Patient Safety Blog

The political brouhaha that followed the new guidelines on mammograms has now died down, maybe enough so that patients can start to absorb the quiet truth about breast cancer and the role of mammogram screening.

The National Breast Cancer Coalition has worked since 1991 to get Congress to fund research and appropriate treatment for this disease. The Coalition believes in sticking to the facts and analyzing closely the research studies that have been published about what mammograms can and cannot do for women who aren't aware of a lump in their breasts.

Here is an excerpt from their discussion of the US Preventive Services Task Force recommendations:

Has breast cancer screening had a significant impact on mortality from breast cancer?

No, over 40,000 women continue to die of breast cancer each year, despite the emphasis on breast cancer screening in our country. To change this, we must address the facts about breast cancer and not simply accept what we want to believe. The fact is that all breast cancers are not equal and that we don’t currently have tools for “early detection” that are good enough for the life-threatening breast cancers.

But doesn’t early detection save lives?

Not necessarily. Some breast cancers are slow-growing and have a good prognosis, whenever they are found, whether small or large. Other breast cancers are aggressive and fast growing, and we don’t have the tools to catch them early enough or treatments that will work.

Why doesn’t mammography work as well for women in their 40s?

Younger women have more dense breast tissue, making mammography less accurate. Also, mammography is better at detecting slower growing tumors more common in older women, than the fast-growing, aggressive tumors more often found in younger women. And the balance of benefit vs. harm changes as women get older since the likelihood of breast cancer increases with age. The disease is relatively rare in younger women.

But shouldn’t a woman in her 40s have a mammogram if she feels a lump?

Certainly. The Task Force recommendations are meant to be guidelines for broad public health policy for healthy women with no symptoms, and an average risk for breast cancer. These guidelines are not meant for any woman with an increased risk or for any woman who feels a lump or change in her breast. Women who have any concerns need to visit their doctors and may need diagnostic mammograms. Mammograms taken to assess a problem are not the kind of mammograms we are talking about with these guidelines.

What’s the harm in trying to detect breast cancer early, even if our methods don’t work that well?

The harms from screening too early or too often include increased false positives, leading to increased imaging and radiation exposure, biopsies and scarring that can affect the accuracy of future mammograms, and anxiety. There is also the harm of overdiagnosis of breast cancer. This would involve treatment of cancers that would never be life threatening, and treatment of cancers that may regress, or go away on their own. The treatments for breast cancer are not aspirin, they are toxic and can be life threatening; the scenario of overdiagnosis should not be taken lightly.

The cancer coalition supports the Task Force's recommendation that women who are not in a high risk category (from a family history or presence of the BRCA gene) start thinking about mammograms around age 50, not age 40.

Here is another useful summary from the National Breast Cancer Coalition: 31 Myths and Truths about breast cancer. You can read it here.

We have discussed the statistics behind breast cancer screening in several entries on this blog. Read them here and here and here. My belief is that women need to understand the numbers and then make a personal choice. Politicians don't need to enshrine mammograms as some sort of constitutional right, as happened in the US Senate not long ago. We need more compelling evidence before this screening device goes onto the "do not touch" pedestal.

Posted by Patrick A. Malone | Permalink | Email This Post

Posted In: Cancer , Communication , Statistics , Testing

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Several thought-provoking letters appear in the New York Times responding to the recent piece about the cancer treatment industry's advertisements. One letter was from Dr. James Rickert, of Bloomington, Ind., president of the Society for Patient Centered Orthopedics:

To the Editor:

As a cancer survivor who has faced recurrent bouts of disease, I agree that the intense marketing campaigns used by cancer centers only heighten the stress and anxiety of the difficult treatment decisions that all cancer patients face. It becomes nearly impossible, at a time when one feels that any poor decision could be fatal, to wade through all the non-science-based claims for success.

As a physician who treats many patients with terminal metastatic disease, I have seen that this marketing often leads to heart-wrenching guilt and second-guessing by patient and family alike when treatments fail. Rather than being allowed to accept that their disease was incurable despite the best medical care, patients often feel that they are somehow to blame for choosing the wrong institution in which to receive treatment.

This is a distressing example by our nation’s finest medical centers of the shameful practice of placing financial concerns before the needs of the patients that they claim to serve.

If our academic medical centers cannot offer better patient-centered, evidence-based care than this, where in the world shall the medical community look for leadership?

Dr. Rickert makes an even better case than I could about the dangers of relying on advertising to make important decisions.

Posted by Patrick A. Malone | Permalink | Email This Post

Posted In: Advertising , Cancer , Communication , Conflicts of Interest

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The ads are striking: Handsome, smiling people, very much alive, victors over cancer -- thanks to their choice of a prestigious cancer center for their treatment. But are they true?

The cancer centers -- with brand names like Sloan-Kettering and Massachusetts General -- cannot prove that the patients are alive because of something unique about their institutions. But they don't have to prove anything, under the law. If a drug manufacturer wanted to make a similar claim, it would have to line up statistical evidence, and the ads would have to have a lot of disclaimers. The ads from the cancer centers have no such disclaimers, and little to no backup from statistics.

Natasha Singer has a thoughtful article in the New York Times exploring these ads and what patients who are looking for cancer treatment should do.

The marketing executives who craft these ads say they're not even aimed at current patients -- but are more "reputation advertising," as one told the Times.

The article has a good sidebar that gives tips for how patients should shop for cancer treatment.

A regular community hospital can be fine for common cancers like colon, but for anything unusual, it's best to look for a center that sees a lot of that condition.

The National Cancer Institute designates Comprehensive Cancer Centers for their scientific excellence and comprehensive approach. Here is a list from the NCI. Ironically, these are some of the same centers with the heavy advertising budgets.

In my book, "The Life You Save: Nine Steps for Finding the Best Medical Care -- and Avoiding the Worst," I discuss the importance of a multi-disciplinary approach where doctors from different specialties collaborate together on figuring the best line of attack to a particular patient's cancer. Most advanced centers have "tumor boards," where these collaborative discussions occur, usually at no extra charge to the patient.

Posted by Patrick A. Malone | Permalink | Email This Post

Posted In: Cancer , Communication , Conflicts of Interest , Disclosure

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A drug that can cut a woman's risk of breast cancer in half when taken regularly is proving to be a tough sell when women have a chance to fully understand the pros and cons of the medication.

The drug is tamoxifen. For women at high risk of breast cancer (who have a gene associated with it or a close relative with breast cancer), tamoxifen can reduce the odds of developing breast cancer by 50 percent. Yet recent studies show that when the statistics are laid out for women to make an informed choice, only one in 100 actually fill the prescription.

Are the women who decline to take tamoxifen being illogical? Or just making their own personal choices about what is important to them?

Tamoxifen interferes with the body's use of estrogen. That can lower the risk of estrogen-dependent breast cancers but can increase the risk of other estrogen-related side effects like cancer of the endometrium (the lining of the uterus), blood clots and sexual dysfunction.

Here is how the numbers were spelled out to women in a recent study at the University of Michigan, as reported by Tara Parker Pope in the New York Times:

The risks of breast cancer vary with age, family history, and age of first childbirth. So a 52-year-old woman who had her first baby after age 30 and whose mother had breast cancer, has about a 1.9% risk of developing breast cancer over the next five years. If 1,000 women just like this 52-year-old took tamoxifen over those five years, the research says that here is what would happen:

* Of the nineteen women (same as 1.9%) who otherwise would have developed breast cancer, nine will not develop breast cancer. (Thus the statistic about lowering the odds by half.)

* Thirteen women would avoid broken bones from osteoporosis, another benefit of tamoxifen.

* Twenty-one women would develop endometrial cancer (typically more treatable and less deadly than breast cancer if caught early).

* Twenty-one women would develop blood clots.

* Thirty-one women would develop cataracts.

* Twelve women would experience sexual problems.

* One hundred twenty extra women would get hot flashes and other menopausal symptoms (in addition to those who would get such symptoms anyway).

Behavioral economists might say this is an example of "omission bias," where we are more worried about a small risk from doing something new (taking a pill) than we worry about a larger risk from doing nothing. Put another way, we often see the status quo of doing nothing as safer when it really isn't.

At least that's how the researchers quoted in the NYT article explained the unpopularity of tamoxifen. But for readers who posted comments on the newspaper's blog, they tended to see the women voting against tamoxifen as being quite sensible. It just doesn't sound worth the downside.

Part of the problem is the apples-to-oranges comparisons involved when a fatal condition is compared to a non-fatal one. As one commenter posted:

What might make women make better choices is if they had data on whether the pill reduced the risk of DEATH from all causes. If only some of the breast cancers avoided would have resulted in death but all of the endometrial cancers aquired resulted in death, women might make the choice to avoid tamoxifen. If the risks were reversed, they might choose to take tamoxifen. We have to move beyond a discussion of risk of cancer and towards a discussion of risk of cancer DEATH. http://www.medpie.com — Barbara Lock, MD

If we had the same careful discussion about mammograms, women likely would opt for far fewer of these tests, which save lives on a similar scale as tamoxifen, with plenty of downside.

My conclusions from this debate:

* Patients need to know there are no magic bullet drugs that are all gain, no pain. Tamoxifen interferes with estrogen, which is good for some diseases, not so good for others. This is typical. Each drug must be carefully weighed for its pros and cons.

* We're all better off with a full exploration of the odds and then make our own decisions. There is no right or wrong.

* The best way to understand risk is the way it's spelled out here: with numbers of actual people in a given standard-sized group. It's too confusing when we talk about percent this and percent that.

I tell readers how to do this technique of "counting the people" in my book: The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst.

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Posted In: Cancer , Communication , Statistics

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Almost nothing is worse in medicine than a cold-hearted delivery of bad news that sucks all the hope out of a patient's lungs. And almost nothing is better than an honest dialogue between doctor and patient that explores the hopes and fears of a patient faced with a very serious condition, in a way that allows for hope in some form to continue to exist. Because we know that when all hope ends, life does too.

Dr. Chris Feudtner, a bioethicist at Children's Hospital of Pennsylvania, has a sensitive essay on this topic in the New England Journal of Medicine. He titled it "The Breadth of Hopes."

His idea is that all of us have a range of hopes that are necessary to carry on with daily life; some are fanciful and others are very concrete and specific.

Doctors need to nurture hope while helping patients redefine what it is they hope for. Even hoping for a miracle in the face of an incurable disease is not necessarily something that doctors should scoff at. As he writes:

Judging such a hope as either realistic or false misses the point; rather, we should judge ourselves as clinicians by the degree to which we can help nurture our patients' collection of diverse hopes.

This is not to say doctors should encourage unrealistic Pollyanna thinking by patients.

Dr. Feudtner hopes to develop better tools to help patients and families in the emotional end of coping with disease. He concludes: "as clinicians, we need to more carefully work through what separates the appropriate management of hopes from their inappropriate manipulation, because whether we want the responsibility or not, we constantly interact with our patients' hopes."

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Posted In: Communication , Doctor-Patient Relationship , End of Life

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Did you know that rupture of an Achilles tendon can be fatal? This common injury has one potentially fatal but preventable complication: a blood clot can develop in the calf while the leg is immobilized for healing of the injury, and if the clot gets big enough, it can travel to the heart and cause what is called a pulmonary embolism.

The Achilles tendon is the ligament that connects the calf muscles to the heel bone. When it ruptures, the patient must have the calf immobilized for several weeks. That can cause blood clots in as many as three in ten patients, because calf muscles when they flex act as a pump to help bring blood back toward the heart. Immobilized calf muscles allow the blood to pool in the deep veins of the leg and potentially clot.

Samuel Burton, a retired Coast Guard captain, died of such a clot, and a distinguished federal judge recently decided the death should not have happened. Judge Royce Lamberth, chief judge of the U.S. District Court for the District of Columbia, ruled that orthopedic surgeons at Walter Reed Army Medical Center had committed malpractice by failing to warn Capt. Burton when they were treating his Achilles tendon rupture about the risks of this blood clot and what he should do if he developed any of the symptoms of a clot.

When Capt. Burton died, his widow was shocked to learn from the medical examiner who performed the autopsy that two episodes of chest pain and shortness of breath, which Captain Burton had experienced in the weeks before his death, were signs of a potential pulmonary embolism. None of the doctors at Walter Reed had ever warned Captain Burton or his wife of this possible deadly complication and what to watch out for. She sued the government for medical malpractice under the Federal Tort Claims Act. After a trial, Judge Lamberth issued a verdict in favor of the widow, and he ordered the government to pay her $2,080,000. Judge Lamberth concluded that if the doctors had properly educated the patient and his wife, they were responsible people who would have appreciated the need to get to a hospital for treatment before it was too late. Both Captain Burton and his wife had assumed that his two episodes of pain and windedness were from deconditioning because he had resumed some physical activities after being off his feet for weeks.

The judge rejected Walter Reed's defense that since statistics showed that only about one in one hundred Achilles rupture patients died of pulmonary embolism, they didn't need to be warned about the risk.

Captain Burton's family was represented in their medical malpractice case by Patrick Malone & Associates.

Read the judge's decision here.

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Posted In: Communication , Doctor-Patient Relationship , Hospitals , Self-care , Standard of Care--Hospitals

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Patients with newly diagnosed cancer often feel that they have been uprooted from home and tossed into a foreign land -- with strange landmarks, foreign language and more than enough fear and anxiety for a lifetime. It's very useful to have guidance from a cancer survivor who has been there. A new article by a cancer survivor and professional advisor does just that.

The article by Kathryn Gurland, "A Survivor's Compass," has eleven helpful tips for negotiating this new foreign territory. She starts with the helpful reminder that a cancer diagnosis is not a medical emergency, and you don't need to rush into treatment before you thoroughly educate yourself on all your options.

Other advice includes:

* Make sure you are memorable to the care providers, and not just "another cancer patient." Small things like wearing distinctive clothing, showing your sense of humor, talking about current events -- all can help make you stand out from the crowd, and thus form a better bond with the providers.

* Never be shy about asking for the help you need, and also making clear what you DON'T need.

Read more here.

Ms. Gurland's advice echoes that in Patrick Malone's book, "The Life You Save," which helps patients understand the vital need to get second and third opinions before they undertake cancer treatment. The heart of good care, as Mr. Malone teaches, is clear communication and complete understanding by the patient and the family of everything that is going on.

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Posted In: Cancer , Communication

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A few brave medical journal editors are cracking down on the common practice of drug companies ghost-writing articles for authors who are willing to lend their names to drug industry propaganda. But at other journals, editors seem to have a "don't ask, don't tell" policy. For patients, it is vital that the truth come out.

The problem with ghost-written medical articles is that they purport to be something that -- once the disclosure of who wrote them is made -- they clearly are not: independent, objective evaluations of which medications work best for a particular disease. Instead, the ghosted articles turn out to be elaborate infomercials, disguised by the author's prestigious name and studded with multiple footnotes and the other signs of scholarly elbow grease. Yet because they are published under false pretenses, these articles can be very effective at selling their sponsors' products.

What first broke open this scandal was lawsuits against Wyeth for breast cancer and other injuries caused by its hormone drugs Prempro and Premarin. Attorneys for the patients found multiple examples in the manufacturer's records of prominent medical researchers putting their names on articles written by someone hired by the drug company.

Some of the medical school professors who were caught tried to brazen their way out of it by saying that of course, they wouldn't put their name on something they didn't agree with, and they just happened to agree with every single word that was written for them. For example:

Dr. Gloria Bachmann of the Robert Wood Johnson School of Medicine said in a published report: “This is my work, this is what I believe, this is reflective of my view.”

With shameless attitudes like that rife in the medical academic world, it's important for the editors who control what goes into the journals to step up and enforce some accountability. The first steps down that road have been cautious at best. As the New York Times reported:

Dr. Cynthia E. Dunbar, the editor in chief of Blood, said that, in the future, the journal would consider a ban of several years for authors caught lying about ghostwriting, in addition to retracting their ghosted articles.

But, said Dr. Dunbar, who is a hematologist at the National Institutes of Health in Bethesda, “I hope we don’t have to do that.”

The Times reported on another journal that took a stand:

In an editorial last week calling for a zero tolerance policy, the editors of the medical journal PLoS Medicine, from the Public Library of Science, called for journals to identify and retract ghostwritten articles and banish their authors.

“Any papers where this breach is substantiated should be immediately retracted,” the editors wrote. “Authors found to have not declared such interest should be banned from any subsequent publication in the journal and their misconduct reported to their institutions.”

Click here to read the full editorial.

Other journal editors told the Times that because they banned ghostwriting, they didn't really have to have a specific policy enforcing the ban. Huh???

For an amusingly arch, tell-it-like-it-is take about medical ghostwriting from someone outside the medical industry, I recommend English professor Margaret Soltan's blog, University Diaries.

The ghostwriting scandal, and the cautious, tepid response from many in the medical journal world, are the latest proof of why I advocate that patients be skeptical about prescription drugs, especially those with expensive marketing campaigns behind them. Read more in Chapter 7 of my book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst." The chapter is titled: "Drugs: A Dose of Reality About the Prescription Drug Industry and How You Can Safely Use Medicines."

Posted by Patrick A. Malone | Permalink | Email This Post

Posted In: Communication , Conflicts of Interest , Disclosure , Medications

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That question was asked in a New York Times column by Dr. Pauline Chen, and her column prompted a number of thoughtful comments by both doctors and patients. Clear communication is a critical element to good diagnosis, and that puts burdens on both doctors and patients.

Some of the comments on the column which I found most helpful:

I think the most important thing to avoid missed diagnosis is to improve the communication between doctors and their patients. It is especially important to encourage patients to be pro-active and be involved in their care. For example, I give my patients copies of all their test results when they come to visit and encourage them to read them and ask questions if they do not understand specific terms (and they frequently do). I tell all my patients not to assume anything; “If you call to find about test results and no one return your call, do not assume that they are ok. Please call again and make sure that you speak to someone.”

As a cancer specialist in a referring center, many of my patients ask whether they had their cancer for a long time, and whether an early diagnosis was missed. I perfectly understand the concerns. However, it is my experience that patients who are involved in their own health care and are well informed, usually have less chance of having missed diagnosis than those who blindly trust the system and passively participate. Blaming never resolves any problems. It is more tragic if one (patients or doctors) did not learn from their mistakes.
— Anas Younes, M.D.

And this one from a doctor in training:

I appreciate the 2nd half of the article, particularly highlighting the social characteristics of the patients most likely to not follow up with something they should have. However, in contrast to the comments above, I believe that it is always the physician’s responsibility to make sure that he/she and the patient are on the same page. I say this as a physician-in-training, and as a patient as well.

Patients are sick, scared, and, for the most part, worked pretty hard to get through the clinic door. it is the physician’s responsibility to understand the patient’s perspective, and act accordingly. We need to understand their disease as they understand it, even if we don’t agree with it.

All too often, we ignore or fail to appreciate the power differential latent within the patient-physician relationship. If a physician authoritatively tells a patient to schedule a mammogram or colonoscopy, it takes a strong patient to go against that edict. However, when the patient doesn’t follow up in the way we want him/her, it is our fault for failing to understand their position. Within each encounter, we need to strive for a truly shared decision-making model. If we solicit the patient’s thoughts, feelings and concerns about the plan we have for them, they will be on board with the plan, because it’s their plan too.

Granted, this is a tall order, However, it is our responsiblity as physicians to ensure that the patients we see are on board with us. Now certainly there are some patients and some reasons why a person may not follow-up when they say they will, but, from my experiences, a patient chooses not to follow-up when he/she hasn’t been part of the decision-making process.
— Alex

Patients who want to communicate effectively with their physicians and be joint participants in the care plan should take a look at my system for going to the doctor's office, in Chapter 3 of my book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst." The system is "Make a List, Leave a List, Take a List," and it involves putting in writing all our worrisome symptoms before the visit, leaving that list with the doctor, and making sure to take home a list of the action plan. This helps focus both you and the doctor on what is important and helps cut way back on the potential for miscommunication which is the source of so much misdiagnosis and missed opportunities for cure.

Posted by Patrick A. Malone | Permalink | Email This Post

Posted In: Communication , Doctor-Patient Relationship , Misdiagnosis

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Another reason for careful patients to be skeptical about overly hyped prescription drugs came this week with news about the extent to which articles in important medical journals are "ghost-written" by drug manufacturers.

According to an article in the New York Times by Natasha Singer, newly released papers from lawsuits involving Wyeth's hormone replacement drugs Premarin and Prempro show that over several years, Wyeth repeatedly hired ghost writers who placed 26 articles in 18 prestigious medical journals, all promoting the drugs in the guise of objective analysis by medical experts:

The court documents provide a detailed paper trail showing how Wyeth contracted with a medical communications company to outline articles, draft them and then solicit top physicians to sign their names, even though many of the doctors contributed little or no writing. The documents suggest the practice went well beyond the case of Wyeth and hormone therapy, involving numerous drugs from other pharmaceutical companies.

The Times article made an interesting comparison to professional baseball's steroids scandal.

“It’s almost like steroids and baseball,” said Dr. Joseph S. Ross, an assistant professor of geriatrics at Mount Sinai School of Medicine in New York, who has conducted research on ghostwriting. “You don’t know who was using and who wasn’t; you don’t know which articles are tainted and which aren’t.”

Because physicians rely on medical literature, the concern about ghostwriting is that doctors might change their prescribing habits after reading certain articles, unaware they were commissioned by a drug company.

“The filter is missing when the reader does not know that the germ of an article came from the manufacturer,” said James Szaller, a lawyer in Cleveland who has spent four years going through the ghostwriting documents on behalf of hormone therapy plaintiffs.

The same concern about ghostwriting applies to patients who read literature on the Internet. People can be easily misled if they think an article is truly objective.

My advice, as I write in my book, "The Life You Save," is to rely on truly independent groups like the Medical Letter and Public Citizen's Health Research Group for objective information about drugs.

Some top medical journals like the Journal of the AMA now require authors to fill out detailed forms describing exactly how much input they had into the writing of an article. But many do not have such requirements. Consumer, beware.

Posted by Patrick A. Malone | Permalink | Email This Post

Posted In: Communication , Conflicts of Interest , Medical Device Safety , Medications , Product Safety

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Everyone who has had any medical or surgical procedure has signed a consent form -- usually lots of intimidating words, hard to read, and seldom explained well.

There is a better way, and it involves recognizing that true "consent" is not about signing a form, but it's about old-fashioned conversation -- a real dialogue between the doctor and the patient that gives the patient a chance to really understand what is about to happen to their body, and gives both doctor and patient a chance to start developing a bond.

Dr. Pauline Chen wrote a helpful column on the subject in the New York Times.

Quoting another doctor who has studied the consent process, Dr. Chen writes that "'Informed consent is about forging a partnership with the patient.'” And she says:

That partnership is essential and requires what Dr. Martin F. McKneally, a professor emeritus of surgery and bioethics at the University of Toronto in Canada describes as a “leap to trust.” Patients must feel they have a certain degree of trust in their doctors before they can give consent, and that trust is built, in part, from the kind of difficult conversations that can arise.

My comment posted on the Times' "Well" blog:

This article is another reminder of what I tell people as a patient advocate, and the approach I put into my book “The Life You Save”: “Informed trust is good; blind trust is bad. Ask questions until you’re really comfortable knowing what’s going to happen. It’s your body.” With conscientious doctors like Dr. Chen, this can really happen. (And contrary to what “Jack” says, the fact that it may be routine for the doctor doesn’t make it routine for the patient and doesn’t make it acceptable to rush through the consent dialogue.) The payoff for physicians is a much more accepting attitude by patients of the bad things that can occasionally happen despite good care. The payoff for patients is better care.

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Posted In: Communication , Doctor-Patient Relationship

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Web sites are proliferating that offer candid -- sometimes brutally so -- reviews by patients of doctors. The sites include Angie's List, RateMDs, Yelp, DrScore and Vitals.com.

Now some doctors burned by reviews are striking back. A growing number of them are asking new patients to sign up-front agreements promising not to post anything about them on-line, or in any other media, "without prior written consent," according to an article by Sandra Boodman in the Washington Post.

The ethics and legality of such "gag orders" are questionable. But to my lights, they serve a useful purpose: Any doctor who would be so sensitive to criticism that he or she would ask me to sign such an agreement is not a doctor whom I would want to trust with my life. Period.

As for the web sites themselves, they have varying amounts of useful information. RateMDs, for example, one of the biggest, covers some 200,000 physicians across the country, but most of the doctors have only one or two reviews. It's not fair to make a judgment about a doctor based on such a limited survey. I would want to see at least ten or more reviews of a doctor, and see how consistent the ratings were among the responders, before thinking this was useful information.

The popularity of these web sites is a sign of how hungry patients are for reliable information in making the important choice of a doctor. And the fact is that there is very little reliable objective information on which patients can make informed decisions. I devoted a chapter of my book, "The Life You Save," to finding a top primary care doctor, and another to finding a top surgeon. I believe there is no easy shortcut for the hard work of:

* Checking credentials to make sure the doctor is board-certified by one of the officially recognized boards (Michael Jackson's live-in doctor, for example, was not certified in anything).

* Experiencing the doctor's care, at least once, to gauge his or her listening skills and empathy. These are important not just for making patients feel good, but for making accurate diagnoses and giving patients confidence in the care plan the doctor develops.

* Making sure the doctor has adequate backup for when the doctor is out of town.

* Learning that the doctor is on staff at a good nearby hospital.

A detailed discussion of how to find top doctors and surgeons can be found in Chapter 5, Chapter 6 and Chapter 10 of "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst."

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Posted In: Communication , Disclosure , Doctor-Patient Relationship , General

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Imagine if every 50-year-old woman thinking about whether to have a mammogram received the following "balance sheet" showing the "credits" and "debits" as understood by the latest research:

For every 1,000 women who have a yearly mammogram over the next ten years: Credits

1 woman will avoid dying from breast cancer

Debits
2-10 women will be overdiagnosed and treated needlessly

10-15 women will be told they have breast cancer earlier than they would otherwise have been told, but this will not affect their prognosis

100-500 women will have at least one "false alarm" (about half of these women will undergo a biopsy)

These numbers appear in an editorial in the British Medical Journal in July 2009, written by Dartmouth researcher H. Gilbert Welch, M.D., in response to news that the British National Health Service had scrapped a proposed pamphlet that would have described the benefits of mammograms, but failed to talk about their downside.

The key comparison in the above balance sheet is the ratio of one woman's life saved for every two to ten lives harmed by overdiagnosis. The one-to-two ratio comes from a study three years ago by Zackrisson and colleagues. The one-to-ten ratio is from a more recent study by Gotzsche. The tipping point for women in deciding whether to undergo annual mammogram screening is probably somewhere on this sliding scale. The test might not feel worthwhile if ten women are hurt for every one helped, but might seem worth it if only two were hurt for every one helped.

As the author writes:

Mammography is one of medicine’s "close calls"—a delicate balance between benefits and harms—where different people in the same situation might reasonably make different choices. Mammography undoubtedly helps some women but hurts others. No right answer exists, instead it is a personal choice.
To inform that choice, women need a simple tabular display of benefit and harms—a balance sheet of credits and debits.

Unfortunately, medicine hasn't yet pinned down the precise numbers on the balance sheet. For now, women need to be informed that there are varying estimates, and they need to make their own decisions.

Readers should note that this discussion applies only to cancer screening in low-risk women who have no noticeable lumps; women who can feel a lump in their breast are in a different risk category and need to see a doctor promptly.

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Posted In: Communication , Medical Error , Testing

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Having an ally to help you negotiate the health care maze can be absolutely critical to obtaining the best medical care, especially if you are sick enough that you're not thinking as clearly as usual. A patient advocate does not need any special training in medicine or nursing -- just an inquisitive mind and persistence in asking questions and getting answers.

As this blog has previously reported, patients in some parts of the country now can find professional patient advocates to help them. People who have tried it say these advocates are lifesavers who are worth every penny of their fee.

A group that does this for free with volunteers is called Bedside Advocates in the Boston area, founded by retired physician Jonathan Fine. The group was featured in a recent story by NPR health reporter Richard Knox. The problem is that volunteers working part-time can only help a limited number of patients, and the need is vast.

Nurse Dianne Savastano has set up a professional patient advocacy service, also in the Boston area. The NPR story quotes one of her clients, Barbara Porter, who hired Ms. Savastano to help manage the complex care needs of her elderly father, for which she pays Ms. Savastano $15,000 a year. Says Ms. Porter: "I tell him, 'Dad, you got resurrected.' He literally did get resurrected. He would either be dead or in a nursing home right now if it wasn't for Dianne."

Patrick Malone's new book, "The Life You Save," gives a list of pointers for how family members can become effective advocates for their elderly relatives who cannot manage their own care. If you live in an area with professional patient advocates, that should be an option you should consider. None of us can go it alone in this complex health care system.

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Posted In: Accessibility of Healthcare , Communication , Disclosure , Doctor-Patient Relationship

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There's a new/old take on the importance of primary care doctors to obtaining the best quality medical care. It's called the medical home, and it doesn't mean house calls, but it does mean that the patient has a medical "home" -- a team of providers, led by a primary care doctor, who coordinate the patient's care and know everything that is going on with specialists, testing and followup.

This is new because it's being rejuvenated as a way to cut costs and get higher quality care; it's old because the term was coined by the American Academy of Pediatrics in 1967. Jane Brody reports on this in her personal health column in the New York Times.

The medical home concept is supported by all the medical societies who represent primary care doctors. Unfortunately, over the last few decades, insurance reimbursements have been slanted toward performance of tests and not the painstaking work of listening to the patient, thinking through the patient's problem, and recommending a course of care.

Getting a top primary care doctor is one of the "Necessary Nine" steps for quality care outlined in my book: "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst."

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Evidence continues to pile up for why patients need to read their own medical records. A new study finds it is distressingly common for primary care practices, especially big ones, to fail to inform patients about abnormal test results.

The study was published in the Archives of Internal Medicine and was reported by Nicholas Bakalar in the New York Times. The study was also featured in Tara Parker-Pope's "Well" blog at the Times, which features a number of horror story comments by readers.

Overall, the study found seven times out of 100, abnormal test results were not conveyed to patients. In two large primary care practices, one in four abnormal test results were never mentioned to the patient.

Bottom line: Patients who don't hear back the results of their testing can never assume that no news is good news. People need to ask for a copy of their test results from either the doctor's office or the lab where the test was done.

Getting and reading your own medical records is Step One in the nine-step system I recommend for getting the best medical care, in my book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst."

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Posted In: Communication , Doctor-Patient Relationship , Medical Error , Medical Records , Testing

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Medicine continues to take small but encouraging steps to move out of the 19th century in communications with patients. The latest: an experiment at Boston's Beth Israel Deaconess Hospital to let patients read on a secure website the notes that doctors write about them at the end of each visit.

As reported in the Boston Globe by Liz Kowalczyk, the project will last a year and will include detailed questionnaires to see how doctors and patients react to these "open notes."

Sometimes the notes a doctor writes after seeing a patient are more blunt than the message the patient might hear in person, for example, a discussion in the office about the patient's obesity or use of narcotic pain relievers.

Patrick Malone's new book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst," advises patients to always read their own medical records -- even if the facts they contain may be a little "raw." The upside to reading your own record is to improve your own understanding of what the doctor's advice was, to help correct errors or omissions in what the doctor wrote, and to otherwise make you the patient a more vital participant in your own health care.

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A new report from Consumers Union says too many patients are still dying every year from needless errors. The report makes a number of proposals for how reforms could be instituted to improve patient safety. A starting point will be to change the health reform debate in Washington from one of just access and money to one focusing on quality and safety.

Nearly 10 years ago, the Institute of Medicine estimated that nearly 100,000 people died each year from preventable medical error. Has there been any substantial improvement in the last decade? The Consumers Union report says the frustrating answer is "We don't know" -- because systems to methodically measure and report harm are still not widely in place.

What should consumers push for?

* A national system with mandatory reporting of all infections acquired in health care facilities and other harms from preventable errors.

* More widespread adoption by hospitals of computerized systems for ordering and dispensing drugs to cut medication errors.

Those are the key steps called for by the Consumers Union report. Here's one more that I advocate in my new book, The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst -- a "single payer" system. How would having a government-paid health care system help with safety? For starters, it would allow much easier monitoring of quality and errors. Instead of cobbling together data from dozens of insurance companies about how patients did at a particular hospital, all the data would be centralized and could be easily analyzed and compared. That way, problems with care could be more easily identified before tragedies occur.

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Posted In: Communication , Disclosure , Infections , Medical Error

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It sounds like every patient's medical fantasy: Easy access to your doctor 24/7, same-day appointments, thorough and unrushed examinations, little to no time in the waiting room. The only downside is expense: To get this kind of personalized care from a primary doctor, you have to pay an annual fee, and forget about insurance covering it. And you will still need insurance to cover hospital stays and specialists.

Is this ultra-personalized health care, which is called "concierge medical practice," worth it? Many patients think so. Even those squeezed by the recession are often finding room in their budgets for the annual fee for a concierge doctor, even as they cut down on restaurant dinners and other non-essentials.

According to a report by Kevin Sack in the New York Times, leaders in the field of concierge care say they see no impact of the recession in the steady growth of their practices. Dropout rates from the practices are holding steady.

It's estimated there are about 5,000 concierge doctors in the United States, a small fraction of the 240,000 internal medicine doctors in the country. One of the largest groups is called MDVIP, which started in Florida and now has 300-plus physicians in its network. Each MDVIP doctor is limited to 600 patients, who have to pay an annual fee of $1,500 to $1,800. The limit on the number of patients lets the doctors see far fewer patients in a typical day.

The advantage for patients is having a medical expert on hand who knows your body intimately and can sometimes detect subtle danger signs before a full-blown crisis develops.

In his new book, The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst, finding a top primary care doctor is one of Patrick Malone's key "steps" to finding the best medical care. If it takes extra money to get that relationship, and you can afford it, signing up with a concierge medical practice can be money well spent.

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Posted In: Accessibility of Healthcare , Communication , Doctor-Patient Relationship , Primary Care

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Everybody knows that close friendships can be wonderful, and medical researchers are now coming up with tangible evidence that friendship can pay off in longer and healthier lives as well.

"Friendship has a bigger impact on our psychological well-being than family relationships," says sociologist Rebecca Adams of the University of North Carolina, Greensboro. She was quoted in an article by Tara Parker-Pope in the New York Times.

Ms. Parker-Pope's article was inspired by a book, "The Girls from Ames: A Story of Women and a 40-Year Friendship." Author Jeffrey Zaslow documents how eleven childhood friends from Iowa continued to nurture and sustain each other, including two of them who recently learned they had breast cancer.

Researchers have found that friendship has an even greater effect on health than being married or having family members nearby. No one is quite sure what it is about friendship that sustains people, but perhaps what we all take heart from is the idea that "we're all in this together."

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Posted In: Communication , General , Self-care

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Never underestimate the ingenuity of the pharmaceutical industry in promoting its products to the American public. The latest example: The "Real Age" questionnaire that millions of people have filled out on the Internet, to tell them if their "real age," based on lifestyle and family history, is younger or older than their chronological age.

It turns out that the company that sponsors the Real Age web site sells to pharmaceutical companies the detailed information it receives from patients who fill out the 150 questions in its survey. The actual names and email addresses of patients do not get transmitted to the drug companies, but Real Age sends emails to patients on behalf of the drug companies, and these emails are targeted to what a drug company thinks that patient might be interested in, based on the patient's responses to the Real Age questions.

All this happens, according to a report by Stephanie Clifford in the New York Times, whenever a patient clicks "yes" to the multiple opportunities offered during the Real Age questionnaire to "become a member" of the Real Age community. Once a patient says yes to membership, his information becomes part of a database that is then combed to see what pharmaceutical drugs might appeal to the patient.

"It's free," as the Real Age web site keeps reminding people.

But is it really? Patients who are drawn toward a drug by "direct to consumer" pitches like this are likely to sign on for a prescription they may not really need, and every prescription drug carries side effects that may outweigh the drug's benefits. In the early years of a drug's marketing, when manufacturers are most keen on pushing their products, the risks are not fully known to the medical community. That's because the studies done on drugs to win FDA approval are usually limited to a few thousand carefully selected patients.

The safest approach to using prescription drugs is explored by Patrick Malone in his new book, The Life You Save. See chapter 7.

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Posted In: Communication , General , Medications

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When a doctor knows that his patient would receive better care elsewhere, should he inform the patient and send him to another provider? While this question is yet to be settled among bioethicists and physicians themselves, authors of an article published recently in the journal, Public Library of Science Medicine, think doctors have an ethical obligation to tell patients that better care is available to them, according to the New York Times’ Denise Grady.

Research has shown that facilities that perform high volumes of a certain procedure do it better than those that perform the procedure less frequently. The difference is substantial, especially in surgeries of pancreatic and esophageal cancer, although “the experience of the surgeon and the whole medical team [is] important in any major cancer surgery.”

Only a few courts around the country have decided whether doctors have a legal duty to inform patients that another doctor might have more skill and experience performing a planned surgery. One of them is Maryland's highest court, the Court of Appeals, thanks to a client of Patrick Malone named Billy Boone who suffered brain damage after an ear surgeon punched a hole into Mr. Boone's brain.

Mr. Boone's case shows that surgeons' skills make a difference in much more than cancer surgeries. The Maryland Court of Appeals decided that Boone had a legal right to know that his surgeon did not have extensive experience doing the ear surgery that Mr. Boone underwent.

Mr. Boone had an outpatient surgery in January 2000, to remove a benign growth from the mastoid cavity behind his left ear. Dr. Seth Goldberg, an ear nose throat surgeon, performed this surgery, called a mastoidectomy. Seventeen years before, Mr. Boone underwent the same procedure, in which another surgeon drilled out the same mastoid to remove a cheesy growth of skin debris called a cholesteatoma. Unknown to Boone, the surgeon had become lost at one point during the procedure and drilled a hole in the skull just above the mastoid, near the bottom of the brain's temporal lobe. But nothing happened to his brain, which was protected by the tough fibrous shell below the skull called the dura. Years later, when Dr. Goldberg prepared for the new surgery, he took some CT scan pictures of the bone anatomy and saw the pencil-sized hole in the side of the skull.

Dr. Goldberg's surgery seemed uneventful, but after Boone went home, he developed a short-term memory problem that ruined his ability to do carpentry; worse, he developed a problem controlling his temper that unleashed itself at stressful moments on whoever happened to be nearby. Later, his neurologist explained to the jury that Boone's outbursts could be traced to injury in the limbic system that modulates emotional response.

A CT scan showed that a hole had been poked from the pre-existing skull defect into Boone's brain. A small pocket of air could be seen in the temporal lobe, surrounded by a pool of blood. But it wasn't just air in the brain – it was something slightly denser than air, likely surgical gelfoam which could have made its way there only if Dr. Goldberg had pushed it in to try to stop bleeding after he punched the first hole.

The key moment for Mr. Boone came not in the surgery but a month before, when he sat down with Dr. Goldberg to go over the planned operation. Goldberg never volunteered the key information: that with the hole in the skull from the prior surgery, his surgery would be that much more difficult, could even result in an injury to the brain, and Mr. Boone might benefit from consulting with someone who regularly did "revision mastoidectomies," the technical term for this second go-round. A general ENT doctor who advertised his specialty in facial cosmetic work like nose jobs – he named his professional corporation the "Aesthetic Facial Surgery Center of Rockville" – Goldberg only had done occasional revision mastoid surgeries. His operation on Boone proved he wasn't up to the job. On the witness stand, Goldberg admitted he hadn't discussed with Boone the hole in the skull, the chance of brain damage, or the availability of sub-specialists called neurotologists. For Billy Boone, the jury's vote in his favor, and the Court of Appeals' affirmance of the award, gave him some vindication. For other patients, his win makes it easier to demand the information you need to make a sensible selection among surgeons. Of course, if you asked Billy Boone, he would trade in legal vindication for a healthy brain any day. It's too late for him, but not for the rest of us.

(Click here for more information on the Boone case, and follow this link to Mr. Patrick Malone's closing argument.)

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Posted In: Cancer , Communication , Disclosure , Doctor-Patient Relationship , Medical Error , Surgery

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The convenience of the Internet allows consumers to evaluate and compare their experiences with anything from piercings and dog walking to a visit to their doctor’s office. Although the website ratings may be helpful in an initial survey of local doctors, patients should not look to them as their sole source of information when determining to whom they’ll entrust their health care, says Dr. Pauline W. Chen in a New York Times article.

Dr. Chen noted that on a particular consumer reviews website, doctors are evaluated in five categories (price, quality, responsiveness, punctuality and professionalism) and given a grade according to user input. She found that doctors who are “warm, concerned and focused” receive A’s or B’s, whereas the less friendly may be given failing grades.

While these ratings correctly reflect the fact that patients feel more at ease with compassionate and caring doctors, one would be hard-pressed to find in these report cards an evaluation of the doctors’ medical skills. Such is not the case in consumers’ evaluation of other trades, such as roofing or body piercing, where they are quick to comment on the quality of services or craftsmanship.

Dr. Chen suggests that, instead of simply relying on some generic grades that could very well be a mere personality assessment, patients should find out about their doctor’s “training, board certification, experience, membership in a respected professional society, safety records and hospital affiliations.”

The American College of Surgeons found this year that more than a third of patients did not review the credentials of the surgeons who operated on them, but on average they spend 10 hours researching a job change or 8 hours on a new car.

Patients should not blindly trust their doctors. “[M]edicine and surgery are team sports,” said Dr. Thomas Russell, executive director of the American College of Surgeons. Patients make the ultimate decisions about who will give them health care and, in that capacity, they have an important role in the team. They should be diligent in educating themselves.

Dr. Russell’s book, “I Need an Operation…Now What? A Patient’s Guide to a Safe and Successful Outcome,” encourages patients to equip themselves with knowledge of their illnesses and doctors and be more effectively involved in their own treatment plan.

Patrick Malone has written a book on how consumers can be pro-active in their medical care. The book is: The Life You Save: Nine Steps to Finding the Best Medical Care and Avoiding the Worst. Read about the book here. It can be pre-ordered here on Amazon. Several chapters detail the steps needed to find both top primary care doctors as well as specialists.

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Millions of people with normal cholesterol levels in their blood could be started on cholesterol-lowering statin drugs based on a new research study, but if patients understood the numbers behind the study, they might not move so fast to put statins in their medicine cabinet. Every patient can benefit from a closer understanding of how statistics work in medicine to push people toward treatments that they may or may not really benefit from.

The latest study involves people who were put on cholesterol-lowering statins because they had a high result on a blood test called C-Reactive Protein, even though the same people did not have high cholesterol.

As reported by Tara Parker-Pope in the New York Times' "Well" blog, here are the key numbers:

* The researchers reported an impressive sounding 50 percent reduction in heart attacks in the group treated with statins, as compared to patients in the same study who got a sugar pill (placebo) instead.

* But the real numbers of actual patients helped by the statins were only around nine in every 1,000 people treated -- less than one percent.

How do those numbers fit together? In the placebo group, 18 of every 1,000 patients suffered a heart attack or some other serious heart event during the study. In the group taking the statin drug, nine of every 1,000 patients had a serious heart event. That's how the researchers could report that the risk had been cut in half -- from eighteen to nine -- although the actual numbers of patients were few. Comparing eighteen to nine is called a relative risk ratio. Comparing 18/1,000 to 9/1,000 is called comparing the absolute risk. The absolute risk number is usually more meaningful.

Another important number for patients to understand in figuring out if a new medicine is for them is called the "number needed to treat." How many patients need to be treated with the new drug for one patient to benefit?

According to a New England Journal of Medicine editorial which analyzed the new study, 120 patients would need to be treated with statins over two years for just one of those patients to benefit.

That number might be enough to persuade some patients to take the drug. But it's a lot different than fifty percent. Bottom line: to make intelligent choices about treatments, patients need to understand how many patients like them are really expected to benefit from the treatment.

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A recent medical malpractice lawsuit prosecuted by Patrick Malone & Associates for the victim of a delayed diagnosis of skin cancer highlights the need for annual skin checks by a qualified doctor. Anyone who is fair-skinned, sunburns easily, or has a lot of moles on their skin should see a dermatologist or a good primary care doctor for annual skin checks. These can be part of a routine physical exam. The doctor should measure and do sketches of the moles' location and appearance on your skin, or should take good photographs. A change in a mole is one of the key indicators of potential for malignant melanoma, a skin cancer which is deadly once it gets into the bloodstream but is 100% curable when still confined to the skin. Patients and their families often don't notice subtle changes in a mole -- getting bigger, changing color, etc. -- that health care providers can pick up.

In the legal case of Semsker v. Lockshin, a benign mole on the patient's lower back turned into a deadly melanoma over an eight-year period, during which time the mole's presence and change in size was documented by the dermatologist. The lawsuit alleged the dermatologist should have removed the mole two years before it finally was removed, when it had already invaded the patient's lymph nodes. Mr. Semsker died 14 months after the diagnosis.

In their defense of the malpractice lawsuit, the dermatology practice of Norman Lockshin, M.D., P.A., contended that they would have told the patient to get skin checks even more often than he was (every few years from either his primary doctor or his dermatologist), although this recommendation was not documented in their records.

Regardless, every patient needs to know about the dangers of melanoma and the need for regular skin exams. Exams should focus on the ABCDE's of skin cancer: A for Asymmetry of the mole; B for irregular Borders; C for variegated Color or unusual color in the mole; D for diameter greater than 6 millimeters, and E for Evolution or changes in the mole's size, shape or color.

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Posted In: Cancer , Communication , Doctor-Patient Relationship , Medical Error

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An online service called inSPOT allows patients who test positive for STDs to use a website to notify sexual partners, anonymously if they so choose, of the possibility that the partners were infected. A report done by the San Francisco Department of Public Health finds that since 2004, 30,000 people have used the service to send 50,000 notifications of all sorts of diseases contracted through sexual activity.

This project has enormous potential health benefits because embarrassment and a desire to remain anonymous are factors that can prevent people from notifying past sexual partners of their risk of contracting the disease. Of course, as Dr. Richard Rothenberg of Georgia State University notes in the article, it is difficult to track the effects of the project because of confidentiality issues. Nevertheless, the project is valuable:

However, it may be difficult, if not impossible, to study the impact on health because the service is confidential, Rothenberg said. "I think we, and the authors, must be content with the idea that this appears to be an acceptable method to fulfill the moral imperative of notification, and it has a chance to be a better approach than what we currently do," he said.

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Tara Parker-Pope at the NY Times Well Blog has an article about how patients can cope with the vast flood of information (and misinformation) that is now available to them through the Internet.

Nowadays, people can look up their symptoms, self-diagnose certain conditions, find studies about the efficacy of various treatments, and find out what the medical community's consensus opinion is on a wide range of issues--all things that they once relied on doctors for.

Dr. Marisa Weiss, a breast oncologist quoted in the article, points out that doing independent research before a doctor's appointment has become mandatory because doctors have less and less time for patients. So it's in the patients' best interests to come in some idea of what's going on, so they can communicate what they've learned to their doctors and the appointment will proceed with more efficiency.

However, coping with so much information can be a puzzling experience. The article lists several helpful suggestions, such as considering what mental impact doing the research will have on you, exploring non-Internet sources, using your research as a supplement to your doctor rather than as a complete replacement, and other such useful tips. The whole thing is worth a read.

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Dr. Pauline Chen has an article about doctors, empathy and time crunches.

She notes that many doctors would like to express empathy to patients when delivering terrible news, but due to the load of cases they are dealing with, are afraid of spending too much time comforting one patient when there are others that need attending to.

She argues that expressing empathy takes less time than one might anticipate, especially if you use the right strategies: for instance, she recommends expressing empathy throughout a consultation instead of waiting until the very end, as some doctors tend to do.

The whole column is interesting and worth a read.

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Hospitals have long used color-coded bracelets as shorthand to communicate patients' needs to doctors and nurses. For instance, a purple bracelet might indicate that a terminally ill patient does not wish to be resuscitated in the event of heart failure.

Now there is a movement to standardize bracelets, preventing confusion when a health care worker moves from one hospital where (for instance) yellow bracelets mean "do not resuscitate" to another where they indicate an allergy to peanuts.

Bracelets have other pitfalls--for instance, a patient might not wish to advertise a certain desire or condition to visiting loved ones. And children have a tendency to take them off and trade them with each other.

The important thing, if you or a loved one is staying in a hospital, is to know what the colors of your bracelets mean and be prepared to tell doctors and nurses about it. If a doctor or nurse comes up to you or your loved one and begins doing something you don't understand, do not hesitate to ask about it--not only is it good for you to know these things in general, but they may be acting on a misinterpretation of the colored bracelet.

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Posted In: Communication , Medical Error , Standard of Care--Hospitals

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Tara Parker-Pope has a blog post about how doctors will treat women of childbearing age as "pre-pregnant," focusing on their reproductive capacities to the detriment of their overall health. Obviously reproductive matters are an important part of overall health and can influence many other medical conditions. But so can a lot of other common issues: neurological and psychological problems, drug-related issues, alcohol and tobacco habits, gastrointestinal issues, and so on all have a huge effect on a person's overall health. Yet these issues do not command the same attention from many doctors, who focus on the potential for a pregnancy rather than on the woman as a whole patient. As a consequence, the woman's health suffers.

The comments section of the post is enlightening and makes it clear that this is an issue many women face and are extremely angry about. There are also a few dismissive comments telling women to "get over it," displaying the ignorance and foolishness that enable these attitudes in the first place.

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Posted In: Communication , Doctor-Patient Relationship , Gynecology

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The NY Times Well blog has a podcast of Dr. John Hickner, professor of family medicine at the University of Chicago, discussing why patients should always call their doctors to follow up after having a medical test done.

We have previously discussed the issue of medical test results getting lost in transmission: the patient will expect the doctor to call if there is bad news, and will feel reassured if he or she hears nothing, while the doctor's office will wait for the curious patient to contact them, or will simply forget, and the patient "falls through the cracks." As a result, the patient may not hear about important test results.

The best way for patients to deal with this is to remember to call their doctors after testing and keep in mind that no news is not necessarily good news.

Another thing that patients can do is always ask the testing facility for a copy of the test results. Some laboratories and radiology offices resist this, but every patient has a right to their own records.

Serious injuries can happen to patients from delayed treatment due to these failures of communication, so it's important for patients to be pro-active about their test results.

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Posted In: Communication , Doctor-Patient Relationship , Medical Records , Testing

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A new study from the journal Quality and Safety in Health Care, and discussed in the NY Times Well blog, reveals common testing mistakes by primary-care doctors. Of course, the same kinds of errors can happen in hospitals and other health care settings.

Out of close to the 1,000 mistakes experienced by 590 patients, the following testing mistakes were the most common:

-13% involved ordering the wrong test or failing to order a test

-18% involved performing the right test, but doing it improperly

-25% involved delays in getting tests back from the laboratory, failure to get the tests back at all, or errors on the results report

-7% involved failing to follow up with patients after receiving results from the laboratory

-75% of the mistakes caused the patient to suffer (through delays in proper treatment, greater expense, physical pain or worsened overall health).

What can a patient do about this? A possible solution would be to carefully ask and write down what specific test your doctor has ordered for you. Ask when the results of the test are expected from the lab. Then make sure you call to follow up after the doctor's office should have received the results. Read the results report, if you can get hold of it, to see the name of the test and make sure that the results are for the same test that was ordered and performed. All of these things might help reduce your risk. Calling the doctor to follow up is probably the most important item on the list, as Dr. Lamberts says in his quotation in the linked NY Times blog post.

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Posted In: Communication , Doctor-Patient Relationship , Medical Error , Medical Records , Testing

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Tara Parker-Pope recently wrote two articles discussing fundamental rules for doctors and for patients.

The rules for doctors can be boiled down to respect for the patient's feelings and understanding that they did not come to the office in order to waste the doctor's time for the sheer pleasure of it. Dr. Robert Lamberts, who blogs under the name of "Dr. Rob," is the physician who initially invented the rules for doctors quoted by Parker-Pope. His original article can be found on his blog, Musings of a Distractible Mind.

Dr. Lamberts also wrote the rules for patients, which mostly focus on the importance of being honest and open with your doctor, maintaining the lines of communication between you and the doctor and finding a doctor you can trust.

Both lists are worth reading in their entirety.

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It is instructive and interesting to read about Senator Edward Kennedy's treatment for his brain tumor.

The linked article describes the change in direction between May 20th of this year, when Kennedy's brain cancer was first disclosed and surgery was not discussed as a possible treatment, and two weeks later, when neurosurgeons performed a "successful" surgery on his brain.

Why the change? From the article:

Precisely why Mr. Kennedy’s treatment course changed is not known; he and his doctors are not talking to reporters.

What is known is that a few days after Mr. Kennedy learned he had a malignant brain tumor in the left parietal lobe, he invited a group of national experts to discuss his case.

The meeting on May 30 was extraordinary in at least two ways.

One was the ability of a powerful patient — in this case, a scion of a legendary political family and the chairman of the Senate’s health committee — to summon noted consultants to learn about the latest therapy and research findings.

The second was his efficiency in quickly convening more than a dozen experts from at least six academic centers. Some flew to Boston. Others participated by telephone after receiving pertinent test results and other medical records.

As the article notes, Senator Kennedy called similar conferences of experts when one of his children was diagnosed with bone cancer and the other with lung cancer. He has been known to advise his colleagues in the Senate to use this method when dealing with an illness in the family.

Obviously, powerful senators can do things the rest of us cannot. Again, from the article:

Mr. Kennedy can tap leading doctors for answers in a way few patients could. His celebrity status aside, he has spent a career promoting insurance and other ways to improve the health of Americans. And he has had a track record of being thorough and diligent in researching medical options when relatives or friends have fallen ill.

Nevertheless, despite Kennedy's power and influence, there are ways in which the average person can imitate his example and seek second and third opinions on their medical care:

Several doctors not connected with Mr. Kennedy’s case said in interviews that they admired his resourcefulness in getting more opinions simultaneously. At the same time, these doctors said many average patients gained competent advice, without a command performance, by sending pertinent records to experts for their opinions.

Many patients search the Internet for medical information and ask that their scans and other data be sent electronically or by overnight services.

Then such patients visit, call or write the consultant.

The potential negative consequence of all this opinion-shopping is that people may focus on what they want to hear and disregard everything else. This is partly why the doctors quoted in the article strongly recommend actually meeting physicians whose advise you intend to take (rather than just sending records and receiving written responses). That way the physician can make sure your expectations are realistic and address your specific concerns.

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Posted In: Accessibility of Healthcare , Cancer , Communication , Disclosure , Doctor-Patient Relationship , General , Surgery

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Tara Parker-Pope recently had an article on how fewer and fewer patients trust their doctors.

About one in four patients feel that their physicians sometimes expose them to unnecessary risk, according to data from a Johns Hopkins study published this year in the journal Medicine. And two recent studies show that whether patients trust a doctor strongly influences whether they take their medication.

The distrust and animosity between doctors and patients has shown up in a variety of places. In bookstores, there is now a genre of “what your doctor won’t tell you” books promising previously withheld information on everything from weight loss to heart disease.

What are the reasons for this new distrust? Several factors appear to be involved:

(1) Patients often don't understand what is going on with their health care because doctors and nurses are too rushed to explain things to them. Dr. Sandeep Jauhar, cardiologist and author of Intern: A Doctor's Initiation, is quoted in the article with a story of a patient who was transferred from one hospital to another with no explanation for why. He blamed a "broken system" for such failures to communicate.

(2) There has been greater coverage in the news of medical error, the power of the drug industry and the flaws in health care administration.

(3) The Internet makes information much more available, so patients can be informed skeptics. Drug companies also market directly to patients, so they come into the doctor's office with their own desires and opinions on what medications they should take. The upside to this is that patients have the information to challenge a doctor's errors. The downside is that many end up taking a drug commercial, for instance, at face value and will not listen to a doctor's reservations about the efficacy of a drug.

Again, from the article:

“Doctors used to be the only source for information on medical problems and what to do, but now our knowledge is demystified,” said Dr. Robert Lamberts, an internal medicine physician and medical blogger in Augusta, Ga. “When patients come in with preconceived ideas about what we should do, they do get perturbed at us for not listening. I do my best to explain why I do what I do, but some people are not satisfied until we do what they want.”

The whole article is worth reading. In addition, the article's page also has an embedded video clip of interviews with people discussing their attitudes to their doctors.

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Posted In: Communication , Disclosure , Doctor-Patient Relationship , General , Medications , Standard of Care--Hospitals , Testing

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Senior citizens who bring company to their doctor or hospital visits receive better medical care, according to a new study published in the Archives of Internal Medicine. Of the 38.6% of elderly patients who brought a companion along on their medical visits, the most common person to bring along was a spouse or an adult child, followed by other relatives and friends and neighbors.

The effects of bringing along a companion are clear and beneficial:

The parts that these companions played varied. Primarily, they aided communication in the visit, with 63.8% of companions filling this role. Of these, 44.1% reported recording physician comments and instructions, 41.5% communicating information related to the patient's medical conditions to a health professional, 41% asking questions, 29.7% explaining the instructions given by the physician, and 3.3% who translated the English language. Companions filled other roles as well, with 28.4% of all companions present for moral support and to provide company, 16.6% to help schedule appointments, and 8.4% to provide physical assistance.

Additionally, the elderly patients who regularly brought companions were more satisfied with their physicians' services, including technical skills, information dissemination, and interpersonal skills. If their companions actively assisted with communications, the patients rated their physicians' informational and interpersonal skills more highly. This trend became stronger in patients who reported themselves to be in worse health.

Not only is an elderly person more likely to feel better during the visit if he or she brings along a supportive person, but it will also lead to better communication with the doctor.

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Posted In: Communication , Disclosure , Standard of Care--Hospitals

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Many doctors believe that the recent sharp increase in drug advertising has altered the doctor-patient relationship for the worse.

From the article:

Like many doctors, Ron Ben-Ari thinks ads on TV for prescription drugs frequently go too far in touting a particular pill's benefits without adequately presenting the risks.

But Ben-Ari, who has a practice at USC's Health Sciences Campus in East L.A., accepts that the ads have fundamentally altered the doctor-patient relationship. He's found that it can be fruitless to try to talk a patient out of seeking some name-brand medication, even when a cheaper alternative is available.

"If it's an appropriate medicine for the person, I'd probably prescribe it," said Ben-Ari, who also teaches at County-USC Medical Center. "We're in an era of information. We have to evolve with it."

This highlights the fact that a little information can be a dangerous thing, since a little information is often incomplete information. If patients come into a doctor's office wanting a certain drug because they're aware of cherry-picked facts gleaned from ads designed to put a drug in the best light, and refuse to be talked out of it, then their health will obviously suffer.

It's good for patients to be informed about drugs even before they walk into a doctor's office, but that information needs to come from reliable sources. If a drug looks good to you based on what you see in an advertisement, it's a wise idea to do some independent research and ask your doctor's opinion before becoming set on it.

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Posted In: Communication

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Pain is a tricky medical problem because it's impossible to measure or adequately communicate to another person. Tara Parker-Pope discusses how patients in pain use art to describe what they're going through:

Sacramento resident Mark Collen, 47, is a former insurance salesman who suffers from chronic back pain. After his regular doctor retired due to illness, Mr. Collen was struggling to find a way to communicate his pain to a new doctor. Although he has no artistic training, he decided to create a piece of artwork to express his pain to the physician. “It was only when I started doing art about pain, and physicians saw the art, that they understood what I was going through,” Mr. Collen said. “Words are limiting, but art elicits an emotional response.'’ Mr. Collen wrote to pain doctors around the world to solicit examples of art from pain patients....

...Finding ways to communicate pain is essential to patients who are suffering, many of whom don’t receive adequate treatment from doctors. In January, Virtual Mentor, the American Medical Association Journal of Ethics, reported that certain groups are less likely to receive adequate pain care. Hispanics are half as likely as whites to receive pain medications in emergency rooms for the same injuries; older women of color have the highest likelihood of being undertreated for cancer pain; and being uneducated is a risk factor for poor pain care in AIDS patients, the journal reported.

The subjective nature of pain means that doctors often feel inclined to dismiss it, or assume that the patient is lying or exaggerating, especially if it fits in with the doctor's preconceived stereotypical beliefs. It is therefore vital that doctors respect what patients say about their pain. If you are a patient, there is no need to feel shy about insisting forcefully that you are in pain: that is an area within your expertise, not the doctor's.

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A new project, conceived of by Google and the Cleveland Clinic, will try to give patients the ability to access and control their health information.

This project would hopefully enable patients to give their information quickly and easily to multiple physicians and pharmacies. Such a thing would be beneficial because, as we have discussed often on this blog, lack of communication between physicians is a frequent cause of medical error. Patients might assume that doctors would automatically share relevant facts with each other in their medical histories, and this is indeed what is supposed to happen, but too often it does not. This new project would give the patient some control over making sure that doctors know important details.

The New York Times also has some comments on this, quoting Dr. John Halamka on the importance of "consumer-oriented health care."

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Posted In: Communication , Disclosure

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Most scientists are extremely unwilling to part with the raw data of the studies they perform on cancer and other life-threatening illnesses.

The author of the article speculates that this reluctance is due to convenience and careerism, specifically the fear of having others (especially layfolk) analyze their work and possibly find flaws in it. This may be an uncharitable speculation but it is difficult to disagree with, especially when one considers the pathetic reasons scientists cite for hiding their data. From the article:

Dr John Kirwan, a rheumatologist from the University of Bristol in England, has studied researchers’ attitudes on sharing data from clinical trials. He found that three-quarters of researchers he surveyed, as well as a major industry group, opposed making original trial data available. It is worth restating this finding: most scientists doing research on how best to help those in pain, or at risk of death, want to keep their data a secret.

Dr. Kirwan went on to ask his subjects why. Their reasons were entirely trivial: one cited the difficult of putting together a data set (wouldn’t this have to be done anyway in order to publish a paper?); another was concerned that the data might be analyzed using invalid methods (surely a judgment for the scientific community as a whole). This is something of a clue that the real issue here has more to do with status and career than with any loftier considerations. Scientists don’t want to be scooped by their own data, or have someone else challenge their conclusions with a new analysis.

As the author points out, however, new analyses are exactly what cancer patients (and patients in general) need. We all need all the information available that pertains to our health, so we can look at it and think about it and use it to safeguard ourselves. This reluctance to part with information is contrary to the spirit of scientific openness and inquiry. It is also unsafe and unfair to patients.

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Posted In: Cancer , Communication , Disclosure

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Guilt, fear, and further isolation plague families of victims of medical error, says the New England Journal of Medicine.

Why guilt? Because families feel like they should have kept a closer watch on their loved one, and regret the trust they placed in the health care institution or its workers. This guilt persists even if the family took reasonable precautions--for instance, the authors of the article discuss a case where a patient was given morphine and died of kidney failure despite the fact that his family repeatedly told doctors and nurses that he had sickle cell anemia. The family often feels inadequate for being unable to watch the patient twenty-four hours a day.

They also feel fear: fear of retribution, fear that health care workers will neglect or compromise their loved one's care if they make some sort of formal complaint. This is particularly true of people in disadvantaged and disempowered sections of society.

Their emotional turmoil is often compounded by the reactions of the health care workers, who will often isolate the patient's family after realizing their error. This leads to further pain and may even lead to further medical mistakes:

Guilt persists in the daughter of a woman who died after a series of errors culminating in a missed case of pneumonia. Although the daughter is a nurse, she could not gain entry into her mother's circle of clinicians, who closed ranks after the errors occurred. "The nurses were ruder to me than you can ever imagine, and the doctors wouldn't tell me anything," she said. "They looked at me like I was a dumb little girl. I became so addled that I couldn't act decisively and get her out of there to another hospital. I'll never get over my guilt."

This isolation comes at a time when, as the authors point out, patients most need someone to communicate with them on a personal and human level. They suggest that honest, direct communication--without condescension, buck-passing or hedging around to avoid lawsuits--is the best way to keep the patient safe as well as feeling satisfied with the care he or she has received.

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Posted In: Communication , Medical Error

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Critical thinking, communication and honest working relationships between doctors and nurses leads to better patient care. This sounds like common sense, but it is also the result of an analysis done by Dr. Barbara Loeb and RNs Mary Sue Dailey and Cheryl Peterman.

In brief, the three main areas that need improvement and hold potential for better patient care are:

1) Critical thinking--focusing on solving problems rather than blaming, analyzing root causes, looking at issues in different lights

2) Communication--doctors and nurses being open with each other about their concerns and sharing vital information, rather than assuming that important information is already known to everybody

3) Collaboration and collegiality--mutual respect and positive interactions between doctors, nurses and other healthcare providers.

As we have discussed before, communication and teamwork are an essential aspect of good medical care.

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Posted In: Communication

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An article in the New Yorker by Atul Gawande highlights the simple ways in which hospitals can be made less dangerous places for their patients. A checklist to make sure intensive care doctors and nurses handle catheters correctly has been proven to dramatically reduce the risk of deadly infections. Gawande focuses on the work of Peter Pronovost, MD, an intensive care specialist at Johns Hopkins Hospital who consults with hospitals around the country to spread his gospel of routinizing simple procedures. For example, on catheter infections, Pronovost's work was first published in December 2006 in the New England Journal of Medicine. In 108 ICU's across Michigan, they were able to virtually wipe out catheter-based infection by enforcing a required checklist of five interventions: hand-washing before handling a catheter, full-body draping when inserting a central venous catheter, scrubbing the skin with chlorhexidine, avoiding catheters in the groin, and removing unneeded catheters as soon as possible. All hospitals should implement these simple ideas which can prevent deadly infections and save lives. Dr. Pronovost is a pioneer in patient safety research.

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Posted In: Communication , Infections , Standard of Care--Hospitals

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This may fall into the category of stating the obvious, but a study published on Tuesday September 4th founds that doctors who graduate medical school with poor communication skills are more likely to get complaints from patients down the road in their careers.

The researchers tested and scored medical school graduates, who knew that they were being watched and graded (and who still often communicated poorly), and then tracked them and the complaints made against them. Lower scores correlated strongly with a greater number of complaints.

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Posted In: Communication

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