What You Should Know About Pediatric Hospice - From a Mom and Pediatrician

Traci Arieli
5 days ago
3 min read

Hospice - it’s a word that stops people. Especially when it involves children. It’s a concept that feels too big, too final, and too painful to say out loud. But for Dr. Tasha Faruqui, a pediatrician and mother of three, it became a lifeline amid uncertainty.

Tasha’s middle child lives with a rare, medically complex condition. For years, her family searched for answers, hoping for treatment, praying for clarity. Eventually, they had to face what so many families fear: that their child’s condition was not curable, and their focus had to shift from fixing to supporting.

This is what pediatric hospice looks like, from someone who has lived it on both sides of the medical chart.

What Is Pediatric Hospice, Really?

Too many people equate hospice with giving up. Taking advantage of pediatric hospice isn’t giving up; it’s making space for comfort, quality of life, and presence when a cure is no longer possible. It’s a form of care designed to support children with life-limiting conditions and their families, focusing on symptom management, emotional support, and creating meaningful moments in the time that remains.

However, unlike adult hospice care, pediatric hospice care is far less defined. There’s no clear roadmap, and every child’s path looks different. Prognoses are less predictable. Needs shift quickly. And often, families don’t even realize it’s an option until late in the journey.

Even for Dr. Tasha Faruqui, who trained in pediatrics, the world of hospice care for children was unfamiliar. She didn’t learn how to refer, what services were available, or when to start the conversation until she had to navigate it for her daughter. That gap in education is something she now speaks openly about, because she knows how much earlier support could have helped.

Why Would a Child Be on Hospice?

For Tasha, the decision to request hospice didn’t come easily. Her daughter was declining slowly but steadily. Breathing was becoming harder. The ventilator settings kept increasing. Yet, she and her husband, both physicians, couldn’t bring themselves to say the word “trach.” Just mentioning it would bring both of them to tears. “If we can’t even say the word,” she finally told him, “we need help.”

That’s when she reached out.

Hospice didn’t rush in with finality. Instead, it arrived with gentleness, offering language, support, and space for conversations they couldn’t have alone. The shift wasn’t about dying. It was about living better, even in the face of uncertainty.

How Long Can a Child Be on Hospice?

One of the most common and complicated questions families ask is “How long can a child be on hospice?”. In adult care, hospice often comes with a prognosis of six months or less. But pediatric hospice doesn’t follow a strict timeline. Children may live weeks, months, or even years with supportive care in place.

For families like Tasha’s, that ambiguity is part of what makes the journey so emotionally complex. There’s no clear endpoint, only a shifting horizon. The focus shifts from counting days to honoring them.

Palliative hospice doesn’t focus on when a child will die, but on quality of life. It helps to ensure that, however long a child lives, they’re surrounded by comfort, dignity, and love.

What Support Is Available Through Hospice?

Most people think hospice means morphine and silence. But pediatric hospice can look very different, especially when families know what to ask for.

Tasha didn’t receive a list of available services. Instead, she asked: “Can you help with this?” And the answer, again and again, was yes.

Her daughter received not only expert pain management but also massage therapy, emotional support, and Child Life services to help her siblings understand what was happening. Hospice helped her family communicate, both with each other and with her care team.

It wasn’t about giving up the fight. It was about being held.

Let’s Talk About It - Because Most People Don’t

If talking about adult hospice is hard, talking about pediatric hospice can feel impossible. Our culture struggles to hold the idea of childhood and death in the same breath.

Even within the medical field, conversations around pediatric end-of-life care are rare. Tasha admits she didn’t learn about it in her training. Many doctors don’t. And many families are never told it’s an option, until it’s nearly too late to benefit from it. That silence leaves families isolated, overwhelmed, and unsupported in their most vulnerable moments.

We can do better.

Hospice isn’t a failure. It’s a form of care. It offers space, relief, and humanity when a family needs it most. And it’s time we brought it into the conversation. Earlier, more honestly, and without shame.

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