When I think about palliative care, I think about the phrase, “Live Fearlessly.”
I know that might be the opposite of what comes to mind for many people. Some might only associate it with death or dying, or of hospice care. What comes to mind when you think of palliative care?
I think “Live Fearlessly,” because that’s a common theme I have seen in my experience as a pediatric palliative care consultant. I see families live every day to the fullest and make the most of each moment. They inspire me with their powerful belief in the spirit of their child, no matter the diagnoses or challenges in front of them.
While hospice or end of life care can certainly be included in palliative care (when it’s appropriate for the child and family), that’s a small part of the whole picture. When you consider palliative care from a broader perspective, you’ll see that it can also help children and families in the following ways:
Palliative care means you have someone to talk to.
When I meet a family and child for the first time, I always start by listening. Even very young children and babies can have complex medical histories, so I let the family and child tell me about their journey, in their own words, and share as much as they’re comfortable sharing. It’s important for me to understand their perspective and listen to what values are important to them. What has made an impact? What’s been really difficult? How did they make it through? What are their hopes for the future? Who do they consider their support system to be? I consider myself an advocate for each child and family and make sure their thoughts, fears, and dreams are recognized.
Palliative care is holistic.
Palliative care is a support system for the whole family and for the whole child. I help parents and children consider options for physical care and comfort and their emotional well-being. I ask questions like “What does a great life look like to you? What goals do you have for your child and for your family?” There is not any right or wrong answer, but their responses help me understand what values are important to them. While palliative care is often considered to be only physical care, it’s also very much about communicating and working through emotions, helping families and children navigate difficult decisions and challenging situations.
Palliative care helps you learn about and understand your options.
Everyone comes into palliative care at a different place. I help answer any questions parents and children have and make sure they understand the answers our team provides. Palliative care helps coordinate the many areas involved with care. Are all of the providers on the same page? Do we need to do something we’re not? Is the child comfortable? Are they in pain? Does everyone have the information they need to make the decisions they need to make? We talk about medications and integrative therapies we can use to help the child to be more comfortable. There are so many ways to support each child and the more I know, the faster I can connect the child with life enhancing services and supports.
At ChildServe, our mission is to help kids with special healthcare needs live a great life. Palliative care is an option parents can choose to support their goal to help their child live the most comfortable, healthy life possible.
ChildServe improves the health and well-being of more than 4,500 children each year through specialized clinical, home, and community-based programs and services. We serve children with developmental delays, disabilities, acquired injuries, and other special healthcare needs.