Johns Hopkins Palliative Medicine Helps with Illness and Trauma

A temporary tattoo developed at Johns Hopkins helps palliative care clinicians learn what is important to their patients.

Published in Dome - Dome May/June 2021

When Whitney Sussex woke up at Johns Hopkins Bayview Medical Center, she knew she had been in a horrible fire, one that had destroyed her home, broken her bones and burned her lungs and throat.

She soon found out it was far worse than she could have imagined.

The April 1 blaze in Cambridge, Maryland, had claimed the lives of her 8-year-old daughter, her 41-year-old fiancé and his 18-year-old daughter, “who was like a daughter to me,” says Sussex. Her two dogs died too.

The only survivors were Sussex, 32, who had jumped from a third-story window; and her daughter Lilly, 12, who had been assisted from the second story by police.

Lilly was treated and released at a local hospital, while the unconscious Sussex was taken by ambulance to the Burn Center at Bayview, where she soon woke to a tragic new reality.

On April 12, she transferred from Bayview to the intensive care unit at The Johns Hopkins Hospital, where she slowly gathered strength before undergoing bone-repairing surgery.

Sussex was isolated and in pain, unable to talk around the breathing tube in her throat. “I was at a loss, ready to give up,” she says.

Enter Lexi Friedlander, a social worker with the Johns Hopkins Palliative Medicine program, which features a team of physicians, nurse practitioners, nurses, social workers, spiritual advisors and pharmacists who help patients and families navigate serious illnesses and traumas.

Friedlander helped Sussex cope with her intense grief and made sure she had the support she needed to continue her physical and emotional healing after discharge, including connecting her back to her hometown providers.

“Because of COVID, I could only have one visitor a day in the hospital,” says Sussex. “Lexi became like a friend that I could count on. She kept up to date on how I was doing. When I needed to talk about something besides my shattered pelvis, she did that too. It was nice to have an outside person who would talk about stupid TV shows or just let me cry.”

Friedlander also arranged for Lilly to visit, even though Sussex was nervous about her daughter seeing her in such rough shape.

“Once Lilly saw me she felt better,” Sussex says. “She wasn’t as scared that she could lose me like she lost everyone else. Lilly survived, and she is the reason I didn’t give up and I won’t give up.”

The Broad Reach of Palliative Medicine

Palliative medicine at Johns Hopkins began in the Department of Oncology at The Johns Hopkins Hospital in the year 2000, six years before the American Board of Medical Specialties made it an official medical subspecialty. It grew after Johns Hopkins hired oncologist Thomas Smith as its first palliative care director in 2011.

Before joining Johns Hopkins, Smith founded and directed the palliative care program at the Virginia Commonwealth University Massey Cancer Center, turning it into a national resource that helped launch about 100 palliative care programs at hospitals and health care systems across the country.

His interest in palliative care grew out of his long-held belief that cancer treatment should not only remove tumors and destroy malignant cells but also help patients understand their prognosis and treatment choices.

“Palliative grew on the shoulders of hospice, taking some of the same principles of being centered on patient and family, treating the whole person and paying attention to social and spiritual concerns,” says Smith. “Why should you have to be in the last stage of life to have these things?”

Now, every Johns Hopkins hospital has palliative care teams for inpatients — including Johns Hopkins All Children’s Hospital — and several entities also offer outpatient clinics. Palliative medicine, which became a university program in 2019, has slots to train as many as six pediatric or adult physician fellows at a time, and conducts research on such questions as how best to communicate with patients about serious illness.

Smith's team developed a temporary tattoo for palliative care clinicians with questions for patients such as what is important to them and how do they like to get medical information. 

The palliative team at Johns Hopkins connects patients and families with care providers, often in collaboration with the Department of Spiritual Care and Chaplaincy. The work has become both more urgent and more complicated during the COVID-19 pandemic, when hospital visits are restricted and many outpatient appointments have shifted to telemedicine.

It is often confused with hospice, which is a component of palliative care that helps people live according to their wishes in the final months of their lives and when they are no longer receiving therapies to improve their condition.

Palliative care has a broader reach: It can support patients for years instead of months, and includes people like Sussex who are in treatment and expected to get better.

Palliative Medicine from a Distance

In March 2020, the COVID-19 pandemic forced many outpatient palliative care clinic consults to go from in-person discussions to a telemedicine format.

More than a year later, many patients and families are staying with the remote approach, even though it’s no longer required, because it removes the hassles of travel, especially for ill patients, while making it easier for far-flung family members to join the conversation.

Telemedicine also makes it easier for patients and families to connect with more than one member of the palliative care team at a time.

One morning in April 2021, for example, social worker Carla Jackson and nurse practitioner Nalynn Bellegarde, in different locations, connected remotely with patients and family members for five palliative care clinic visits.

Each conversation took an hour or more, and patients ranged in age from 53 to 92. Some of the conversations were with family members rather than patients.

One son, for example, said he was worried about his mother, who has dementia, but also about his father, who refused to accept outside help for his wife’s care. Jackson and Bellegarde told him about home health care options and gave him ideas for convincing the devoted husband to take much-needed time for himself.

In another discussion, a woman described her strong support system of family and faith as she waited to find out if her cancer had returned.

“A big part of what we’re doing is getting to know you and what’s important to you,” Jackson said to her. “A lot of people have strong feelings about what they don’t want in the future, like they don’t want to be tethered to machines, while others may be willing to accept a different quality of life in pursuing aggressive interventions. We try to prepare them for what they can expect, given their particular condition.”

The team encourages patients to create advance directives that spell out those wishes. “Patients feel like they don’t have control over many aspects of their disease, and this gives them some control,” says Bellegarde.

Bonds that Grow Over Time

Many palliative care patients are living with degenerative diseases like dementia or Huntington’s disease.

“Working with the palliative care team is an integral part of what we do,” says Johns Hopkins neurologist Jee Bang. “It’s not just the medical needs, but also emotional well-being, social well-being, family support and family dynamics. Palliative care can integrate that.”

An image represents the Johns Hopkins Dome publication.

Many of her patients meet sporadically with palliative clinicians over the course of years, reassessing care decisions periodically, and managing evolving symptoms.

“We educate staff that it’s OK to consult us early on,” says Friedlander. “I see more success when we’ve had the chance to meet the patient a few times.”

She met with Sussex nearly every day of her month-long hospital stay. As Sussex prepared for discharge, the social worker made sure the patient received visits from home health care workers, physical therapists and occupational therapists who are helping her move from using a wheelchair to walking on her own.

“She talked to me about different resources for grief and depression,” says Sussex, who has been living on the Eastern Shore with her mother and daughter since mid-May.

“Palliative care is whole-person care and support,” says Friedlander. “When you compound Whitney’s injuries with her pain, both physical and emotional, a patient like her can use all the support she can get.”

Championing Palliative Care

With backing from the Kendall Burrows Foundation and others, the Harriet Lane Compassionate Care program offers services, including support and bereavement groups for patients’ siblings and parents, to well over 200 families a year.

Silvana Barone with Ryan, Debi and Dave Burrows