Caring for Families Who Are Facing the Unimaginable
I really feel that my Jesuit education helped me learn about and appreciate caring for the whole patient and their family, not just their physical symptoms.
— Erica (Trombly) Harp ’14
Erica Harp ’14 has always loved being around children.
For many, such an interest might lead to a career as a librarian, educator, or orthodontist. For Harp, it’s evolved into a profession that is both wrenching and deeply rewarding: she works nights in a neonatal intensive care unit (NICU), leading end-of-life and bereavement care for families facing the unimaginable.
As a pediatric palliative care nurse at Baystate Medical Center in Springfield, Mass., Harp helps coordinate teams of skilled nurses, professional “palliative care champions,” and family members to care for newborns facing life-limiting conditions and end-of-life situations. Many of these babies were born significantly premature, some barely past the halfway point of a typical 40-week gestation, and as tiny as 15 ounces.
“We have hard conversations,” said Harp, who keeps each family’s unique circumstances in mind. “I know this is a horrible scenario. But, in this moment, I need to do what this family needs.”
Harp herself was a premature baby, born at just 31 weeks and weighing three pounds, five ounces. Throughout her own childhood, she remembers her parents speaking highly of the compassionate advice and care they received from nurses when she was born.
The profession seemed a natural fit.
A graduate of Holy Name Central Catholic Junior/Senior High School in Worcester, Mass., Harp wanted to attend a Jesuit college. At Fairfield Egan, the evolving focus on palliative care that led to the creation of the five-year-old Kanarek Center for Palliative Care Nursing Education resonated with her — and is now the focus her work.
Harp has spent the last four years reinventing the end-of-life and bereavement policies and procedures followed by Baystate Medical Center’s NICU. She is planning conference presentations this fall on her work, which influences overarching hospital standards and provides precise directions for nurses who find themselves dealing with such morally and ethically difficult situations every day.
Palliative care encourages nurses to openly discuss the beliefs and wishes of a patient’s family. Do they place importance in extending the time they have with a loved one through medical means, or in ensuring the waning time is spent in comfort? What cultural and religious issues are involved in their decisions? “I really feel that my Jesuit education helped me learn about and appreciate caring for the whole patient and their family, not just their physical symptoms,” she wrote not long ago to Kanarek Center Director Eileen O’Shea, DNP, APRN, PCN-BS, CHPPN. “I am working to re-educate our staff on the importance of palliative care and knowing that it is not a form of giving up or abandoning medical care; this education is crucial before students start being exposed to it in their clinical lives after graduation.”
While some might find Harp’s work too draining or depressing, she said she has always been interested in how people — and different cultures — address death. As a veterinary technician in high school, she took to heart the fleeting nature of life and the concept that death can be a release from suffering for any mortal being.
“Death is just as much a part of life as birth or anything else,” she said. “Sometimes it is a peaceful end to a struggle.”
Harp strives to make sure her workplace culture welcomes honesty among its members, and offers time off to relax and recharge. Occasionally she finds that a dark sense of humor or the ability to compartmentalize in the moment is necessary to balance the emotional toll she and her nurses experience in the 55-bed NICU. “We have seen a lot of death, especially during Covid,” she said. “Every nurse has. You need to know your limits.”
In addition to presenting on the palliative care policies she’s written for her hospital, Harp will spend some of 2021 learning to train others through the End-of-Life Nursing Education Consortium, an international initiative to improve palliative care. She first learned of the group while at Fairfield’s Marion Peckham Egan School of Nursing and Health Studies.
Harp especially appreciates lighter moments when she runs into families she’s helped in the past — sometimes celebrating the birth of a new child.
“You see that and it’s extremely joyful,” she said. “They’re so grateful for the care we provided in the worst days of their lives.”
