The Conversation Project has developed the “Pediatric Starter Kit: Having the Conversation with Your Seriously Ill Child” which is helpful to both parents and professionals. This kit covers what families can say when their child is very ill, and how to answer their child’s questions. It is broken down into sections: “Get Ready”, “Get Set”, and “Go”, and “Keep Going.” Although it may be difficult to think about, this is an important resource which is helpful to families because this is a conversation that needs to happen.
This section is on preparation. One of the main questions is, “Is it better for my child not to know how sick he or she is?” This is a question which depends upon the age or level of understanding of the child. It is assuring to parents that “It’s okay to ‘go there.’” Interestingly, it is noted that while families are trying to protect their children, children are often also trying to protect their parents! The parent quotes throughout the article raise awareness of the issue. One parent states that children “sort of already know the answer.” Two key points included, “Children often sense that they’re dying even if nobody is talking about it,” and “Talking about death will not hasten it.” Of course, each family has to determine how they feel about raising the issue of death with their child, because they don’t want to give up hope, or have their child give up hope, too soon.
This section is on how to start the conversation. Some good suggestions for hospitalized children include having a “favorite stuffed animal…piece of clothing…picture of a favorite place.” Comfort items are always a good idea and, if allowed, decorating the hospital room with pictures. We even made a “garden” on the windows of each room in which we stayed at Children’s Hospital using window markers.
Some parents may be troubled by specific examples in the book. For example, one parent told her child, “I think you’re right” when he said that he did not think the doctors would be able to cure him. Some parents may prefer to respond, “You could be right” in that situation, which would still validate the child’s response but in a gentler and less definite way. Some parents may question whether statements such as, “The doctor doesn’t think there’s any more medicine to make your cancer go away” take away their child’s hope, while others may feel that honesty in this situation helps both the child and the family prepare for the child’s death.
Supporting children’s choices is important and the suggestion to post something for the care team is a great idea such as, “Please don’t stand around my hospital bed and talk about me as if I weren’t there.” Families can ask staff like social workers for advice. There is a way of saying things being truthful but not "brutally honest." For example, pediatric transplant coordinators will tell patients that the medicine will help with pain, not that it will cure them, if they are terminally ill.
This section is about actually having “the” conversation. It is emphasized that parents must ensure that their “child’s wishes are respected.” This is vitally important no matter what happens. Once families ask social workers for help and know how to proceed, they need to address the concerns of their children. Many children’s hospitals have Child Life specialists that explain medical procedures to children, sometimes using tools such as puppets. It is also important that the child’s choices do not interfere with medical care. Sometimes children may have to go through uncomfortable procedures but there may be things to help such as numbing cream for IVs/labwork.
This section covers how to continue the conversation. Families can ask children, “Do you think you’re dying?” or “What makes you think about that?” Child-led discussions are best. An excellent suggestion from a parent was saying “the doctors are going to continue to try their very best to find a cure, they will never stop, but they may not be able to find a cure in time to beat this disease.” This is a better approach as it is more realistic but doesn't give up hope. Research has indicated that even when patients were anesthetized, they internalized what was said during surgery and it affected outcomes. In discussing siblings, it states, “Each child within each age group will have a different understanding of what death is.” This is true of the affected child, too.
One parent commented that what “would be a good death isn’t necessarily the same for all parents.” Providers also need to be aware of the cultural differences when serving diverse families. Lastly, there is a list of resources for families. However, one important resource that is missing is Compassionate Friends which supports families after the loss of a child; local groups are found at www.compassionatefriends.org/Find_Support/Chapters/Chapter_Locator.aspx. Generally, this is a very good resource for parents in an extremely difficult situation.
In conclusion, these are important conversations that families must consider how to have with their children. But how it is approached is a personal decision made by each family.
A version of this article was also recently published by Exceptional Parent magazine www.eparent.com.
Review of Pediatric Starter Kit
Link to Pediatric Starter Kit
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.