BY LAUREN AGORATUS, M.A. Pediatric Starter Kit
In the interest of full disclosure, I have a daughter with multiple life-threatening conditions who “coded” and had to be resuscitated on several occasions. So reviewing the Pediatric Starter Kit, which was designed by The Conversation Project to help parents of seriously ill children who want guidance about “having the conversation” with their children, was very difficult for me at times. However, this is an important resource which is helpful to families because, although difficult, this is a conversation that needs to happen.
The format is very good with different sections: “Get Ready, Get Set, Go, & Keep Going.” Under “Get Ready” (preparing), 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. The document assures families 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. Under “Get Set” (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 are 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.
Regarding the “Go” (having the conversation) section, it is emphasized that parents ensure the “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.
Finally in the “Keep Going” (continuing the conversation) section, 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 where anesthetized, they internalized what was said during surgery and it affected outcomes. In discussing siblings, it states that, “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 http://www.compassionatefriends.org/Find_Support/Chapters/Chapter_Locator.aspx. Generally, this is a very good resource for parents in an extremely difficult situation. How it is approached is a personal decision made by each family.•
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the parent of a child with multiple disabilities. Lauren serves as the Coordinator for Family Voices – NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center, both housed at the Statewide Parent Advocacy Network (SPAN) at www.spanadvocacy.org