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VOL. 132 | NO. 117 | Tuesday, June 13, 2017

St. Jude Hosts Pediatric Palliative Oncology Symposium

By Michael Waddell

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St. Jude Children’s Research Hospital welcomed 325 physicians, nurses and psychosocial professionals from around the world in recent days for the first Pediatric Palliative Oncology Symposium, the largest conference of its type that has been held in the U.S.

Dr. Justin N. Baker is Director of the Division of Quality of Life and Palliative Care at St. Jude. (Justin Veneman)

 

The event, held June 8-9, featured an international panel of guest speakers, and attendees came from 19 countries and 33 different states.

Each year, approximately 120 to 140 St. Jude patients die, out of a total of about 550 patients.

“One of the things we talk about in the palliative oncology community is that we’re often isolated or part of a small team, so to come to a place where everyone does what you do is very energizing, inspiring and motivating,” said Dr. Melissa Mark, pediatric hematologist-oncologist from Cincinnati Children’s Hospital.

St. Jude’s palliative care has evolved over the past 10 years. When it started out, it was just about the clinical provision of care for a small number of patients who were mostly at the end of life. End-of-life service, measured from when the palliative care sees a patient until when that patient died, has grown since then from 42 days to more than six months.

“So we’re getting involved much earlier,” said Dr. Justin N. Baker, director of St. Jude’s Division of Quality of Life and Palliative Care and leader of its Quality of Life for All, or QoLA, team. “More than 60 percent of the patients we see have a primary goal of cure at this particular point. We’re much more about a true quality-of-life team where our motto and the whole purpose of our being is to help every single patient have the best day they could possibly have that day.”

All St. Jude staff must complete educational training in palliative care. In 2010 and 2011, through the hospital’s Bereaved Parent initiative, bereaved parents began to be involved with strategic planning, and they created eight guiding principles along with a bereaved parent mentoring program.

Then in 2012, the QoLA Kids program was formalized, giving patients the ability to receive care at home instead of having to come to the hospital for every procedure.

“The cool part about is it is Le Bonheur and St. Jude both filter patients into this team, and we have a combined education or fellowship program,” said Baker. “We’re all working together, and is a really great process of collaboration in a way that for Memphis is not that common.”

One of the highlights of the symposium was a role-playing session with parents of children who died a few years ago. The parents worked with conference attendees on how to properly deliver bad news to patients’ families, which can be a struggle for some health care professionals.

“To have the parents here interacting on the ground was really wonderful and valuable,” said Dr. Aimee Thompson, psychologist with Cincinnati Children’s Hospital. “At our table we had people from a number of different disciplines, so to hear different perspectives and to learn from one another was really important.”

Few of the attendees had ever been through a one-on-one workshop with parents before. Feedback described the sessions as incredible, with many attendees planning to go back to their institutions and implement a palliative care team.

“We have a group of bereaved parents who have been integrated into every aspect of what we do as an entire entity and also throughout this entire symposium,” said Baker. “They are teaching doctors and nurses communication. They are doing role-play where they are the parent talking to these physicians about how they might communicate better. They might be able to use language in a way that may help other parents and patients more effectively understand what going on,”

Another symposium session involved music therapy’s impact on patients with progressive, incurable cancer.

“What we know is when Amy [Love, St. Jude’s music therapist] comes into a room and is able to provide really beautiful music therapy, everything just slows down. There is deeper breathing, less pain, and the room calms down as a whole,” said Baker.

Love built a stethoscope with a microphone in it, and she will record the child’s heartbeat and then make up a personalized song for that particular patient, sing and record it for a family with the heartbeat as the percussion.

The hospital says the inaugural Pediatric Palliative Oncology Symposium was such a success that next year’s event is already in the planning stages.

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