Badmouthing Your Doctor

A headline on the front page of this morning's Boston Globe jumped out at me - "Doctors fire back at patient critiques: Lawsuits target harsh web posts." It tells the painful story of the relationship between Gary Cotour and Dr. Sagun Tuli, neurosurgeon for his late wife Lyn.

Dr. Tuli operated on Lyn Votour to remove cancerous vertebrae. During the second surgery Ms. Votour experienced a stroke. After a stay at a rehabilitation hospital she returned home, bedridden and dependent on a feeding tube. Two years later, depressed and in pain, Lyn Votour asked Gary to remove her feeding tube. He did so, and she died.

Mr. Votour's relationship with Dr. Tuli apparently went well during her acute hospitalization, but after discharge it fell apart. After her death Mr. Votour asked to meet with Dr. Tuli. Here's what he later said about the situation:

I was not doing well with grief. I wanted to go back and talk to Dr. Tuli about some questions that were bothering me. I really wanted to ask her why don’t doctors follow up after discharge. I wanted to understand why doctors just wash their hands after discharge.

The meeting Mr. Votour wanted never happened. Dr. Tuli claims that a hospital lawyer told her not to meet with Mr. Votour. The hospital denies this and claims that Dr. Tuli "indicated that she was not comfortable meeting with Mr. Votour."

Mr. Votour posted on his blog that doctors at the rehabilitation facility had encouraged him to file a malpractice suit against Dr. Tuli and that he lost his wife "not to cancer but to indifference and egotism."

In response, Dr. Tuli is suing Mr. Votour for defamation, asking for $100,000 in damages.

Whether it was the hospital lawyer's advice or Dr. Tuli's discomfort that led to not meeting with Mr. Votour after his wife's death, that meeting should have occurred. In addition to all of the work that has been done on the benefitial effects of apology, I draw on a personal experience here. Some decades ago I had brief contact with a college age student suffering from severe depression. The student believed that the depression stemmed from stressors, and that returning to school would alleviate the symptoms, as had occurred in the past. After discussion, I agreed with this prediction, but advised the student (I'm deliberately leaving out gender and other identifiers) to seek immediate help if the symptoms recurred. The symptoms did recur. The student sought help as I had advised, but committed suicide in the course of the care process.

The student's family asked to meet with me. We met for an hour or two. They pressed me to explain why I supported return to college rather than immediate hospitalization. After I did so they asked if I felt I had made a mistake. I said that I had thought carefully about the advice I'd given, but that in retrospect I wished I had followed a different course. I expressed my great sorrow about the student's death. It was one of the most painful meetings of my entire career.

Some years later I was contacted by a malpractice lawyer representing the family. My anxiety soared. The lawyer asked me for information, but told me that the family was bringing suit against the college, and had specifically requested that I not be brought into the case.

Given the terrible outcome it would have been entirely understandable for me to have been sued. I believe the heart to heart meeting we had had after the student's suicide assuaged potential bitterness against me. The family may well have felt that I made an erroneous judgment, but they did not feel as Mr. Votour did that the student's death was caused by "indifference and egotism."

The Boston Globe article quotes David Ardia, codirector of the Center for Media Law and Policy at the University of North Carolina, about the impact of the Internet on physician concern about our reputations: 

the Internet has realigned the power structure that existed between doctors and patients, giving patients far more influence than they have ever had. The Web is just chock-full of people commenting on their experiences. Doctors have reacted with a great deal of hostility toward this.

The article led me to look myself up on the rate-your-physician sites. The single patient response on healthgrades gave me the lowest possible grades on every category. I ended my clinical practice five years ago, but if I were still in practice I'd be concerned that 100% of the reviews I'd received gave me a F grade.

Dr. Tuli's suit against Mr. Votour reflects a classical form of "good vs good" ethical conflict. Freedom of speech is a fundamental good, enshrined in the First Amendment. But our public reputations are precious to us, and even a non-verbal critique like the one an anonymous former patient gave me on healthgrades can undermine a career. As unseemly as it is for a physician to sue a former patient, Dr. Tuli will not be the last physician to follow that unhappy route.

(Two examples of enterprises that offer to protect physician reputations can be seen here and here. And, thanks to an anonymous reader, here is a link to the original post that is no longer on the web.)

Fibromyalgia, Blaming the Victim, and Lyrica

Kristin Barker, a sociologist at Oregon State University, has a fascinating, fun to read article in a recent issue of Social Science & Medicine - "Listening to Lyrica: contested illnesses and pharmaceutical determinism."

In my psychiatric practice I was often asked to see patients with mysterious symptoms. Many of the patients resented being asked to see a psychiatrist, feeling they were being sloughed off as whiners, hypochondriacs, or malingerers and told that their symptoms were "all in the head." There was no doubt that they were suffering. But what were they suffering from?

Some of these patients had been diagnosed with fibromyalgia syndrome, a condition of unkown etiology characterized by chronic widespread musculoskeletal pain, multiple tender points, sleep disturbance, fatigue, and other "non-specific" symptoms. In June 2007 the FDA approved an antiseizure medication - appealingly branded as "Lyrica" - for treatment of fibromyalgia. Having a drug officially endorsed as treatment for their condition went a long way towards validating the symptoms as reflecting a "real" illness.

Barker makes three key points:

• Having a treatment strengthens belief in the disease. If there's a pill that helps, the person must be ill. From a sociological perspective, Lyrica wasn't simply treating a condition, it was validating the condition as real!
• Direct to consumer advertising (DTCA) has a powerful impact on social behavior. Insofar as Lyrica ads reduced the blame patients often experienced, the ads were a boon.
• But the ads, which helped make Lyrica a billion dollar blockbuster drug for Pfizer, did so in part by showing glamorous women (actresses) supposedly with the condition, and by portraying the drug as a magical cure. In real life Lyrica rarely acts in the magical way the ads suggest. Some women with the condition felt that the ads led to their being blamed for not getting fully well as the actress portrayed. (For an example of such an advertisement, see here.)

Barker concludes that Lyrica has been a decidedly mixed blessing. It contributed to diminished blaming of the victim. It gave physicians and patients an additional intervention to try. But it fostered false hopes and led to further medicalization - women who might have recovered from a bad spell without diagnosis or medical intervention were persuaded that they had an illness and needed a drug. And when Lyrica didn't perform as the ads suggested it would, some women were blamed for refusing to get better.

(For another post about blaming the victim, see here.)

Medical Ethics and Blaming the Victim

A article on female genital pain got me thinking about one of my pet peeves in medicine – blaming the victim.

The condition – vulvodynia - was often blamed on the woman, as in saying “it’s a fear of sex,” “it’s in your head,” or “it’s classical hysteria.” Now it turns out that identifiable, but subtle, anatomical factors appear to cause it. Treatment has improved. Blame is diminishing.

I first heard clinical teachers say things like “the patient failed chemotherapy so we decided to try…” when I was in medical school. The people saying this were typically devoted caretakers. The implication that the treatment didn’t work because the patient “failed” was rooted in health jargon, not their hearts.

But the “patient failed” phrase isn’t just a piece of sloppy grammar. It shows something about the culture of health care, at least in the U.S.

The good thing the phrase reflects is just how responsible caretakers feel for patients. If the treatment doesn’t work we tend to feel guilty, even when we’ve done the best that can be done.

The bad thing the phrase reflects is our collective cowardice. Instead of acknowledging the sad fact that medicine, while powerful, is limited, we blame the patient. Medicine didn’t fail. The patient did.

Looking into what has been written about blaming the victim I came upon this moving 2004 exchange in The Oncologist:

TO THE EDITOR:

As a lung cancer patient and advocate, I have been enormously heartened the past few months with the recent discovery of the epidermal growth factor receptor (EGFR) mutation and its immediate and long-term implications for improved treatment and extended survival for people with lung and other cancers.

In reading about the promise and potential of this new finding in Dr. Bruce Chabner’s editorial, "The Miracle of Iressa" [1], I was jolted from my excitement by one particular phrase. Dr. Chabner stated that "...patients will continue to receive Iressa when they fail chemotherapy." When they fail chemotherapy? Have the patients really "failed" when chemotherapy drugs do not work? Of course they haven’t. So why use a phrase that implies blame?

Dr. Chabner, whom I know to be an excellent and sensitive oncologist, is far from alone in expressing the failure of cancer treatment in a less than patient-friendly way. This unfortunate convention is used in the medical literature, at professional conferences, and not surprisingly, in the clinic. It is common for oncologists to tell patients that they "failed drug X." By telling patients they failed to respond to treatment, doctors may increase the guilt that many patients already struggle with as a result of their cancer diagnoses. For others, like me, it becomes an annoying refrain. At minimum, it puts emotional distance between doctor and patient and undermines the doctor-patient relationship. Just imagine under the same circumstances if the patient said to the doctor, "You failed to give me the right drug to treat my cancer." The question isn’t who failed, but what failed.

I ask Dr. Chabner and The Oncologist readers to be mindful of the language used when discussing the failure of therapies in cancer patients. Something as simple as, "Drug X didn’t work for you, maybe this one will," is one example. There are numerous ways to express the failure of cancer treatment without failing the patient, too.Sincerely,

Karen Parles, MLS
Editor, www.LungCancerOnline.org
Executive Director, Lung Cancer Online Foundation

FROM THE EDITOR:

Our reader, Karen Parles, points out an important, and unfortunate, mistaken use of the word "failure" in my recent editorial, describing a patient’s lack of response to Iressa therapy [1]. The failure of treatment is not the patient’s fault in any regard. The fault lies with the current state of science, and our understanding of the disease. The convenient phrase "failure," so often used in our society to describe an unhappy outcome beyond the control of the individual, has no place in the context of unsuccessful treatment of a disease such as cancer. I apologize for myself and my colleagues, who so often confuse outcome with intent, and I thank Karen Parles for raising our consciousness to the all-important use and impact of our words.

I assure her that I have expunged "that phrase" from my vernacular ... and I urge my colleagues to do likewise.

Bruce Chabner, M.D.
Editor-in-Chief, The Oncologist
Clinical Director, Massachusetts General Hospital Cancer Center.

Hats off to Dr. Chabner! I hope our colleagues follow the example he's set.