Compassionate Care Has No Age Limit

From athlete to patient in a strange land

Ellie’s diagnosis came out of nowhere. She was an athletic 10-year-old girl who was never sick, so no one expected her slight limp and sudden blurry vision to mean anything. Her tennis coach first mentioned his concerns when Ellie complained about not seeing the ball correctly, and within a few days Ellie was admitted to the local pediatric hospital in Florida. She was overwhelmed by an army of people with unknown roles. The abrupt transition was hard for Ellie, her parents, and her two younger sisters.

What made the experience even harder was her doctor’s institutional manner. At the beginning he didn’t understand that a 10-year-old girl wanted to be involved in her healthcare discussions. He wasn’t comfortable talking directly with her and insisted that she stay in the waiting room so that he could talk only to her parents. But Ellie wanted to hear what he had to say and to be able to ask questions. Ellie and her parents also wanted to be more assertive about her treatment, but the doctor insisted on following the hospital’s set protocol.

Searching for a patient- and family-centered approach

At this early and overwhelming stage of Ellie’s diagnosis, the family realized quickly that they needed to go in search of something more—an experience that would be more compassionate and a treatment plan that would fit their family’s needs better. Even though the first hospital specialized in pediatric patients, the practice did not understand that they needed a more family-centric approach. Ellie’s experience eventually helped change the way the hospital practiced medicine, and over time even changed the way their first doctor practiced medicine.

In the meantime, the family pushed to get Ellie’s scans sent to other institutions, even going so far as to pick up the scans personally and ship them around the country. With help, they soon found a great doctor in Boston, Massachusetts, who was completely focused on Ellie as a young girl with a frightening diagnosis. Dr. Mark Kieran became the family’s medical quarterback as well as a source of emotional stability. He helped the family navigate through the various available trials for Ellie’s cancer diagnosis, diffuse intrinsic pontine glioma. Ellie was enrolled in a vaccine study at a hospital in Pennsylvania.

Dr. Mark Kieran stayed involved with Ellie’s care all weekend, soothing everyone’s emotions while her parents were a wreck. When they asked how he could do so much for them, he replied simply: “I’m a father—I can put myself in your shoes.”

Finding comfort in compassionate care

One terrible weekend in Boston exemplified Dr. Kieran’s compassionate approach to medicine, and demonstrated how he “he becomes so entrenched with patients” as Ellie’s mom, Lisa, says. Ellie became extremely sick on a visit to Boston, spent several days in the ICU and it seemed she might have had only a week to live. Dr. Kieran coordinated all of her care, and even prepared the hospital and hospice near their home in Florida for her return. But more importantly for Ellie and her family, he stayed involved with her care all weekend, soothing everyone’s emotions while her parents were a wreck. When they asked how he could do so much for them, he replied simply: “I’m a father—I can put myself in your shoes.”

Dr. Kieran traveled to Florida to visit and spent time with her as she painted slowly and methodically at their kitchen table. Art had become an important therapy for Ellie as her muscles refused to do much else. Ellie loved everything she did in life and poured herself into her painting—so much so that a local art gallery hosted an exhibition of her work. On this day, though, Dr. Kieran just gently watched her, helped her open her paints, encouraged her artistic expression and stayed 100% focused on her.

As Ellie’s condition worsened, Dr. Kieran remained committed to caring for the whole family. On Christmas Day that year, Ellie passed away with her family by her side and clutching her favorite big kitty and blanket that swaddled her as newborn. To Ellie’s mother, Lisa, looking back on their journey together, Dr. Kieran had always been there for the family. She is grateful for what he did for Ellie while she was alive. And for Lisa the hallmark of compassionate care at any age is that he was 100% focused on Ellie and her family.

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