Emma Sarfity gives a hug to Justin Baker, MD, chief of the Quality of Life and Palliative Care Division. “I don’t think you can truly understand what they do until you’ve experienced it,” Emma says, “but the relief they bring sometimes is amazing.”

The Best Day Possible

St. Jude infuses new energy into the term “quality of life.”

By Elizabeth Jane Walker; Photos by Peter Barta

Imagine having a team at your beck and call whose sole purpose is to ensure that every day is your best day. At St. Jude Children’s Research Hospital, Justin Baker, MD, leads such a group. To 20-year-old Emma Sarfity, Baker and his colleagues have attained heroic stature.

“I tend to think of Dr. Baker as Superman,” Emma says with a smile, “because he swoops in and fixes everything.”

After undergoing a bone marrow transplant last spring, Emma struggled with pain, exhaustion and depression.

“It was a really hard time,” she says. “Mentally, emotionally and physically, I was just tired. To drag yourself out of bed is a lot when you’re going through that kind of experience. Then Dr. Baker came onto the scene. He told me, ‘Everything is going to be OK,’ and within the hour, things started to get better.”

Baker, chief of the St. Jude Quality of Life and Palliative Care Division, heads the hospital’s Quality of Life for All (QoLA) team. The 10 members of this multidisciplinary group worked with Emma and her medical and psychosocial teams to create a holistic, individualized plan for her.

“We’re able to emphasize patients’ quality of life while they’re going through the rigorous battle of fighting cancer,” Baker says. “By working diligently to make every day the best day it could possibly be, you improve the patient’s outlook. That, in turn, can improve survival.”

We have become the go-to place for integrating palliative care into pediatric oncology.

Justin Baker, MD, Chief, Quality of Life and Palliative Care Division

 

The other 23 hours

Initially, Emma was taken aback by the prospect of meeting with Baker and his colleagues.

“I was a little confused that they thought I needed to talk to someone about the quality of my life,” she explains. “But right off the bat they were so helpful.”

Emma shared several issues that had caused distress, but that she had been hesitant to share with her medical team. Those issues included high pain levels and gastrointestinal problems. A debilitating fatigue caused her to dread the brief, daily trips from her St. Jude housing facility to the hospital.

“I hadn’t wanted to bother the head of bone marrow transplant with problems that might seem small to him. These were normal side effects. But to me, those symptoms were kind of the end of the world,” she says. “My regular doctor would see me for maybe an hour. But now I had a team whose only concern was the other 23 hours of my day. That’s really special.”

The QoLA team worked with members of Emma’s medical team to increase her pain medications. Baker arranged an appointment with a gastroenterologist and even accompanied Emma to the checkup. The St. Jude QoLA team also arranged for a nurse and physical therapist to travel to Emma’s Target House apartment so she only had to visit the hospital twice a week.

“When they intervened, it was like a miracle,” Emma says. “So much was lifted off my shoulders.”

Quality of Life for All team statistics for providing multidisciplinary, community-based care for children with complex, chronic conditions

Boosting survival rates

The QoLA team has as their program’s mascot a cheerful koala bear. In the past few years, the number of children, teens and young adults served by the group has exceeded 1,000. In the near future, Quality of Life experts will be embedded into each of the hospital’s clinics, and their services will be extended to every patient from the moment of arrival at St. Jude.

 “That’s quite different from other institutions throughout the U.S.,” Baker says. “We want this to be part of routine cancer care—a component of their daily care plan—from the point of diagnosis forward.”

Symptoms, psychosocial issues, care coordination and even communication and decision-making will be addressed by experts in palliative care.

“We’re taking the excellent care that our kids already receive, and we’re adding an additional layer to further improve outcomes,” Baker says.

“At St. Jude, our survival rates are high, but how do you take it to the next level? I think it’s through these incremental advances—focusing on making every day be the best day it can possibly be,” Baker continues. “While patients are going through these battles, we work with them so that their outlook can remain positive, their family unit can remain as intact as possible. And their psychosocial, emotional and symptom concerns are addressed as key priorities.”

Patient Damaya with Lisa Clark, Katie Parker, Lizzie Barnwell

Ten-year-old Damaya Smith checks in with members of her Quality of Life team (from left) Lisa Clark, PhD; Katie Parker, RN; and nurse practitioner Lizzie Barnwell.

The comforts of home

Four years ago, St. Jude partnered with community palliative care providers to offer the QoLA Kids Home-based Care Program. Patients served by the QoLA team can now receive much of their routine care in their homes or housing facilities through this program. Nurses draw lab samples, while social workers may sit at the kitchen table to discuss concerns. A child life specialist provides fun and educational activities. A spiritual care provider offers a nuanced layer of support.

“If you can think of something that would make your day better,” Baker tells families, “you call us and we will work to get ’er done.”

Often, teen patients dislike early-morning clinic visits. A teenager who has been texting or tweeting until 3 a.m. may not relish the prospect of arriving at the hospital for a 7 a.m. blood draw and then waiting a couple of hours for lab results. The QoLA Team can go into housing and obtain that sample, enabling the patient to grab a few more hours of sleep.

Many patients long for the sense of normalcy that comes from attending school with their friends. The St. Jude team can go into the school to adjust pain pumps, obtain lab samples or conduct assessments related to physical activity.

“That way, we don’t disrupt the thing that’s most important to the child on that particular day,” Baker explains.

Many patients served by the QoLA Team live outside the Memphis area. For these children, St. Jude staff identify health care professionals in the area who can perform the requested tasks. About 100 St. Jude patients in the U.S. and around the globe are currently receiving these kinds of home-based services.

“We are also on call 24/7 to these families to answer questions and offer assistance,” Baker says.

When they intervened, it was like a miracle. So much was lifted off my shoulders.

Emma Sarfity, St. Jude Patient

 

Multi-faceted service

In addition to its home-based offerings, the St. Jude QoLA team offers clinical trials that look at ways to improve the quality of life of children with life-threatening diseases. These studies explore topics ranging from communications and ethics to symptom control and end-of-life planning. To share their findings, Baker and his colleagues have published more than 100 manuscripts and book chapters and provided nearly 300 national and international workshops and lectures.

“We have become the go-to place for integrating palliative care into pediatric oncology,” Baker says. “Nationally, there has been a cultural shift from avoiding the topic to finding ways to integrate it in such a way that it comes out of the pores of the institution.”

Twenty-four bereaved St. Jude parents have undergone training to offer high-quality educational sessions for the hospital’s clinicians. St. Jude nurses receive 25 hours of palliative care training, which includes extensive input from these parents. The parent educators also participate in training all clinical fellows and serve as panelists for bereavement sessions at the hospital’s annual Day of Remembrance. This event provides seminars, panel discussions and a sense of closure to St. Jude families who have recently lost children.

Psychologist Lisa Clark, director of Bereavement Services, creates proactive bereavement care plans, pairing bereaved parent mentors with families who are faced with imminent loss. Clark also identifies local resources to assist bereaved parents when they return home, and she provides resource guides tailored to individual families. A series of videos created by bereaved St. Jude parents addresses many of the issues encountered by those who have experienced loss.

Graduation rate rises

In the last couple of years, about 30 percent of patients in the Quality of Life program have become “graduates” who have successfully completed therapy.

“That’s the greatest experience we have with our patients and families,” Baker says. “And that number is increasing every single year.”

Emma says her chief regret is she didn’t call upon Baker and his colleagues sooner.

“I don’t think you can truly understand what they do until you’ve experienced it,” she says, “but the relief they bring sometimes is amazing.”

From Promise, Winter 2017

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