The blog will continue to feature a thoughtful and diverse stable of contributors who work in all aspects of health care, from doctors and insurers to academics, consumers, lawmakers, employers and activists.
Saturday, October 24, 2009
Should doctors disclose their own health problems to their patients? As Dr. Anne Brewster, a Boston internist, explains on the CommonHealth blog, doctors are typically taught to keep an emotional distance and are cautioned against sharing personal information with patients. Dr. Brewster explains:
But recently, Dr. Brewster decided to open up about her own health to ease the fears of her patient, a young woman who was just diagnosed with multiple sclerosis.
She began to cry. "I am so young. There was so much I wanted to do. I wanted to have a family."
"I have the same disease," I told her. I had decided to reach across the space between us and to share a bit of myself. I went on to say that I have four kids, that I still ski, run, play lacrosse and work as a doctor, that I am healthy and energetic. "There is tremendous variability in how people do," I offered, "and some people do very well. It is the unknown that is scary."
To garble Greta Garbo a bit, I want to be at home.
More than ever these days, I want to shrink the world to the couple of rooms in my house where I'm most comfortable. I've been declining requests for my time, and the social whirl is less compelling than it ever was. To me, a perfect evening often means stretching out in the den and vanishing into a good novel or compact disc.
Over the past year, as I've undergone treatment for aggressive prostate cancer — surgery, radiation, hormone therapy — this was something I needed to do. It was part of the healing process, of coming to grips with my new vulnerability.
I have to admit that the impulse is more dangerous now, as I struggle with post-treatment depression. It is a thin line between the womb of healing and cutting yourself off from the world.
Even so, I want to nest. I'm doing well physically — my blood tests couldn't be better, and I regularly take five-mile walks — but my spirit is still convalescing. I crave homely days built around writing, reading and time spent with family and friends.
I grew up in northern New England, and I'm feeding my inner Yankee hermit who would like nothing better than to live in a cabin a couple of miles down a pocked and rutted logging road. I come from a long and leathery line of ornery, horn-handed men who burned their lonesome days wrestling with snapping turtles, squinting at pickerel, junking cars and picking the dump.
I prefer my coffee — and ale — dark, bold and bitter these days, but I take pleasure in the most gentle rhythms of daily life: walking the dog, meeting a crony for breakfast, getting a haircut. And solitude is an agreeable pal.
I'm still reinterpreting myself in the face of cancer, and that takes time and quiet. It can't be rushed, and I can't do it successfully if I'm caught up in our huckster culture's unrelenting ruckus.
I don't want to be among tens of thousands of people shrilling and shrieking at a football game or a Springsteen concert at Giants Stadium. An hour of hushed conversation at Starbucks is more than enough, is the true DNA of our finite lives.
Through all of this I've been simplifying my life, both consciously and subconsciously, as if trying to flense myself to something elemental.
I have discovered the deep joy of culling my possessions, rather than being possessed by them. It thrills me to dispense with moldering piles of crispy paperbacks, rickety stacks of compact discs and ragged flannel shirts that look as if they once belonged to Kurt Cobain. I obsessively kill old e-mail messages as if they were cancer cells.
Our younger son, Owen, took our second car to college this fall, and I'm glad it is gone. The more errands I do on foot, the better.
And lately I've been gorging on young adult fantasy novels: Books chockablock with magic and mystery by Neil Gaiman and Jonathan Stroud, J. K. Rowling and Rick Riordan, Ursula K. Le Guin and Cornelia Funke.
I feel as if I'm questing after my core boyhood innocence, trying to conjure the dreamy kid who spent hour upon hour on the summer porch writing and reading and drawing as the Boston Red Sox of Carl Yastrzemski and Tony Conigliaro played on the staticky Sylvania radio that had the broken, upside-down "S."
I miss the boy I was — everyone called me Andy in that time and place — who couldn't imagine having cancer or doing the zombie shuffle through the shadow land of depression.
As I took the cure in my den recently, inhaling "Inkheart" by Ms. Funke and snubbing (with great relish) the insistent ring of the telephone, I realized that I'm trying to recreate that long-ago porch, trying to make my world manageable enough right now to wrap it about myself like a prayer shawl.
While many people may not have heard of amyotrophic lateral sclerosis or A.L.S., they probably know the degenerative neurological condition as Lou Gehrig's disease, which forced the baseball player to retire in 1939.
According to the A.L.S. Association, the disease afflicts an estimated 30,000 Americans and strikes people between ages 40 and 70. Early symptoms include weakness in a hand or foot, followed by difficulty with speaking, swallowing and walking. As the disease progresses, nerve cells waste away or die and can no longer send messages to muscles, leading to muscle wasting and paralysis, and eventually death. The disease affects about 1 in 100,000 people.
In the latest installment of Patient Voices, Karen Barrow, a producer for The New York Times, speaks with six men and women who share how their lives have changed as a result of this devastating illness.
You will meet Wes Rose, 37, a father of two young boys in Glenside, Pa., who shared his fears with his wife about the effect his illness would have on his sons. "I was upset what kind of life my boys would have with a disabled father," Mr. Rose said, "and she said, 'If you're strong with this, they'll learn strength from you.' I really am trying to make this as positive as possible for them, to make it a learning experience rather than a whole lot of negativity."
Another person you will meet is Eric Lowen, 57, of Valencia, Calif., who developed the first signs of A.L.S. in 2002. Mr. Lowen said that despite the limitations of his disease, he still had fun on vacations with his family but worried about the toll his illness was taking on them.
"The hardest part for me is the pain I'm bringing everybody, the fact that my children have to deal with it, my wife," he said. "I wish I could disappear quietly, but it doesn't work like that."
To listen to all the voices of A.L.S., click on the Patient Voices link. And check out a video recording session with Mr. Lowen, who co-wrote a song, "Learning to Fall," for patients with A.L.S. and their families. His voice remains strong, and you can watch the recording session on the video link below. (The song begins about two minutes into the video.)
Wednesday, October 21, 2009
The American Cancer Society, which has long been a staunch defender of most cancer screening, is now saying that the benefits of detecting many cancers, especially breast and prostate, have been overstated.
It is quietly working on a message, to put on its Web site early next year, to emphasize that screening for breast and prostate cancer and certain other cancers can come with a real risk of overtreating many small cancers while missing cancers that are deadly.
"We don't want people to panic," said Dr. Otis Brawley, chief medical officer of the cancer society. "But I'm admitting that American medicine has overpromised when it comes to screening. The advantages to screening have been exaggerated."
Prostate cancer screening has long been problematic. The cancer society, which with more than two million volunteers is one of the nation's largest voluntary health agencies, does not advocate testing for all men. And many researchers point out that the PSA prostate cancer screening test has not been shown to prevent prostate cancer deaths.
The cancer society's decision to reconsider its message about the risks as well as potential benefits of screening was spurred in part by an analysis published Wednesday in The Journal of the American Medical Association, Dr. Brawley said.
In it, researchers report a 40 percent increase in breast cancer diagnoses and a near doubling of early stage cancers, but just a 10 percent decline in cancers that have spread beyond the breast to the lymph nodes or elsewhere in the body. With prostate cancer, the situation is similar, the researchers report.
If breast and prostate cancer screening really fulfilled their promise, the researchers note, cancers that once were found late, when they were often incurable, would now be found early, when they could be cured. A large increase in early cancers would be balanced by a commensurate decline in late-stage cancers. That is what happened with screening for colon and cervical cancers. But not with breast and prostate cancer.
Still, the researchers and others say, they do not think all screening will — or should — go away. Instead, they say that when people make a decision about being screened, they should understand what is known about the risks and benefits.
For now, those risks are not emphasized in the cancer society's mammogram message which states that a mammogram is "one of the best things a woman can do to protect her health."
Dr. Brawley says mammograms can prevent some cancer deaths. However, he says, "If a woman says, 'I don't want it,' I would not think badly of her but I would like her to get it."
But some, like Colin Begg, a biostatistician at Memorial Sloan-Kettering Cancer Center in New York, worry that the increased discussion of screening's risks is going to confuse the public and make people turn away from screening, mammography in particular.
"I am concerned that the complex view of a changing landscape will be distilled by the public into yet another 'screening does not work' headline," Dr. Begg said. "The fact that population screening is no panacea does not mean that it is useless," he added.
The new analysis — by Dr. Laura Esserman, a professor of surgery and radiology at the University of California, San Francisco, and director of the Carol Frank Buck Breast Care Center there, and Dr. Ian Thompson, professor and chairman of the department of urology at The University of Texas Health Science Center, San Antonio — finds that prostate cancer screening and breast cancer screening are not so different.
Both have a problem that runs counter to everything people have been told about cancer: They are finding cancers that do not need to be found because they would never spread and kill or even be noticed if left alone. That has led to a huge increase in cancer diagnoses because, without screening, those innocuous cancers would go undetected.
At the same time, both screening tests are not making much of a dent in the number of cancers that are deadly. That may be because many lethal breast cancers grow so fast they spring up between mammograms. And the deadly prostate ones have already spread at the time of cancer screening. The dilemma for breast and prostate screening is that it is not usually clear which tumors need aggressive treatment and which can be left alone. And one reason that is not clear, some say, is that studying it has not been much of a priority.
"The issue here is, as we look at cancer medicine over the last 35 or 40 years, we have always worked to treat cancer or to find cancer early," Dr. Brawley said. "And we never sat back and actually thought, 'Are we treating the cancers that need to be treated?' "
The very idea that some cancers are not dangerous and some might actually go away on their own can be hard to swallow, researchers say.
"It is so counterintuitive that it raises debate every time it comes up and every time it has been observed," said Dr. Barnett Kramer, associate director for disease prevention at the National Institutes of Health.
It was first raised as a theoretical possibility in the 1970s, Dr. Kramer said. Then it was documented in a rare pediatric cancer, but was dismissed as something peculiar to that cancer. Then it was discovered in common cancers as well, but it is still not always accepted or appreciated, he said.
But finding those insignificant cancers is the reason the breast and prostate cancer rates soared when screening was introduced, Dr. Kramer said. And those cancers, he said, are the reason screening has the problem called overdiagnosis — labeling innocuous tumors cancer and treating them as though they could be lethal when in fact they are not dangerous.
"Overdiagnosis is pure, unadulterated harm," he said.
Dr. Peter Albertsen, chief and program director of the urology division at the University of Connecticut Health Center, said that had not been an easy message to get across. "Politically, it's almost unacceptable," Dr. Albertsen said. "If you question overdiagnosis in breast cancer, you are against women. If you question overdiagnosis in prostate cancer, you are against men."
Dr. Esserman hopes that as research continues on how to advance beyond screening, distinguishing innocuous tumors from dangerous ones, people will be more realistic about what screening can do.
"Someone may say, 'I don't want to be screened' " she said. "Another person may say, 'Of course I want to be screened.' Just like everything in medicine, there is no free lunch. For every intervention, there are complications and problems."
Dementia is often viewed as a disease of the mind, an illness that erases treasured memories but leaves the body intact.
But dementia is a physical illness, too — a progressive, terminal disease that shuts down the body as it attacks the brain. Although the early stages can last for years, the life expectancy of a patient with advanced dementia is similar to that of a patient with advanced cancer.
The lack of understanding about the physical toll of dementia means that many patients near the end of life are subjected to aggressive treatments that would never be considered with another terminal illness. People with advanced dementia are often given dialysis and put on ventilators; they may even get preventive care that cannot possibly help them, like colonoscopies and drugs for osteoporosis or high cholesterol.
"You can go to an intensive-care unit in most places," said Dr. Greg A. Sachs, chief of general internal medicine and geriatrics at Indiana University School of Medicine, "and you'll find people with dementia getting very aggressive treatment."
The continued focus on treatment to prolong life often means that pain relief is inadequate, and symptoms like confusion and anxiety are worsened. A new study suggests that family members would be far less likely to subject their loved ones to such treatment if they had a better understanding of dementia as progressive, debilitating illness that ultimately shuts down the body after years of mental deterioration.
Harvard researchers recently followed 323 residents of 22 nursing homes. All had end-stage dementia, meaning that they no longer recognized family members, could speak fewer than six words and were incontinent and bedbound. During the 18-month study period, more than half of the patients died.
During the last three months of life, 41 percent of the patients received at least one "burdensome" treatment, like transport to the emergency room, hospitalization, feeding tubes or intravenous treatments. Advanced dementia patients are particularly prone to infections because of incontinence, risk of bedsores, a depressed immune response and inability to report symptoms.
When the investigators looked more deeply into the reasons for treatment decisions, they discovered stark differences based on what family members knew about dementia. When they understood its progressive and terminal nature, only 27 percent of the patients received aggressive care. For family members who did not understand the disease, the figure was 73 percent.
"When family members understood the clinical course of dementia and the poor prognosis, the patients were far less likely to undergo these distressing interventions," said the study's lead author, Dr. Susan L. Mitchell, senior scientist at the Institute for Aging Research of Hebrew SeniorLife in Boston. "Dementia is a terminal illness and needs to be recognized as such so these patients receive better palliative care."
The study also found that pain control was often inadequate. One in four subjects were clearly suffering from pain, but that number may understate the problem, because the patients were unable to talk about their pain.
Dr. Sachs, at Indiana, notes that care for patients with dementia has changed very little in the past 30 years. As a teenager, he watched his grandmother decline from Alzheimer's disease. During her final months, she was repeatedly treated for infections and put in restraints or sedated to control agitation.
"Seeing my grandmother in that state was so distressing that my mother eventually stopped taking the grandchildren to visit," Dr. Sachs wrote last week in an editorial in The New England Journal of Medicine. "My grandmother had little in the way of comfort or company toward the end. In my medical training, I learned how my grandmother's final months were typical for people dying from dementia."
A 2005 report from the Alzheimer's Association showed troubling trends in care at the end of life. In a sweeping review of the medical literature, the investigators found that 71 percent of nursing home residents with advanced dementia died within six months of admission, yet only 11 percent were referred to hospice care, which focuses on comfort rather than active treatment.
Simply transferring a dementia patient from the nursing home to a hospital can lead to confusion, falls or a decline in eating — which in turn, often leads to further aggressive treatment.
Geriatricians say a large part of the problem is that the patients are unable to make their wishes known. In the absence of a living will, family members often struggle with guilt and are afraid to stop aggressive treatment because they do not want to be seen as abandoning a loved one in mental decline.
Dr. Sachs says doctors need to spend more time explaining the prognosis for advanced dementia, making it clear that palliative care does not mean less care.
"We're not talking about aggressive care versus no care," he said. "Palliative care is aggressive and attentive and focused on symptom management and support of the patient and family. It's not any less excellent care."
Earlier this month, a study published in the journal Science answered a question that medical scientists had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic murine leukemia virus-related virus, or XMRV: Was it a human infection?
XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus — the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).
That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.
The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation's presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors "had worked themselves into a frenzy." The sufferers, a C.D.C. investigator told me at the time, were "not normal Americans."
When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on "chronic fatigue syndrome" — the use of "syndrome" rather than "disease" suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make "chronic disbursements," as one of the academics joked.
An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as "overly complicated and too confusing for many nonmedical persons."
Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It's no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.
Many people don't realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.
Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS: "My H.I.V. patients for the most part are hale and hearty," she said, noting that billions of dollars have been spent on AIDS research. "Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families."
Congress has appropriated money for research on chronic fatigue syndrome, too, though in far smaller amounts, but the C.D.C. has seemed unwilling to spend it productively. A decade ago, investigations by the inspector general for the Department of Health and Human Services and what was then called the General Accounting Office revealed that for years government scientists had been funneling millions meant for research on this disease into other pet projects.
As public health officials focused on psychiatric explanations, the virus apparently spread widely. In the new study, active XMRV infections were found in 3.7 percent of the healthy controls tested. Roughly the same degree of infection in healthy people has been found in the prostate research. If this is representative of the United States as a whole, then as many as 10 million Americans may carry the retrovirus.
It is estimated that more than a million Americans are seriously ill with the disease. (Not everyone infected with XMRV will necessarily get chronic fatigue syndrome — in the same way that not all of the 1.1 million Americans infected with H.I.V. will get AIDS.)
Hints that a retroviral infection might play a role in chronic fatigue syndrome have been present from the beginning. In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 chronic fatigue patients. The C.D.C. went so far as to try to replicate her effort, but refused to follow her exacting methods for finding the virus. In addition, the centers' blood samples became contaminated, and some people at the agency said that administrators ended the research prematurely. Rather than admit any such failure, the C.D.C. publicly criticized Dr. DeFreitas's findings.
That episode had a chilling effect on other researchers in the field, and the search for the cause was largely abandoned for 20 years.
Now, Judy Mikovits, the retrovirus expert at the Whittemore Peterson Institute, in Reno, Nev., who led the recent study, has revisited the cold case. Not surprisingly, the institute is private, created by the parents of a woman who suffers from chronic fatigue syndrome. But Dr. Mikovits collaborated with scientists at the National Cancer Institute and the Cleveland Clinic.
When she began her work on this disease in 2006, Dr. Mikovits, a 22-year veteran of the National Cancer Institute, knew little about chronic fatigue syndrome. But she was intrigued that an unusually high number of patients being followed by a Nevada doctor were suffering rare lymphomas and leukemias; at least one had died. And she was also impressed that the doctor, Dan Peterson, had built an extraordinary repository of more than 8,000 chronic fatigue syndrome tissue samples going back as far as 1984.
"My hypothesis was, 'This is a retrovirus,' and I was going to use that repository to find it," Dr. Mikovits told me.
What she found was live, or replicating, XMRV in both frozen and fresh blood and plasma, as well as saliva. She has found the virus in samples going back to 1984 and in nearly all the patients who developed cancer. She expects the positivity rate will be close to 100 percent in the disease.
"It's amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives," Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.
For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of "chronic fatigue syndrome" can't come soon enough.
Hillary Johnson is the author of "Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic."