The New England Journal of MedicineLearning to Say Goodbye

Navigating the emotional challenges of caring for children with life-limiting conditions like epidermolysis bullosa, with insights into the importance of proper goodbyes in clinical practice.

Dr. James A. Feinstein recounts his experiences caring for children with epidermolysis bullosa, a rare and life-limiting genetic skin disorder. Through his journey, he learns the profound importance of saying goodbye to his patients, a lesson imparted by his mentor, Dr. Steve Berman. This article highlights the emotional challenges faced by healthcare providers while stressing the necessity of acknowledging these emotional bonds to achieve personal peace and professional fulfillment.

Key Points:

• Epidermolysis bullosa (EB): A rare genetic disorder causing fragile skin that tears easily, leading to severe wounds.
• Emotional impact: Caring for children with EB involves significant emotional strain due to the chronic and terminal nature of the disease.
• Therapeutic insight: A therapist advises Dr. Feinstein to find a way to properly say goodbye to his patients to cope with his emotional burden.
• Mentorship and guidance: Dr. Steve Berman, an experienced physician in the EB clinic, demonstrates the importance of personal connections and proper goodbyes.
• First experience: Dr. Feinstein’s initial reluctance to say goodbye contrasts with Dr. Berman’s practice of kissing patients and expressing pride and love.
• Transformative moment: Dr. Feinstein’s first attempt to say goodbye to a young patient, Rahm, brings personal and professional closure.
• Personal growth: Accepting the emotional connection with patients helps Dr. Feinstein find peace and sleep better at night.
• Full circle: Dr. Feinstein’s experience comes full circle when he says goodbye to Dr. Berman, who imparts his final lesson on the importance of farewells.
• Long-term effects: Recognizing and embracing the emotional bonds with patients can lead to personal and professional fulfillment for healthcare providers.
• Clinical practice implications: Encourages healthcare providers to acknowledge and address their emotional needs when caring for terminal patients to prevent burnout and improve patient care.

“Still up close where he could see me, I hovered over him. I touched my lips lightly to his brow with the weight of a butterfly landing on a branch. I didn’t want to cause any more pain, but I wanted him to know I was there. His skin was soft and warm.”

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