Why Some Hospitals Are Allowing Unnecessary Suffering
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"His heart filled virtually his whole chest," recalls Dr. Diane Meier describing her very first patient, an 89-year-old suffering from end-stage congestive heart failure.
It was the first day of Meier's internship at a hospital in Portland Oregon, and after being assigned 23 patients, she was suddenly told that one of her patients, who had been in the Intensive Care Unit for months, was "coding." She raced to the ICU where the resident told her to put in a "central line."
"I didn't know how," Meier admits. "I felt overwhelmed and inadequate. Then, the patient died ...
"Everyone just walked out of the room," she remembers. I stood there. I still sometimes flash back on that scene: the patient, naked, lying on the table, strips of paper everywhere, the room empty. This was my patient. I felt I was supposed to do something -- but I didn't know what."
Meier left the room and, in the hallway, saw the patient's wife. "I walked right past her," she recalls, nearly shuddering at her own cowardice. I didn't know what to say. I didn't even say 'I'm sorry.' As a physician, I didn't think that I was supposed to do that. "
I heard Dr. Diane Meier tell this story at a conference for medical students at Manhattan's Mt. Sinai School of Medicine last week. When she finished, she asked her audience, "What is the hidden curriculum here? What does this story tell you?'
"Once the patient dies, he no longer matters," said one student.
"If we can't save the patient, the patient doesn't matter," added another.
Meier drew a third lesson: "Before he died, this patient had spent two months in the ICU. We had done everything possible to prolong the dying process." As a doctor, you have to step back and say, 'What is this experience telling me, and is this right?'"
As a palliative care specialist, Meier spends much of her time with dying patients. For many, "palliative care" offers a middle road between pulling out all the stops and simply giving up hope. Like traditional "hospice" care, palliative care focuses on "comfort" rather than "cure," emphasizing pain management and easing the emotional trauma of facing death, both for the patient and for the family. But palliative care also includes procedures aimed at treating the symptoms of the disease.
In the past, Meier explains, physicians have seen caring for a terminally ill patient as an "either/or" situation: "Either we are doing everything possible to try to prolong your life -- or when there is 'nothing more that we can do,' only then do we make the switch to providing comfort measures. This dichotomous notion -- that you can do one thing alone and then the other thing alone later -- has nothing to do with the reality of what patients and their families go through."
In her talk last week, Meier explained that her first patient was one of three who marked turning points on her life as a physician. Originally, she trained to become a geriatrician, a doctor who cares for people over 65. "I think because I was very close to my grandfather," she explained, "and because I'm a 'lumper' not a 'splitter'," she added, referring to the distinction between doctors who prefer to treat the whole patient, head to toe, and those who prefer to specialize in a body part: the foot, for example, or the eye.'
Her interest in treating the elderly brought her to Mt. Sinai, which, at the time, had the only Department of Geriatrics in the country. But as her career unfolded, she found herself "become more and more alienated from medicine. Here, in the hospital, everyone was running around, ostensibly trying to help the patient, but actually often hurting the patient. I thought about quitting. I had a fantasy of opening a bakery/book shop where I could read and eat brownies ..." she told the med students.
"Then I met a patient I will call Mr. Santanaya."
Meier first encountered Santanaya when she was walking down a hospital hallway and heard a man screaming and moaning in pain. She looked into his room and there he was, pinioned to his bed, hand and foot, in "four-point restraint."
"I went to the nurse and asked, 'Why is this man in a four-point restraint?" The nurse called for the intern.
"I'll never forget this kid's face," Meier recalled "To me, he looked about twelve years old. And terrified.
Meier asked the question again, and the intern explained: "He has lung cancer that spread to his brain and he's delirious. We put a feeding tube up into his nose and down to his stomach, and he pulled it out. So we tied his hands. Then he pulled it out with his knees and feet -- so we tied his knees and feet."
"The feeding tube is very uncomfortable," Meier told the students. "It makes the nose and esophagus raw. I asked the intern, 'Why do we have to do this?'"
"He looked at me with tremendous distress in his eyes: 'Because if we don't, he'll die."
"I realized he didn't know any better," said Meier. "Neither did the resident or the attending physician. I realized that this was an educational problem.
"They cared about the patient. This wasn't callousness or indifference or venality. They just didn't know when too much is too little." So Mr. Santayana spent 33 days tied hand and foot to his bed before he died. He spoke no English, but during that time, he kept screaming "Ayudeme! Ayudeme!" (Help Me! Help Me!)
Why didn't Mr. Santayana's physician intervene to do something to help him? "He didn't have a primary care physician because he was on Medicaid," Meier explained. So it was left to the hospital staff, and not knowing what else to do, they simply followed procedure.
"This was the early 1990s, and that is when I decided to shift my career to try to make up for what happened to Mr. Santayana," said Meier. Then she got lucky.
Dr. Robert Butler, founder of gerontology at Mount Sinai, and a friend of George Soros, urged her to apply for funding from Soros's newly formed Project on Death in America. Meier and three colleagues won the funding and in 1995, with help from Soros and the United Hospital Fund, launched the Hertzberg Palliative Care Institute at Mount Sinai School of Medicine. The Robert Wood Johnson Foundation also invested in developing content. In 1999 Meier and Dr. Christine Cassel founded the Center to Advance Palliative Care (CAPC) . As a result of CAPC's program, by 2005, the number of hospital-based palliative care programs in the U.S. had roughly doubled to 1,240, and some 3,100 health care professionals had been taught CAPC's methods and ethics.
The third patient who Meier told the students about last week is a 24-year-old who she called "Kate." Kate had just graduated from college and had worked and saved enough money to go to Australia. There she developed the worst headache of her life. "She called her mother from Sydney and her mother came to get her," Meier told her audience. "In retrospect, she might have been better off if she had stayed in Australia."
The problem was that Kate had no health insurance. She was only 24 and she thought she didn't need insurance.
Her mother brought her directly from the airport to Mt. Sinai, "where she was admitted directly to the oncology service, not to a doctor," Meier explains. Like Mr. Santayana, she would be on Medicaid and so wouldn't have her own doctor. Kate was diagnosed with leukemia.
"I met Kate on day 7 when a consult called me to say that they had a manipulative drug-seeking patient with acute myeloid leukemia," Meier recalled. "By then, Kate had earned the contempt and hostility of the house staff because she was constantly screaming for pain-killers.
"It turned out that no one knew the half-life of the opiate they were giving her -- not the attending physician, not the resident, not the intern."
Meier then turned to her audience, made up largely of second-year medical students. "Does anyone here know the half-life," she asked, naming the pain-killer.
No one did. (The half-life of a pain-killer tells you how long it will be before it wears off.)
"What they were giving her provided relief for only 90 minutes," said Meier, "and they were giving it to her every six hours." After 90 minutes , Kate would begin ringing for nurse. Then, after a half hour, when no one came, she would begin ringing more and more frantically, and finally begin screaming. "Between four and six hours, she would just be screaming," said Meier.
This had been going on for seven days. "The pain specialists wouldn't see her because she had no insurance."
"I doubled the dose and ordered that it be given to Kate every three hours, around the clock," said Meyer. "And before long, she was transformed into the sweet, charming intelligent person she always had been."
"Kate had become the victim of iatrogenic pseudo-addiction," Meier added. She wasn't an addict, but she was behaving like an addict and seemed like an addict -- a pseudo-addiction created by her doctors, which makes it an "iatrogenic disease," an illness caused, inadvertently, by medical care.
Why hadn't her mother tried to persuade the doctors to give her more pain-killers? "Kate was the middle child in an Irish family of seven kids and one of her brothers had become addicted to drugs. As a result, the mother was terrified of opiates," said Meier. "The palliative care team had to spend time with the parent, explaining that pain kills.
The only possible hope for Kate was a bone marrow transplant. Because she was on Medicaid, this would be very hard to get. "It took six weeks of begging to get someone to take her," Meier recalled. "And then the transplant failed.
"While she was dying, Kate told us that the worst part of the experience had been those first six days when she was labeled a 'manipulative drug addict.' She was marginalized because her doctors did not know how to administer the opiates.
"Untreated pain is a medical emergency," Meier told the students. "The reason no one here knew the half-life of that opiate is because learning about pain-killers is not a priority in medical curriculums." In fairness, this is the sort of thing that doctors on the ward often look up. But in this case, no one even tried to look it up.
"The relief of suffering is a fundamental part of medicine," Meier concluded. "In this country there is a tremendous amount of stigma associated with opiates. When you are caring for patients, and you leave an order for the nurse to administer the pain-killers, remember, there's a real chance that she'll think, 'This is dangerous. I don't want something bad to happen on my shift. Okay, I'll give it to you -- but I won't give you enough.'
"This is why pain is so poorly managed in this country."
In Italy, by contrast, a patient dying of cancer is often sent home, with morphine, to die in his own bed. His wife administers the morphine and she is given enough to keep him as much as he wants -- when he wants it. In the U.K., where hospice care was invented in the 1960s, there are many more palliative care specialists than in the U.S.
Here, medicine is all about "cure," not about "care." "Defeating death at any cost: that is the priority," Meier told me. "It comes ahead of reducing suffering or considering the quality of the patient's life. If you look at NIH funding," she pointed out, "you see that this is where the money goes -- to cure cancer, to prevent all heart disease and stroke."
This is not to say that Meier favors cutting back on end-of-life care because it is so expensive and so much money is "squandered" during the final year of a patient's life. "The problem is, of course, that we don't know who is in their last year -- or their final three months," Meier observed. "The fact that we spend so much on these patients in their final months of life is not necessarily a bad thing," she added. "These are the sickest people in the hospital, who need the most care. We shouldn't say: 'We're wasting money on the dying.' But," she added , "we should be asking, 'Is this the best care? Is it appropriate care?"
Clearly, we need more palliative care specialists like Meier. But this is another case where we don't pay enough for "thinking medicine" -- which involves talking to and listening to the patient -- rather than cutting him or radiating him.
"When a three-person palliative care team made up of a doctor, a nurse and a psychologist spends 90 minutes in a meeting with a family, Medicare would probably pay $130 to $140 -- for all three people," Meier told me. "And Medicare is one of the better payers. This explains why Meier earns $100 for every several thousand dollars that her husband, an invasive cardiologist, takes home. "Though," Meier said mildly, "it would be hard to say that one of us is practicing more sophisticated medicine."