A dying child: helping a child approaching death
Updated: Nov 22
Austin E. Wilmot, M.S.W., L.C.S.W.
Children are not supposed to die, but unfortunately children do die. It can be one of the most painful things a parent could ever experience. Even Google has a difficult time with this topic. At first glance, a Google search on this topic mostly returns results geared towards helping a child deal with someone else that is dying or that has already died. This article offers some thoughts for parents to have in mind when helping a child approaching death.
Mental and emotional preparation for parents
Helping a child that is terminal begins with parents recognizing and accepting this certainty. Without parents processing through these feelings first, it will be more difficult to hold and respond to their child's feelings instead of behaving in response to their own feelings about the child's feelings and experience. Of course, grieving is a process and there is no expectation that parents have it all "figured out". That would be impossible and not at all the goal. Self-care is important throughout this process.
A child's need for understanding and truth
Telling a child that they are dying and will die is an important first step in being real about their circumstances. Depending on their age and developmental level, they may not fully understand what dying means. Depending on what the child understands (or doesn't), it may be helpful to work through ideas about death and how everyone dies at some time and that "the doctors and mommy and daddy will be working hard to keep you as comfortable as possible". Finding ways to help translate medical jargon and their condition into child-friendly language is important to filling the gaps in their imagination about why, how and when they are dying. A child that is left alone with too little information can only fill in the gaps with their own imagination. This may lead to more anxiety and confusion on top of everything else that is being felt. Sugarcoating or concealing information should be avoided as it sets the stage for feeling deceived or lied to if they feel an incongruence with what they were told, how they feel and how parents and others look and behave around them.
Facilitate open communication, titrated at the child's pace
As time goes on, the child may have questions and more on their mind as they grieve. Following the child's lead with answering their questions is a good place to start, while continuing to be up-front and speaking on their level.
Monitor for any behavior that might be a way of saying something without words
A child appearing to withdraw, lash out or regress into other forms of self-soothing, while normal, may also be an indication of the child being "stuck" or in need of more support. When in doubt, consulting a mental health professional or child life specialist at the hospital to help you through any difficulties.
Normalizing and validating feelings
A child may have a variety of feelings in response to knowing that they are dying. Sadness, anger, resentfulness, guilt, loneliness, despair and disbelief are a few. It is important to normalize and validate any feelings that the child has and to convey that "mom/dad can handle all your big feelings that you are having". Respecting the child's boundaries with what they wish and do not wish to talk about is also crucial to maintaining their sense of control and autonomy.
Maximizing quality of life until the end
To the extent possible, the child should be helped to maintain some level of routine and sense of control in their remaining days. As guided by the child, quality visits with friends, family, things, places and activities they love should be available to them, as possible. Foundations that accept child referrals, such as Make-A-Wish, are also options to provide the child with further enriching experiences.
Asking for help
Hospitals often have child life specialists on staff to help families with their psychosocial needs, including the impending death of a child. You deserve all the help available during this time, including from friends and other family members offering their support through their actions, whether food delivery, cleaning or other tasks that need to be done.
Siblings are at risk of being left behind in this process and yet have their own grieving to do. Siblings need help understanding their brother or sister's deteriorating condition on their appropriate level and that they are going to die. As with the ill child, siblings may need help exploring what it means to die and their own feelings, including about the possible imbalances with how mom and dad are focused on their ill sibling. Routine remains important for siblings during this time, as well as following their lead on how they wish to be with, play and, ultimately, have a "good goodbye" with their brother or sister.
Wolfelt, A. (n.d.). Helping a child who is dying. GriefWords.com. Retrieved November 21, 2021, from https://griefwords.com/index.cgiaction=page&page=articles%2Fhelping30.html &site_id=2#:~:text=Helping%20the%20Dying%20Child%20Live&text=Help%20the%20dying%20child%20live,make%20each%20remaining%20day%20count.