Judges’ comments:
Katy Butler’s moving examination of the final agonizing years of her father’s life – prolonged by a pacemaker – is both a compelling first-person account of her struggle to come to grips with her grief and a striking indictment of what is wrong with the American health care system.
In unflinching candor, Butler takes the reader into the world of end-of-life medical care, lending flesh-and-blood realism to the ongoing national debate on health care reform. Butler’s piece is by turns touching and distubing, insightful and biting, compassionate and clear-eyed. She traces how a decision made in just a few minutes after a hurried exchange with a surgeon set her father on a course that Butler, her mother — and least of all her father — wanted. Even as his mind deteriorated, the pacemaker relentlessly kept him alive.
She delivers the story with an investigative reporter’s eye for detail, a novelist’s sense of pacing and a consumer advocate’s talent for providing useful information to the reader. Many reporters have spotlighted gaps and flaws in the U.S. health-care system, but rarely with such eloquence and high-minded conviction.
The piece forces the reader to confront, compare and contrast the two end-of-life experiences of her parents – one good, one bad. Without overstatement or melodrama, she makes clear that the health-care industry should place a higher priority on quality over quantity of life in such cases. She artfully tracks the soft-money stream and financial interests that drive many medical and health-care decisions.
A winning combination of personal memoir, narrative storytelling and deep consumer reporting, “My Father’s Broken Heart” should be required reading for any member of Congress who will weigh in on health care issues and Medicare this year. We feel certain Butler’s mother and father would have been proud of the way she has nobly and ably characterized their struggles with their own declining health and the health care system.
1. Provide the title of your story or series and the names of the journalists involved.
“My Father’s Broken Heart: How a Pacemaker Wrecked My Family’s Life” by Katy Butler (online version titled “What Broke My Father’s Heart“)
2. List date(s) this work was published or aired.
June 20, 2010, The New York Times Magazine.
3. Provide a brief synopsis of the story or stories, including any significant findings.
“My Father’s Broken Heart” chronicled how my father’s last, worst years were unnaturally prolonged by a pacemaker, and investigated the perverse financial incentives within medicine that promoted his overtreatment. It wove together the intensely personal story of my parents’ lives and deaths with a careful reading of medical studies and investigation of Medicare reimbursement policies, cardiology treatment guidelines, and lobbying by the medical industry. It was groundbreaking in that it brought home the sometimes intense personal costs of the technological imperative at the end of life, and it publicized the under-recognized risks of “living too long” thanks to a modern cardiac device.
4. Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
I accessed scientific journals online and in print, including the Journal of the American Geriatric Society, the Journal of Immunology and the Journal of the American Medical Association. No public records were requested, however my parents’ Medicare and medical records were used. The information retrieved revealed conflicts of interest among the authors of the clinical guidelines for cardiology devices, and the weak scientific foundation of guidelines promoting expanded cardiac treatment.
5. Explain types of human sources used.
The intensely personal sections of the piece drew on my own memory, my mother’s journals, and interviews with my mother before her death. I also interviewed all relevant doctors involved in my father’s and mother’s medical care; cardiologists, bioethicists, medical policy researchers and others at Medicare, Mayo Clinic, Harvard University Medical School, the University of California at San Francisco, and the Dartmouth Atlas Project at Dartmouth Medical School and elsewhere. Most of the many experts interviewed were not directly quoted but provided background that informed the article as a whole.
6. Results (if any).
The article was featured as a “Notable Narrative” on the website of the Nieman Foundation at Harvard and was “most emailed” story in the New York Times for many days. I have since been invited by bioethicists to speak at Ochsner Medical Clinics in New Orleans and at Harvard Medical School.
7. Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
Nobody challenged the accuracy of the reporting of any fact, medical study, or incident described in the article, although not everyone agreed with the article’s conclusions. Dr. John Rogan, my father’s cardiologist most prominently featured in the article, wrote a letter to the Times giving his views on end of life care but did not challenge any assertion of fact or quotation.
8. Advice to other journalists planning a similar story or project.
Stay true to your story. Follow the money, don’t be afraid to write unpleasant truths, and watch out for taboo “elephants in the room,” be they emotional or political. When covering medicine, consider closely interweaving the personal with the scientific and economic. It is easy to write an emotionally gripping story about someone being denied medical care, or not being allowed access to an expensive cancer treatment. But overtreatment is an important part of the national debate on effective health care, too. It’s important not to create dishonest hope, and to take a hard-headed look at the limits of medicine and the effects of medical overreaching and what drives it.