How Much Do You Want Your Doctors To Say About Risks of Treatment?

When I was diagnosed with breast cancer, I was working as a board-certified oncologist. The initial decisions most patients face – which doctor to see, what kind of doctor to see, and at which medical center to see them – were basically non-decisions. I knew, within an instant of my diagnosis, who I’d ask to be my oncologist, surgeon and plastic surgeon. Those choices were straightforward, because I knew what those physicians were like in terms of how they cared for patients, their knowledge and other aspects of their practices and personalities.

The harder decisions were what treatment to take, or not, for my early-stage breast cancer. I was perhaps the most informed cancer patient who could walk into an oncologist’s office. I was familiar with the different regimens. I knew that adjuvant chemotherapy would, roughly and over the long haul, reduce my odds of recurrence by a third. I was aware that, if I opted for a lumpectomy, radiation treatment would reduce the local recurrence rate but was unlikely to affect my long-term survival. I understood that dose-intense regimens were more likely to make me sick and more likely to cause problems down the road.

And yes, in the back of my head I knew that chemotherapy can cause another cancer. Did I think about that possibility? The best answer is, probably, not so much. I was coping with the present.

But that knowledge did influence the decision I made to take a relatively “light” dose of chemotherapy. I was lucky, also, in that I understood my pathology. My tumor, at 1.5 cm, with a negative sentinel node and generous expression of hormone receptors, was a good-prognosis tumor. I was 42 years old, and wanted to live for a few more decades if I survived my spine surgery (another story). I chose the minimal amount of chemo that had been shown in clinical trials to reduce the odds of recurrence.

Last week, I wrote a piece for the Atlantic on how doctors and patients talk about the risks of chemotherapy, or not, and whether patients listen or necessarily want to listen. The reason I put it out there is because I’ve seen doctors shy away from this part of the conversation about cancer treatment. I’m a firm believer in informed consent, and in patients’ access to as much information as they choose to have. If you get chemotherapy, you have the right to know about these risks, and to ask your doctor about them.

I’ve been there with patients who’ve said: “please, don’t tell me this. I can’t deal with it.” Some might even consider it cruel to tell patients with a serious, urgent and treatment-needing condition details of all the possible side effects. Many ask, “what would you do, doctor, if it were someone in your family?” And if they like and respect you, they go with your recommendation.

This kind of paternalism, when a doctor assesses the risks and benefits, and spares the patient’s “knowing” seems anachronistic. But it may, still, be what many people are looking for when and if they get a serious illness. Not everyone wants a “tell me everything” kind of physician. What do you think?

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I Hope My Doctors Aren’t Blogging Too Much

Today’s ACP Internist reports that nearly 1 in 8 doctors has a blog. This news comes from a study published by the Journal of the American Medical Informatics Association.

First, the study’s flawed from a methodological standpoint: The investigators, based at the CDC, used data from a 2009 DocStyles survey of 1750 primary care physicians, pediatricians, obstetrician/gynecologists, and dermatologists in the U.S. According to the paper, this sample was drawn from the Epocrates Honors Panel. So they’re a technically-oriented bunch. Besides, the survey didn’t include oncologists, cardiologists, neurologists, radiologists or surgeons, among other physician-types.

Red flag: “Physicians who completed the survey were paid an honorarium of US $55–US$95.” This tells me that the doctors who participated have time on their hands and could use an extra $75 or so; it’s unlikely they’ve got thriving practices.

Blogging was defined as “posting commentary, descriptions of events, or other material such as graphics or video on a website which serves as an online journal.” The featured result was that 13% of the paid, internet-using physicians in the study said they blogged in the prior six months. The 226 bloggers tended to be young and male.

Seriously –

It’s unlikely that 1 in 8 doctors in the U.S. are blogging. I say this not just because the study’s flawed, but because almost all the physicians I know and trust with my health care don’t have time to write, unless they’re taking notes for a book, or do so as a hobby. They might, for example, blog about video games, or vegan recipes. But as far as their work is concerned, most non-shift doctors are lucky to see and examine all their patients, finish their notes and answer patients’ phone calls and get home by 11 PM.

In my view as a patient, if you’re a doctor and you blog for fun, there’s no issue. Blog away, and mind HIPPA. But if you’ve got anything else to do with your time, like –

  • reading medical and scientific literature
  • enjoying time with friends, family and others in your community
  • resting
  • exercising
  • spending one extra minute with each of your patients
  • re-checking primary data and calculations before publishing research
  • watching a movie
  • having lunch with colleagues
  • gardening
  • bowling, if that’s your thing…
  • <insert your passion>

– live your life! Spend time wisely.

I want my doctors to be happy, up-to-date, and rested.

Besides, what’s the point of so many busy, needed health professionals writing about their experiences or opinions, except if it’s for their own satisfaction?

 

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Do Adults Need Physicians to Tell Them to Exercise?

According to a new CDC report, only 1 in 3 doctors advise their adult patients to exercise. The survey-based findings are limited, in part, because they rely on people’s recollection of whether they’d visited a physician in the previous year and what they were told. Nonetheless, the study revealed some clear trends:

1. In 2010, 32.4% of adults who’d seen a health care professional were advised to begin or continue with exercise or other physical activity. That fraction’s up significantly from 2000, when a slim 22.6% of patients recalled their doctors telling them to get a move on.

2. Among folks over 85 years, nearly 29% say they were told to exercise. That number’s nearly doubled since 2000, when only 15.3% of elderly patients reportedly received this kind of advice.

3. Adults with diabetes were told to increase their activity more often than those with high blood pressure, cardiovascular disease and cancer. Compared with healthy weight adults, obese people were twice as likely to have been told to exercise by a physician or other health professional.

An underlying message is that doctors should be prodding their patients to exercise. From the report:

Research points to the benefits of physical activity for reducing the risk of chronic health conditions (1–4). Engaging in regular physical activity can reduce medication dependence, help maintain functional independence, and improve the quality of life for older adults (5,6). Physicians and other health professionals can be influential sources of health information, and exercise counseling by primary care physicians has been shown to increase patients’ participation in physical activity (6–9).

There was discussion about this yesterday on Twitter, stemming in part from a USA Today article on the report. And here’s the essence of the short-form debate:

Some suggested that doctors don’t tell patients to exercise because they, themselves, are overweight. Or it’s because they don’t feel comfortable recommending for others what they don’t do themselves. While this might explain some physicians’ behavior or discomfort with the topic, it can’t explain that of the majority.

So why don’t more doctors prescribe exercise for their patients?

Reasons I wonder about include a lack of time for “non-essential” communication, especially in clinics. In specialists’ offices, the omission of exercise could have to do with the visit’s purpose. A gastroenterologist or internist who evaluates a patient for a problem like diarrhea, say, might not think to ask about exercise. For some doctors it might be, problematically, an attitude issue – that they just don’t care that much, or think it would be a waste of time to discuss the matter of exercise.

Whatever the reasons are that most doctors don’t bring up the issue, one might ask this: Why do adults need doctors to tell them about the health benefits of regular exercise? After all, it’s common knowledge – the kind of thing taught in elementary school, like nutrition should be – that regular exercise is good for most people. As we age, being out of condition makes every task in life, like walking a few blocks, harder.

In an ideal world, we’d have most adults exercising regularly, and doctors who’d occasionally intervene and counsel patients about what they shouldn’t do because of a particular medical condition, like arthritis or heart limitation. I guess we’re not there yet –

All for this week,

ES

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Contemplating Empathy, Early This Morning After the Earthquake

Last night I began reading a long essay, Regarding the Pain of Others, by Susan Sontag. The work dates to 1993, and centers on the power of photographs of war. She considers Virginia Woolf’s earlier reflections on horrific images from the Spanish Civil War, in Three Guineas.

Sontag writes: “Not to be pained by these pictures, not to recoil from them, not to strive to abolish what causes this havoc…for Woolf, would be the reactions of a moral monster… Our failure is one of imagination, of empathy: we have failed to hold this reality in mind.”

This morning I awoke early and saw video of an earthquake rattling portions of Japan and a tsunami destroying broad swaths of land in a country where I’ve never been. I’m distracted by those images and while I’m trying to work on another subject, my mind flips back to what’s going on there, along the Pacific.

Japanese Tsunami Victims

(from Flickr: Japanese Tsunami Victims, by Logan)

So it seems like the right day to review some basics on empathy. I hope my readers won’t mind if this part is too simple. It’s just that the word is thrown around so often lately, in places like Twitter and Time Magazine, on doctors and compassionate health care; I should remind myself if no one else exactly what empathy is supposed to be.

First, a distinction: Sympathy usually refers to feelings elicited upon a mutual or shared experience; empathy involves understanding another’s experience.

A post on KevinMD by Barbara Ficarra, a few months back, led me to a 2003 academic review on empathy in clinical medicine, by Jodi Halpern, MD, PhD, who writes:

…Outside the field of medicine, empathy is an essentially affective mode of understanding. Empathy involves being moved by another’s experiences. In contrast, a leading group from the Society for General Internal Medicine defines empathy as “the act of correctly acknowledging the emotional state of another without experiencing that state oneself.”3

Halpern explains the difference between empathy and sympathy, with a distinction I was taught in a rudimentary ethics class in medical school:

This recent definition is consistent with the medical literature of the twentieth century, which defines a special professional empathy as purely cognitive, contrasting it with sympathy. Sympathetic physicians risk over-identifying with patients…

Th open-text article in the Journal of General Internal Medicine (18: 670–674, 2003) is well-worth the full read.

Meanwhile I’ve discovered measurable criteria for physicians’ empathy, the so-called Jefferson Scale of Empathy. From the Science Daily (via the Tweet, above) on a report in the journal Academic Medicine:

Researchers used the Jefferson Scale of Empathy (JSE) — developed in 2001 as an instrument to measure empathy in the context of medical education and patient care. This validated instrument relies on the definition of empathy in the context of patient care as a predominately cognitive attribute that involves an understanding and an intention to help. The scale includes 20 items answered on a seven-point Likert-type scale (strongly agree = 7, strongly disagree = 1)…

This sort of empathy rating system seems strange to me, even alienating; it’s plainly too numerical.

I’d rather stick with my feelings, and stare at today’s photographs and videos, and finish reading Sontag’s notes on The Pain of Others, this evening.

Monster Quake Hits Japan (the Australian.com, March 11, 2011)

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Twitter, The Notificator, and Old Social Media News

A series of clicks this morning brought me to an interesting web finding in a Wiki-like Dead Media Archive that links to NYU’s Steinhart School of Media, Culture, and Communication.

Dead Media Archive, NYU Steinhardt School of Media, Culture and Communication

And there rests the Notificator, said (by me) to be Twitter’s great-great-great grandfather, with details:

On September 9, 1932, the London Times printed an article following up on a “correspondence in The Times proposing that British railway stations might, like those in Japan, provide facilities for messages from one person to another to be displayed.” An electrical engineer had written to the paper, agreeing, and noted a device that he had heard of; an “automatic machine…to be installed at stations and other suitable sites, and on the insertion of two pennies facilities were given for writing a message that remained in view for two hours after writing.”

The archive cites the August 1935 issue of Modern Mechanix & Inventions Magazine: “To aid persons who wish to make or cancel appointments or inform friends of the whereabouts… the new machine is installed in streets, stores, railroad stations or other public places where individuals may leave messages for friends… The machine is similar in appearance to a candy-vending device.”

In case you’re interested, my starter source was today’s post on Get Better Health by Dr. Westby Fisher on the Pros and Cons of Social Media for doctors. There, a link in a list “you may also like these posts” drew my eye: Twitter First Conceived By British Hospital In 1935. That July, 2009 post by Berci of ScienceRoll, included an image of an unidentified old-appearing newspaper with an intriguing photo of a man with a hat pointing to a strange device with the word “Notificator” at its top.

A Google search of the headline, “Robot Messenger Displays Person-to-Person Notes in Public” led me to a 1935 Modern Mechanix issue (with the fabulous logo, “YESTERDAY’s Tomorrow TODAY”), some Russian blogs and, finally, the Dead Media Archive, based in principle if not in fact, somewhere near my home in Manhattan, 3 miles or so north of NYU.

This Web find is a good example of how social media and on-line reading can accelerate learning and finding new (and in this case old) ideas. And what goes around comes around –

The Dead Media Archive brims with interesting stuff, worth a virtual visit!

I may go check it out in person, sometime later, for real, if that’s possible –

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