After the needless death of his father, the author, a business executive, began a personal exploration of a health-care industry that for years has delivered poor service and irregular quality at astonishingly high cost. It is a system, he argues, that is not worth preserving in anything like its current form. And the health-care reform now being contemplated will not fix it. Here's a radical solution to an agonizing problem.
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Within the chemotherapy alumni corps there exists a mutual respect not unlike the bond shared by veterans of war. Sometimes that respect is silently conveyed; not everyone wants to talk about it. And sometimes it is shared in the shorthand of the battle-hardened.
Where?
Esophagus.
Who?
Sloan-Kettering.
What kind?
Cisplatin, fluorouracil, Drano,
Borax ... .
Side effects?
The usual: nausea, vomiting, hair loss. And the toes are still numb.
Yeah.
At this point the two chemo alums may begin to sense a phantom metallic taste at the back of their throat, a taste sometimes prompted by the intravenous infusion of the corrosive chemicals intended to save their lives. A strong drink might be in order; maybe two.
With that first, taste-altering sip, the two might begin to discuss another side effect that has received attention lately, the one rudely called "chemo brain": the cognitive fogginess that some patients experience after completing their regimen. That fogginess does not always completely lift, and oncologists are now taking seriously what they might once have dismissed as a complaint rooted in advanced age or cancer fatigue.
For me, reading about chemo brain has resurrected that faint taste of metal. I underwent chemotherapy in 1999 and again in 2004, thanks to a profoundly unwelcome recurrence. Depending on one's perspective, I was both unfortunate and fortunate. Unfortunate in that I endured all the concomitant fears and indignities, twice. Fortunate in that I had the option of chemotherapy, twice. Not all cancers respond; not everyone is so lucky.
I experienced all the typical side effects. Nausea: for several days at a time, though vomiting sometimes broke the monotony. Hair loss: I was balding anyway, so chemo saved me from comb-over delusions. Neuropathy: even now, my toes feel as if they were wrapped in cotton.
And, I now think, chemo brain — but a form that seems to be the common definition's opposite. My self-diagnosis is that I had a pre-existing case of fogginess that lifted during and immediately after my chemotherapy regimen: I suddenly experienced acute clarity. Then, as the effects and memory of chemotherapy faded, my confusion returned. Twice.
In 1999, before the diagnosis of cancer and the prognosis of let's hope for the best, I was enveloped in the haze of the everyday. Rather than rejoicing in a loving wife, a daughter not yet 2, a job I enjoyed — in being, simply, 41 — I created felonies out of matters not worth a summons. Traffic jams. Work conflicts. No Vienna Fingers in the cupboard. Felonies all.
Cancer, as is often said, tends to focus the mind. But my diagnosis hovered in the theoretical until the moment I began the first of six rounds of chemotherapy, each one requiring a five-day hospital stay. The nurse hung bags of clear, innocent-looking liquid from an IV pole, found a plump vein along my right arm — and the fog slowly lifted.
Sickened by the mere smell of food, I suddenly saw the wonder in the most common foods: an egg, a hard-boiled egg. Imprisoned and essentially chained to an IV pole, I would stare out my hospital room window at the people below, and feel a rush of the purest envy for their routine pursuits. Imagining the summer night air blowing cool through sweat-dampened shirts, I'd think how good a $3 ice cream would taste right about now, or a $5 beer, and how nice it would be to watch a baseball game of no consequence.
Men acting like boys, hitting, throwing, running on grass. I used to play baseball.
In the morning, after urinating away the remnants of poisons pumped into me, I would roll my IV-pole partner back to the window and study again the people below, moving, hustling, ambling, to jobs, to appointments, to a diner, maybe, for one of the fried-egg sandwiches served countless times every morning in Manhattan.
Gradually, from midsummer to late fall, the chemotherapy transformed me into a bald guy whose pallor was offset only by the hint of terror in his eyes. But the chemo also wiped away the muddle, revealing the world in all its mundane glory. I won't tell you that I wept at the sight of a puppy. But I did linger over my sleeping daughter to watch her tiny chest rise and fall. I did savor the complexities of a simple olive. I did notice fireflies, those dancing night sparks I had long ago stopped seeing.
After the chemotherapy, radiation and a few weeks to allow things to settle down, as my doctor put it, I was declared "clean" in February 2000. Never again, I vowed, would I take these simple things for granted. I was blind, but now I see.
The fog, of course, returned as the effects and memory of chemo faded, no matter that my wife and I were now blessed with two daughters. How I hated traffic jams. And the Vienna Fingers! Who ate the last Vienna Finger?
Then, in the late spring of 2004, probably while I was railing about something eminently unimportant, my cancer impolitely returned. Once again I felt the frigid breath of mortality at my neck. I also felt like a fool. What is the use of surviving cancer if you don't learn from it? Are improved by it? Am I so thick that I need to receive the life-is-precious message twice?
I returned to Sloan-Kettering for more chemotherapy and more of the same side effects — including my own manifestation of chemo brain. Fog lifted, world revealed.
After the chemotherapy came major surgery, which provided the exclamation point to whatever chemo was trying to tell me. Once again I was declared clean. And this time, by God! This time!
I became a walking platitude, telling friends without a trace of irony to live every day as though it were their last. Because, man, I've been there. And if I weren't so repressed I'd give you a hug.
Slowly, insidiously, the fog of the everyday has returned to enshroud me. It came in wispy strips, a little more, then a little more, wrapping me like a mummy. Just the other day, in the car with my wife and my two daughters, I began railing about being stuck in a traffic jam.
Perspective, my wife said. Perspective.
I could not hear her. You see, I'm struggling with this pre-existing human condition.
The pharmaceutical industry has developed thousands of medicines that have saved millions of lives, but it has also used its marketing muscle to successfully peddle expensive pills that are no more effective than older drugs sold at a fraction of the cost.
No drug better demonstrates the industry's salesmanship than Lexapro, an antidepressant sold by Forest Laboratories. And a document quietly made public recently by the Senate's Special Committee on Aging demonstrates just how Forest managed to turn a medicinal afterthought into a best seller.
The document, "Lexapro Fiscal 2004 Marketing Plan," is an outline of the many steps Forest used to make Lexapro a success. Because of concerns from Forest, the Senate committee released only 88 pages of the document, which may have originally run longer than 270 pages. "Confidential" is stamped on every page.
But those 88 pages make clear that one of the principal means by which Forest hoped to persuade psychiatrists, primary care doctors and other medical specialists to prescribe Lexapro was by finding many ways to put money into doctors' pockets and food into their mouths.
Frank Murdolo, a Forest spokesman, said the company was "aware" that its marketing plan was circulating around the Senate.
"We're aware of it but I can't give you any other comment on it," he said.
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Since the PSA screening test came into use in 1986, federal
government data show that the number of prostate cancer cases in the
United States has risen substantially, said the report in the Aug. 31
online issue of the Journal of the National Cancer Institute.
Treatments for prostate cancer include surgery and radiation therapy,
and possible side effects are incontinence and impotency.
"The ideal screening test would have no effect on the number of
cases," said study co-author Dr. H. Gilbert Welch, a professor of
medicine at the Dartmouth Medical School's Institute for Health
Policy and Clinical Practice. "It would change the time in life that
the cancers were diagnosed, but not the number. Instead, there has
been a sustained change in the number of cases -- 1.3 million more
that would not have been diagnosed previously."
The death rate from prostate cancer has fallen in the United States,
but not necessarily because of mass screening, Welch contended.
"There are a number of reasons why mortality might fall, but the most
obvious is that we have better treatment," he said. "Even without
early detection, I expect mortality would fall."
Results of a European study reported earlier this year indicated that
"to save the life of one man, 50 must be over-diagnosed," he said.
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http://health.usnews.com/articles/health/healthday/2009/08/31/
prostate-cancer-over-diagnosed-study.html
In recent town-hall meetings, President Barack Obama has called for a national debate on health-care reform based on facts. It is fact that more than 40 million Americans lack coverage and spiraling costs are a burden on individuals, families and our economy. There is broad consensus that these problems must be addressed. But the public is skeptical that their current clinical care is substandard and that no government bureaucrat will come between them and their doctor. Americans have good reason for their doubts—key assertions about gaps in care are flawed and reform proposals to oversee care could sharply shift decisions away from patients and their physicians.
Consider these myths and mantras of the current debate:
• Americans only receive 55% of recommended care. This would be a frightening statistic, if it were true. It is not. Yet it was presented as fact to the Senate Health and Finance Committees, which are writing reform bills, in March 2009 by the Agency for Healthcare Research and Quality (the federal body that sets priorities to improve the nation's health care).
The statistic comes from a flawed study published in 2003 by the Rand Corporation. That study was supposed to be based on telephone interviews with 13,000 Americans in 12 metropolitan areas followed up by a review of each person's medical records and then matched against 439 indicators of quality health practices. But two-thirds of the people contacted declined to participate, making the study biased, by Rand's own admission. To make matters worse, Rand had incomplete medical records on many of those who participated and could not accurately document the care that these patients received.
For example, Rand found that only 15% of the patients had received a flu vaccine based on available medical records. But when asked directly, 85% of the patients said that they had been vaccinated. Most importantly, there were no data that indicated whether following the best practices defined by Rand's experts made any difference in the health of the patients.
In March 2007, a team of Harvard researchers published a study in the New England Journal of Medicine that looked at nearly 10,000 patients at community health centers and assessed whether implementing similar quality measures would improve the health of patients with three costly disorders: diabetes, asthma and hypertension. It found that there was no improvement in any of these three maladies.
Dr. Rodney Hayward, a respected health-services professor at the University of Michigan, wrote about this negative result, "It sounds terrible when we hear that 50 percent of recommended care is not received, but much of the care recommended by subspecialty groups is of a modest or unproven value, and mandating adherence to these recommendations is not necessarily in the best interest of patients or society."
• The World Health Organization ranks the U.S. 37th In the world in quality. This is another frightening statistic. It is also not accurate. Yet the head of the National Committee for Quality Assurance, a powerful organization influencing both the government and private insurers in defining quality of care, has stated this as fact.
The World Health Organization ranks the U.S. No. 1 among all countries in "responsiveness." Responsiveness has two components: respect for persons (including dignity, confidentiality and autonomy of individuals and families to make decisions about their own care), and client orientation (including prompt attention, access to social support networks during care, quality of basic amenities and choice of provider). This is what Americans rightly understand as quality care and worry will be lost in the upheaval of reform. Our country's composite score fell to 37 primarily because we lack universal coverage and care is a financial burden for many citizens.
• We need to implement "best practices." Mr. Obama and his advisers believe in implementing "best practices" that physicians and hospitals should follow. A federal commission would identify these practices.
On June 24, 2009, the president appeared on "Good Morning America" with Diane Sawyer. When Ms. Sawyer asked whether "best practices" would be implemented by "encouragement" or "by law," the president did not answer directly. He said that he was confident doctors "want to engage in best practices" and "patients are going to insist on it." The president also said there should be financial incentives to "allow doctors to do the right thing."
There are domains of medicine where a patient has no control and depends on the physician and the hospital to provide best practices. Strict protocols have been developed to prevent infections during procedures and to reduce the risk of surgical mishaps. There are also emergency situations like a patient arriving in the midst of a heart attack where standardized advanced treatments save many lives.
But once we leave safety measures and emergency therapies where patients have scant say, what is "the right thing"? Data from clinical studies provide averages from populations and may not apply to individual patients. Clinical studies routinely exclude patients with more than one medical condition and often the elderly or people on multiple medications. Conclusions about what works and what doesn't work change much too quickly for policy makers to dictate clinical practice.
An analysis from the Ottawa Health Research Institute published in the Annals of Internal Medicine in 2007 reveals how long it takes for conclusions derived from clinical studies about drugs, devices and procedures to become outdated. Within one year, 15 of 100 recommendations based on the "best evidence" had to be significantly reversed; within two years, 23 were reversed, and at 5 1/2 years, half were contradicted. Americans have witnessed these reversals firsthand as firm "expert" recommendations about the benefits of estrogen replacement therapy for postmenopausal women, low fat diets for obesity, and tight control of blood sugar were overturned.
Even when experts examine the same data, they can come to different conclusions. For example, millions of Americans have elevated cholesterol levels and no heart disease. Guidelines developed in the U.S. about whom to treat with cholesterol-lowering drugs are much more aggressive than guidelines in the European Union or the United Kingdom, even though experts here and abroad are extrapolating from the same scientific studies. An illuminating publication from researchers in Munich, Germany, published in March 2003 in the Journal of General Internal Medicine showed that of 100 consecutive patients seen in their clinic with high cholesterol, 52% would be treated with a statin drug in the U.S. based on our guidelines while only 26% would be prescribed statins in Germany and 35% in the U.K. So, different experts define "best practice" differently. Many prominent American cardiologists and specialists in preventive medicine believe the U.S. guidelines lead to overtreatment and the Europeans are more sensible. After hearing of this controversy, some patients will still want to take the drug and some will not.
This is how doctors and patients make shared decisions—by considering expert guidelines, weighing why other experts may disagree with the guidelines, and then customizing the therapy to the individual. With respect to "best practices," prudent doctors think, not just follow, and informed patients consider and then choose, not just comply.
• No government bureaucrat will come between you and your doctor. The president has repeatedly stated this in town-hall meetings. But his proposal to provide financial incentives to "allow doctors to do the right thing" could undermine this promise. If doctors and hospitals are rewarded for complying with government mandated treatment measures or penalized if they do not comply, clearly federal bureaucrats are directing health decisions.
Further, at the AMA convention in June 2009, the president proposed linking protection for physicians from malpractice lawsuits if they strictly adhered to government-sponsored treatment guidelines. We need tort reform, but this is misconceived and again clearly inserts the bureaucrat directly into clinical decision making. If doctors are legally protected when they follow government mandates, the converse is that doctors risk lawsuits if they deviate from federal guidelines—even if they believe the government mandate is not in the patient's best interest. With this kind of legislation, physicians might well pressure the patient to comply with treatments even if the therapy clashes with the individual's values and preferences.
The devil is in the regulations. Federal legislation is written with general principles and imperatives. The current House bill H.R. 3200 in title IV, part D has very broad language about identifying and implementing best practices in the delivery of health care. It rightly sets initial priorities around measures to protect patient safety. But the bill does not set limits on what "best practices" federal officials can implement. If it becomes law, bureaucrats could well write regulations mandating treatment measures that violate patient autonomy.
Private insurers are already doing this, and both physicians and patients are chafing at their arbitrary intervention. As Congress works to extend coverage and contain costs, any legislation must clearly codify the promise to preserve for Americans the principle of control over their health-care decisions.
Dr. Groopman, a staff writer for the New Yorker, and Dr. Hartzband are on the staff of Beth Israel Deaconess Medical Center in Boston and on the faculty of Harvard Medical School.
The story of Mr. Kennedy's battle with glioblastoma is one that raises questions of hope and reality and of how much the health care system should pay for hope. As has happened with most cancers in the nation's 40-year war on cancer, progress on glioblastomas has been incremental. With these deadly brain cancers in particular, the disease remains poorly understood. And even though many patients, like Mr. Kennedy, who sought care at Duke University Medical Center, travel looking for cutting-edge care, there are limited options for treatment that have been shown to help.
Yet the cost is high. Estimates of the total cost from experts at various medical centers range from $100,000 to $500,000.
"If you have the insurance to come to Duke, no problem," said Dr. Henry Friedman, co-director of the brain tumor center at Duke. But if patients are uninsured or underinsured, the situation is different. Then, he said, "we will work with their home physician to give them our expertise."
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