The New York Times is on a roll these days when it comes to the aging beat, and Nina Bernstein’s article last Friday was a tour de force that deserves a CJR laurel. Chronicling the relationship between a daughter and her elderly father at the end of his life, Bernstein describes how screwed up the long-term care system really is, and how unfriendly it can be for the millions of people—America’s oldest and most vulnerable—who are ensnared in its rapid transformation to profit-making enterprises.
The article recounts the last eight months in the life of Joseph Andrey, who died earlier this year at the age of 91, and the efforts of his daughter, Maureen Stefanides, to get him care that would extend his life, make him more comfortable, and allow him to die at home. Over and over again, those efforts are frustrated.
Bernstein’s nut graphs summarizing the obstacles Stefanides faced are chilling. Home care agencies abruptly drop or refuse high-needs patients like Andrey as unprofitable, a response to changes in New York’s Medicaid program that shift public dollars to private managed care companies. Hospitals turn over beds to maximize reimbursement, so patients are sent to short-staffed nursing homes but still draw what Bernstein calls “premium Medicare rates.” Nursing homes send patients to physical therapy that is often harmful or useless. Hospice care provided through Medicaid comes with strings attached: the loss of Medicaid home care benefits, which often make it possible for dying patients to remain at home.
In the end, Stefanides couldn’t beat the system’s perverse financial incentives. After repeatedly experiencing questionable or even poor care, her father died in a New York hospice on Feb. 1.
Dr. Joan Teno, a gerontologist and one of the authors of “Dying in America,” an important new report from the Institute of Medicine (IOM), delivers the quote that sets the tone for Bernstein’s piece. “We have these frail older people moving about in the medical-industrial complex that we’ve constructed,” Teno said. “It’s all about profit margins. It’s not about caring for people.”
In one major story, the Times tied together many of the threads we’ve been following in coverage of the elder-care beat. The abuse of short-term rehabilitation benefits, for one. Last week I flagged a report by health reporter Mary Jane Skala of Nebraska’s Kearney Hub, who described how a rehab facility dubiously tried to steer her 93-year-old mother into a weeks-long treatment regimen after a suspected stroke. Bernstein cites a 2012 government report that concluded improper short-term rehab charges cost the public more than $1.5 billion, and identified “a pattern of excessive or fraudulent orders for such services often just before death.”
Then there’s the way our system is stacked against basic support services that elders and their families are calling for, even if costlier care may be covered. As I’ve reported, seniors are on waiting lists all over the country because there’s not enough money flowing into meals-on-wheels programs to handle the increasing need for home-delivered meals. That concern is echoed in the NYT piece by Dr. Joanne Lynn, a hospice physician and IOM consultant who is a good source for journalists. She told Bernstein most developed countries spend much less overall on medical care but nearly twice as much on social supports, and posed a key rhetorical question: “Why can I get a $100,000 drug, but I can’t get supper?”
As Bernstein tells it, Andrey’s story is hard to square with all the talk about patient-centered care that reforms are supposed to be promoting. And it’s hard not to wonder, as his daughter does, whether the more than $1 million reportedly spent on his care bought the best treatment money could buy.
Along with the new IOM report, an earlier Times piece on how nursing facilities game the government’s star rating system, and even the pushback to a Huffington Post piece on the for-profit hospice industry this summer, Bernstein’s article is part of a resurgent conversation about end-of-life care. This renewed attention to an old problem might just spark a new dialogue about how to finance long-term care, which remains one of the gaping holes in American healthcare. It’s a topic that was on the political agenda not long ago, but when Congress and the administration shelved the CLASS Act embedded in Obamacare, the political discussion died—and as the political fight ended, the media disappeared. The IOM’s call for a fundamental overhaul of long-term care gives the press another chance to lead instead of react.
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Trudy Lieberman is a longtime contributing editor to the Columbia Journalism Review. She is the lead writer for CJR's Covering the Health Care Fight. She also blogs for Health News Review and the Center for Health Journalism. Follow her on Twitter @Trudy_Lieberman.