If your child has been diagnosed with a serious illness, they and you need special support. By adding pediatric hospice to their care team, you may be able to connect with extra support and services aimed at comfort — without sacrificing any of your child’s disease-directed treatments or other care.
That’s because, thanks to an arrangement called concurrent care, hospice is considered an add-on for eligible infants, children and young people up to age 21.
Rebecca MacDonell-Yilmaz, MD, is the medical director of HopeHealth’s Pediatric Supportive Services, which provides pediatric hospice. She explains why many families benefit from this extra layer of care and support.
Through pediatric hospice, you can get 24/7 help managing your child’s pain and other symptoms — including at home.
Hospice gives patients and their families access to a care team who specializes in managing complex symptoms such as pain, shortness of breath, and nausea — and who can help them feel better at any hour of the day or night.
That means if your child is struggling with their symptoms, you don’t have to wait for an appointment or head to the emergency room.
“We can have a hospice nurse go out to a patient’s home every day, if need be,” says Dr. MacDonell-Yilmaz. “We’re able to rapidly respond to what your child needs. We can get to you, and we can help in the moment if we need to.”
> Related: What is pediatric hospice care, and how is it different for kids?
Pediatric hospice can help avoid extra time at the hospital.
By bringing specialized care right to a child, pediatric hospice helps many families maximize their time together at home.
“Instead of coming to a clinic once a week for pain management, a child’s family can call or have a hospice nurse visit the home to make adjustments or refill meds,” says Dr. MacDonell-Yilmaz. “This is the essence of pediatric hospice care: We limit hospitalization and the time your child would otherwise spend in clinic.”
As a caregiver, you’ll get help understanding and preparing for what’s ahead.
Often, one of the greatest comforts that hospice offers families is information about what symptoms a child might experience, and help planning for what to do next.
“We know what is likely coming, and what medicine the child will need to achieve comfort at the end of life,” says Dr. MacDonell-Yilmaz. “We’ll prescribe medications to have in the home just in case these symptoms arise. That way families can call us, and we can say, ‘Now is the time to get that medicine out.’ For families, it feels much more controlled.”
Your child’s siblings will get special emotional support.
Hospice, including pediatric hospice, goes far beyond medical care. It includes emotional and spiritual support for the whole family. For siblings, that support comes at a critical moment in their young lives.
“Siblings are seeing a lot of what’s happening. We have social workers and child life experts who can help them cope,” says Dr. MacDonell-Yilmaz. “We also support parents with how to talk with their children and prepare them for what may happen next.”
> Related: Activities to prepare your child for the death of a loved one
You’ll have a partner for your child’s and family’s end-of-life wishes.
If your goal is to have your child remain at home at the end of life, you’ll need a pediatric hospice team by your side.
“I’ve had a number of patients who probably would have needed to be in the hospital if it weren’t for hospice, just for medication adjustments to keep them comfortable. We’ve been able to keep them home,” says Dr. MacDonell-Yilmaz. In a time of COVID and other hospital visitor restrictions, this means that loved ones who might be restricted from the hospital can be at your child’s bedside.
Throughout these crucial moments, families receive assistance in other important ways too. In addition to medical, emotional and spiritual support, that includes handling some of the legal requirements that follow a death at home, like communicating with the medical examiner and funeral home.
Above all, hospice helps families identify and honor their wishes for their time together.
Ask about pediatric hospice now.
The above are a few of the biggest reasons that families rely on pediatric hospice, but there are many others.
For example, hospice teams can also help with difficult medical decisions; coordinate between numerous care teams; and connect families with emotional, spiritual and even financial support.
In other words, whatever your goals are for your child, pediatric hospice can be an essential addition to their care. Many families add it even when they plan to continue their child’s disease-directed treatments, such as chemotherapy or dialysis, for as long as possible. They often discover that the extra support transforms their child’s and family’s quality of life.
“Don’t hesitate to reach out,” says Dr. MacDonell-Yilmaz. “We’re here to answer all of your questions, and help you figure out if Pediatric Supportive Services is right for your child.”