By Kelsey Mora, Certified Child Life Specialist (CCLS), Licensed Clinical Professional Counselor (LCPC), Chief Clinical Officer at Pickles Group, and author of The Dot Method: An interactive tool to teach kids about cancer.
When faced with the heartbreaking reality that a loved one is not going to recover, adults often find their thoughts immediately fixated on death and dying. This natural, albeit painful, focus can make the already daunting task of speaking with children about such a profound change even more frightening and challenging. However, these crucial conversations, while encompassing the difficult truth of mortality, should also be an opportunity to imbue them with understanding, comfort, and a deep sense of connection.
This guidance is intended for any child who has a significant adult in their life – be it a parent, grandparent, teacher, or close friend – facing a terminal illness. It is essential to remember that each child’s developmental stage and individual sensitivities require a tailored approach. While these discussions are undeniably difficult, they also present a unique opportunity to guide children through one of life’s most meaningful, albeit sorrowful, passages with clarity, empathy, and unwavering support.
Understanding the Foundation: Assessing a Child’s Current Perception
Children are remarkably perceptive. They absorb the subtle and overt changes within their environment – shifts in routine, altered energy levels, hushed conversations, and the palpable emotional undercurrents that permeate a household. Before embarking on a direct explanation, it is paramount to ascertain what a child already understands, or perhaps misunderstands, about the situation.
Initiating the Dialogue:
A gentle opening can be as simple as asking:
"What do you understand about what’s happening with [loved one’s] illness?"
This open-ended question serves as a vital diagnostic tool. It allows caregivers to identify any misconceptions that may be causing undue anxiety, fill in crucial gaps in their knowledge, and build upon their existing framework of understanding. This initial step ensures that the subsequent conversation is grounded in reality, rather than speculation or fear.
The Art of Preparation: Providing a Gentle Warning
Similar to any significant or emotionally charged conversation, it is beneficial to provide children with a brief, clear warning that what is about to be discussed is different from their typical daily interactions. This signals the gravity and importance of the upcoming dialogue.
A Simple Precursor:
A phrase like:
"I have something important to talk about."
can serve as a gentle preface. This allows the child a moment to mentally prepare, signaling that the conversation will be serious, potentially upsetting, and requires their full attention. It averts the shock of abrupt, difficult news and fosters a more controlled emotional response.
Building Bridges of Understanding: Leveraging Past Conversations
The most effective way to explain complex or upsetting information to a child is to connect it to what they already know and have been previously told. This creates a coherent narrative and reinforces trust.
Connecting the Dots:
Caregivers can build upon prior discussions by referencing them:
"Remember when we talked about how the medicine was trying to help [loved one’s] body fight the sickness?"
This serves as a familiar anchor point. Following this, a simple, honest explanation can be offered:
"Well, the doctors have explained that the medicine isn’t working as well as we hoped anymore, and there aren’t any other treatments that can make the sickness go away or make [loved one] better."
The Power of the Pause:
After delivering this crucial information, it is vital to allow for a pause. Children process information and emotions at their own pace. Some may immediately have questions or express their feelings, while others may remain silent. Both responses are valid and provide valuable insight into the child’s current emotional state and needs. This moment of quiet allows for internal processing and offers an opening for further dialogue when the child is ready.
Demystifying Death: Clear, Direct Language is Key
One of the most challenging aspects of this conversation is explaining the concept of death and dying. Euphemisms, while often used with good intentions, can inadvertently create confusion or even more profound fear for children. Phrases like "going to sleep" or "passing away" can be misinterpreted, leading to anxieties about falling asleep or the unknown nature of "passing."
Defining the Undefinable:
A direct and age-appropriate explanation is crucial:
"Because there aren’t any other medicines to help [loved one’s] body anymore, it means that [loved one] will die from this sickness. Dying means that [loved one’s] body will stop working, and they won’t be able to keep living."
It is important to acknowledge that a child’s understanding of death is deeply intertwined with their age, developmental stage, and any prior experiences they may have had with loss. By employing clear, unambiguous language, adults provide children with the factual information they need to begin processing the reality of the situation, rather than struggling to interpret ambiguous terms. This fosters a sense of trust and security, knowing that the adults in their lives are providing honest, albeit difficult, information.
A Shift in Focus: Embracing Palliative Care and Comfort
When curative treatments are no longer an option, it does not signify an end to care; rather, it marks a significant shift in the focus of that care. It is important to reassure children that their loved one will continue to receive dedicated attention and support.
Introducing Palliative and Hospice Care:
Explaining this transition can be framed as follows:
"We know that [loved one] will get more sick and weaker as time goes on, but we don’t know exactly how quickly that will happen. We are going to be working with a special team called hospice. Their job is to help [loved one] be as comfortable and pain-free as possible. They can help [loved one] either at home or in a special place where they can get the best care."
This explanation serves to alleviate anxieties about neglect and emphasizes that the primary goal now is comfort and dignity. It also allows family members to shift their focus from the fight against illness to cherishing the remaining time together, prioritizing connection and emotional well-being.
The Art of Presence: Maximizing Quality Time and Memory-Making
For children navigating the impending loss of a loved one, the quantity of time spent together often takes a backseat to the quality of those moments. Maintaining elements of normalcy, such as attending school, participating in familiar activities, and adhering to established routines, can provide a sense of grounding and security. However, it is equally important to consciously create space for meaningful interactions and memory-making.
Cherishing Every Moment:
A poignant question to ask a child can be:
"We can focus on enjoying our time together and making special memories. What are some things you would like to do with [loved one]?"
Even the simplest activities can become profound. Reading a favorite book, watching a beloved show together, creating a handmade card, or taking a photograph can hold immense sentimental value. Some children may find comfort in tangible keepsakes, such as decorating a picture frame or crafting bracelets that can serve as lasting reminders of their connection. It is also important to acknowledge that some children may struggle with the changes they witness and may find being around their ill loved one difficult. This is a natural reaction and should be met with understanding and acceptance.
Ongoing Dialogue: Reiteration and Emotional Support
The process of understanding and grieving is not a singular event; it is a continuous journey. When a loved one is terminally ill, there is a significant amount of information and emotion for a child to process. Encouraging ongoing dialogue and reiterating conversations as needed is crucial.
Creating a Safe Space for Questions:
- Invite Curiosity: Regularly ask children what they are wondering about or if they have any new questions.
- Validate Feelings: Acknowledge and validate all emotions a child expresses, whether it be sadness, anger, confusion, or even moments of joy.
- Practice Coping: Work with children to identify healthy coping mechanisms for dealing with difficult emotions.
- Balance Life: Strive to maintain a balance between everyday life and preparing for the inevitable changes.
The Power of Literature:
Incorporating age-appropriate books can be an invaluable tool for helping children understand complex concepts like anticipatory grief, death, and the grieving process. Resources like those offered by the National Breast Cancer Foundation (NBCF) provide curated lists of recommended books for families facing cancer, offering a shared experience of learning and emotional processing.
Above all, children need to know that their feelings and questions are welcomed and that they will not be navigating this difficult journey alone. They need to be assured that their trusted adults will continue to communicate, listen, and offer unwavering support every step of the way. While it is impossible to shield children entirely from the pain of loss, adults can provide a sanctuary of safety, inclusion, and steadfast support as they come to terms with what is happening. By fostering open communication, responding to questions with empathy, and creating ample opportunities for connection and memory-making, we can powerfully remind children that even in the face of profound sorrow, love and togetherness endure.
Resources for Families Facing Terminal Illness
The journey of a loved one’s terminal illness is incredibly challenging, and no family should have to face it alone. Organizations are dedicated to providing support and resources to help children and families navigate these difficult times.
National Breast Cancer Foundation (NBCF) Support:
The National Breast Cancer Foundation is a vital resource for parents and families affected by cancer. They offer a range of free support services designed to guide children through the complexities of a parent’s cancer diagnosis and its progression.
- For more free resources: Visit nbcf.org/parents for a wealth of information and guidance tailored to children and families facing cancer.
- Recommended Reading: Explore lists of books that can help children understand grief and loss at nationalbreastcancer.org/blog/recommended-books-for-families-facing-cancer/.
Other Dedicated Organizations:
Beyond the NBCF, numerous other organizations are committed to supporting the emotional well-being of children and families impacted by serious illness. Partnering with these groups can offer invaluable additional support:
- Pickles Group: Offers programs and resources specifically designed to support children coping with a parent’s cancer. Their expertise in child life and counseling provides a critical foundation for emotional well-being.
- The American Childhood Cancer Organization (ACCO): Provides a wide array of resources, information, and support for families affected by childhood cancer, including guidance on communicating difficult news.
- Hospice and Palliative Care Organizations: Local hospice and palliative care providers offer extensive support not only for the patient but also for their families, including grief counseling and resources for children.
The National Breast Cancer Foundation stands as a steadfast ally for you and your family as you navigate the challenges of a breast cancer diagnosis. Explore our website to discover information about NBCF’s breast cancer support groups, access free educational resources, and locate a patient navigator in your area who can provide personalized assistance.
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