The photograph is beautifully composed, like an old masters painting of a biblical deathbed scene: An aged man looks to his daughter for an answer; the daughter’s upward glance conveys her struggle to find the right one.
But this is not an allegory. The picture depicts real people in the midst of a real-time search for humane care near life’s end. And the photograph had to be taken in a hurry, because the 91-year-old father, Joseph Andrey, was about to be whisked away from his hospital bed to yet another rehabilitation stint in a nursing home, over his objections and those of his daughter, Maureen Stefanides.
It would be more than a year before this image, by the photographer Victor J. Blue, became the compelling visual centerpiece in my long narrative article, “Fighting to Honor a Father’s Last Wish: To Die at Home.”
Few of my stories have generated so many online comments (1,069), or moved more readers to share their own wrenching experiences. Many asked me to forward messages of comfort to Ms. Stefanides, telling her she should not blame herself for the health care system’s failures.
The publication of the piece came only days after a major national report, “Dying in America,” called for a sweeping overhaul of the way the system deals with care near life’s end.
But the moment in the photograph had to be captured long before anyone knew the full arc and wide resonance of the story it would help to tell. And without such a strong photo of Mr. Andrey and his daughter, it’s hard to imagine that I would have been allowed the space I needed — two full pages — to do that story justice.
The path that led me to Ms. Stefanides began in the spring of 2013 with a stray news event: A state assemblyman charged with accepting bribes from the owners of a social adult day care center in the South Bronx. Alert to the possibility of a story behind the coverage of a political scandal, my editor at the time, Ian Trontz, asked me to look into social adult day care centers.
I learned that such centers had mushroomed almost overnight. Developers were taking advantage of a huge but obscure shift in the state’s Medicaid funding for long-term care that had begun in 2011. The program was meant for frail elderly and disabled people who needed help at home with tasks like bathing, walking and eating. Yet when I dropped in on adult day centers in Brooklyn and Manhattan with Ozier Muhammad, a veteran Times photographer, we saw robust seniors play vigorous table tennis and bicycle off with stacks of takeout food, with nary a walker or wheelchair in sight.
Nothing fazes Ozier, who had worked with me at New York Newsday in the late 1980s on an assignment that involved entering a Bronx apartment house run by crack dealers. He coolly held his ground when one of the bicyclists circled back and began yelling at him in Chinese, demanding that a telltale photo be eliminated. With the help of an interpreter reached on my cellphone, we countered by invoking the First Amendment.
The front-page article that resulted led to a state crackdown, but I learned unveiled only part of the problem. There was another side to the “cherry-picking” set off by the shift of billions of public dollars to private managed care companies: the shunning of people who needed the most care, including bed-bound elders with dementia.
Under the old system, providers bill Medicaid directly, a model that has been plagued by perverse incentives for expensive, unnecessary and even fraudulent care. Under the new system, aimed at saving money, managed care plans are paid a fixed sum for each enrollee regardless of what is spent on services, from social day care to nursing homes. But that turns out to have perverse incentives, too.
It was complicated. Indeed, it was so hard to explain to editors, that few newspapers would have let a reporter take the time to dig deeper, especially when so many resources were needed to cover the Affordable Care Act. But The Times gave me time to unravel what was happening and to find a way to illuminate the human consequences.
Digging led me to a 2011 lawsuit against five certified home health agencies, several with a long history of Medicaid violations under the old system. The suit accused them of trying to dump disabled patients who suddenly became unprofitable when the reimbursement formula changed. The agencies had paid a settlement and promised to do better, without admitting wrongdoing. But advocates for such patients told me the problems were continuing. And now the state was inviting several of the same agencies to play an even bigger role in the new system.
As I collected cases showing the effects in individual lives, I contacted Jack Halpern, chief executive of MyElderAdvocate.com. He remembered Joseph Andrey, stuck in a nursing home for a year after one of the agencies discontinued his home care.
What had become of him? Mr. Halpern did not know, but he found a phone number for Mr. Andrey’s daughter.
By the time I reached her, I already had other cases and an article close to publication.
But Ms. Stefanides, a public school teacher who could not afford to pay for out-of-pocket home care, told me she was living through the same nightmare all over again: a hospital that insisted on discharging her father to a nursing home, supposedly for rehab, because his home care agency refused to reinstate a shrinking allotment of hours.
My instincts told me that this unfolding case could illuminate the larger issues that affect millions of people trying to do right by a frail parent or spouse. And Ms. Stefanides said she would welcome a photographer at her father’s hospital bedside. But time was short, she warned: The discharge was set for that very day, May 22, 2013, at 4 p.m. It was then a little before 2.
I rushed over to the Metro photo desk and asked for a photographer who could handle this assignment with discretion and sensitivity — and immediately. Within minutes, Victor was on his way.
“My father wants to die at home; he knows he’s dying,” Ms. Stefanides said in the anguished message she left on my voice mail the next day, after leaving her father at the latest nursing home. “And here I am proving I’m power of attorney, that I’m guardian, and it means nothing, it falls on deaf ears.”
Few of my stories have generated so many online comments (1,069), or moved more readers to share their own wrenching experiences. Many asked me to forward messages of comfort to Ms. Stefanides, telling her she should not blame herself for the health care system’s failures.
I made it to the nursing home to interview father and daughter soon afterward. But editors were already sending me in other directions. At least 26 states were rolling out versions of mandatory managed long-term care; The Times should provide a national perspective, they said. Eventually that entailed a trip to Tennessee, and a piece anchored by other cases, other photos.
Compelling new evidence sent me back to Brooklyn, where disabled residents of adult homes flooded by Hurricane Sandy had become the pawns of care companies jockeying for market share. Ruth Fremson, the staff photographer who teamed up with me that time, showcased the residents’ human dignity in vivid portraits.
All along, though, I could not stop following the ordeal of Joseph Andrey and his daughter. I visited Mr. Andrey, and took notes or kept voice-mail messages each of the many times his daughter called. She was often beside herself with sorrow and frustration at her father’s suffering. Though he qualified for both Medicaid and Medicare, the flow of money seemed to bypass what he actually wanted at the end of life: to return to his music and books and to die in his own bed.
When he died Feb. 1, it was in an institutional hospice where his daughter’s plea for a priest went unanswered. Victor Blue and I went to the wake together, and Victor stayed on alone with her, documenting the last blessing she gave her father.
Later, at my request, she sought copies of hundreds of pages of hospital and nursing home records from the last year of her father’s life. I knew they could serve as the clinical and financial counterpoint to what she and I had witnessed.
When I joined Metro’s investigative unit in March and I told its new editor, Michael Luo, about the case, I had followed Mr. Andrey and his daughter for more than eight months, uncertain of how or even whether I would be able to tell their story, given the other articles on linked issues that still had to be completed.
Mike became this story’s champion. More interviews, more research, writing and revision would be necessary before the story was published. But we already had the right photograph.