On Pleasant Behavior And Being A Patient in the Hospital

Dr. Wes has a short post today, How to Optimize Your Care While Hospitalized that got me thinking. He writes:

…A lone doctor listening to some highly experienced and capable nurses, reflecting on their work:

“If the patient’s nice, it’s a lot easier to want to go back in that room with them. Their reputation travels at the nurses station. But if they’re mean, well, it’s not as easy to go back in there, so I might not stop by as often.”

“I agree, it’s easier to catch flies with honey than vinegar.”

Words to live by.

My first take: He and the nurses are right, of course: If you’re pleasant and courteous, nurses (and doctors, and physical therapists, and aides, and cleaning staff…) are more likely to spend time in your hospital room. The maxim applies in many realms.

But let’s take the conversation to the next level. What if the patient’s in pain? Sad, or maybe even crying? In that case, are the hospital staff less likely to enter? Probably so, but health care workers are a diverse bunch.

There are many nurses I’ve known who’d spend more time with an unhappy soul, or someone in pain. As a doctor, I think the same holds.

Maybe some people are grouchy because they’re uncomfortable, worried or lonely and just don’t have it in them to smile. They may lack insight or simply lack manners. They might be very upset, say, that a son or daughter hasn’t visited, or another unmentioned disappointment.

Perhaps it’s the professional’s job to see beyond the smile, or the anger.

Not an easy job  –

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Internet-Based Medical Information May Prove More Trustworthy Than Printed Texts

Today Ed Silverman of Pharmalot considers the case of a ghost-written medical text’s mysterious disappearance. The 1999 book, “Recognition and Treatment of Psychiatric Disorders: A Psychopharmacology Handbook for Primary Care,” (reviewed in a psychiatry journal here) came under scrutiny last fall when it became evident that the physician “authors” didn’t just receive money from a relevant drug maker, SmithKline Beecham; they received an outline and text for the book from pharmaceutical company-hired writers.

poster for the X-Files

The book is no longer evident at the website for STI (Scientific Therapeutic Information), the company that provided authorship “help.” I tried to get a copy on Amazon.com, where it’s said to be temporarily out-of-stock. The work remains listed in the Library of Congress on-line catalog: #99015420.

I’m reminded of clinical handbooks I used all the time when I was practicing hematology and oncology. At the hospital, I’d get freebie, small-sized chemo regimen primers that conveniently fit into my white coat pocket. In retrospect, perhaps I didn’t adequately check the authors’ credentials on those mini-book sources. It was too easy to take that information and keep it at hand, literally, especially in the times before we had constant Web access.

And I’m struck by how the Internet – that infinite bucket of once-lowly or at-best mixed-quality information doctors disparaged for years – may prove a better information source than printed books.

It’s a minor paradox, or a twist in trust –

Now, with a few clicks if you know where to look, you can get recommendations for chemo dosing from reliable sources, like the NIH or peer-reviewed journal articles. Although transparency about physicians’ ties to industry is not nearly yet where it should be, you can find out about more about an author’s connections and potential conflicts of interest than at any time in medical publishing history.

What we write here can’t be discarded, burned, or go out of print.

(And it may be corrected, readily, before the next edition.)

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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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The Flip Side of Unrealistic Optimism

Last week, Pauline Chen wrote on medical ethics and clinical trials. She reflects on her training at a cancer research hospital, where some cancer patients go with unrealistic optimism.

Like Dr. Chen, I spent part of my training at a famous cancer center where I worked as a resident and fellow on rotations. And yes, some patients were unreasonably optimistic and some – perhaps even most, it seemed – didn’t fully “get” the purpose of their trial, which in Phase I studies were not designed to help them. This is a real dilemma for treating oncologists.

The problem of patients’ false expectations might arise from a Lake Wobegon effect, suggests Dr. Daniel Sulmasy in the Times piece: “If you have more than 50 percent of patients saying their chances are better than average of avoiding some harm or obtaining some benefit, they are being unrealistically optimistic because you can’t say that most people are above average.”

I share Chen’s concern about ethics in clinical trials. Besides that patients don’t always (read: often) don’t understand the study, and that they may be coerced – usually subtly – into signing on, and that they may, ultimately, be simply used as objects in a researcher’s career-advancing investigation, clinical research sometimes does help humans, and progress occasionally happens in medicine. Take the woman with metastatic melanoma she recalls in the story: There might be effective drugs for her condition now, or next year.

The flip side of the Wobegon effect in medical ethics of clinical trials is that some patients (and their doctors) might have undue pessimism. These are the “50 percent” of patients who won’t show up at research centers, which could, potentially, help them to get well or at least feel better.

I think one of the biggest challenges for patients with serious conditions and their doctors is discerning what’s worth trying, and what’s snake oil in an academic outfit. Hard to know before the trial’s done –
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Portrait of a Peculiar Relationship at the End of Life

Last weekend I went to see a strange, slightly unnerving play, The Milk Train Doesn’t Stop Here Anymore by Tennessee Williams. It’s a sad take on the end of life, and desperation in some lonely characters.

Olympia Dukakis plays an aging, vain, older woman who’s dying of an unnamed condition. She takes morphine injections help her “neuralgia,” and uses liquor to entertain guests and, without success, to blunt her emotional pain. A handsome young man, presenting himself as a poet and sculptor of mobiles, climbs up the hill on which rests her Italian villa.

She’s no fool and quickly learns of his moniker, “the angel of death.” It’s said he has a particular fondness for terminal, moneyed women. Still he is impoverished; he shows up essentially starving and with nearly nothing in his sack; he has not exactly benefited from his exploits.

Darren Pettie and Olympia Dukakis

Dying alone is scary, unbearable. So she lets him in; her fear outweighs the final compromise of being used, and touched, by a stranger seeking something in exchange.

A straight read of the play might make you think it’s the story of a man who flatters older women in exchange for shelter and food. Another take might consider the man’s need or desire to comfort, to reduce another’s pain, which might be genuine while pathologic, and the pleasure he might feel in doing so.

Hard to know what was Williams’ intention in this 1963 work. I found it intriguing.

A medical lesson?

Yes, I’d say it is, especially now as doctors may become as robots. I can’t help but think of a patient who somehow and for whatever reasons alone in the hospital at the end of life, who cannot be helped by a machine. One role of the oncologist or other familiar physician, some might say, is to be there – even if paid, “on duty” if you insist – to hold the patient’s hand when the end comes.

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Opening Up a Dialogue on the R-Word

Today a short article in the NY Times, New Kidney Transplant Policy Would Favor Younger Patients, draws my attention to a very basic problem in medical ethics: rationing.

According to the Washington Post coverage, the proposal comes from the United Network for Organ Sharing, a Richmond-based private non-profit group the federal government contracts for allocation of donated organs. From the Times piece:

Under the proposal, patients and kidneys would each be graded, and the healthiest and youngest 20 percent of patients and kidneys would be segregated into a separate pool so that the best kidneys would be given to patients with the longest life expectancies.

This all follows last week’s front-page business story on the monetary value of life.

I have to admit, I’m glad to see these stories in the media. Any reasoned discussion of policy and reform requires frank talk on health care resources which, even in the best of economic times, are limited.

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A Note on Positive Thinking

Today I came upon a Jan 24 op-ed, A Fighting Spirit Won’t Change Your Life by Richard Sloan, PhD, of Columbia University’s Psychiatry Department. Somehow I’d missed this worthwhile piece on the sometimes-trendy notion of mind-over-matter in healing and medicine.

Sloan opens with aftermath of the Tucson shootings:

…Representative Giffords’s husband describes her as a “fighter,” and no doubt she is one. Whether her recovery has anything to do with a fighting spirit, however, is another matter entirely.

He jumps quickly through a history of the mind cure movement in America: from Phineas Quimby‘s concept of illness as a product of mistaken beliefs – to William James and New Thought ideas – to Norman Vincent Peale’s 1952 Power of Positive Thinking – to more current takes on the matter. These ideas, while popular, are not reality-based.

In his words:

But there’s no evidence to back up the idea that an upbeat attitude can prevent any illness or help someone recover from one more readily. On the contrary, a recently completed study* of nearly 60,000 people in Finland and Sweden who were followed for almost 30 years found no significant association between personality traits and the likelihood of developing or surviving cancer. Cancer doesn’t care if we’re good or bad, virtuous or vicious, compassionate or inconsiderate. Neither does heart disease or AIDS or any other illness or injury.

*Am. J. Epidemiol. (2010) 172 (4): 377-385

The Times printed several letters in response, most of which point to pseudo-evidence on the matter. All the more reason to bolster public education in the U.S., people won’t be persuaded by charismatic, wishful thinking about health care.

It happens I’m a fan of Joan Didion’s. I was so taken by the Year of Magical Thinking, in fact, I read it twice. Irrational responses, and hope, are normal, human responses to illness, disappointment and personal loss. But they’re not science.

Keep it straight.

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Why the Term ‘Patient’ Is So Important in Health Care

An on-line friend, colleague and outspoken patient advocate, Trisha Torrey, has an ongoing e-vote about whether people prefer to be called a “patient” a “consumer” a “customer” or some other noun to describe a person who receives health care.

My vote is: PATIENT.

Here’s why:

Providing medical care is or should be unlike other commercial transactions. The doctor, or other person who gives medical treatment, has a special professional and moral obligation to help the person who’s receiving his or her treatment. This responsibility – to heal, honestly and to the best of one’s ability – overrides any other commitments, or conflicts, between the two.

The term “patient” constantly reminds the doctor of the specialness of the relationship. If a person with illness or medical need became a consumer like any other, the relationship – and the doctor’s obligation – would be lessened.

Some might argue that the term “patient” somehow demeans the health care receiver. But I don’t agree: From the practicing physician’s perspective, it’s a privilege to have someone trust you with their health, especially if they’re seriously ill. In this context, the term “patient” can reflect a physician’s respect for the person’s integrity, humanity and needs.

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A Reversal on End-of-Life Planning

The Obama administration will cut a new Medicare provision to compensate providers for discussing end-of-life care, according to the New York Times. This is an unfortunate reversal.

Too-often, doctors fail to have these discussions with their patients. This happens for many reasons including some physicians’ discomfort with the topic, their not wanting to diminish patients’ confidence in their healing powers, conflicts of interest (infusing chemotherapy is profitable; prescribing palliative home care is barely so, if at all) or simply being too busy to get around to the subject before a patient becomes critically ill and approaches death in an ICU setting. Most physicians need incentives to discuss palliative care options and end-of-life planning with patients in a thoughtful, not-rushed way.

The Medicare provision, which would have provided a small amount of compensation for doctors to spend time communicating with their patients about their preferences – whether they’d want to be kept alive on a ventilator with metastatic, refractory cancer, for example, or whether they’d want to be kept alive in a comatose state with a feeding tube for weeks or months or even years after suffering brain damage from low oxygen, might have helped some people get the kind of end-of-life care they’d choose, instead of what their doctors might give unthinkingly.

Again, I recommend that patients should be pro-active about their wishes. If your doctor doesn’t mention the topic, tell her what you want and document your wishes. Here’s a partial list of sites that provide related information on this subject:

Med­line­Plus on Advanced Direc­tives;

New York State: infor­ma­tion on Health Care Proxy forms and DNR orders

Medicare on Preparing for Your Future Health Care Needs

Fam­ily Care­giver Alliance on End-of-Life Choices

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A Patient’s Internal Conflict of Interest: to Mention a Symptom, or Not?

To complain or “be good” is an apparent dilemma for some patients with serious illness.

Yesterday I received an email from a close friend with advanced breast cancer. She’s got a lot of symptoms: her fatigue is so overwhelming she can’t do more than one activity each day. Yesterday, for example, she stayed home all day and did nothing because she was supposed to watch a hockey game in the evening with her teenage son and other family members. Her voice is weak, so much it’s hard to talk on the phone. She has difficulty writing, in the manual sense – meaning she can’t quite use her right arm and hand properly.

“It’s something I would never mention to the doctor because it is very subtle,” she wrote. “But it has not improved and if anything has worsened over time.”

There are more than a few possible medical explanations for why a person who’s receiving breast cancer therapy might not be able to use her right arm. But that’s not the point of today’s lesson. What’s noteworthy here is that the patient – an educated, thoughtful woman who’s in what should be the middle of her life and is trying as best she can to survive, doesn’t think these symptoms are worth mentioning.

Her doctor is an unusually caring and kind oncologist, not an intimidating sort. The problem here is the patient doesn’t want to bother her doctor with more details about how she’s been feeling, so it’s hard to fault the physician in this case. You might say in an ideal world the doctor or a nurse or someone would be screening each patient more fully, completely, asking them every question imaginable about every body part. Then again, what kind of patient would have time for all that at say, weekly treatments?  I don’t blame my friend, either, although I’ve encouraged her to speak up about her concerns.

As things stand, most data on medication toxicity is reported by physicians and not by patients directly, an information filtering system which may lessen our knowledge of drugs’ effects. This problem, formally considered a few months ago in a NEJM perspective – The Missing Voice of Patients in Drug-Safety Reporting, reflects some physicians’ tendencies to dismiss or minimize patients’ symptoms and, in the context of clinical trials, can have adverse consequences in terms of our understanding of treatment toxicities and, ultimately, clinical outcomes that might otherwise be improved.

Here’s a partial list of why some thoughtful, articulate patients might be reluctant to mention symptoms to their doctors:

1. Respect for the doctor – when the patient feels what he’s experiencing isn’t worth taking up a physician’s time, what I’d call the “time-worthy” problem;

2. Guilt – when a patient feels she shouldn’t complain about anything relatively minor, because she appreciates how lucky she is to be alive;

3. Worry – when a patient’s anxious or afraid the symptoms are a sign of the condition worsening, so she doesn’t mention them because she doesn’t want to hear about the possible explanations;

4. Apathy – when a patient stops caring about improving her circumstances during treatment, perhaps because she feels hopeless or that she’s doomed to experience unpleasant symptoms for the rest of her life;

5. Wanting to be perceived as “good” or “strong” – how can you complain about your handwriting if you want your physician (or spouse or lover or kids) to think you’re tough as nails?

I could go on with this list –

Why this matters is because many patients’ treatable symptoms go under-reported. And because if patients don’t tell their doctors what’s wrong, it’s unlikely their physicians will take note.

The purpose of medical care is to make people feel better. Patients, speak up!

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A Video About a Patient Who Might Have Too Much Information

A link to a video, the Too Informed Patient came my way several times lately. You can find the curious clip on NPR’s Marketplace site:

The Too Informed Patient from Marketplace on Vimeo.

The skit depicts the interaction between a young man with a rash and his older physician. The patient is an informed kind of guy – he’s checked his own medical record on the doctor’s website, read up on rashes in the Boston Globe, checked pix on WebMD, seen an episode of Gray’s Anatomy about a rash and, most inventively, checked i-Diagnose, a hypothetical app (I hope) that led him to the conclusion that he might have epidermal necrosis.

Not to worry, the patient informs Dr. Matthews, who meanwhile has been trying to examine him (“say aaahhh” and more), he’s eligible for an experimental protocol. After some back-and-forth in which the doctor, who’s been quite courteous until this point – calling the patient “Mr. Horcher,” for example and not admonishing the patient who’s got so many ideas of his own, the doctor says that the patient may be exacerbating the condition by scratching it, and questions the wisdom of taking an experimental treatment for a rash.

“I just need you to sign this paper,” says the patient.

The doctor-puppet pauses momentarily, seemingly resigned to a new role. After the patient leaves, the doctor thinks to weigh himself. The skit ends with the sounds of keyboard typing.

The piece supplies thought-provoking details in under 2½ minutes. It’s a useful teaching tool, among other things. There’s been some discussion about it on the NPR site, the Patient Empowered Blog, the Health Care Blog and elsewhere. Some comments suggest annoyance, that the “informed patient” is misrepresented here as exaggerated or foolish, or that the skit is off-mark.

To me it rings true, representing an older doctor who’s trying, open-mindedly but not at the cutting edge, to embrace new technology, and has the patient’s interests at heart. His efforts and his knowledge are set aside.

My reaction is sadness. Am I the only one?

Thanks to the team who created this insightful production: produced by Gregory Warner and Mara Zepeda. Created by Sebastienne Mundheim of White Box Theatre, acted by Charles DelMarcelle and Doug Greene, and voiced by two actors from Philadelphia’s Pig Iron Theatre Company, and to NPR’s Marketplace for presenting.

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Informed Consent on Paper, but Not in Reality

Over the long weekend I caught up on some reading. One article* stands out. It’s on informed consent, and the stunning disconnect between physicians’ and patients’ understanding of a procedure’s value.

The study, published in the Sept 7 Annals of Internal Medicine, used survey methods to evaluate 153 cardiology patients’ understanding of the potential benefit of percutaneous coronary intervention (PCI, or angioplasty). The investigators, at Baystate Medical Center in Massachusetts, compared patients’ responses to those of cardiologists who obtained consent and who performed the procedure. As outlined in the article’s introduction, PCI reduces heart attacks in patients with acute coronary syndrome – a more unstable situation than is chronic stable angina, in which case PCI relieves pain and improves quality of life but has no benefit in terms of recurrent myocardial infarction (MI) or survival.

The main result was that, after discussing the procedure with a cardiologist and signing the form, 88% of the patients, who almost all had chronic stable angina, believed that PCI would reduce their personal risk for having a heart attack. Only 17% of the cardiologists, who completed surveys about these particular patients and the potential benefit of PCI for patients facing similar scenarios, indicated that PCI would reduce the likelihood of MI.

This striking difference in patients’ and doctors’ perceptions is all the more significant because 96% of the patients “felt that they knew why they might undergo PCI, and more than half stated that they were actively involved in the decision-making.”

What we have, here, is a study of informed consent, set up in a way that the doctors knew the study was ongoing – because they and their patients were participating, all in one division of one hospital – and, presumably, spent if anything more time and not less than usual talking with patients and answering questions about the procedure. (Note: this particular point is an assumption on my part, supported by the reported fact that 83% of the patients reported that their questions had been answered.)

The central finding is a failure of communication between doctors and patients about the potential benefit of the procedure: 88% of the patients, who’d signed consent, thought that PCI would prevent heart attacks and only 17% of the cardiologists at the same medical center thought the same. This matters, first, because over a million people in the U.S. undergo angioplasty each year and, more broadly, because it represents an everyday outgrowth of the  phenomenon of therapeutic misconception – when patients think a procedure has a greater potential benefit than it does.

The concept of therapeutic misconception, as was initially defined narrowly in the context of clinical trials, applies to all areas of medicine. In cancer treatment it’s a big deal but, in my experience, under-addressed. A common misconception among breast cancer patients, for example, concerns the benefit of adjuvant chemotherapy, which generally reduces the odds of recurrence by about a third. So if you have a stage II tumor with good molecular features and the odds of recurrence are somewhere around 15%, that comes down to around 10% with the treatment, which does bear significant side effects and risks. Another fairly common misunderstanding in oncology is in the area of Phase I clinical trials, in which the drugs are tested for toxic effects in humans, and to see how much people can withstand, and not for therapeutic effect.

This topic is worthy of lots more discussion than I can afford here. I do recommend reading the full article, including the methods about how the survey was done, and the editorial* in the Annals, which accompanied the paper, which like so many other provocative and significant reports in the medical literature, didn’t get much attention in the lay press.

One point the editorial considers is that, perhaps, the PCI consent form used by the study authors and said to be at a 12th grade reading level, should instead be provided at an 8th grade level, as some institutions recommend and require. I’m not so sure about this, because I think a lot of medical ideas and decisions simply cannot be communicated at a lower level without loss of content, i.e. nuanced information.

I’m eager for readers’ views on this – how often is it that doctors effectively convey why a procedure should be done or a treatment be given, and what might be done to improve the process?

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Copiapó Dreaming – The Copper Miners’ Tale

This week it seemed at least half the world was captivated by the uplifting story of the Chilean miners. The 33 men – mainly middle-aged and of modest means – zoomed up in high-tech capsules from the deep, would-be tomb where they’d been waiting for 69 days underground in the southern Atacama, not far from the industrial, northern Chilean city of Copiapó.

The amazing and nearly-too-good-to-be true news is that a top-notch team of engineers, doctors including the NASA/Johnson Space Center Deputy Chief Medical Officer, nurses, psychologists and others pulled off this fantastic rescue by which each and every one of these real men were delivered to Camp Hope (Esperanza) a tent city swelling with media and enthusiastic politicians, clergy, miners’ families and, presumably, support staff – cooks, washers and others who helped people there cope with the situation.

It’s inconceivable that any human with a heart would not be gladdened upon learning of the miners’ safe arrival – all more-or-less in good shape, no less – on firm ground. A rabbi said this of the affair: we too-often take this world for granted; but after their ordeal in the darkness, the Chilean men kissed the earth and thanked god for simply returning them to what they’d had before – a place filled with sunlight, air, loved ones, friends, food, music and, well, everything they had and have again. So there’s a religious message here, if you’re open to that. At the same time, an atheist would see clear evidence in this fantastic episode for the power of humans and science, technology and coordinating resources.

The medical issues are rich, including: risk of fatigue and dehydration in an inescapable, 90 degree hot and humid environment; vitamin deficiency and possible eye damage upon exiting, from lack of sunlight; lung problems from metal dust exposure; infections like pneumonia, potentially shared in a small communal space or gut-related, if hygiene is poor and human waste is not stashed properly; emotional downers – like fear and depression – may affect men who don’t articulate those sorts of concerns.

Some environmentally-minded thinkers point out that this true tale isn’t representative, reducing the story like this: “For every miner who was rescued before the cameras this week, more than 400 others will die this year.” Indeed, the International Federation of Chemical, Energy, Mine and General Workers’ Unions, estimates that worldwide, approximately 12,000 miners will lose their lives this year, while on the job. They’re right, I know – mining is a risky, under-regulated occupation.

Nonetheless, I’m thrilled by this remarkable story, at two levels: first, that the “patients” are all right, and second – what’s even more awesome – is that people around the world cared so much about the miners’ well-being. I’ve been wondering what if the outcome hadn’t been so successful. The news coverage would have been less intense, and the President of Chile would have had more difficulty maintaining his political position, and maybe there’d be more regulation of copper-mining in the future. Still, it would have been OK, good and maybe great, I think – even without the happy ending – that the engineers and international top-docs with their expertise, and miners’ families and lovers’ with their food and good cheer, did everything they could.

The outcome matters, but so does the effort, in itself. If we don’t as much as offer care to humans who need it, there’s little chance they’ll get better. This news is about health care, delivered. So the next, logical question is this: Can we take this up to another level by providing high-quality, coordinated care to every group of 33 patients with a guarded prognosis, and do whatever it takes to make them well using existent technology and medicines? This story is a fantasy, as much as it’s real.

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It’s Not About the Money

A recent NEJM article, Lessons from the Mammography Wars, opens with a quote from the 18th Century philosopher-economist Adam Smith:

People of the same trade seldom meet together . . . [without] the conversation end[ing] in a conspiracy against the public.

The Wealth of Nations (1776)

The opinion piece, published on Sept. 8, considers the controversy that surrounded last year’s U.S. Preventive Service Task Force recommendations for screening mammography in the context of broader issues. It contains some serious accusations:

“Advocates of breast-cancer screening, particularly breast radiologists, immediately took action, denouncing the panel’s statements as government rationing, suggesting that the panel members had ignored the medical evidence…

Ultimately, what’s incriminated is the self-interest of doctors:

“…Although it is true that individual medical providers care deeply about their patients, the guild of health care professionals — including their specialty societies — has a primary responsibility to promote its members’ interests. Now, self-interest is not in itself a bad thing; indeed, it is a force for productivity and efficiency in a well-functioning market. But it is a fool’s dream to expect the guild…to compete on true value when the opportunity to inflate perceived value is readily available.

OK, readers, so how do I recommend we resolve this thorny issue?

Physicians should be on salaries, set in such a way that their earnings aren’t based on the procedures they order or perform. For example, I don’t think a surgeon should earn more money if he or she performs a greater number of biopsies or mastectomies, as opposed to spending time examining and speaking with patients who are contemplating those procedures. I don’t think an oncologist should earn more money by ordering or administering more infusions of chemotherapy, as opposed to recommending a “wait and watch” type approach, palliative care, or giving pills that are effective in some malignancies.

If physicians’ potential profit motive clouds the mammography debate, as the authors contend, that doesn’t mean that mammography is ineffective. Rather it signifies that doctors and scientists should analyze data and make clinical decisions in the absence of financial or other conflicts of interest.

If patients could know that their doctors don’t have a vested interest in mammograms, or any other test or procedure they might prescribe, they’d trust them more. It’s for this reason, above all, that we should disconnect doctors’ decisions from economic gain.

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News, and Thoughts, on Comparative Effectiveness Research

Last week the U.S. Government Accountability Office (GAO) appointed several new members to the board of the Patient-Centered Outcomes Research Institute (PCORI). This group will oversee the application of comparative effectiveness research in health care reform. The panel’s composition was the subject of two posts today by Merrill Goozner, a long-standing observer of health care economics and journalist.

The group may play a key role in forming health care policy in the years ahead. According to the Patient Protection and Affordable Care Act, signed into law in March of this year, the PCORI is slated as a private, non-profit agency. The Institute’s purpose is:

to assist patients, clinicians, purchasers, and policy-makers in making informed health decisions by advancing the quality and relevance of evidence concerning the manner in which diseases, disorders, and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed through research and evidence synthesis that considers variations in patient subpopulations, and the dissemination of research findings with respect to the relative health outcomes, clinical effectiveness, and appropriateness of the medical treatments, services, …”

This is no small task, to say the least.

What is comparative effectiveness research and why does it matter? The idea, basically, is to inform medical decisions with relevant data derived from well-designed clinical trials. This sort of research will provide the foundation for evidence-based medicine (EBM).

Some casual readers of this blog may not appreciate the extent to which I support these endeavors. I do, 100 percent. I say this for several reasons:

First, as a patient: We need to obtain as much information as possible on the best way to treat common and rare medical conditions that arise in humans. Knowing which treatments work, and don’t, ultimately will promote care that’s effective and diminish use of procedures, devices and medications that are ineffective and/or harmful.

Second, as a citizen: We don’t have a surplus of health-care resources to throw around, so to speak, in vain efforts to treat things that can’t be fixed.

As an oncologist, I was not one to give treatments that I didn’t believe would help a patient to feel better and, ideally, get well. Rather, I think the value of chemotherapy and other treatments needs be demonstrated in clinical trials prior to their routine administration, or that their worth be measured otherwise – such as by careful testing of how a drug might work in a subset of patients or even in a particular patient who has a condition like breast cancer and, upon careful monitoring, it is apparent that nothing helps except Avastin in her case.

Third, as a doctor: I would never want to cause avoidable harm to a patient. If a drug, device or procedure is ineffective or damaging, we shouldn’t often prescribe that, if ever. The best way to help patients get well, and harm them less, is by knowing what works and what doesn’t in most cases and by knowing the limitations of aggregated, statistically-valid data applied to individual patients.

Cost analyses are needed, too, but that’s a somewhat separate issue.

I wish the panel good luck in their important work ahead.

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Why Physicians Shouldn’t Tweet About Their Patients Or O.R. Cases

I fear this post may be a bit of a downer for some e-health enthusiasts, Internet addicts and others who might otherwise follow @medicallessons, but after nine months of “studying” medicine on Twitter, I’ve reached the conclusion that it’s probably not a good idea for most practicing physicians to use 140 character Web-broadcasted messages for communicating with or about their patients.

Sorry if I’m ruining a tweetchat, tweetup or doctors’ virtual party somewhere. I just don’t think these belong in the doctor’s office or, especially, in the O.R.

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Marilyn and Me (on Privacy)

My thoughts on the sale of a legend’s medical films, on HuffPo:

The X-rays of Others

(Yes, it’s a reference to the movie.)

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On People Who Receive Care From Physicians

This week’s medical blog Grand Rounds will focus on posts having to do with “customer service” in health care. A problematic concept, it seems to me.

As a physician I never considered my patients as buyers or consumers. People came to me as their doctor, or I visited them in the hospital, and I thought my job was to identify if something was wrong and, if so, to identify the exact nature of the problem and then take care of the person as best I could. I didn’t contemplate the situation with a business mind-set.

As a patient I don’t think in shopping terms when I visit my doctors or my physical therapist, although I do sometimes pay significant bills. Even for lab services, such as at Quest Diagnostics, I don’t feel as if I’m making a purchase. Sure, I’m annoyed when there’s a long wait or my results are inexplicably delayed. And I sometimes prefer one technician to another. I might mind the costs, and if there’s an error in my bill I’ll challenge that. Still, I don’t perceive myself as a health care customer.

In medical journals a patient typically is called a person, an individual, a subject in a clinical trial or (unfortunately) a case. But in some blogs and other sources I’ve been reading lately, most often having to do with health care delivery or IT, consumers pop up constantly. A good example occurs in a recent article in the journal Health Affairs, “Evidence That Consumers Are Skeptical About Evidence-Based Health Care.” This study generated a small brouhaha (in my opinion undeserved) about the public’s alleged blind faith in their personal physicians’ advice.

In reviewing that story, what most surprised me most about the paper was not so much the study’s findings (limited) or sponsorship (by the National Business Group on Health), but its language. The term “consumer” or “consumers” appears in the article’s title, no fewer than 5 times in the 125-word abstract and a noteworthy 39 times in the main paper excluding captions, tables, and references.

My point, which is really a question, is whether people who seek out or need health care should be referred to as consumers or customers. My gut feeling is that neither term is appropriate. But then again, I don’t believe that medicine can be or should be run as a business. Here’s why:

If physicians are in a position that they might be influenced by a profit motive, they’re less likely to make decisions based in evidence and are more likely to make recommendations that include income-generating procedures and treatments.

If people receive medical care from physicians who might generate greater income by recommending particular treatments, procedures or referrals, they may not receive the most appropriate care. What’s more, they are less likely to trust that their physicians are providing sound advice. The upshot is that when expensive medical care is needed – say, for the sake of this discussion, in the case of a young person with a curable leukemia – some individuals may be less trusting of physicians if they think they are motivated by money and may decline helpful and even life-saving treatments. So the profit motive, or even the appearance of a possible profit motive, has the potential to lessen the patient-doctor relationship and undermine good care.

What’s worse, though, and even more off-putting, is that in a financial transaction for medical care – in which a person with or without an illness is referred to as a “consumer” in a business called the health care industry – what’s really happening is that the illness, and maybe even the patient who has an illness, is rendered a commodity.

Ultimately this is the greatest downside of medicine as a business. No. I don’t think patients should be considered as customers or clients by any other name.

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You’re Sick and I’m Not, Too Bad

“The insurance market as it works today basically slices and dices the population. It says, well you people with medical conditions, over here, and you people without them, over here…

– Jonathan Cohn, Editor of The New Republic, speaking on The Brian Lehrer Show, February 16, 2010*

There’s a popular, partly true, sometimes useful and very dangerous notion that we can control our health. Maybe even fend off cancer.

I like the idea that we can make smart choices, eat sensible amounts of whole foods and not the wrong foods, exercise, not smoke, maintain balance (whatever that means in 2010) and in doing so, be responsible for our health. Check, plus.

It’s an attractive concept, really, that we can determine our medical circumstances by informed decisions and a vital lifestyle. It appeals to the well – that we’re OK, on the other side, doing something right.

There is order in the world. God exists. etc.

Very appealing. There’s utility in this outlook, besides. To the extent that we can influence our well-being and lessen the likelihood of some diseases, of course we can!  and should adjust our lack-of-dieting, drinking, smoking, arms firing, boxing and whatever else damaging it is that we do to ourselves.

I’m all for people adjusting their behavior and knowing they’re accountable for the consequences. And I’m not keen on a victim’s mentality for those who are ill.

So far so good –

Last summer former Whole Foods CEO John Mackey offered an unsympathetic op-ed in The Wall Street Journal on the subject of health care reform. He provides the “correct” i.e. unedited version in the CEO’s blog:

“Many promoters of health care reform believe that people have an intrinsic ethical right to health care… While all of us can empathize with those who are sick, how can we say that all people have any more of an intrinsic right to health care than they have an intrinsic right to food, clothing, owning their own homes, a car or a personal computer? …

“Rather than increase governmental spending and control, what we need to do is address the root causes of disease and poor health.  This begins with the realization that every American adult is responsible for their own health.  Unfortunately many of our health care problems are self-inflicted…

Now, here’s the rub. While all of us can empathize, not everyone does. And few citizens go to medical school. Some, uneducated or misinformed, might sincerely believe that illnesses are deserved.

So let’s set some facts straight on real illness and would-be uninsurable people like me:

Most people who are sick – with leukemia, diabetes, osteogenesis imperfecta, heart disease, multiple sclerosis, scoliosis, glycogen storage disease Type II, depression, Lou Gehrig’s disease, sickle cell anemia, rheumatoid arthritis or what have you – are not ill by choice. They didn’t make bad decisions or do anything worse, on average, than people who are healthy.

Rather, they became ill. Just like that.

The idea of an insurance pool is that when everyone in the community participates, whoever ends up with large medical expenses is covered, explained Jonathan Cohn. When contributions come in from all, including those who are healthy, funds are sufficient to provide for the sick among us.

As things stand, the insurance industry divides us into likely profitable and unprofitable segments. “So you know if you’re one of the people born with diabetes, you have cancer, you had an injury that requires lengthy rehabilitation, tough luck, you’re going to end up in that pool of unhealthy people,” Cohn said.

Insurance is no cure-all, to be sure. It won’t take away my cousin’s cancer or fix Bill Clinton’s heart. That would require research and better medicines.

Depriving insurance, or care, to those who need it most is inconceivable to a society as ours was intended. It’s uncivil.

*as heard on The Brian Lehrer Show 2/16/10: Rates on the Rise

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Health Care Costs, Communication and Informed Choices

For those of you who’ve been asleep for the past year: the health care costs conundrum remains unsolved. Our annual medical bills run in the neighborhood of $2.4 trillion and that number’s heading up. Reform, even in its watered-down, reddened form, has stalled.

Despite so much unending review of medical expenses – attributed variously to an unfit, aging population, expensive new cancer drugs, innovative procedures, insurance companies and big Pharma – there’s been surprisingly little consideration for patients’ preferences. What’s missing is a solid discussion of the type and extent of treatments people would want if they were sufficiently informed of their medical options and circumstances.

Maybe, if doctors would ask their adult patients how much care they really want, the price of health care would go down. That’s because many patients would choose less, at least in the way of technology, than their doctors prescribe. And more care.

What I’m talking about is the opposite of rationing. It’s about choosing.

Several recent stories have considered the problem of physicians not talking with their patients about treatment limits. Last month the journal Cancer published a study, based on canvassing over 4000 doctors who care for cancer patients in California, North Carolina, Iowa and Alabama, revealing that only a minority of physicians would raise the subject of a DNR order or hospice care for patients with metastatic cancer and a short life expectancy.

When it comes to recommending palliative care, aimed at patients’ nutrition and comfort, rather than cure, some doctors remain tight-lipped. Many good physicians, including cancer specialists, are reluctant to stop prescribing chemotherapy and aggressive treatments. The reasons vary. Based on my experience as a practicing oncologist, I’ll list a few:

Some doctors think it’s better for their patients if they are upbeat, and this may indeed be true. Conversely, many patients choose doctors who are optimistic: if you tell patients there are no treatment options, they’ll go elsewhere. Most patients, of course, do want treatment; more than a few are desperate enough to try anything a doctor says might work.

Another, unfortunate factor is financial pressure; giving treatment and doing procedures is far more lucrative than simple exam and discussion-based visits. I’m afraid, too, that many physicians don’t recognize the extent they’re influenced by effective marketing, usually blatant but sometimes subtle.

For others it’s an ego thing – doctors try to “outsmart” a disease, even when it’s not feasible, trying one therapy and the next, to no avail.

Harder to assess, still, is doctors’ internal unwillingness to give up on some patients because they care about them so much. Some excellent doctors may become so invested in a case that they, themselves, cannot be objective.

Besides, “throwing in the towel” is not something most good doctors like to do. And it’s not something most patients want to hear about.

Yet, maybe some dying patients would appreciate a doctor’s honesty –

These issues relate directly to the practice of oncology, the area of medicine I know best. But similar hesitations and conflicts of interest arise among doctors in most fields – cardiologists caring for people with severe heart disease, neurologists caring for people with end-stage Parkinson’s, and infectious disease experts caring for people with late-stage HIV, to name a few.

If doctors could somehow find the time, and take the trouble, to talk with their patients in a meaningful way, and then heed their patients’ wishes, they might find that many patients would, of their own volition, put a brake on health care spending.

For this reason, among the changes in health care I most favor is greater support for primary care and non-procedural services. If  were paid more for thinking and communicating, rather than ordering tests and performing treatments in a perfunctory manner, they and their patients might opt for less expensive, more humane remedies.

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