Editor’s Note: Patient Worthy is proud to share this story from the Courageous Parents Network, originally written by Kelsey Stanczyk.
When I first became a nurse, I worked in an adult oncology unit. Many of my patients eventually faced the heartbreaking decision to stop curative treatment and focus instead on comfort. Only then—after treatment had ended—would their medical team call for a palliative care consultation.
From the moment the palliative care clinicians walked in, something shifted. They didn’t stand over the bed or rush through updates. They pulled up a chair. They asked questions like, “What matters most to you and your family?” and “What brings you joy?” Their presence changed the room, and often the entire plan of care. The focus became the person—how they felt, what they valued, and what they hoped for.
Because of that, my own role changed too. I found myself spending quiet hours at the bedside listening to stories about love, work, and the wisdom gathered over a lifetime. Those conversations reminded me why I became a nurse at all. But they also left me wondering: why did this kind of care only arrive at the end?
When I asked the palliative care team why they weren’t involved earlier—sometimes even at diagnosis—they simply said, “We wish we were.” That feeling of missed opportunity stayed with me for years.
A decade later, I was the mother sitting in the NICU, stunned, as a genetic counselor explained that my five-day-old daughter’s newborn screening showed something unexpected. Although my pregnancy had been complicated, every standard test suggested a genetic condition was unlikely. But unlikely is not impossible, and hearing the word “rare” spoken as a diagnosis instead of a hypothetical was devastating.
Looking back, I wish a palliative care specialist had walked into the room alongside that genetic counselor. I am deeply grateful for the eleven specialists who came after, and I don’t blame anyone for not bringing up palliative care. I know the hesitation well—many people, including clinicians, equate palliative care with giving up. Even though I knew better, I can imagine why the team might have been afraid of how I’d react if someone mentioned it for my newborn.
Stella’s life began with brilliant medical minds working to understand her body, which carried two rare genetic anomalies never seen together. Each specialist held a piece of her puzzle, but no one was responsible for fitting the pieces together. So, I became that person—coordinating, managing, questioning—while also trying to simply be her mom.
At one of Stella’s follow-up appointments, a nurse practitioner gently suggested a palliative care consult. Her careful tone instantly brought me back to my early nursing days. I recognized her sensitivity – her awareness of the stigma she’d have to navigate. I was almost embarrassed I hadn’t asked for the referral myself.
We talked about how palliative care could help Stella live the best life she could, for as long as she could. At the time, none of us imagined how short that time would be.
Once palliative care became part of our team, everything changed. Their focus was the whole picture—Stella’s comfort, our family’s needs, and what quality of life truly meant for her. They relieved me of roles I hadn’t realized I was carrying alone. They listened. They advocated. They amplified our voices and honored Stella’s story, right up until her final moments and even after she died. They gave me the greatest gift I could ever receive: the space to simply be Stella’s mom.
My experience is just one example of how powerful palliative care can be at any age and any stage of illness. Palliative care is not about surrendering. Yes, they manage symptoms—but they also focus on you, your child, your goals, and what brings meaning to your days.
Why should comfort only matter at the end of life? Why shouldn’t we consider someone’s hopes, fears, and priorities from the very beginning?
If you’re overwhelmed or unsure of the path ahead, palliative care can be the hand that reaches in and guides you. Many people know palliative care can help in dying—but more people need to know how profoundly they help in living.
