JAMA publishes master's paper by Karen Donley-Hayes
Karen Donley-Hayes writes and edits words for a living, but until she walked into Sheryl Buckley's Contemporary Ethical Issues class, she could not find the words to explain what was so terribly wrong about the way her best friend had died.
"I just couldn't cross that bridge," she said.
One of the first three graduates of Hiram College's Master of Arts in interdisciplinary studies program, Donley-Hayes found in Buckley's class not only her voice but also a stepping stone to the highest platform from which to address the American medical community.
Her final paper in Contemporary Moral Problems has become the essay "At Face Value." It was published in the June 21 issue of the Journal of the American Medical Association in the "Piece of My Mind" column. (Donley's essay can be found at http://jama.ama-assn.org/cgi/content/extract/295/23/2701 but JAMA charges readers a fee.) On July 12, Donley-Hayes was interviewed by Dr. Greg Davis for Dr. Greg Davis on Medicine on NPR station WUKY in Lexington, KY. The interview is available as a MP3 download. In addition, Donley-Hayes has been featured in a HealthDay story that can be found at http://www.healthday.com/view.cfm?id=533360.
"I never would have submitted it to JAMA without the Hiram master's program," Donley-Hayes said. "I was muddled. I didn't know what I wanted to say. Having the course gave me a framework."
Because the class was small, Buckley, a Cleveland anesthesiologist, asked her graduate students which contemporary ethical issue they wanted to confront. Donley-Hayes and classmate Barb Petiya both were drawn to end-of-life issues.
Petiya's father had just died of complications from Alzheimer's, and Donley-Hayes had lost her best friend, 36-year-old Ashley Habsburg, to breast cancer.
Daughters of Hiram College professors, Donley-Hayes and Habsburg were thrown together by their parents, with Donley-Hayes, three years older, responsible for watching the younger Ashley. It wasn't an easy assignment.
"She had this strength of character even then," Donley-Hayes said. "She was stubborn and very intense. It was funny. This friendship was one forced by our parents and not always one we liked at first."
Yet the girls, both crazy about horses, grew on each other. They came to share a dream of buying adjoining horse farms. Ashley went off to Miami University in Oxford, Ohio, and Karen remained in Hiram, where she got her Bachelor of Arts degree in 1986. They never forgot their dream, though.
"Then," Donley-Hayes said, "she had the audacity to get breast cancer."
The friends were living side by side on horse farms in Parkman, Ohio, near Hiram, when Habsburg died late in 2002. She had asked Donley-Hayes first to help her with medical decisions, Donley-Hayes is a former paramedic and works as a medical editor, and, finally, to help her die.
Habsburg wanted to know everything about her disease. She researched it. She wrote everything down. She wanted to see the pathology reports. She needed to understand what was happening to her.
"She wasn't timid about seeking first hopefully curative treatment, then palliative treatment," Donley-Hayes writes in her JAMA article. "She wasn't timid about letting her fiends and family help her manage her treatment, then help her to manage her death."
It is the path from fighting to live to learning how to die that Donley-Hayes seeks to mark more clearly for the medical community through her friend's story.
"In particular," said Sheryl Buckley, her professor, "Karen focused on the difficult transition from fighting the cancer, which included regular visits with both the oncologist and the oncologic nurses who gave her treatments, to hospice. Ashley really missed the relationships she had forged with her doctor and nurses. Once she accepted hospice care, those relationships were abruptly cut off. Karen questions whether that is appropriate from a humane standpoint."
Donley-Hayes identifies an "abyss" between one form of care and another and seeks with Ashley Habsburg's story to build a bridge across this gulf.
"Death is ugly, scary, and final," Donley-Hayes writes in her JAMA article. "But I doubt that any of us want to die feeling impotent, abandoned, no longer in the embrace of the physicians who cared for us when they hoped we might live. A natural part of death for everyone is grief, anxiety, fear, maybe anger. But it can also be a time of growth and enlightenment.
"If Ashley wasn't timid about dying, the medical profession shouldn't be either."
Ashley Habsburg's widower, Anton, and her parents, Bill Carrell and Janeen Carrell-Brown, long had urged Donley-Hayes to tell Ashley's story, but she might never have done so were it not for her master's work at Hiram College.
"Now that Karen is a MAIS graduate," Buckley said, "I have warned her that I intend to hound her until she writes a book about her journey with Ashley."