My Child Is in Hospice: A Parent’s Perspective on Pediatric Hospice Care
Five years ago, if you had mentioned hospice, I would have thought of an elderly person who no longer wanted to “fight” a disease or simply someone reaching the end of life because of old age. I imagined a long process where they were cared for in comfort until they passed away.
Three years ago, I heard the word hospice again—but this time it was about my three-month-old baby.
At the time, she was having major episodes of respiratory distress and she didn’t have a tracheostomy. Hospice was presented as the other choice—the option if we decided not to move forward with the trach.
Yet once we got the trach, and Paige continued to have these events, it was explained to us that her condition actually qualified her for hospice care for the rest of her life.
At the beginning, I was very confused. To me, hospice meant something bad—it meant my child was dying. Yet we had just made the decision to prolong her life.
How did that make sense?
What Parents Often Don’t Realize About Pediatric Hospice
Hospice is one of those things where we often have preconceived ideas based on what we’ve seen before. Because of those experiences, we sometimes assume hospice only belongs in certain situations.
But pediatric hospice can look very different.
For children with severe or medically complex illnesses, hospice is often about improving quality of life and reducing the burden of care for families living with serious conditions.
My daughter receives palliative care, which is part of hospice. Palliative care is used when someone has a severe illness that decreases both the patient’s and the caregiver’s quality of life. The goal is to improve comfort and provide support throughout the illness.
Sometimes those illnesses eventually lead to death, which is why palliative care is often connected to hospice. But in many situations—especially with medically complex children—it can be part of life for a long time.
Paigey has received hospice services since she was five months old, and it has been part of our life ever since.
What Hospice Looks Like for Our Family
Having hospice is like having a medical support system.
They make certain things easier—like getting medications or receiving care when something unexpected happens. Instead of waiting for an appointment if your child develops a fever, hospice can send a nurse directly to your home to assess and provide care there.
For families caring for medically fragile children, this can make a huge difference.
Hospice also helps with medications. Many of Paige’s medications are delivered directly to our door. We order them through the nurse who visits our home, and hospice coordinates the process.
Some of Paige’s medications cost over $1,000 a month, yet hospice provides them and we’ve never seen a bill.
Since hospice focuses on comfort and lowering the burden of care, keeping your child at home is often the goal whenever possible.
The People Who Become Your Support System
Hospice also means that social workers and nurses come to your home on a regular basis.
When we lived in Maryland, the nurse and social worker became part of our support system. Over time they became our friends, and I genuinely looked forward to them coming each time.
They even threw a birthday party for Paige and helped make little moments special for our family.
The goal of hospice is to increase quality of life—not only for the child, but for the entire family.
Does Insurance Get Involved?
Insurance does pay hospice on our behalf, so it’s important to make sure your insurance covers it.
But in many ways it is far less complicated than other medical services that go through insurance.
In our experience, hospice providers care far more about making sure families are supported and taken care of. Insurance simply helps make the services possible.
The Emotional Reality of Having a Child in Hospice
From an emotional standpoint, realizing that my child is in hospice affects me in different ways depending on the day.
Some days I simply think about the care we receive and feel thankful for it.
Other days there are emotions that sit quietly under the surface.
There is the strange tension of not wanting to lose hospice services. Of course I want my child to be free from life-threatening symptoms—but at the same time, the idea of suddenly losing support and having to somehow afford a $1,000 medication every month is overwhelming.
There is also the fear that people only see Paige on her good days. They don’t see the days when her illness shows itself more fully—when she becomes almost lifeless.
Sometimes it feels like we have to prove she is sicker than she looks.
Having a child in hospice is different than an elderly parent entering hospice care. It carries a different emotional weight. You live in a strange tension—part denial, part acceptance—while also knowing you don’t know what you would do without the support hospice provides.
For Parents Walking Through Severe Illness
If you’re a parent caring for a child with a severe illness, I believe it’s important to allow your mind to consider hospice.
Yes, the emotional toll can be heavy at times. But hospice isn’t what makes your child have a severe illness—it’s the other way around.
Hospice exists to help.
Even if your child lives into their teens or twenties, they can still receive hospice services. For many families, that support makes it possible to continue caring for their child at home while maintaining the best quality of life possible.
Common Questions About Pediatric Hospice
Isn’t hospice only for people who are dying?
This is one of the biggest misconceptions about hospice.
Before our daughter was diagnosed with a severe illness, I also believed hospice meant the final days of life. But pediatric hospice can look very different.
Hospice often focuses on improving quality of life and reducing the burden of care for families living with severe illness. Some children receive hospice services for many years while continuing to live with medically complex conditions.
Hospice didn’t create my child’s illness—it simply provides support while we live with it.
What does hospice actually do for families?
For our family, hospice became a medical support system at home.
Instead of always waiting for appointments or rushing to the hospital, hospice nurses can come to the house and help when medical issues come up. They also help coordinate medications, equipment, and care so parents aren’t navigating everything alone.
For families caring for medically fragile children, this support can make daily life much more manageable.
Does hospice help with medications?
Yes, and this is one of the most practical ways hospice reduces the burden of care.
Many medications are delivered directly to our home through hospice. Some of my daughter’s medications cost over $1,000 per month, but hospice provides them so comfort and symptom management remain the focus.
Instead of spending hours coordinating prescriptions and insurance approvals, hospice helps simplify the process.
Can children stay on hospice long-term?
Yes. Some children receive hospice services for months, while others receive them for many years.
Pediatric hospice can continue as long as a child’s medical condition significantly affects their quality of life and requires ongoing symptom management.
This is very different from the traditional idea of hospice being only for the final days of life.
If you are a parent navigating life with a medically complex child, you’re not alone.
You may also want to read my story about choosing a tracheostomy and learning how to build a care system at home.
Why I Write About Difficult Things
These blogs are hard for me to write.
But forcing myself to talk about difficult things, little by little, helps me understand my own life better. It also creates a way for me to help others who are walking through similar situations. This is why I publish my poetry – because we all carry broken pieces in life. Sometimes talking about these things simply bridges a small gap so that even in suffering, we can still glorify God.
