Stages of Acceptance

Johns Hopkins palliative care doctor Madeline Leong tackles big issues in her new play, Life Support.

Published in Dome - April 2016

This time, Karl is not getting what he wants.

The hard-charging businessman is used to getting his way. He traveled to Baltimore for a bone marrow transplant he thought would cure his cancer. But he’s getting sicker, and now his young doctor, Rachel Li, is approaching his hospital bed with an official-looking document.

“The form is ... in case of an emergency,” Li says. “It appoints a health care agent.”

Karl reads aloud: “If my death from a terminal condition is imminent—” He flings the papers to the floor, furious. “What is this? Pulling the plug? I’m perfectly healthy.”

When the scene ends, Madeline Leong, who has been watching the actors rehearse in a rented room of the Bromo Seltzer Arts Tower, applauds. The tensions between patient and provider are exactly what she hoped to capture in Life Support, the play inspired by her emotionally wrenching experiences as a palliative care doctor at The Johns Hopkins Hospital.

It appears to be the first play in the institution’s history penned by a Johns Hopkins doctor and performed on various Johns Hopkins stages.

Life Support will be staged through May 1 at The Johns Hopkins Hospital, Johns Hopkins Bayview Medical Center and the Johns Hopkins University School of Nursing. Leong hopes it will spark awareness and discussion about palliative care, a fast-growing medical specialty at Johns Hopkins and nationwide.

The simple and profound mission of palliative care is to relieve pain and distress for people with serious illnesses. Palliative care can be provided alongside curative treatments, such as chemotherapy. It is not limited to people who are close to death, although hospice is a form of palliative care specifically for patients near the end of life.

Both palliative care and hospice provide symptom relief and help patients achieve realistic goals, explains Thomas Smith, director of palliative medicine.

Smith says palliative care improves patient satisfaction, enhances quality of life and lowers health care costs. Yet many people, like those in Life Support, equate palliative care with giving up. 

In the play, Karl, 65, and his 35-year-old fifth wife, Lori, angrily resist filling out a Maryland advance directive that would outline treatment preferences and name a health care agent. “My husband is a fighter,” Lori insists to Li. “He fights every day! And you bring doom and gloom.”

Yet palliative care is about giving hope, not taking it away, says Rab Razzak, director of outpatient palliative medicine. “It’s about helping people make decisions based on their goals,” he says. “The starting point is what the patient wants.”

For example, says Smith, a patient might say she wants to stay alive to see her granddaughter graduate from college. Others might want to relieve a specific symptom. Or die at home. Or reconcile with a sibling.

Palliative care experts ask and listen. What is your understanding of your situation? How much do you want to know? Have you thought about a time when you could be sicker? What brings you joy?

The palliative care program at Johns Hopkins Medicine began in 2007 in the Johns Hopkins Kimmel Cancer Center. It now includes inpatient consults, outpatient care and provider education throughout Johns Hopkins. An 11-bed inpatient palliative care unit is scheduled to open in The Johns Hopkins Hospital in November.

Leong, 30, says Karl and his family are not modeled after anyone she has treated. “The thing that’s definitely real is some of the reactions I write about,” she says. “Just the other day, I said the word ‘hospice,’ and the person was not ready to hear that.”

By the end of the play, Karl has figured out what he wants. “If there’s no cure, I would like to see my home one last time,” he says. But the conflict doesn’t end quite yet. Like palliative care itself, the play has no heroes or villains, no easy answers.

“I think there’s something about live theater,” says Smith, who attended an early reading of the play. “You’re there. It’s immediate. It forces you to think about difficult issues. The play shows you a clinician who is trying her best and learning as she goes.”