The place: Beth Israel Hospital in Manhattan.
The diagnosis: fast-growing, small-cell lung cancer.
The patient: Paula Faber, unrepentant, life-long smoker.
The choice: treat it aggressively to extend life, but probably not cure the disease, or manage the pain and focus on the quality of life.
It was September 2012 and it was Paula Faber’s third cancer in a decade, but she did not hesitate.
“She was going to fight it every inch of the way,” said her husband Ron Faber.
By August 2013 after much fighting, Paula Faber died at age 72. Ron Faber now regrets the intervening 11 months of chemotherapy, radiation, painkillers and side effects that reduced his wife to 67 pounds of frayed nerves.
“I would’ve rather have had a really okay four-and-a half months than this endless set of treatments,” the stage actor said.
As they confronted Paula’s terminal diagnosis, the decision the Fabers made is among the most difficult anyone can make. But it turns out that in the metropolitan region, guided by doctors working and trained at several of the country’s top academic medical centers, patients opt for aggressive treatment much more often than other Americans.
"New York City continues to lag in serious ways with regards to providing patients with the environment that they want at the end of life," said Dr. David Goodman, who studies end-of-life care at Dartmouth College's Geisel School of Medicine.
The reasons they do this are many, but most experts agree that it has less to do with the unique characteristics and desires of people in New York and New Jersey than the healthcare system and culture that has evolved here.
It is a culture summed up by an old joke Dr. Diane Meier, a geriatric specialist at Mount Sinai Hospital, likes to tell, about how if a patient trips on death’s door and breaks his hip, you’ll need to fight off the orthopedic surgeon if you want the patient to die in peace.
“It’s a joke with a core truth,” Meier said, “that if there’s a cancer it needs chemotherapy, that if there’s heart failure, it needs a procedure, that if there’s a fracture it needs surgical repair.”
At the end of life, all this translates to more people dying in the hospital, often in an intensive care unit on a ventilator or feeding tube; more doctor visits leading to tests, treatments and drug prescriptions; and more money being spent by the government, private insurers and patients themselves.
Specialists at the Dartmouth Healthcare Atlas maintain that one of the main drivers of this phenomenon is quantity: people end up in hospitals here so often, they say, because this region simply has a lot of hospital beds.
“One of the truisms of healthcare is that whatever resources are available, or whatever beds are built, they tend to get filled,” Goodman said.
Also driving the culture of heavy treatment is the high proportion of specialists and sub-specialists who constantly refer patients to each other — both because that is how they were trained and because it is good for business.
“If I’m an endocrinologist, if I refer to the cardiologist, the cardiologist will refer back to me for endocrine problems,” said Meier, who is also a MacArthur Foundation fellow and the director of the Center to Advance Palliative Care. “It’s like a cottage industry.”
More and more, though, hospitals are getting a single payment from commercial and government insurers for each patient and losing money when treatments and tests pile up. Meier said hospital care needs to adapt.
“The sort of open faucet of money, where whatever you do, the more we’ll pay you, and the more complicated thing you do, the more we will pay you, and the more risky thing you do, the more we will pay you – there’s a recognition now that, really, the party’s over,” she said.
Local healthcare leaders are trying to find more ways to treat people at the end of life in outpatient settings and at home. Lorraine Ryan from the Greater New York Hospital Association is working with three dozen hospitals to develop what they call palliative “power plans” for certain high-needs patients.
“Terminally ill cancer patients would have one kind of power plan that might be all about pain management, as well as the emotional support,” Ryan said. “Someone with rheumatoid arthritis, who might be losing the ability to navigate activities of daily living, might need a different kind of care.”
Ron Faber is still asking that question.
A year after his wife Paula died, he still believes her oncologist at Beth Israel Hospital was strangely optimistic about her prospects. Faber acknowledges it was Paula’s decision to fight the cancer "every inch of the way," but he thinks she might not have, if her doctors had told her more about the upsides of palliative care and the downsides of aggressive treatment.
“I think they sold her on it,” he said. “She was so afraid of death that she was ready to buy, and they knew it. And I think it happens a lot.”
Hospice had come up before as an option, but the Fabers thought of that only as a place to go and die, and no one had told them otherwise. Then a social worker explained that hospice is something that can happen at home, too. Belatedly, Faber said, the couple chose that option, and hospice workers from Visiting Nurse Service of New York came to their apartment in Greenwich Village’s Westbeth Artists Housing.
“Once they arrived, it was like putting everything together,” he said. “And from that moment on, everything was right.”
It turned out to be the Fabers’ final five days together, after almost 50 years.