During the final hours of her life, 7-year-old Catie O’Brien issued a poignant, yet powerful, mandate to her grief-stricken parents.
“Do everything you can for St. Jude,” said the little girl, “so that no other family has to go through what we went through.”
During the past eight years, Christine and Kevin O’Brien have taken that command to heart. They now serve as educators in an innovative program at St. Jude Children’s Research Hospital. The O’Briens help nurses, doctors and other clinicians master palliative care concepts and skills. It is the first such program to use highly trained bereaved parents as educators.
“We could spend the rest of our lives holding Catie’s picture or her favorite stuffed animal and just being sad,” Christine says, “or we could make a difference. And hopefully that difference will someday lead to a cure.”
Parents as faculty
During medical and nursing school, students learn about physical ailments and medical procedures. But scant attention may be paid to the art and practice of compassion. St. Jude addresses that component of care by offering palliative and end-of-life programs that enlist bereaved parents as faculty members.
Every clinical nurse at the hospital completes 25 credit hours of training in palliative and end-of life care. All clinical fellows also undergo training to enhance their communication skills. Both programs use role-playing sessions and honest conversations with bereaved parent educators.
The 24 parents who take part in these efforts go through rigorous training so that they can understand and communicate the objectives of each educational session.
These volunteers may also help with strategic planning and mentor other St. Jude families. The parents lead sessions as part of the hospital’s annual Day of Remembrance, a workshop to give bereaved families tools for the healing journey.
Many of the parents also took part in the hospital’s 2017 Pediatric Palliative Oncology Symposium, which focused on the care of children with cancer and their families. The conference attracted health care experts from around the world.
“Our parent educators are making a difference for staff as well as for families who are experiencing something that nobody would wish on anybody,” explains Justin Baker, MD, chief of the Division of Quality of Life and Palliative Care.
‘Leaning in’ to difficult conversations
During a recent training session, Mary Lorino, RN, who works in the hospital’s Intensive Care Unit, says she gleaned tips she can use in her practice every day. Lorino says she appreciated the ability to discuss delicate topics.
“We could ask the questions we’ve always wanted to know,” she says. “Like, ‘Are we doing enough? Are we where we need to be? Are we asking the right questions? Are we addressing you in the right way? Is hugging appropriate?’ Having that open and honest communication about how we can better serve families was huge.”
Jonathan Miller, MD, PhD, a clinical fellow in Oncology, says he is humbled, inspired, encouraged and challenged by the perspective provided by parent educators.
“The sessions challenge us to ‘lean in’ to the difficult conversations that are pivotal in providing holistic care to patients,” he says. “The programs also emphasize the importance of a multidisciplinary approach that involves not only the family but nurses, social workers, Quality of Life staff and others.”
Giving back, finding meaning
Baker says many of the parent educators regard their participation as a legacy-building activity.
“It’s a way of giving back and a way of finding meaning in their child’s death,” he says.
During a recent panel discussion, Tasha and Dean Ives said their daughter Sydney set the bar high in helping them handle grief and other tough issues.
“We feel like we are sharing her light,” Tasha explained to the nurses in attendance. “We can make a difference if we can help you and love on people like you who have loved us.”
As the busy mother of five other children, Christine O’Brien often travels to Memphis to share her wisdom and experiences with St. Jude staff. It’s not easy, but it’s one way she and her husband can fulfill the wishes of their daughter and honor her memory.
“If you make an impact on the life of one person, is your life worth it?” Christine asks. “Is your effort worth it? I think so.”
From Promise, Winter 2018