The Many Faces of Empathy

This first installment in a series on compassionate interactions with patients features (from left) Queen Stewart, Jeremy Epstein and Katrina Smith.

Illustration by Bruce Morser

Published in Dome - Dome November/December 2018

This series presents compassionate interactions with patients. Each story captures an employee performing an act of kindness or thoughtfulness that profoundly affects patients and their loved ones — often in unexpected ways.

This first installment features Queen Stewart, hepatitis C clinic social worker; Jeremy Epstein, internist and assistant director of the ambulatory education program; and Katrina Smith, quality assurance specialist for cell processing and gene therapy.

Coffee Date

As a case manager in the hepatitis C clinic at The Johns Hopkins Hospital, Queen Stewart carries some grim statistics: The infectious disease kills more Americans than any other one reported to the Centers for Disease Control. In 2015, some 20,000 Americans died from hepatitis C-related causes.

Stewart also knows that clinic patients often miss their follow-up appointments. Lack of transportation or child care, homelessness, depression, alcoholism and drug use are all barriers.

Her case management work — such as calling insurers and processing forms, becomes challenging when patients think taking a week or two off from seeing a provider won’t affect their health.  

But, more important, missing these appointments can delay recovery. To be effective, each dose of the hepatitis C treatment must be taken daily for at least eight weeks. Patients need to come in every week for routine bloodwork and a urine sample to ensure that they’re responding to the drug without complications.

So, when these patients don’t return with regularity, Stewart uses her own tactics to coax them back to see their doctors.

She describes a novel approach she used for one wayward patient: “Instead of reminding her to come in for a doctor’s appointment, we reminded her to come in for her ‘coffee date.’” Every week, following her doctor’s visit, Stewart and the patient would head to the cafeteria just long enough for a cup and a catch-up about the East Baltimore neighborhood they both know well.

Stewart says that the patient, now in her 60s, is a grandmother who loves spending time with her family. She also journals, enjoys reading and helps others in need of moral support. But having left her job because of her health, she continues to struggle financially.

That’s why, says Stewart, “whenever my coffee date and I meet, I make her aware of the many free resources available to people over age 55 with minimal income. Many people don’t even know they exist.”

Thanks to one of those resources, Stewart’s coffee date and her family received a free Thanksgiving dinner, which arrived with a basket full of holiday trimmings. Stewart has also encouraged her coffee date — and other patients — to explore a resource that covers the cost of education to earn a GED certificate.

The social worker meets with about 35 patients every month to have similar conversations. She helps them secure funds for costly treatments, transportation and, sometimes, even housing.

On several occasions, when Stewart learns about a patient’s homelessness, she’s dashed to a grocery store on her lunch break to buy bread, peanut butter and jelly. Or, she’ll stop at her church’s food pantry to pick out a few items to bring back.

“As a hep C social worker, I see a lot of people in bad shape,” says Stewart. “If drug use is a factor, we don’t judge; we talk to them about it to help them find ways to lead a more successful life. If the medication isn’t approved, we work with the insurer. We encourage these folks to get additional care they may need and help them with transportation to get to those places.”

Because most of these patients live on fixed incomes, Stewart feels compelled to help by seeking out funds for them. And she continues to raise awareness among Johns Hopkins clinicians about the disease and the psychosocial challenges of treating the clinic’s population.

Stewart recalls a retired woman in her mid-60s who was living on a fixed income when she was diagnosed with cancer in addition to hepatitis C. The medication cost $30,000. Though the patient had health insurance, it was limited to $1,000 per month. Stewart sat down with her to discuss this new “challenge.” “I never use the word ‘problem,’ she notes. ‘Challenge’ offers a better outlook.”

Ultimately, through a collaboration with the hospital’s pharmacy assistance program, the client received the aid she needed. Stewart found additional help through a medication copayment assistance program. Now, through the Johns Hopkins Patient Assistance Program, other eligible patients in need of medication assistance for hepatitis C need only make a copayment of $10 or less per treatment.

As for Stewart’s coffee date? That’s been going on for five years. Although the patient no longer needs weekly treatment, the encounter — which now may take place only twice a year — is something the social worker looks forward to. “The reward for me is being able to meet her — and other people — where they are and give them love and extra emotional support,” she says. “It’s the essential component in helping them become successful in their care.”

Unexpected House Call   

Try as he might, Jeremy Epstein found it impossible to carry on an intelligent conversation with the patient about to be discharged from the hospital. Her speech was slurred, and her eyes darted whenever he asked her a question.

An ambulance had brought the middle-aged woman to the emergency department, after she was found at home, incontinent and not making sense. When she was transferred into his care on the medical unit, Epstein — then a first-year internal medicine resident — was worried that she had a serious infection of her central nervous system, perhaps encephalitis or meningitis. But the cerebrospinal fluid from a lumbar puncture found no infectious organisms. So, Epstein’s diagnosis was that her altered mental state was caused by alcohol intoxication and then withdrawal, with possible withdrawal seizures.

In a couple days, her physical state had improved enough for discharge. Looking at her chart, Epstein saw that the woman lived with her mother in a neighborhood not far from The Johns Hopkins Hospital. “We were trying to figure out if the patient was acting the way she normally does or if she’d had a brain injury that changed her baseline personality,” he explains. “We needed to be sure that at the time she was discharged, she was in as good a state as when she came in.”

When Epstein phoned the patient’s mother, she told him her daughter’s behavior sounded typical, but she couldn’t be certain. Then she said she wouldn’t be able to pick up her daughter because she was too afraid to leave her neighborhood at night, and the day was quickly turning dark.

For his part, Epstein had been on hospital call the entire night before and had assured his wife he’d be home for dinner. That still seemed likely, as the woman in the examining room was his last patient. 

To save time, he wheeled her to the hospital’s main entrance to await a taxi a receptionist had arranged — part of a program to facilitate patient discharges when family or friends were unable to pick them up. Escorting the patient also gave the physician a few more minutes to evaluate her. As the taxi pulled up, Epstein repeated her home care instructions, looking directly at the patient. Dismayed, he doubted she’d understood.

The next step was clear: Climbing into the cab, he settled next to his patient and gave the driver her address.

On arrival, the young doctor helped her out of the cab, up the stairs and onto her porch, where the patient’s grateful mother confirmed that her daughter’s behavior was not unusual for her. “The entire interaction lasted 15 minutes,” Epstein recalls, but it has remained a touchstone — a reminder about the power of seeing patients interact with family members on their own turf.

Now, five years after that encounter, as he helps to direct outpatient medicine in the Department of Internal Medicine, Epstein teaches new interns how to make coming to the clinic a better experience for outpatients. He has already improved the process, based in part on the house call he didn’t expect to make when he was training.

In searching for trends in the appointment database, Epstein realized that certain patients had a different provider each time they came to clinic. Most of the patients were elderly and, like the patient he’d escorted home, had transportation problems. Some came late or missed appointments altogether. Some visited hospital so frequently that their “own” doctors weren’t always there.

Knowing how important continuity is for older, frailer patients, Epstein has tailored a system that works for them. To reduce the likelihood of problems with late arrivals, office visits last two hours, rather than 45 minutes. Additionally, each patient always has the same intern. It’s a win-win formula: The longer visits so endear the interns to their patients that they work harder to be there. And for overall continuity, Epstein makes sure he’s always the supervising doctor when these patients come in.

Last, as a safety net, he has added the option of making home visits when circumstances suggest them. He says his experience as an intern escorting the patient home continues to inform him.

Not long ago, he visited a household where three generations, including a newborn, shared a single bedroom with mattresses on the floor. Conditions like these, he says, foster the spread of germs and sleeplessness, not to mention the psychological toll a lack of privacy brings.

Epstein reminds new interns and residents that the stigma generated by being a chronic “no-show” patient is often unfair. “Most of these patients don’t own cars, and Medicaid transport is notoriously unreliable,” he says. “Many people live chronically on the edge. It’s a terrible way to live, even without getting sick. We owe it to patients to do whatever we can for them.”

Turtles and Tortoises on the Side

Growing up, animal lover Katrina Smith had hoped to become a veterinarian, but poor grades in organic chemistry blocked her path to veterinary school. Instead, after serving in the Air Force, she used her bachelor’s degree in biology to become a cell manufacturing technician at the Johns Hopkins Kimmel Cancer Center in 2002.

Now, as a quality assurance specialist at the hospital’s GMP Biologics Core (cell processing and gene therapy facility), she oversees the culture and expansion of cell lines for therapeutic products used in patients enrolled in clinical trials at Johns Hopkins.

In her spare time, however, she serves as the adoptions coordinator for the Mid-Atlantic Turtle & Tortoise Society (MATTS), an animal rescue organization for unwanted or displaced turtles. Each year, the group’s volunteer members help find either foster care or permanent homes for roughly 90 animals whose owners must give them up.

Smith says a surprising number of these owners are patients. People sometimes part with turtles and tortoises because they may harbor salmonella or other germs that can infect humans who become immunocompromised by HIV, cancer or from various therapies.

Because Smith works in the cancer center at Johns Hopkins, it seems only natural that some patient appeals for adoption would come her way.

She recalls that her first hospital-based request came from a man whose father faced a kidney transplant. When Smith learned that the son had no luck finding a new spot for his dad’s beloved pet, she took the turtle into her own home for two years. Eventually she secured a permanent home with a fenced-in, backyard pond for the animal.

Although the quality assurance specialist never thinks of herself as emotional — “I’m just someone who wants to see animals taken care of” — one of her adoption stories suggests otherwise.

It took place after she agreed to look after five Russian tortoises that belonged to a woman with terminal brain cancer. When Smith drove to her home to pick them up, she also helped the patient clean their cage. “I would have been happy to do the whole job for her,” Smith recalls, “but she really wanted to do this last thing for her pets.”

She describes a poignant scene: The owner, a pale woman wearing a bandana on her head, kneeling beside Smith to help scrub the pets’ large kiddie pool one last time. “I was fine until I left the house,” Smith says, “and then I couldn’t stop sobbing.”

When it comes to her day job, Smith often thinks about the cell lines she oversees as if they were small animals. “You’ve got to give them the right food and environment,” she says, noting that the stakes in managing them correctly are incredibly high.

Some patients would say the same of her animal rescue work. It provides an emotional lifeline for those patients whose lives are upended by illness, then further shaken by the idea of losing a beloved animal friend.

“I can give reasonable assurance to a person who’s grieving the loss of their pet,” Smith says. “I can tell them that we can make sure that turtles in our care will have the best life possible.”