Working with palliative care patients is “greatest honor”

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Alisha McGuire keeps a photo of a former patient tacked onto the wall of her office.

It’s a reminder of a young girl, a sad but resolute family and a moment in time that helped show McGuire the path she was destined to take.

McGuire is a licensed clinical social worker on the palliative care team at Riley Hospital for Children, a position she has held since August 2021.

She came to Riley from a hospital-based social worker role in Phoenix when she realized pediatric palliative care was her passion and Riley was the place she wanted to be. It didn’t hurt that her husband, Darren, was from Indiana.

The two met at a Dave Matthews Band concert, and the spark was instantaneous, she said. They are expecting their first child any day now.

But back to that picture in her office. McGuire was working in the hematology/oncology unit of a community hospital when she met a patient and her family who were transitioning into palliative care when it became clear that there were no more curative therapies for the child’s cancer.

Palliative care focuses on improving the quality of life for individuals and families facing serious illness or injury. It is not limited to end-of-life care like hospice but is designed to help people live as well as possible for as long as possible.

“I got to know this family and saw how they made beauty in a really devastating time,” she said. “That was when the switch flipped for me – seeing how they made such meaning while in palliative care. She is a constant reminder of why I do this work.”

McGuire was recently honored for her work outside the hospital as an advocate for pediatric palliative care through the Social Work Hospice & Palliative Care Network. The national organization recognized her with the Emerging Leader Award earlier this month at its conference in Minneapolis.

Riley palliative care advanced practice nurse Amy Haskamp joined former Riley palliative care physician Dr. Adam Hill and others to nominate McGuire for the award.

In addition to the numerous leadership roles she has assumed within and outside of the organization, she recently completed an 18-month leadership fellowship in pediatric palliative care through New York University.

“Through her role at Riley Hospital for Children at IU Health, Alisha has demonstrated the vital role of the palliative care social worker in developing and leading palliative care for seriously ill children,” Haskamp wrote in her nomination letter. “Alisha serves as a highly respected colleague across the hospital and a mentor to new social workers.”

Describing her as a “truly amazing colleague,” Haskamp said McGuire has much more to contribute in the palliative care space.

McGuire grew up in New Jersey, close to New York City, but ask her if she supports the New York Knicks or the Indiana Pacers in the NBA Eastern Conference finals, and she demurs.

“I’m not really a basketball fan, which I’m learning is a big thing in Indiana,” she laughed. “I’m more of a Mets and Giants fan. But it’s nice to see there is the same pride here in sports teams.”

A graduate of Rutgers University, with bachelor’s and master’s degrees in social work, McGuire was drawn to pediatric palliative care as her career began to blossom.

“I started to get more exposure to serious illness and end-of-life care, and I felt I could be my best clinical self in these spaces when families invited me to walk those journeys with them,” she said.

The beauty of palliative care is that it treats the person holistically, she said, and Riley employs a multidisciplinary approach that involves a physician, advanced-practice nurse, social worker, chaplain and child life specialist, among others.

“It is really hard to see a family hear about a diagnosis that is life-limiting or life-threatening, for them to hear we can no longer pursue a curative path and are shifting toward comfort,” McGuire said.

“That’s hard, right, it’s really, really difficult to sit with families in those spaces getting that news. And now, expecting a baby myself, it gives a totally different perspective. As hard as that is, it is the greatest honor for me to have families trust me to walk that journey with them.”

To help families find meaning in some of their darkest days is something she can’t really put words to, she said.

“One of the most rewarding things in my career is helping families find peace and joy in times where you think that can’t exist alongside sorrow and sadness and grief.”

Outside that personal space with patients and families, she works to make a difference for them in a bigger way by amplifying their voices on a statewide and national level, she said.

“It is really hard to think that children experience serious illness and sometimes die, and because it’s hard, there are still so many gaps that exist in our country. So, to be able to carry those stories in the hope of improving that experience means a lot.”

Among the initiatives she is working on are bringing grief education into schools, improving support for children and families experiencing serious illness and bereavement, and creating memory-making kits for patients who are home on hospice.

For a career such as hers, self-care is vital to providing the best care, she said. And while it’s a practice, not perfection, she has a few ways she likes to recharge.

“I snuggle with my dog (GrooGrux), sometimes veg out on TV, and spend time with my husband. And everyone here knows I’m a big Dave Matthews fan,” she said, adding that she has the singer’s autograph tattooed on her arm. “The summer tour season is my reset button.”

Not one to seek the spotlight personally, McGuire is happy to shine a light on the profession, on her peers, and on the work that needs to be done in pediatric palliative care.

“It’s a humbling and overwhelming experience to be recognized for something that has really become such a passion.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org