When Dr. Sarah Friebert began offering palliative care to her young patients, families were sometimes skeptical about her intentions.
“When I started in this work, people treated me as if I had a T-shirt on that said ‘Dr. Death’ when I walked into the room,” she recalled.
Friebert, medical director of the Haslinger Family Pediatric Palliative Care Center at Akron Children’s Hospital, explained the purpose of palliative care and shared updates about the evolving field during a talk at the monthly Akron Roundtable on Thursday afternoon in downtown Akron.
Since Friebert launched the program a decade ago, the palliative care center has provided support to more than 1,700 patients with life-threatening or life-limiting illnesses.
The center is one of the nation’s oldest and largest pediatric programs devoted to providing supportive care to patients with cancer, brain injuries, muscular dystrophy, cystic fibrosis, complex congenital heart defects and other conditions.
The comprehensive services include coordinated medical, psychosocial, emotional and spiritual support for patients and their families, Friebert said. Unlike hospice care, it is not limited to patients who are forgoing life-prolonging treatments.
“Palliative care is not about giving up,” she said. “ ... It’s not about death and dying. It’s about life and living.”
The program focuses on symptom management and “helping families to live with their new normal,” she said.
Palliative care should play an even more important role in the coming years as federal health-care reform moves the nation from a payment system that financially rewards hospitals for keeping beds filled, Friebert said.
Palliative care and its coordinated approach to providing services improves patient satisfaction and decreases medical errors, she said.
Friebert said palliative care also can boost quality — a factor that increasingly is tied to payments to hospitals and other health-care providers.
To illustrate her point, she showed a picture of a young girl named Caroline who had a severe mitochondrial disorder.
Before getting services from the palliative care program at Children’s, the girl spent almost the entire first seven years of her life in hospitals.
By coordinating her care, Friebert said, the staff was able to help Caroline avoid the hospital for all but a few days during the following five years.
“She was able to really enjoy her life at home,” Friebert said.
The difference, she said, is getting rid of health-care “silos,” in which various specialists never talk to each other or take into consideration the whole patient.
“Although silos are very, very pretty when you’re driving through the countryside in Northeast Ohio, they’re not so pretty in health care,” she said. “... Palliative care is partly an answer to this.”
The next monthly Akron Roundtable will feature Dr. Thomas “Tim” Stover, president and chief executive of Akron General Health System.
The luncheon event will begin at noon Oct. 18 at Quaker Station, 135 S. Broadway, Akron. The cost is $20.
For more information or to register, visit www.akronroundtable.org or call 330-247-8682.
Cheryl Powell can be reached at 330-996-3902 or cpowell@thebeaconjournal.com. Follow Powell on Twitter at twitter.com/abjcherylpowell.