Everyone should try to talk about their feelings and fears about the illness. Open discussion also allows the sharing of anxieties and the accomplishment of important goals.
Penny, a 16-year-old girl with an unresponsive form of leukemia, was doing poorly on her therapy. Her friend, Lindy, a 19-year-old, was dying next door of ovarian cancer. Lindy was in a hospice program - her symptoms of severe vomiting and pain had been brought under control. She was making a video for her friends and family and asked Penny to come in for a hug goodbye. Lindy died an hour later, having left a loving legacy. Penny, though, was never allowed to express her views. Her family could not bear to contemplate her death. She died a few weeks later in the ICU after 6 hours of aggressive attempts to revive her.
Talking about death does not make it happen, though many people are afraid it may. Talking about death allows the child to complete important emotional tasks.
Children are sensitive to the needs of their parents, too. They often feel guilty about financial pressures, marital problems, or causing fear and pain in their families. They may feel that they are bad for having become ill, or that the illness is a deserved punishment for bad things they have done. You should talk about your child's fears - and soothe her. Children can be very resilient, and even the child who is ill often has a lot of strength to share.
What if your child says, "Daddy, am I going to die?" You first reaction may be to answer, "Of course not!" But this answer may shake his faith in you. Your child can be very frightened if he feels you are hiding the truth. "Why do you ask?" is an answer that lets your child talk about his fears and perceptions. The child may have a new symptom, may have heard of a hospital friend dying, or may just be testing your willingness to talk. Children as young as three years old are often aware that they are dying without having been told. They can often predict their deaths more accurately than their doctors and families can.
Young children have spiritual lives and have important questions to ask. "Why is God doing this? Where am I going? Will I be happy and comfortable after I die?" These questions are best addressed by you, the parents. Answers consistent with your family's beliefs are the most reassuring to your child. Not knowing the answers is okay. Letting your child see your pain is okay. You can comfort each other in your uncertainties and in your love for each other. Chaplains can often be of help, though it is important for the parents to talk with them first.
With a few exceptions, the law does not recognize people under the age of 18 as being able to make their own decisions. While they may be immature compared to their peers in many ways, even very young, chronically ill children become especially mature regarding their own health. Parents often see this and feel it. Doctors may not understand the need to consult the child regarding his or her opinion on further treatment. Yet, ask a child-life specialist or a pediatric social worker, and you'll find that the best course includes asking the child. Your child knows what hurts and what she feels is worth continuing to fight for. Deciding medical care for her without her input, even when she is very young, ignores the fact that sometimes continued attempts to cure becomes doing To instead of doing For. Your child can help you have a better appreciation of her interpretation of what is happening and her suffering. Do not expect your child to make his own decisions about medical treatment either. He may not understand the long-term positive effects of the treatment. Decisions are best made with mutual respect and collaboration between child, parent, and medical team.
When one 9-year-old boy correctly perceived he was dying, his needs were such that he could have gone home. His doctors, however, thought there might still be a slim chance. The child underwent all kinds of tests and treatments. His mother kept asking whether it wasn't time to let him be, but her questions somehow never got answered. The boy was never asked what was important to him. Did he want to go home to his bed or see his classmates one last time? Did he have a special movie he wanted to see? Was there a special friend or relative? He died five days later, in intensive care, monitors still beeping.
Many families want to know what their child's chances of survival are. When they ask their doctors, the answer may be, "Most children with cancer live. But I don't know for your child. It's either life or death - 100% either way." Your response to this should be, "I understand what you are saying, but it is not enough information to allow my child and our family to make the best possible decisions. Can you give me a better idea?"
For children with cystic fibrosis or other very chronic illnesses, the answer may be, "You never know, you have pulled out so many times before." Yet, when your child is in the hospital more frequently and for longer periods of time, with repeated episodes on the ventilator or in intensive care, chances are getting slimmer. Begin to ask your child, when he feels well, what he wants to do next time he becomes ill. Check in intermittently to see if the goals change as the child becomes more debilitated. Though it is difficult to hear, and difficult not to put your own needs first, you may hear great wisdom if you listen to your chronically ill child.
When treatments are experimental, they are just that. In other words, we don't know at all that they will help. You have to be careful to judge experiments as carefully as you judge your other choices.
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|Copyright © 1999, 2006 by Joanne Lynn. This extract from the Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D. is used with permission. To learn more about improving care at the end of life visit the main web site for Americans for Better Care of the Dying.|