The unvoiced questions of children experiencing an illness, dying, or death in their family

Andrea L. Warnick, RN, MA (biography and disclosures)

Disclosures: Self-employed Nurse Psychotherapist. No conflict of interest.

Mitigating Potential Bias:

• Only published data is presented
• Recommendations are consistent with current practice patterns

What I did before

As a nurse with experience working in both adult and pediatric oncology, I frequently encountered kids facing the serious illness or dying of someone in their life. Some of them were ill or dying themselves. Every now and then a child or youth would ask me a question about the illness, dying, or death. A five year old once enquired “Is the medicine going to make my mom better or will she die like Terry Fox?” Then there was the 7 year old who asked “Do you think I will see a bright light when I die?”

Such questions, particularly those involving death, would quickly propel me outside of my comfort zone. I did my best to respond honestly to the answerable questions and to wonder together with them about the unanswerable ones. I also made use of the old standby “I’m wondering what you think about that?”: A useful technique in certain situations, but one that has its limits for children with unmet informational needs.

What I did not do was encourage kids to share their questions with me, largely due to feeling ill-equipped to respond. Out of a fear of saying the wrong thing, I also did not offer parents guidance on how they could foster an environment that would help their children feel comfortable voicing their questions and concerns. Nor was I aware of the emerging literature suggesting the benefits of communicating openly and honestly with children experiencing an illness or an impending death within the family (1, 2, 3).

What changed my practice

Ten years ago I began working as a Nurse Psychotherapist in a children’s grief program. The role primarily consisted of preparing children for a death in the family and supporting them following the death. I quickly became aware of how common it is for children grieving a dying or death to have many unvoiced questions about the illness. As I became more familiar with the internal lives of grieving children I learned that the child’s tendency to withhold illness related questions from parents often lies in a fear of upsetting the parent during an already difficult time.

This unvoiced desire for information was further highlighted during my five years of being the clinical director of Camp Erin Toronto, a weekend overnight camp for kids between the ages of 6-17 who have experienced the death of a parent or sibling. One of the most valuable activities of the camp weekend is an activity called “Ask the Doctor”. It involves giving the 70 campers the opportunity to ask the camp doctor any of their unanswered questions about illness, dying, or death. Questions can be asked openly in front of the group, or anonymously by writing them on slips of paper. The questions are always abundant, some of which children have been carrying with them for years. Questions asked at past camps include:

• “How do you get cancer?”
• “What is the right definition for death?”
• “When someone dies where do they go?”
• “Is cancer contagious?”
• “Why would someone chose to kill themselves?”
• “Is an illness ever a punishment?”

The camp doctor gently and truthfully answers the questions he/she can and also spends a lot of time being honest about not having an answer while still validating the question. A common response to one of the unanswerable questions would be “That’s an excellent question. It’s a question that none of us have an answer for, but we can wonder about it. I’m really glad you asked it though.” It is an important part of the activity for the kids to learn that adults are not just withholding all the answers from them, but there are many questions, especially those concerning mortality, to which adults also lack answers.

Due to the success of “Ask the Doctor” as a camp activity we started integrating it into individual counselling sessions outside of camp as well. In reviewing the themes that emerged from these camp and community sessions we found many of them could be grouped into five topic areas:

• Grief feelings (“Will I always be so sad?”)
• The “4 C’s”:

1. Did I Cause it? (“Did I stress mom out so much she got sick?”)
2. Can I Catch it? (“Is cancer contagious?”)
3. Can I Cure it? (“If I’m really good will dad get better?)
4. Who will take care of me? (“If my caregiver dies will I be sent to an orphanage?”)

Other programs have also found similar themes regarding the common concerns of grieving children and youth (4).

What I do now

The serious illness, dying, or death of a family member is one of the most significant life events a child will ever experience. When I encounter a youth in one of these situations, I no longer wait for them to take the lead in sharing their concerns and questions with me. I consider the encounter, whether in my personal or professional life, to be an opportunity to make a positive impact on the child’s grief process and emotional well-being. Regardless of whether I’m seeing the child once or multiple times, it is now a personal standard of practice to:

• Invite questions.
• Address the 4 C’s.
• Define “grief” as all the feelings we have when something difficult happens in life including sad, mad, lonely, wanting to have fun, worried. I also let them know that grief is natural and healthy even though it feels really hard.

When I am unable to answer a child’s question, but I know that someone else (perhaps one of the specialists involved) will have an answer, then I offer to find out the answer and get back to them.

When I am asked one of the unanswerable questions, I am honest about the fact that I do not have an answer, yet I validate the question. Such was the case when an eight year old grieving the death of her mother from cancer asked me “Does everything happen for a reason or are some things really random?”

I now encourage parents to take the lead in creating an environment of open communication within their family, and I connect them with resources that can help them do so (5-10). When parents ask me questions about which I am unsure, I’m honest about it, in the same way that I encourage them to be honest with their children about not having all of the answers.

In an effort to bridge the significant gap that exists between theoretical knowledge and clinical practice, I also put a lot of effort into disseminating information on this topic to other clinicians. I wish I had access to this information earlier in my career. I am now only too aware of the powerful role that well-informed clinicians can play in shaping a child’s story (and thus life-long grieving process) around the illness, dying, and death of their family member.

References

1. Keeley D. Telling children about a parent’s cancer: parents want help but don’t get it. BMJ. 2000;321(7259):462-463. (View)
2. Kroll L, Barnes J, Jones AL, Stein A. Cancer in parents: telling children: Sensitive communication can reduce psychological problems . BMJ. 1998;316(7135):880. (View)
3. Beale E, Baile W, Aaron J. Silence is not golden: Communicating with children dying from cancer. J Clin Oncol. 2005;23:3629-3631. (View)
4. Payne S, Thompson F. Bereaved children’s questions to a doctor. Mortality. 2000;5:74-96. (View with CPSBC or UBC)
5. Talking with young people about illness and dying. Ontario: Max and Beatrice Wolfe Children’s Centre; 2012. View
6. Warnick A. Children at the bedside of a dying family member or friend. Virtualhospiceca. 2014. View
7. Warnick A. Don’t use the “d” word: exploring myths about children and death. Virtualhospiceca. 2014. View
8. Warnick A. When to tell the children: preparing children for the death of someone close to them. Virtualhospiceca. 2014. View
9. Russell E. Living dying: A guide for adults supporting grieving children and teenagers. Ontario: Max and Beatrice Wolfe Children’s Centre. View
10. Hamilton J. When a Parent is Sick: Helping Parents Explain Serious Illness to Children. Lawrencetown Beach, N.S: Pottersfield Press; 2001. (View with CPSBC or UBC)

Additional Reading for Professionals

1. Grenklo TB, Kreicbergs UC, Valdimarsdóttir UA, et al. Communication and trust in the care provided to a dying parent: a nationwide study of cancer-bereaved youths. J Clin Oncol. 2013; 31:2886-2886. (View)
2. Keeley M, Generous M. Advice from children and adolescents on final conversations with dying loved ones. Death Stud. 2014;38:308-314. (View with CPSBC or UBC)
3. Möller B, Barkmann C, Krattenmacher T, et al. Children of cancer patients: Prevalence and predictors of emotional and behavioral problems. Cancer. 2014;120:2361-2370. (View with CPSBC or UBC)
4. Seccareccia D, Warnick A. When a parent is dying: helping parents explain death to their children. Can Fam Physician. 2008;54:1693-1694. (View with CPSBC or UBC)
5. Silverman, P.R. (2000). Never too young to know: death in children’s life. New York: Oxford University Press. (View with CPSBC or UBC)

Book Recommendations for Parents

1. Silverman, P. & Kelly, M. (2009). A parent’s guide to raising grieving children: rebuilding your family after the death of a loved one. New York: Oxford University Press.
2. Stokes, J. A., & Stubbs, D. (2007). As big as it gets: supporting a child when a parent is seriously ill. UK: Winston’s Wish.

Book Recommendations for Children

1. Brown, L. K. (1998). When dinosaurs die: a guide to understanding death. New York: Little, Brown and Company. (View with CPSBC or UBC)
2. Mellonie, B. (1983). Lifetimes: a beautiful way to explain death to children. Toronto: Bantam Books. (View with CPSBC or UBC)

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The unvoiced questions of children experiencing an illness, dying, or death in their family

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