Making Decisions about End-of-Life Care

Every moment of every day since your child’s diagnosis, you, your family and friends, and your child’s health care team have been working tirelessly toward cure. Unfortunately, sometimes a cure is not possible and it can seem that just staying alive is very hard for your child. This is a frightening place for parents to find themselves. They wonder if their wish to have their child survive is a selfish one. They wonder “can I really let go?” or “can I survive if my child dies”?

Many parents say that they cannot give up the fight because it would be a betrayal of their child’s courage. They feel torn between continuing treatment aimed at the possibility of cure or prolonging life, or stopping cure-directed treatment in favor of offering comfort care: making their child most comfortable, but knowing that their child’s lifetime will be short.

Your deep and lifelong knowledge of your child, and how he or she thinks and feels, can help you to make this difficult decision. Some children may truly be able to help you make this decision together. Older children may be able to express their own needs and desires. They can tell you - if you let them know you are willing to have this hard conversation - that they cannot fight much longer. Sometimes this is said indirectly (“I really want to sleep in my own bed with all my dolls” or “I just want to take Blackie for his walks”) or directly (“Mom, Dad, I’m really tired. I just can’t feel this sick any more. It hurts too much”).Younger children - toddlers and even infants - can give you a sense of what they are feeling, if they are hurting, or whether they just want to be cuddled. After all, you have been “talking” to each other since even before your child was born.

Just as many parents feel they cannot give up the fight because it would be a betrayal of their child’s courage, many children feel they cannot give up the fight because they would disappoint their parents. Or, they feel they would disappoint their brothers or sisters, or their grandparents, or their friends. Nobody means to make a child feel this way, but children know that everyone has been hoping and praying for a cure.Until given permission, a child can feel that fighting the cancer is the only option, even when there is no more cure-directed treatment to try.

Children can be helped to understand that this is not “giving up,” but rather recognizing when the disease is stronger than the available treatments. While you have known all along that cancer is sometimes an incurable illness, it is very difficult to come to the realization that your child’s cancer will not be cured. You can praise you child for how much he or she has tolerated and been willing to go through in hopes that the cancer could be cured, and talk about how grateful you are for every moment you have had together. When a cure is not possible, even with the best medical care, it is okay to want your child to be free of pain and in the most comfortable and comforting environment.

As a parent, you know your child better than anyone else does. Your bond is like no other. You and your child have already made many decisions together during this journey. This very important decision about whether cure-focused treatment holds enough promise to be worth continuing to struggle is one that makes parents take a long look into their heart for answers. You know that if you watch and listen carefully your child, no matter how old, communicates joy, sadness, hurt, energy, and fatigue. Often, though, the answer to whether this is the time for more cure-oriented treatment or to turn to comfort treatment is not straightforward and sometimes neither you nor your child knows what the best answer is. At times like that, it is okay to let your child know that you are not sure what is best and that, together, you can seek guidance from others. But, before you begin to explore options, it is very important that you let your child know that you understand and appreciate how hard getting this far in treatment has been, and that you will support his or her decisions.

Older school age children and teenagers can understand the consequences of choosing to have more treatment or not, including understanding that not having more curative treatment means that they will die. Very young children or children who are developmentally impaired, or in a coma, may be unable to make their wishes known in customary ways.But, your sense of your child’s level of energy or tiredness will help you to know whether this is the time to focus on comfort care. Although making a decision to opt for comfort care may seem opposite to the supportive and protective things you have done throughout your child’s life, this decision is actually a way to continue to support and protect your child. Sometimes, the greatest caring comes from recognizing when further efforts toward cure are unlikely to achieve that goal.Your task as your child’s protector and supporter then becomes helping your child spend as much time as life permits feeling as well as possible, surrounded by loving family and friends.

We all wish that no one would ever have to face the decision to hold on or let go. But, if you and your child are facing this decision, there are many people who can help you take the next steps.