that have bad side effects is not giving up. It's allowing your child to enjoy the time he or she has left with you and other loved ones.
You should expect your doctor to talk openly and sensitively with you and your child. He or she can provide information, answer questions, and advise you. But the decisions are yours.
How can you get support to cope?
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 his or her 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 or a nurse.
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 is happening. Websites such as Caring Bridge (www.caringbridge.org) and Lotsa Helping Hands (www.lotsahelpinghands.com) 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.
What can you tell your child about his or her condition?
Parents want to protect their child from fear and worry. So you may feel that you shouldn't tell your child that he or she will not get better. But many children who have a serious illness know they are very sick and won't get better.
Some children want to talk about death, spiritual matters, and things they still want to do in their lives. But they may be afraid to say these things because they don't want their parents to feel sad. Let your child know that it's okay to talk about his or her feelings. Asking open-ended questions (rather than yes-or-no questions) can help your child feel safe to talk.
What to say to your child may depend on your child's age and maturity. Even many younger children can understand the idea of death as permanent. You may want to talk to your child alone. Some find that having the child's doctor or a spiritual adviser there can help.
Talking to siblings
A child's siblings also need attention. They may feel very sad and scared knowing that they will lose their brother or sister. Some siblings may feel guilty that they are healthy. They may fear that they also might get the illness. Try to spend some time alone with each sibling. Reassure them that they did nothing wrong and that you are glad they are healthy.
Ablin AR (2011). Caring for children dying from chronic disease. In CD Rudolph et al., eds., Rudolph's Pediatrics, 22nd ed., p. 495. New York: McGraw-Hill.
How this information was developed to help you make better health decisions.