When a child is seriously ill or grieving, it’s hard to know what to say. Many adults feel frozen—worried they’ll say the wrong thing or somehow make it worse. But silence doesn’t protect kids. What they need most isn’t perfection—it’s honesty, presence, and love.
In this article, drawn from our Sofia Unfiltered podcast with Dr. Robert Macauley—one of the nation’s few pediatric palliative care physicians and an Episcopal priest—we share how to talk to children about illness, death, and grief in ways that are truthful, compassionate, and developmentally appropriate. You’ll walk away with guidance you can use, no matter what stage your family is facing.
Dr. Robert Macauley is one of only a few hundred pediatricians in the United States specializing in palliative care for children with life-threatening illnesses. He holds the Cambia Health Foundation Endowed Chair in Pediatric Palliative Care at Oregon Health & Science University and brings a unique dual perspective as both a physician and an Episcopal priest.
Dr. Macauley is also the author of Because I Knew You: How Some Remarkable Sick Kids Healed a Doctor’s Soul—a deeply moving memoir that explores the lessons, love, and resilience he’s witnessed in his patients. His work blends clinical expertise with spiritual insight, offering families the compassionate care they need during the most challenging moments of life.
When people hear “palliative care” they often assume it means end-of-life care for children with cancer. But as Dr. Robert Macauley explains, that’s a narrow—and often inaccurate—view.
“A lot of people think it’s about how you die, and that may be part of it, but hopefully not. It’s really about how you live.” - Dr. Robert Macauley.
Pediatric palliative care is specialized, supportive care for children living with serious, complex, or life-limiting conditions. It is not the same as hospice.
Children with neurological, genetic, or congenital conditions may receive palliative care for many years—and many of them improve, stabilize, or “graduate” from care entirely. The goal isn’t just comfort at the end of life—it’s about improving quality of life at every stage.
“If you focus all on the sadness, then you overlook the meaning, the connection, and truly the inspiration of this work. I get to witness, in many ways, the best of humanity on a practically daily basis.” - Dr. Robert Macauley.
Pediatric palliative care supports the whole child—not just the diagnosis—addressing physical symptoms, emotional needs, and spiritual questions. Families are supported too, so no one walks through it alone.
Looking for holistic support? Explore care from Health Coaches, Therapists for Children and Families, and Spiritual Counselors to create safe, supportive conversations.
Let the child lead, speak honestly in ways they can understand, and avoid vague or overly reassuring language that isn’t true.
Children often know more than we give them credit for—even if no one has said the words out loud. According to Dr. Robert Macauley, pretending everything is fine only creates confusion and isolation. What kids need most is clarity, honesty, and connection.
Avoid phrases like:
Instead, offer grounded, honest support with phrases like:
Children don’t need perfect words—they need your presence.
If you’re unsure how to start, you're not alone. Get support through one-on-one sessions with a therapist or grief coach on Sofia Health.
A child’s understanding of death depends largely on their age and developmental stage.
Dr. Robert Macauley explains that for children to truly grasp the concept of death, they need to understand three key ideas:
Here’s how that understanding typically evolves by age:
Use simple, honest language tailored to the child’s age. Avoid euphemisms like “went to sleep” or “passed away,” which can lead to confusion, anxiety, or even sleep disturbances.
Instead, be clear:
“When someone dies, their body stops working, and they don’t feel anything anymore. It’s not something you caused, and it’s not something you can catch.”
Even when there are no easy solutions, being emotionally available, attentive, and compassionate has a profound impact. Caregivers who engage with honesty and presence help children navigate grief, understand illness, and develop resilience.
For more professional help on how to talk with children on this matter, book with a Family or Relationship Coach on Sofia Health.
Make space for their grief. Include them, validate their feelings, and avoid turning them into the “strong one” or the “helper.”
Dr. Robert Macauley reminds us that siblings are often the forgotten mourners. While attention naturally centers on the child who is ill—or the parents in crisis—siblings may feel overlooked, overwhelmed, or even responsible. Their grief might show up as anger, withdrawal, clinginess, or confusion.
Here are a few meaningful ways to support them:
Being included in age-appropriate ways helps siblings feel seen—not sidelined.
Explore support services on Sofia Health for pediatric coaches, emotional wellness tools, and family-focused therapy.
Don’t rush to fix, explain, or avoid the pain. Instead, stay present, listen fully, and validate the child’s feelings.
One of the most powerful principles in spiritual care is:
“The spiritual care adage is don't just do something, stand there, which is if you can't do anything, you can still be present.” - Dr. Robert Macauley.
Dr. Robert Macauley explains that adults often default to well-meaning but minimizing statements like:
These phrases can shift the emotional burden onto the child or unintentionally dismiss their grief.
Instead, try:
Even silence—offered with presence and care—can be more healing than the wrong words.
“So one thing that I always recommend is a bit of follow your heart, because it's scary, right? You don't want to say the wrong thing. But our hearts, in my experience, usually lead us to the right place“ - Dr. Robert Macauley.
Want help feeling more confident in tough conversations? Work with a grief coach or therapist on Sofia Health.
In his memoir, Because I Knew You, Dr. Robert Macauley shares the stories of children who profoundly shaped his work—and his life. There is Grace, a teenager whose dream was to perform on Broadway. A few days before she passed away, she came close to fulfilling that dream when she visited there. And Cora, born with trisomy 18, who was expected to live only days, but is now 12 years old.
These children were never just patients. They were teachers—showing what it means to live with courage, curiosity, and heart, even in the face of the unimaginable.
“These kids and their families started piercing my soul calluses. They forced me to feel fully, not just tuck away my emotions until convenient. That restoration of feeling is a healthy, healing thing.” - Dr. Robert Macauley.
For Dr. Robert, pediatric palliative care isn’t just about helping children die well. It’s about bearing witness to how they live—with humor, defiance, imagination, and extraordinary love.
You can read more of these unforgettable stories in Because I Knew You, available now at major bookstores.
Final Thoughts
Illness, grief, and loss are part of life—but silence doesn’t have to be. When we meet children with honesty, presence, and care, we give them something powerful: the reassurance that they’re not alone.
You don’t need to have the perfect words.
You don’t need to have all the answers.
You just need to show up—with love, with truth, and with a willingness to listen.
Start where you are. Support is here when you need it.
You don’t have to face this alone. Whether you’re caring for a sick child, supporting a grieving sibling, or processing your own emotions—there’s help. Sofia Health offers compassionate, qualified providers to support your family’s emotional, mental, and spiritual well-being. From specialized grief providers to spiritual counselors, explore the Sofia Marketplace to discover services and tools designed to help you in this moment and book with those who are trained to listen and support you through it.
Check out the full episode of the Sofia Unfiltered podcast, "What to Say to a Child About Illness, Grief, or Death with Dr. Robert Macauley" for a conversation that shares gentle, practical guidance for some hardest conversations with children. Available now on Apple Podcasts and Spotify.
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Disclaimer: The Sofia Unfiltered Podcast by Sofia Health is for general informational and entertainment purposes only and does not constitute the practice of medicine, nursing, or other professional healthcare services, including the giving of medical advice. No doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user’s own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard or delay in obtaining medical advice for any medical condition they may have. For any health concerns, users should seek the assistance of their healthcare professionals.