Saturday, September 3, 2011

When Doctors Become Patients -

FRANK SINATRA'S greatest hits album, filtered through the jet engine noise of the Varian linear accelerator, was not what I felt like hearing at 9 a.m. I made a mental note to bring a Steely Dan CD for my next appointment.

I was strapped to a hard metal sheet, and the technician had just bolted my head down using a black mask that had been heat-molded to the contours of my face. The sheet and I would slide first up and then back in an overhead arc that would send high-energy electrons into my head and neck from computerized data sets outlining my throat cancer and its spread into adjacent lymph nodes.

I wasn't a doctor anymore. I was a patient.

That was almost three years ago. This spring, the Archives of Internal Medicine published a much-discussed study that showed that doctors might recommend different treatments for their patients than they would for themselves. They were far more likely to prescribe for patients a potentially life-saving treatment with severe side effects than they were to pick that treatment for themselves.

Understandably, people are worried that this means doctors know something they're not telling their patients. But my own experience with illness taught me a simpler truth: when it comes to their own health, doctors are as irrational as everyone else.

I had squamous cell carcinoma of the throat, a pea-size lesion first, then the cancer spread to my lymph nodes. I knew that this was a bad actor; I'd seen the disease and its consequences many times while wearing a white coat, a stethoscope dangling from my neck, at a patient's bedside.

At the beginning, I knew intellectually what was in store for me. I allowed myself to be a patient, to trust my doctors and let them lead me through the treatments and complications and side effects that rolled out with alarming regularity. I submitted to a brutal treatment regimen that had not changed in over 40 years. Two thousand units of radiation a day for 35 days, with high doses of platinum chemotherapy, followed, a year later, by a dissection of the right side of my neck to remove the lymph nodes in which the cancer had reappeared.

I soon realized I had no idea what kind of rabbit hole I had fallen into.

For my doctors, it was all about the numbers, the staging of my cancer, my loss of weight and strength. For me, too, it was about the numbers: the six feedings I pushed through the syringe into the plastic tube in my stomach every day; the number of steps I could take by myself; how many hours I had to wait before I could grind up the pill that allowed me to slip into unconsciousness.

But it was also about more: my world progressively shrinking to a small, sterile, asteroidal universe between the interminable nausea and the chemobrain that left my head both empty and feverish, between survival and death.

Survival was a percentage, and not a horrible one — 75 percent if I completed the treatment regimen, by the reckoning of my physicians. But more and more I found myself thinking about what would happen if I was in that 25 percent. If I completed the regimen and the tumor came back, there were no other treatment options. It was morphine and palliative care. I was 58 years old. Death was a 100 percent certainty, eventually. So did it matter?

During one particularly desperate hospitalization, after receiving blood transfusions and a drug to stimulate my white cells, I decided that I had had enough. I refused further radiation and chemotherapy. I lay in my bed and watched the events around me — the distress of my family, the helplessness of my doctors — without anxiety, comfortable that I had made the correct decision.

My doctors couldn't override it or persuade me to change my mind, but, luckily, my wife, Diana, could and did. From my mental cocoon in the hospital bed, I could sense Diana at my side. "You're going to finish the treatment," she said softly. I did not have the energy, or perhaps the will, to disagree. She wheeled me down herself to finish my radiation treatments in the basement of the hospital.

My dreams of dying were not the products of anxious moments of terror. The life force had simply slipped away and made me ready to die. It had also rendered me incapable of making the right decision for myself. My disease was treatable and the odds were favorable. My doctors were professional and gentle but ultimately could not decide for me. When neither doctor nor patient can make the right decision, it is vital to have a caring family — though even here the legal and ethical issues are complicated.

Next week it will be three years since I first noticed the hoarseness that was a symptom of cancer, and I am back to work and a busy life. But my illness has changed me profoundly as a physician. Even having lived through this illness, I'm not sure that I would be any better prepared if I had to relive it again. No amount of doctoring can prepare you for being a patient.

If anything, it's that recognition of vulnerability as well as expertise that makes me a better doctor today.

Eric D. Manheimer, the medical director of Bellevue Hospital Center, is the author of the forthcoming memoir "Twelve Patients."

Friday, September 2, 2011

Getting Doctors to Wash Their Hands -

A new study has a message for doctors and nurses who fail to wash their hands: Don't think about yourself. Think about your patients.

Getting health care professionals to comply with notices to wash their hands before and after dealing with patients has been something of a thorn in the side of many hospitals. Although this simple measure limits the spread of sickness — and could potentially reduce the nation's hospital health care bill by billions of dollars — many doctors and nurses simply ignore it. Compliance rates for hand washing in American hospitals are only around 40 percent,and years of awareness programs urging doctors to wash up or use disinfectant gels have had little effect.

Part of the problem, according to a forthcoming study in the journal Psychological Science, are the actual signs posted in hospital washrooms urging health care workers to wash up. Changing the message from "Wash Your Hands to Protect Yourself" to "Wash Your Hands to Protect Your Patients," the study found, could motivate some doctors and nurses to wash their hands more frequently.

"There's this perception among some health care providers that 'I'm around sick people all the time and I don't get sick very often, so my immune system is extra strong,'" said David Hofmann, an author of the study and a professor of organizational behavior at the University of North Carolina at Chapel Hill. "But if you go back to the Hippocratic oath that all doctors adhere to, it's 'First do no harm.' So if you have a sign that says 'Hey, look, here's a really vulnerable person you're about to walk in and see,' then maybe a sign focused on that person will cue this larger core value in the physician to protect the patient."

To find out, Dr. Hofmann and his co-author, Adam Grant, took baseline measurements of the amount of soap and disinfectant caregivers used in a large North Carolina hospital. Then they measured the change in soap use when they put up different signs by the dispensers. One sign read "Hand Hygiene Prevents You from Catching Diseases." Another read "Hand Hygiene Prevents Patients from Catching Diseases." And a third sign, which served as a control, had a generic message: "Gel In, Wash Out."

The patient-focused sign produced a 33 percent increase in the amount of soap and disinfectant used per dispenser over a two-week period, compared with the other signs.

In a second phase of the study, trained observers recorded how often doctors and nurses physically washed or disinfected their hands. The sign urging doctors to think about patients produced a roughly 10 percent spike in hand washing compliance, a jump that was small but statistically significant.

"We think it's proof that this identifies a vulnerable person and therefore cues more responsibility on the health care worker to protect that patient," Dr. Hofmann said. "We think that signs focused on vulnerable patients seem to have a stronger effect, and we would encourage hospitals to adopt that kind of approach."

Some experts caution that while any increase in hand washing rates can go a long way, the causes of low compliance are complex and varied. A 2009 report from the Joint Commission, a group that accredits more than 19,000 hospitals, nursing homes and other health care providers, found that the reasons for skipping soap varied from hospital to hospital, and even from unit to unit on a single floor. Some doctors said their hands were usually too full when they walked into a patient's room. Others complained that too much soap dried out their hands or said the placement of sinks and gel dispensers was inconvenient.

Still, the data also showed that when hand hygiene compliance in a hospital went up, patient infection rates went down, and that discussing this specific source of patient harm with doctors was an effective way to persuade caregivers to wash up more frequently, said Anne Marie Benedicto, the chief of staff for the Joint Commission and the Center for Transforming Healthcare. She said that simply changing the messages of signs urging hand washing was unlikely to eradicate the problem, but she called it a step in the right direction.

"I would say that if these issues could be solved by a poster, we would have solved them a long time ago," she said. "But the whole idea of creating an environment that's focused on patient safety is a good way of thinking about it."

Tuesday, August 30, 2011

Panel urges the creation of a compensation system for research victims - The Washington Post

The United States should create a system to compensate people who are harmed by participating in scientific research, a panel of federal advisers recommended Tuesday.

Many other countries require sponsors of studies and researchers to carry insurance for research-related injuries or have other ways to compensate volunteers who are harmed, making the United States an "outlier," the subcommittee of the Presidential Commission for the Study of Bioethical Issues concluded.

"The panel felt strongly that it was wrong and a mistake that the United States was an outlier in not specifying any system for compensation for research subjects other than, 'You get a lawyer and sue,'" said Amy Gutmann of the University of Pennsylvania, who chairs the commission and served on the subcommittee.

The recommendation came on the second day of a two-day public hearing to air the results of a commission probe into medical experiments that the U.S. government researchers conducted in Guatemala in the 1940s.

The recently uncovered studies involved more than 5,500 men, women and children who were unwittingly drafted into tests involving the venereal diseases syphilis, gonorrhea and chancroid. The tests included deliberately — sometimes grotesquely — attempting to infect subjects without their permission or knowledge.

On Monday, the commission revealed that the researchers had obtained consent first before conducting earlier, similar experiments on inmates in Terre Haute, Ind., and hid what they were doing in Guatemala. This, the commission found, clearly showed that the doctors knew their conduct was unethical.

In the government-sponsored studies conducted in Guatemala between 1946 and 1948, doctors tried to infect prisoners, soldiers and mental patients by giving them prostitutes who were carrying the diseases or were infected by the researchers. The researchers also scraped sensitive parts of subjects' anatomy to expose wounds to disease-causing bacteria, poured infectious pus into subjects' eyes, and injected some victims' spines.

On Tuesday, the 13-member commission discussed the 48-page report outlining the findings of a 14-member international subcommittee investigating whether current rules adequately protect people in medical studies from physical harm or unethical treatment internationally.

The experts in bioethics and biomedical research from India, Uganda, China, Russia, Brazil, Argentina, Belgium Guatemala, Egypt and the United States met in London, Washington and Philadelphia and made five broad recommendations.

"The United States should implement a system to compensate research subjects for research related injuries," said Christine Grady of the National Institutes of Health, who helped present the findings of the subcommittee. "Many countries around the world and some U.S. research institutions have actually moved forward and developed compensation systems."

One "promising model" for a compensation system could be the U.S. National Vaccine Injury Compensation Program, a no-fault alternative to traditional lawsuits that compensates people injured by vaccines, the panel said.

India and Brazil have bioethics committees that "ensure that research sponsors pay compensation to participants injured in research," the panel wrote. The University of Washington uses a "self-insured no-fault" system.

President Obama ordered the probe when the experiments were made public in October along with an unusual public apology by his secretaries of state and health and human services.

After filing a report in September, the commission will meet again in November to come up with ways to bolster protections for research subjects internationally and in the United States. It will issue a final report in December. The Guatemalan government is conducting its own investigation, but has twice postponed briefing the commission.

Wellesley College historian Susan M. Reverby uncovered the disturbing experiments while reading papers from John C. Cutler, a doctor with the federal government's Public Health Service. Cutler participated in the Tuskegee experiment, in which hundreds of African American men with syphilis in Alabama were left untreated to study the disease between 1932 and 1972. Cutler died in 2003.

In the Guatemala case, about 700 of the subjects were treated, but it remains unclear whether their care was adequate. About 83 of the subjects died, but investigators have been unable to determine whether any deaths were caused by the studies.

The Annals of Extreme Surgery -

The heat is on again in the world of cancer treatment, both literally and figuratively.

More and more doctors are now using an extremely aggressive procedure to treat certain colorectal and ovarian cancers called Hipec, in which patients first undergo surgery to remove any visible cancer, then have heated chemotherapy pumped into the abdominal cavity for 90 minutes to kill any remaining cells.

Although it has given some patients hope, there is almost no evidence that the treatment is more effective than traditional chemotherapy — besides one small trial in the Netherlands over a decade ago that did show a benefit, but in which 8 percent of the participants died from the procedure itself.

We shouldn't be surprised by the sudden emergence of this therapy. Heated chemotherapy is the latest in a long list of very toxic treatments used by well-meaning cancer doctors who have confused doing more for patients with doing what is best for them.

History tells us that this "more is better" dictum is rarely true.

Aggressive cancer therapy started in the late 19th century with the radical mastectomy, which involved the removal of the breast, along with the chest muscle below it and nearby lymph nodes, and was championed by William S. Halsted, a surgeon at Johns Hopkins.

In the following decades, Dr. Halsted's methods became more and more popular, particularly after World War II, when surgeons who had performed heroic operations on European battlefields returned to America optimistic about what could be achieved in cancer surgery. In an attempt to eradicate all potentially dangerous cells without the assistance of chemotherapy — which was not yet in wide use — surgeons began removing even parts of the sternum and rib cage of certain breast cancer patients in something called a super-radical mastectomy.

If the cancer had spread into the arms, surgeons at times removed entire shoulders (forequarter amputations). If the cancer was in the legs, part of the pelvis was removed with the leg (hindquarter amputations). The most aggressive operation of all was probably the pelvic exenteration, devised by the New York gynecologist Alexander Brunschwig. For cancers that had spread throughout a woman's pelvis, he removed not only her gynecological organs but also her bladder and rectum.

The goal of these operations was straightforward: to remove as many cancer cells as possible, which would theoretically prolong the survival of patients and possibly even cure them. The problem was that none of these procedures had been formally tested in controlled clinical trials. By the 1960s, it had become clear that they were of little or no benefit, while causing dying cancer patients disfigurement and suffering.

Why such enthusiasm for aggressive surgery? The explanation can be gleaned from the language surgeons used to justify their operations. Military metaphors were ubiquitous. In 1946, Cushman Haagensen warned his colleagues against "surgical cowardice" in the face of the "formidable enemy" that was cancer. Jerome A. Urban, the father of the super-radical mastectomy, was fond of saying "lesser surgery is done by lesser surgeons."

It was not only surgeons who made these assumptions. In the late 1980s, oncologists began treating metastatic breast cancer patients with a highly toxic and expensive regimen of so-called very-high-dose chemotherapy, followed by bone marrow transplants. Once again, early data proved misleading. Women who received this treatment turned out to live no longer than those getting standard chemotherapy, and many died from either the high doses or the side effects of the transplants.

Cancer patients and their families, desperate for anything that might work after exhausting all other treatment options, are also part of the problem. But the history of cancer treatment provides a crucial cautionary tale for both those seeking out and those providing heated chemotherapy today. Doing more for cancer patients has often served a cultural as opposed to a scientific purpose, reflecting more the desire to defeat the cancer enemy than to take care of sick patients. Hospitals should offer heated chemotherapy — and insurance companies should pay for it — only after controlled trials have proved its effectiveness.

In the meantime, we should remember not to conflate our efforts with our achievements.

Barron H. Lerner, a professor of medicine and public health at Columbia, is the author of "The Breast Cancer Wars: Hope, Fear and the Pursuit of a Cure in Twentieth-Century America" and the forthcoming "One for the Road: Drunk Driving Since 1900."