Lily Gillmor, 38, has made a career of caring for terminally ill children. As director of the pediatric palliative care unit for Transitions LifeCare (formerly Hospice of Wake County), Gillmor helps families through incredibly difficult situations. Here, she talks about why her work isn’t just sad. It’s also inspirational.
Q: Only about 5 percent of hospice patients are under age 65. What made you decide to work in pediatric care?
A: I’ve been a nurse for going on 12 years. I started out in patient pediatrics, and I found there were a lot of procedures that I felt were causing more harm than good. Pediatric palliative care hadn’t been created yet, so I left that setting knowing pediatrics was where my heart was but also knowing that wasn’t the right place.
I found hospice and palliative care at an institution in Nashville, and it had a pediatric program as well. I got a taste of merging those two worlds.
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Q: What’s the difference between hospice and palliative care?
A: It used to be much more that hospice comes in and the person dies. Now it’s really looking at how do we improve everyone’s quality of life to live the best life they have left, however much time that may be.
We have patients who have been with us two years and will be with us another two years plus. If they’re on the palliative side, there’s no strict designation. They can be with us for as long as they want to.
Q: What kind of reactions do you get when you tell people what you do for a living?
A: It brings down the room. People say it’s horrible, but it’s really not. Absolutely with every setback and every death, it’s incredibly difficult, and it’s a loss that none of us can imagine. But at the same time, the love we get to see, the commitment – you don’t see a greater love than that between a parent and a kid. It’s such an honor to be invited into that world. Everyone who does this work is drawn to it. It’s a true passion and dedication.
Q: Tell us about the patients you care for.
A: We have about 50 kids, and the majority of them are at home. The age range is across the board. We have families we will consult with prior to the birth of a child ... and we also have patients up to age 19. As far as diagnoses, the majority are neurologic and genetic disorders. Second to that is oncology.
Q: How is caring for children different from caring for adults?
A: If you ask us, it’s super fun. Even when kids are sick, they’re still kids. So whereas an adult might be complaining because this or that hurts, kids will say, “I just want to go play.”
Q: Do you get to know each patient?
A: There’s no point in us going if we’re just one more person to bother the kid. One of the things our family support specialist will do is just hang with a sibling. Having that support for the siblings is tremendous and has a big impact.
We do a lot of fun things, too, and are big Pinterest fans. We had one family who just wanted some normalizing of their life ... and so we figured out how to take this child who couldn’t sit down and paint a picture, how do we help them create art? With pediatric care, there’s so much, “You need this, you need that.” Being able to say, “What do you think you need?” and have the family direct us is tremendous.
Q: Why is your work so important to you?
A: We all have our time and for some people it may be just six months or six weeks versus 90 years, but it doesn’t discount the fact that I feel every person should have the same access to a full life. Pediatric palliative care and hospice care really help advocate for these kids and these families to live their lives as they want.
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Lily Gillmor – Tar Heel of the Week
Born: July 5, 1979, in Philadelphia
Education: Studied nursing at UNC-Chapel Hill
Family: Married with three children: 9-year-old son, Cameron; 5-year-old daughter, Maxie; 3-year-old son, Miles
Fun fact: She lives in the house she grew up in.
Occupation: Director of pediatric palliative care at Transitions LifeCare