Maggie Mahar -- BAD, DON'T USE

Why Some Hospitals Are Allowing Unnecessary Suffering

"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."

Just How Secure Is Your Employer-Based Health Insurance?

Last week, the Economic Policy Institute released a disturbing report revealing just how many white-collar workers have lost their employer-based health insurance in recent years -- even though they didn't change jobs.

Many workers believe that if they hold onto their job, their insurance is safe. Professionals with jobs near the top of the occupational ladder are especially likely to assume that their employer is not going to cut their coverage. That may well have been true in the 1990s, when the job market was tight -- but not today.

The EPI report shows that in just the first six years of this century, the share of U.S. workers with employer-provided health insurance (EPHI) fell from 51.1 percent to 48.8 percent. Moreover, workers in white-collar occupations -- including executives, managers and workers in professional specialties -- were just as likely as blue-collar workers to lose their safety net.

Perhaps this shouldn't come as a surprise, since employers typically pay a much larger share of premiums for higher-income employees. So as insurance premiums soar (up 78 percent since 2001), employers are beginning to chafe under the very costly burden of providing first-class benefits to white-collar employees. (Insurance premiums rose "only" 6.1 percent in 2007, but going forward, experts expect sharper increases because the cost of medical technology continues to skyrocket).

Most employers will just shift more costs to employees in the form of higher co-pays and deductibles. But some will decide that they cannot continue to offer insurance.

"No one is immune to the slow unraveling of the employer-based health insurance system," warns Heidi Shierholz, EPI economist and co-author, with Jared Bernstein, of the report "A Decade of Decline: The Erosion of Employer-Provided Health Care in the United States and California, 1995-2006."

"This dramatic loss of employer-provided health insurance since 2000 is not simply driven by the loss of high-quality jobs, such as those in the manufacturing sector," the report observes. "Rather, it is caused by the significant decline in employers providing coverage within existing jobs across the board. The burden of these employer cuts is not carried by part-time or marginal workers. Rather, the most dramatic loss is among workers with the strongest connection to the labor force."

Note, for example, the startling declines, from 2000 to 2006, in the share of workers covered by EPHI as shown in the bottom half of the table below (click for larger version). At the top of the job ladder, in the first three occupations listed, the percentage of executives, professionals and technicians with employer-based coverage fell by over 3 percent to 5.6 percent.

The top half of the table below shows what percentage of workers are employed in various occupations; the bottom half reveals what percentage in each occupation have employer-provided health insurance.

Click below to view larger table.
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Drilling a little deeper, the bottom half of the table below tells you more about the people who lost their insurance. For example, from 1995 to 2006, workers with a college degree were just as likely to lose their EPHI as those who didn't have a degree. Meanwhile, from 2000-2006 the share of 45- to 54-year-old workers with EPHI -- which includes many people who are most likely to need health care -- fell by a fat 4 percent. (The small dip in the share of those over 55 with employer-based insurance is due to the fact that many people in this age group retire or partially retire, the report explains).

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"EPHI is disappearing across the entire age and education spectrum, including prime-age workers and those with college degrees," the report's authors note. "These findings show that health insecurity is now a broadly shared American experience.

"As a consequence," they say, "the solution requires a broadly shared approach. The erosion of the employer-based system, with losses accumulating in even high-end sectors, along with the critical need to control healthcare costs, indicates that the provision of coverage needs to be at least partly 'taken out of the market.'"

As employers back out of the benefits business, individuals who try to get insurance on their own will discover just how expensive it is. Rates vary by state, but family coverage in a state like Virginia can cost as much as $24,000 a year.

This is why, in the very near future, "we will need 'universal programs 'that pool risk across large populations," Bernstein and Shierholz advise. Anyone who doesn't have EPHI (or doesn't like/cannot afford the EPHI that they have) could join these groups. In addition, if universal insurance is going to cover everyone at an affordable price -- even if they are sick -- the authors conclude that we will have to "mandate coverage, with subsidies for those unable to meet the mandate."

Although an individual mandate requiring that everyone join an insurance pool is not a popular concept, the report's authors are correct. Note that they are economists -- not politicians. And while economists can be dreary, the nice thing is that they are not worried about whether you will vote for them. And therefore, rather than telling people what they want to hear, they tend to address the reality of the numbers. Even better, these are excellent economists (I know Bernstein). So, not only are they confronting the numbers, they truly understand the numbers.

Unless a mandate requires that everyone have insurance, some young, healthy people would wait until they became sick to join a pool, expecting people who had been paying premiums into that program for years to now cover them. If that happened, ultimately only the sick and the elderly would buy insurance -- and prices would levitate to a point that virtually no one could afford it. If we are going to have a mandate, however, we have to provide adequate subsidies on a sliding scale for those who cannot afford the coverage.

How do we do that? This brings me back to the "basics" of healthcare spending, a series that I've been doing over the past few months, showing where our healthcare dollars are going -- and where we might pare waste, while pushing back against healthcare manufacturers who are gouging America.

Government Suppresses Major Public Health Report

This article originally appeared on Health Beat.

The Center for Public Integrity, a public interest investigative journalism organization, has obtained copies of a Centers for Disease Control and Prevention (CDC) study of environmental and health data in eight Great Lakes states that was scheduled for publication in July 2007. The report, which pointed to elevated rates of lung, colon, and breast cancer; low birth weight; and infant mortality in several of the geographical areas of concern has not yet been made public.

A few days before the report was slated to be released, it was pulled. Meanwhile, at precisely the same time, its lead author, Christopher De Rosa, has been removed from the position he held since 1992. The Center for Public Integrity is asking why.

The study, "Public Health Implications of Hazardous Substances in Twenty-Six U.S. Great Lakes Areas of Concern" was developed by the CDC's Agency for Toxic Substances and Disease Registry (ATSDR) at the request of the International Joint Commission, an independent U.S-Canadian organization that monitors and advises both governments on the use and quality of boundary waters.

The CDC report brings together two sets of data: environmental data on known "areas of concern" -- including superfund sites and hazardous waste dumps -- and separate health data collected by county or, in some cases, smaller geographical regions.

The study does not try to prove cause and effect. Instead, it outlines areas for further study and data collection on the link between pollution and health.

"Let's say we have a superfund site and we also find elevated risk of leukemia in the county -- is that related? We don't know, but people living in the area can logically argue that we ought to find out," Dr. Peter Orris, a professor at the University of Illinois School of Public Health and one of the peer reviewers of the study told Oneworld.net.

Since 2004, dozens of experts have reviewed various drafts of the study, including senior scientists at the CDC, Environmental Protection Agency, and other federal agencies, as well as scientists from universities and state governments, according to consumeraffairs.com. Orris is just one of the several experts who reviewed the study and who, along with the International Joint Committee in a December letter to the CDC, have called for the report's publication.

Canadian biologist Michael Gilbertson, a second peer reviewer, told the Center for Public Integrity that he felt the findings were being suppressed because they were "inconvenient." On the record, he added: "The whole problem with all this kind of work is wrapped up in that word 'injury.' If you have injury, that implies liability. Liability, of course, implies damages, legal processes, and costs of remedial action. The governments, frankly, in both countries are so heavily aligned with, particularly, the chemical industry, that the word amongst the bureaucracies is that they really do not want any evidence of effect or injury to be allowed out there."

Orris also raised concerns that the publication may have been halted based on orders outside the CDC. Once again, it seems that the Bush administration is trying to shrink government by making sure that a federal agency doesn't do its job-a problem that I wrote about here in a post titled "The FDA-- What Happens When You Starve the Beast." Corporate interests are protected--at the expense of the nation's citizens.

"I have an overall concern with respect to the culture of this administration, which permeates all levels of the scientific wing of the government," Orris said. "The administration has regularly cut funds so that they don't find statistics that could be potentially politically embarrassing -- for instance, the sampling of toxins in fish in the Great Lakes has been cut way back."

"If the messenger doesn't come with the message, no one knows it's there," he added.

CDC spokesperson Bernadette Burden told OneWorld that the report was held back because internal and external reviewers -- including the Environmental Protection Agency and several state health departments -- identified "numerous discrepancies and deficiencies" and determined a rigorous review was needed. She added that the CDC plans to release the report after the review is completed, in "weeks rather than months."

Burden cited several examples of "discrepancies", including the fact that the county-level health data "reflected people's illnesses from 1988 to 1997, while much of the environmental data used in the report came from the EPA's Toxic Release Inventory dated 2001 and the National Pollutant Discharge Elimination system with 2004 data."

As Oneworld.net points out, CDC did not clarify why these issues were not identified until July 2007 despite several years of review.

A new director of CDC's National Center for Environmental Health and ATSDR, Howard Frumkin, was appointed in July 2007, shortly before the report was due to be released. He replaced De Rosa, who had served as director of the Division of Toxicology for fifteen years. De Rosa was named special assistant in Frumkin's office -- a position that appears to carry "no real responsibilities" according to a Feb. 2008 letter from members of the Congressional Committee on Science and Technologies to CDC director Julie Gerberding. The letter called the move an apparent retaliation.

As many as 9 million people -- including residents of Chicago, Cleveland, Detroit, and Milwaukee -- may be at risk from exposure to pollutants including pesticides, dioxin, PCBs (Polychlorinated Biphenyls), and mercury, according to Sheila Kaplan, an investigative journalist who covered the story for the Center for Public Integrity.

Kaplan has read all three drafts of the study, from 2004 to 2007.

"It's important for this work to be followed up on," she told OneWorld. "What I hope from this report is that communities will say, 'We deserve to know this information and whether exposure to these chemicals and metals is killing us.' More work needs to be done."

You will find Kaplan's full report here.
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