Pediatric palliative care might be more than you think

When the palliative care team comes into a child’s hospital room, people sometimes see it as a sign of sorrow or defeat. The reality is quite the opposite.

Dr. Kelly Lastrapes explains how palliative care specialists can help at all stages of a medical journey and why kids and families want her team on their team.

What is palliative care?

Our team provides subspecialty care focused on improving quality of life for patients with life-limiting and life-threatening conditions and their families. We do this through managing distressing symptoms (like pain or nausea), facilitating great communication and coordination within a child’s care team, and helping with medical decision-making and goals of care. We’re not only focused on the medical diagnosis, but on the whole child, including their physical, mental and emotional health. We often say we’re an extra layer of support for families, especially in the hospital.

What’s unique about palliative care in a children’s hospital?

There’s a lot that’s unique and special about pediatric palliative care. I love that we celebrate caring for children and families as a team. Our interdisciplinary team includes physicians, nursing, social work, pastoral care and child life – all with training in palliative care to provide holistic support for the patient and family.

Our team works hard to bring all the important people in a child’s care team together when decisions need to be made. We want to make sure the child and family have the most comprehensive and cohesive information and recommendations.

It’s often thought that palliative care is only provided at the end of life. What other times do you help patients and families?

We serve kids who have all different trajectories. Some have chronic conditions they’ll live with for years to come, while others may be facing a new diagnosis or in the midst of fighting their hardest against a formidable illness. Ideally, we begin working with kids and families at the time of diagnosis. The earlier we can get to know and begin working with kids facing life-limiting and life-threating conditions and their families, the better. We’re here to walk hand-in-hand with them down the difficult path – not just at the end of the road, but for all the twists and turns along the journey. Care at the end of life is a very important part of what we do, but it’s most certainly not all we do.

What is your approach to caring for kids and families?

My approach is to listen and learn as much as I can about who that child is as a person – what their likes and dislikes are, how they act when they’re in pain or not feeling great, etc. I want to learn about their family too. What brings them joy and sadness? What are they worried about? Anyone who knows me well knows I ask lots of questions!

When I understand what kids and families are hoping for – what their big picture is – I can help them understand the medical paths before them and guide them toward what’s most in line with their goals. Our team can help translate the complexities of what they’re going through and make meaning of it. We are also here to love on them a whole lot and bring some joy.

Why did you choose to specialize in palliative care?

As an oncology fellow, I cherished being able to treat (and cure!) children with cancer and blood disorders. Even when we achieved the best outcome, however, I was still plagued by the suffering that occurred throughout treatment. I wanted to be an enemy of suffering, so I decided to continue my training to include a fellowship in palliative care. This training gave me a whole new toolbox to help kids feel the best they can through any illness or treatment.

What do you want families to know about your team and the care you provide?

We want to help.
We want to make every day a little bit better.
We want to know and celebrate your child and family.
We want to be there for you.

Do you find that families have a hard time when you come into a child’s room?

People have so many personal experiences and preconceived notions about palliative care. Sometimes the name palliative can be a barrier because families think we’re coming in to end treatment, or that there’s a secret about their child’s care or condition no one is telling them about. This isn’t the case at all.

We love the term supportive care because it describes what we do in a more truthful and holistic way. It’s not meant to pull wool over anyone’s eyes or misrepresent what we do. In fact, we want to be transparent and explain to families exactly why we’re here and how we can help them. Then we give them the grace and space to be open to it.

We have no secrets – we just want to get our foot in the door to show kids and families how we can help improve quality of life by supporting them medically and emotionally.