May 19, 2006

VUMC team seeks to grow palliative care movement

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Billy Hudson, Ph.D., is working on a compound that may prevent kidney damage caused by diabetes.
Photo by Anne Rayner

VUMC team seeks to grow palliative care movement

A team of parents, physicians, nurses and Child Life specialists from Vanderbilt traveled to Memphis recently for the Regional Initiative for Pediatric Palliative Care Conference.

The goal of the 11-member team, led by Brian Carter, M.D., and Mary Jo Gilmer, Ph.D., M.S.N., was to grow the pediatric palliative care movement in the Southeast with an intensive “train the trainer” type event for the 100-plus participants.

“We don't want these children to die an invisible death because no one wants to talk about it,” said Gilmer. “We want to learn more about supporting them during one of the most difficult times in a family's life.”

The latest statistics report that 50,000 children in the United States die each year due to terminal illnesses. Four years ago, seven hospitals across the country received seed money to start pediatric palliative care units, including the Monroe Carell Jr. Children's Hospital at Vanderbilt. Now they are training other health care workers at facilities such as St. Jude's Children's Research Hospital to develop and implement effective palliative care teams that provide a continuum of care that begins at diagnosis and can continue for years.

“No one likes to talk about children dying,” said Jessica Pasley, an information officer for VUMC's Office of News and Public Affairs and a parent who attended the conference. “But, we have to talk about it to figure out the best way to handle it for all concerned.”

Pasley and her family know firsthand the grief and tough decisions that come with end of life issues. Pasley's daughter, Jade, passed away in 2000 at age 2. The family is dealing with chronic health issues of Jade's twin sister, Jillian, and the emotional impact on older brother, Myles.

Topics for the conference and breakout sessions included effective methods to integrate pediatric palliative care education into busy health care settings, exploring creative ways for impacting upon everyday practice in pediatric palliative care and strengthening care teams.

“Communication among all involved groups is the key to understanding how to better deal with these issues,” said Pasley.

A big part of the conference was dedicated to breakout sessions that dealt with typical, yet provocative, situations in pediatric palliative care.

Small groups of health care teams and parents viewed different videotaped scenarios and had lively discussions about how the situation should be handled to ensure the best possible care.

“The biggest thing for me,” said Pasley, “was to realize how health care providers want to learn from us parents about what to do and what not to do.”

Pasley understands the different perspectives involved.

“The health care teams are trying to make improvements so that they treat their patients more like their own loved ones. At the same time, we parents understand that professionals need to protect themselves, because they deal with many sick children, not just our own sick child.”

Vanderbilt Children's Hospital will host another pediatric palliative care conference in October.