WADE GOODWYN, HOST:
During the debate about the Affordable Care Act, we heard false claims that bureaucrats would decide who was worthy of medical care at the end of life. The Institute of Medicine recently called for a major overhaul about how we talk about and plan for death. Many terminal patients spend their final months undergoing torturous medical treatments and end up dying in hospitals, even though surveys show that's not what people want. Fred Mogul from member station WNYC reports on the emotional and financial costs and what some people are doing about it.
FRED MOGUL, BYLINE: Regret is a frequent companion of grief. This is what Ron Faber regrets nearly a year after his wife Paula died.
RON FABER: I would have rather had a really OK four and a half months with her than this endless set of treatments.
MOGUL: The diagnosis - small cell lung cancer. The choice - treat it aggressively to extend her life, but probably not cure the disease, or manage the pain through palliative care and focus on the quality of life. It was the 72-year-old Paula's third cancer in a decade, but she didn't hesitate.
FABER: She was going to fight it every inch of the way.
MOGUL: That meant shuttling back and forth to Beth Israel Hospital in Manhattan for chemo and radiation therapy.
FABER: She looked like death itself.
MOGUL: Paula stopped eating, and Ron brought her back to the doctor who said her cell count was improving.
FABER: She was 67 pounds, and the doctor was actually saying these tests are really quite positive.
MOGUL: Terminally ill patients like Paula Faber frequently opt for aggressive treatment, but they do so more frequently in New York City area hospitals and almost any place in the country. According to Dr. David Goodman, they do this even though they also say in survey after survey that they want to spend their final days as far away from hospitals as possible.
DR. DAVID GOODMAN: What they hope for is to be able to take care of unfinished business. And the reality is that medical care can interfere with that in rather dramatic ways.
MOGUL: Goodman studies end of life care at Dartmouth Medical School. And he says if you look at every hospital nationwide, New York and New Jersey dominate the list when it comes to the number of days people lie in hospital beds, the taxpayer dollars spent per person and the likelihood patients will end up on a ventilator or feeding tube.
GOODMAN: New York City continues to lag in serious ways with regards to providing patients with the environment that they want near the end of life.
DR. JEREMY BOAL: It's a very challenging problem that I think we struggle with.
MOGUL: Dr. Jeremy Boal is the chief medical officer of the Mount Sinai health system, which owns Beth Israel Hospital.
BOAL: Mount Sinai Hospital has spent a very long time investing in geriatric resources and palliative care resources and expertise. And I think we have made some headway, but we're summing against a very, very stiff stream.
MOGUL: The stream he's talking about consists of several different currents that bring patients' extensive end-of-life treatments and hospital stays at Mount Sinai, Beth Israel and dozens of hospitals from Albany to Trenton. There has been some improvement, but it's been slower than the country's as a whole. Goodman, from Dartmouth, says reason number one for this lag is quantity. People end up at hospitals here so often, he says, because this region simply has a lot of hospital beds.
GOODMAN: One of the truisms of healthcare is that whatever resources are available or whatever beds are built, they tend to get filled, and they have in New York City.
MOGUL: Reason number two - every region has its own medical culture, and the one here is built around highly-trained specialists and subspecialists who see it as their job to cure illness. Dr. Diane Meier says the result of this is that...
DR. DIANE MEIER: If there's a cancer, it needs chemo therapy. That if there's heart failure, it needs, you know, a procedure.
MOGUL: Meier is the director of the Center to Advance Palliative Care at Mount Sinai Hospital. She says this glut of specialists is compounded by reason number three - money. For all those specialists, it's simply good business to constantly refer patients to each other for tests and procedures.
MEIER: So if I'm an endocrinologist, if I refer to the cardiologist, the cardiologist will refer back to me for endocrine problems. So it's like a cottage industry.
MOGUL: At Mount Sinai, things are slowly changing. Some department heads require staff members talk to terminally ill patients about hospice and palliative care, which is focused on managing pain not fighting illness. If doctors and nurses don't make an electronic note of the conversation, their supervisors demand to know why. Diane Myers says every hospital should fall this example.
MEIER: All of medicine needs to be willing to say why did this person with end-stage dementia have three or four hospitalizations in the last three months of life and die in the intensive care unit? You know, this was a terrible experience for the patient and family, lot of unnecessary suffering and over a million dollars in costs to the taxpayer. How did that happen?
MOGUL: It's a question Ron Faber is still asking. A year after his wife Paula died, he thinks about how her oncologist was weirdly optimistic about her prospect. Ron thinks Paula might not have chosen to fight if doctors had told her more about the up sides of palliative or hospice care and about down sides of aggressive treatment.
FABER: I think they sold her on it. She was so afraid of death that she was ready to buy, and they knew it. I think this happens all the time.
MOGUL: Hospice had come up before as an option, but the Fabers just thought of that as a place to go and die. And no one told them otherwise. Then, a social worker explained hospice is something that can happen at home too. Belatedly, the couple chose that option and hospice workers came to their apartment.
FABER: Once they arrived, it was like putting everything together. From that moment on, everything was right.
MOGUL: It turned out to be the final five days of Ron and Paula Faber's almost 50 years together. For NPR News, I'm Fred Mogul in New York.
GOODWYN: This story is part of a reporting partnership between NPR, WNYC and its data team and Kaiser Health News.
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