Friday, May 27, 2016

How to talk to children about serious and terminal illnesses

Recently in my work at the hospital I have accompanied a number of children who are learning that their parents or grandparents have serious illnesses or are dying. I have provided support and end of life education to many parents and relatives. Additionally, some clergy in professional groups of which I am a part have been discussing this same topic. So I am sharing what I have learned in the hope that it might be helpful for others.

Here are some helpful tips:

1. Be honest
Children are incredibly intuitive beings. They can sense their emotional environment and they know when something is different.  You are not sparing children's feelings by hiding a serious diagnosis. By honestly saying, "you father is sick" or "your grandmother is dying", you are validating what children already probably know.

2. Use simple, concrete language
This is not the time for euphemisms.  Children tend to be very literal in their understandings of the world.  If you say, "We are losing grandpa" they might not understand what that means. Saying, "Grandpa's heart and lungs are sick, and they are having a hard time doing their job to keep him alive, so he is dying" is preferable. Do not be afraid to use the words "Cancer" or "Dying" or "Death."  Odds are, your child is probably already thinking it, so saying it out loud gives them permission to ask questions.

3. Be open to questions
This is not necessarily comfortable. But giving your child space to ask the questions that they have is an important way of caring for them. It is a way of assuring that they are seen and heard. Also be willing to admit, "I don't know the answer to that" and enlist the help of nurses, doctors, social workers, chaplains, and education professionals.

4. Provide reassurance
Children often have questions related to security, such as, "Who will take care of me?" and "Can we afford this?"  It is crucial to remind children that they are loved and cared for, and they will continue to be cared for. If parents are unable to be provide the necessary care and support while hospitalized, enlist the help of other relatives or caring neighbors to provide support and attention. Also, reassure children that financial matters and other "adult" worries are being taken care of. A child's most important job is to continue to be a child.

5. Encourage children to be as involved (or not involved) as they wish
Provide children with the opportunity to visit their parent/grandparent/other family member in the hospital. Because of developmental needs, children often need to see someone who is sick and/or dying to understand what is happening. There is often an impulse to give children happy memories or not see their relative in a sick or weakened state. But also give your child an opportunity to refuse. Do not pressure them to touch the sick person or talk to them, as this is an extremely difficult situation. If you child chooses to visit someone who is seriously ill or dying, designate a specific support person for them during that time. Make sure that person is attentive to the needs of the child.

6. Prepare children for what they will see upon visiting
Provide careful and developmentally appropriate information. For a younger child you could say, "Your mom has a tube down her throat. It is breathing for her."  For a teenager you could say, "Your mom is on a sort of life support called a ventilator, it is doing the work of breathing for her." You could describe the room and talk about who might be present in the room ("Your dad has a nurse and a doctor in his room with him who are taking care of him") and encourage children to talk to their parent/loved one or touch them if they like. If someone has extremely traumatic injuries, be sure to emphasize that their pain is being managed by the medical team.

Here are some resources that I have used in my work:

When Someone Has a Very Serious Illness by Marge Heegaard

Resources from the American Cancer Society

The Elephant in the Room by Amanda Edwards

I hope to continue to curate a list of other resources. Stay tuned for my next blog post about how to talk to children about death and grief.