On Patient Empowerment and Autonomy

Yesterday a Tweet crossed my screen that got me thinking. The source of was Gilles Frydman, founder of ACOR (Association of Cancer Online Resources) and a pioneer in the e-patient community:

@gfry: Participatory Medicine evangelists say “Engaged, empowered patients are better, healthier patients.” Where is the evidence?

What makes this question so ripe, in my oncologist-patient-teacher-blogger’s way of thinking, is that we may never, even if formal studies do provide data on this issue 10 years ahead, reach an objective conclusion on this matter.

The problem is this: To prove that empowered patients are “better and healthier,” how would we design a trial? If we were to compare those engaged – who almost by definition are more educated or at least have Internet access, or who are one way or another are linked to people who can help them find needed information – they’d likely do better than the disconnected patients. But the outcome might be a function of confounding variables: their education, economic status, on-line connectivity, etc.

I think the answer is inherent in the goal of being engaged, and this has to do with the concept of patient autonomy – what’s essentially the capacity of a person to live and make decisions according to one’s own set of knowledge, goals and values.

Autonomy in medicine, which borders on the empowerment idea, can be an aim in itself, and therefore valuable regardless of any measured outcome. For autonomy, or patient empowerment, to be meaningful and maybe even “better” in the strictly medical sense, as measured by outcomes like survival or quality of life, there needs be stronger public education in the U.S. and everywhere.

You can read all you want on stem cells, gene therapy or rare forms of chronic leukemia that are driven by a turned-on oncogene, but if you don’t know the basics of science and math, or don’t have sufficient language skills to read and absorb new knowledge or at least ask pertinent questions, it’s easy to get lost in that information, overwhelmed or – worse – suckered by those who’d try to persuade you of something that’s not true, cloaked in pseudoscience, that’s abundant and available on-line and, occasionally, in some doctors’ offices.

This is why public education matters, so much.

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Eye Care

On Friday I had a slightly, subtly dehumanizing experience at the eye doctor. It’s no big deal, really, almost not worth mentioning –

It was an entirely ordinary set of events that triggered this near-rant from this determinately positive blogger. But maybe the commonality of it – the blandness of what happened when I visited the doctor the other day – typifies what’s as a tragedy in modern health care: the loss of caring.

eyeglasses on a table (Wikimedia Commons)

How it went was like this:

That morning I raced (or, rather, walked quickly – but dangerously quickly for a woman with poor balance and limited gait) to catch the bus to take the train to reach the optometrist’s office on time. And I did.

The office was crowded but not full. A receptionist sat behind a partly glass-enclosed counter with desks, fax machines and filing cabinets and other workers.

“Name, please” she asked me.

I told the woman my name.

She nodded. “Take a seat, someone will be right with you.”

I waited just over half an hour, during which time I had the opportunity to look around and listen.  A man, who said he’d undergone Lasik surgery the day prior was “seeing great” as he chatted enthusiastically with a couple to my left, one half of which was contemplating the procedure.

“It’s a miracle,” he said. “I’m having each done separately, one at a time.”

After a while I returned to the receptionist’s window and noticed a sign having to do with Botox injections and information on a doctor who might provide those.

My mind wandered… I never knew that eye doctors do Botox. Then again, maybe they don’t…Perhaps this office maintains a reciprocal relationship with an office that provides those, where the staff posts notices about Lasik surgery. Either way, the sign is nothing more than a business strategy, which is fair enough if you believe that health care can or should be run as a money-making enterprise. (I don’t.)

Back to my optometrist, who was running late (OK, usually forgivable, human):

How I first met this capable woman was through the long-ago care of my semi-retired ophthalmologist, a medical doctor (MD) who provided start-to-finish eye examinations and might, if you ever needed it, perform eye surgery. I trusted him and always felt good about visiting his office.

Some time ago he expanded his practice, taking in some less-established doctors and optometrists. The idea, I imagine, was to have a doctor of optometry (DO) carefully perform the initial eye exams, patiently fit vision-impaired people with just the right prescriptions for their lenses and, finally, refer any questions or concerns to the ophthalmologist in the same office. In this sort of setting, he could spend more of his time helping, and doing procedures, for patients with serious eye problems like glaucoma.

I was happy with the system for most of 10 years. I genuinely liked the optometrist, and still do – she did a terrific job evaluating my vision and optimizing my lenses. Around the time I had breast cancer, bald and walking with a needed cane, she looked into my eyes with extra care. She was sympathetic and spent an unusual amount of time making sure that my glasses would be all right, if nothing else.

The problem – what I’d diagnose as a change in the practice’s character – manifest a few years ago after the group moved to a new office space where there seems to be a lot more traffic. The carpeting on the floors, once fresh-appearing, is no longer. The waiting area, formerly quiet, has a TV broadcasting CNN. But I don’t care much about the floors or media selection.

What bugs me is that the office has expanded and become so systematized that when I go there I don’t feel like I’m visiting a doctor, the kind of professional who sincerely cares about my health. Instead I feel like a commodity, which I suppose I am.

Back to the visit:

As has happened before, a technician called my name  and asked me to come with him, so I did. He was young and unfamiliar. He told me his first name and, without further explanation, indicated where I should sit while he used a machine to take pictures of each retina, the light-receiving membranous surface at the back of the eyes. Next, he asked me to follow him into a small room where he proceeded to open my chart and question me, sketchily, about my recent medical history.

I wasn’t thrilled about sharing, but went along up until a point. Then, when he began to perform my eye evaluation – the exact sort of work that the optometrist used to spend her time with me doing, I asked him what was going on. Where was she?

“She doesn’t do this part any more. It’s been like that for a while. Now please, can you read the letters in the first row…”

So now the optometrist, who had for years assisted the ophthalmologist, has an assistant who would evaluate my vision instead. This saddened me, first and selfishly because I’d spent the better part of my morning going to see her so that she could check my eyes and write another ideal prescription I could rely on, and now I couldn’t count on that small part of my health care going smoothly ever again.

What’s more – and the bigger picture – is that she no longer has time for me and my eye glasses. I see this simultaneously as good and bad:

Good – I suppose, because we don’t really need people with MDs, and probably not even with DOs, for routine examinations and procedures that could be handled by someone with less training and who is, therefore, less valuable in our limited health care system.

Bad – It happens that the particular technician who started to check my eyesight did a poor job until I stopped him at that. The machine he used to project letters into a mirror shook so much that the small blurry letters in the lowest row wobbled clearly.

More generally – it’s bad because the time I once valued with my optometrist, as previously with the ophthalmologist, is gone. I guess it wasn’t sufficiently worthwhile for them to keep the relationship going as it was. No more annual, while they’re flipping the glass circles, questions like “how are your kids?” or “how’s your summer going” or a generous, once-credible “how are you feeling?”

My visit was almost reduced to a series of standard interactions with a technician of unknown credentials who I don’t expect to ever see again. I intercepted that, this time, but this scenario will surely recur, overwhelmingly, as health care delivery becomes more checklist-based and efficiency-minded.

—–

Some definitions – for those of you who aren’t completely confident in your knowledge of the distinctions among eye care specialists:

An ophthalmologist is a medical doctor (MD) who specializes in eye diseases and might perform eye surgery.

An optometrist is a professional who’s earned a doctor of optometry (DO). Usually this requires four years of post-graduate education that covers eye diseases, pharmacology, anatomy and more. Optometrists are trained, extensively, to examine the eyes, give prescriptions and perform certain procedures.

An optician is someone, typically a licensed professional, who helps people get the eye care they need and may prescribe eye glasses or contact lenses.

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The Physical Exam’s Value is Not Just Emotional

Lately there’s been some talk about the value of the physical examination. It’s my sense that this discussion was sparked by a lovely piece by Danielle Ofri published two weeks ago in the New York Times. In that, Dr. Ofri describes a patient’s visit in which, toward the end and almost as an afterthought, she pulled out her stethoscope and performed a physical exam in a perhaps cursory but essential, thoughtful manner.

Or is it so cursory? There’s little scientific evidence to support the physical exam in practicing medicine but, as she writes:

…Touch is inherently humanizing, and for a doctor-patient relationship to have meaning beyond that of a business interaction, there needs to be trust — on both ends. As has been proved in newborn nurseries, and intuited by most doctors, nurses and patients, one of the most basic ways to establish trust is to touch…

KevinMD picked up on the story, essentially echoing the idea in a post called “Touch Humanizes the Doctor-Patient Relationship.” In that, he considers that some doctors (including him, previously) dismiss the physical exam obsolete – “like staying with a horse and buggy when cars are rapidly becoming available.”

It happens I know something about physical exams. Early in my years as a junior faculty member at Cornell’s medical school, around 1994, I was assigned to teach physical examination to second-year students during each of two consecutive spring semesters. To prepare for teaching, I carefully reread my copy of Bates’ Guide to Physical Examination.

my old copy of Bates’ Guide to Physical Examination, on my desk now

Together, my students and I listened to normal and abnormal heart sounds. We looked in each others eyes with ophthalmoscopes. We visited some of my patients with lymphadenopathy (swollen glands), big livers and palpable spleens who were willing to let us learn from their pathological physical findings. We listened and described course and fine rales on some pneumatics’ lung exams, and checked arthritic joints for swan-like deformities characteristic of rheumatoid arthritis. We examined patients’ petechiae, purpura, ecchymoses and more, and discussed the differences among those findings and what they might signify. All of this we did without CT scans or echos.

I know also, as a patient, that physical examination can be life-saving. Once, when I was in the hospital as a child and had unexplained fevers after surgery, it seemed for a while that no one could figure out what was wrong. I was terrified. The surgical team consulted with an infectious disease specialist, who as I recall ordered a whole bunch of unpleasant tests, and then my dad – a physician – noticed that one of my legs was more swollen than the other. He realized, based on my physical exam, that I might have a blood clot. It turned out that he was right.

So I agree that the physical exam is humanizing. So much so that, later in my career when I routinely donned space suit-like gowns and masks on rounds for the leukemia and bone marrow transplant services, I became frustrated by those barriers, and by the very lack of touch which, I think, can help patients heal.

But what’s also true, in a practical and bottom-line sort of way, is that a good physical exam can help doctors figure out what’s wrong with patients. If physicians were more confident – better trained, and practiced – in their capacity to make diagnoses by physical exam, we could skip the costs and toxicity of countless x-rays, CT scans and other tests.

Recently I wrote a piece on medical education and going back to basics. The physical exam should be included, for sure.

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Doctors Not Using Email Like It’s 2010

There’s been a recent barrage of med-blog posts on the unhappy relationship between doctors and electronic communications. The first, a mainly reasonable rant by Dr. Wes* dated August 7, When The Doctor’s Always In, considers email in the context of unbounded pressure on physicians to avail themselves to their patients 24/7. That piece triggered at least two prompt reactions: Distractible Dr. Rob’s** essay on Why I Don’t Accept eMail From Patients and 33 Charts‘ Dr. V on The Boundaries of Physicians Availability.

Perhaps the most astonishing aspect of these three guys’ essays is that, in 2010, there’s still a question about whether doctors should use email to communicate with patients. It’s hard for me to imagine physicians – including bloggers – so disconnected. But many are.

Last year, I had the opportunity to speak with Professor Nathan Ensmenger, a historian of technology at the University of Pennsylvania who’s studied physicians’ use of the Internet and email. Physicians aren’t luddites,” he told me. “On the whole, they’re a computer-savvy group, among the first to use the Internet in research and for professional development.”

Ensmenger contrasted doctors’ hesitation to take on email with patients with their early espousal of the telephone, which facilitated their practices and care in the early 20th Century. Doctors might want to work on-line, he suggests, even out of self-interest: the asynchronous nature of email, by contrast to telephone calls, affords more flexibility and workload control. Published studies, including an early 2004 report in the British Medical Journal, cite evidence  that an overwhelming majority of patients would welcome the chance to communicate with doctors by email. Nonetheless, many medical providers refuse to email patients.

Here’s a partial list of reasons why some doctors are reluctant to get on board with this (1990s) program:

1. Physicians don’t get compensated for time spent emailing patients.

2. Any written communication with a patient, or about a patient, is a potential liability that might be used in a malpractice suit against them.

3. There might be a breach of patient’s privacy if the email is not sufficiently secure, encrypted, or is accidentally sent to the wrong person.

4. Email is a time sink, dragging physicians further down the slippery slope of doing more, undervalued work.

Each of these points has some merit, I admit. I am most persuaded by Dr. Wes:

…This is not a new trend. We saw a similar situation years ago with the advent of the digital beeper. Even the most basic of private bodily functions in the bathroom could be interrupted at a moment’s notice. The expectation that phone calls should be returned instantly grew from this – personal context be damned. Doctors were accepting of these intrusions, however; the feeling of being omni-present, omni-available, and omni-beneficent fit nicely with the Marcus Welby, MD psyche of the time…

So the problem is that doctors are human, i.e. we have limits. Which of course isn’t a problem, but a good thing. I don’t particularly care for robotic physicians.

I’m not sure how to resolve this, but here are my thoughts:

1. About the compensation issue – I think physicians should be salaried rather than paid per unit of work. Communication is an essential part of what physicians do, and so this type of task should be included in their designated workload – whether that’s part-time or full-time.

2. About liability – we need medical malpractice reform, sufficient such that physicians aren’t afraid to write messages to people who are their patients.

3. About privacy – this seems a relatively bogus excuse. Compared to faxing, email is far superior in regard to privacy. And, as many others considering this issue have pointed out, we’ve learned to trust internet-based communications for other critical matters such as bank accounts, credit cards, etc.

4. About physicians’ time – this is a critical issue that hits close to home. Unless the health care system evolves so that mature doctors can carry out expert, interesting and careful work with reasonable hours, few bright young people will choose careers in medicine, and more seasoned physicians will have to stop practicing to protect their own health and well-being. And then we’ll all lose out.

So I don’t think that physicians shouldn’t use email – they should. But the system needs adapt to the 21st Century.

*Westby G. Fisher, M.D. is a cardiologist who blogs as Dr. Wes;

**Robert Lamberts, M.D. is a primary care physician who blogs on Musings of a Distractible Mind;

***Bryan Vartabedian, M.D. is a pediatric gastroenterologist who supplies 33 Charts.

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What the Dermatologist Did Right

Kudos to my newest doctor, a dermatologist whom I met yesterday for evaluation of a small, benign-appearing mole I recently noted on my right leg. What she did right:

1. She saw me promptly, at the time of my scheduled appointment.

(Thank you, you seem to value my time, as I do yours.)

2. In her initial clipboard-bound paperwork, along with the usual forms about my history (always with insufficient space for my case and, unfortunately, still non-electronic) she asked not only for emergency contact information, a standard, but for the name and relationship of someone besides me – such as a family member or close friend – with whom she might discuss my condition, if I permitted.

(Thank you for asking this and really, I’d prefer that you not speak with my parents about my results. I’ll be turning 50 next month.)

3. In the same short set of greeting paperwork, she didn’t just ask for my phone numbers and other contact information. She took this to another level and asked if it’s OK to leave a message on my home’s answering machine.

(Thank you again, for asking. I have teenage sons and don’t particularly want them hearing about my appointments or biopsy results before I get the message.)

4. Her assistant walked me into a room and told me to stay dressed. “The doctor likes to talk to people with their clothes on, before they put on the gown,” she explained.

(This was really terrific, and I hadn’t even yet met the doctor!)

I wasn’t disappointed: when Dr. G. entered the room, she was professional, considerate and thorough. I got the feeling she works conscientiously and carefully. And that she cares.

——

I can’t help but reflect on what a difference these sorts of details can make in a patient’s experience. How many times had I been in an orthopedist’s office for the first time, or at a different dermatologist’s, pleading with a nurse or technician that I might keep my clothes on until I’ve met the doctor and we’ve spoken.

It’s inefficient, I suppose, for doctors to meet patients in a small exam room, to exit and then re-enter after they’ve changed into a gown. But it’s humiliating, I feel, for an adult woman or for any person to meet the physician, especially for the first time, when they’re not wearing clothes.

A dermatologist, or any doctor for that matter, can’t necessarily take away the condition you have, which may or may not be serious. They may not have an easy remedy. But if they treat you with courtesy and respect, that makes it easier to cope with any situation.

Fortunately the lesions Dr. G. removed are likely nothing more than benign moles with Greek-derived names. One was a bit vascular. The lesion bled once she snipped it off, and so I can’t swim for a few days until the wound heals. But otherwise I’m doing fine.

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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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Follow-up on the Harlem Heart Tests

Last month I examined the serious case of the overlooked heart tests at Harlem Hospital, as told initially in the New York Times. Since then, Times journalist Anemona Hartocollis has followed-up on the disorder at the medical center.

The problem is older and wider in scope than first indicated. Another 1,000 echocardiograms, beyond the first 4,000 told, went without review by a cardiologist.  The situation dates back to 2005, rather than 2007.  An additional 2,000 exams were reviewed by doctors who didn’t complete or sign reports on those studies, taking the total number of missing reports to the range of 7,000.

Concern persists that the errors arose due to administrative decisions and a shortage of cardiologists at the hospital. According to the paper:

…After the backlog was discovered, some doctors at Harlem Hospital said they had complained of understaffing to the administration but had been ignored. At one point, they said, the hospital was down to one cardiologist, who could not possibly review all of the echocardiograms.

Last week the hospital finished an internal investigation. Approximately 200 of the patients who had echocardiograms died before their tests were analyzed. According to the Times, a hospital spokeswoman stated that 14 patients received an incorrect diagnosis because the tests were mishandled.

Upon further contemplation, I’ve upped my lessons learned from 2 to 3:

1. For hospital administrators:

When doctors complain that they’re overworked, so much so they can’t meet their clinical responsibilities, don’t dismiss their concerns. A stressed system – with fewer clerks, escort workers, nurses, phlebotomists, aides and other workers – is a setup for rushed or frankly skipped work. These kinds of errors (delayed reports) might apply to how physicians interpret other kinds of complex medical tests including CT and MRI scans, pathology reports, bone marrow findings and other specialized evaluations.

Most physicians I know work long days, weekends and nights. Many work putting out one fire and then the next; it seems unlikely that this problem is isolated to a single department in one hospital. Rather, it’s a flag.

With so much new emphasis by law on restricting resident physicians’ hours, perhaps there’s insufficient attention to the workload of senior (“attending”) physicians. Their responsibilities should be limited, too, such that they can accomplish their work in a careful manner in a reasonable number of hours per week.

2. For doctors:

If neither you nor the patient has sufficient reason or even the inclination to check a test result, don’t order it. As I’ve suggested previously, we might save a lot (billions?) of dollars, besides precious medical resources – personnel, transport workers, clerks, machines and patients’ valuable time – which are limited whether we acknowledge that or not, by thinking more carefully about the tests we order.

This is not just about heart tests. I’m thinking of urine examinations, routine chest x-rays, nerve conduction studies, pulmonary function tests, swallowing tests, etc.

3. For patients:

What happened at Harlem Hospital is, among other things, a lapse in communication between patients and their physicians. The responsibility is shared. So if you don’t understand the reason for a test, ask for a better explanation. If you need a translator, ask for one. Ask for results. Be persistent.

Aspire to be pro-active, not passive in the health care system which, otherwise, may treat you like an object. “Own” yourself!

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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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A Routine Visit

Yesterday I visited my internist. I had no particular complaint. My back hurt no more than usual. The numbness in my left foot was neither better nor worse than it was last month. I wasn’t suffering from vertigo or abdominal pain. I went because I had an appointment to see her, nothing more.

Until just a few years ago, I rarely visited a doctor unless I was pregnant or sick. I called when there was a problem, and my doctor would see me in whatever unusual circumstances I was in. She checked on me when I was in the hospital, reviewing my labs and x-rays and whatever else there was to take in. When I had cancer, or needed pre-operative evaluations for surgery, she would check my heart and lungs and write a note as needed. Sometimes I went to her office for a flu shot.

The idea of an adult woman seeing the doctor for regular, what some might call “well,” care might seem strange or even wasteful. Some might consider it a luxury, which I suppose it is.

But I think some of the most informative doctors’ appointments are routine. That’s because there’s value in a doctor’s getting to know a patient when she’s not particularly ill, when she’s not in pain or terrified, when she’s feeling just as usual.

I’ve had the same primary care physician since 1987. She knows my habits, my fears and my quirks. She, as much as anyone, has a sense of how I’m doing – emotionally and physically. In some years, I’ve taken better care of myself than in others, and she’s very much aware of that. She examines me carefully and makes suggestions regarding diet, physical therapy and other everyday, non-urgent matters in my life that affect my health.

The best thing about having a doctor know me so well is a matter of trust. I rely on her not to solve what’s unsolvable, which of course no one can do, but to do the best she can to take care of me. If ever I’m very sick again, in a circumstance when I can’t make decisions for myself, I know she’ll act according to my interests. She’ll be able do so because she knows me, my usual self.

Having a doctor who knows you shouldn’t be a privilege. Really I wish it for everyone. It helps.

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Ten Ways to Better Our Health (Magazine Cover Style)

If patients knew more:

1. they’d understand more of what doctors say;

2. they’d ask better questions;

3. they’d be more autonomous;

4. they’d make better decisions (ones they’re comfortable with, long-term);

5. they’d spend less money on care they don’t want or need.

If doctors knew more:

1. they’d provide more effective treatments;

2. they’d waste less money;

3. they’d make people feel better;

4. they wouldn’t feel threatened by informed patients;

5. they’d garner more respect.

—-

Looking over this, I realize that doctors might be persuaded by the same list presented in the style of a PowerPoint presentation. Either way’s OK with me.

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9 + 1 Ways to Reduce Health Care Costs

Recently in the Times‘ “Patient Money” column, Lesley Alderman shared nine physicians’ views on how we might reduce our country’s health care mega-bill.

Here, I’ll review those comments, add my two cents to each, and then offer my suggestion (#10, last but not least)  regarding how I think we might reduce health medical costs in North America without compromising the quality of care doctors might provide.

The “answers” from the Times piece*:

1. Insure Catastrophes Only

I don’t see this as a solution, first because it would reduce insurance costs without reducing routine health care costs. This sort of system would discourage people from seeking preventive or routine care. And it might effectively punish those with non-catastrophic illnesses.

2. Change Malpractice Law

Yes, fear of malpractice triggers some extra medical testing, driving up costs, hassle and occasional risks. But I doubt the costs of malpractice fear-inspired medical testing amount to more than two percent of our health care budget, if that much.

This point is valid but is way over-emphasized by the AMA and others.

3. Counsel Nutrition

It’s hard to argue with your mom. (Eat your fruits and vegetables.)

This falls into the category of preventive care and better public education and is obviously a good idea. But given the anticipated physician shortage, I’m not sure we can afford for many doctors to spend a lot of time on this topic. Ultimately, this agenda may be best served by nutritionists who collaborate with physicians, schools, public health programs and other agencies.

4. Rely on Evidence…

I agree. But the evidence has to be fair, current and free of bias, including academic bias.

5. But Allow for Expertise

Yes.

6. Use ‘Integrative Medicine’

I’m open to acupuncture, herbs and other “alternative” remedies if people find them to be helpful, and even more so if there’s evidence to support their use. At the same time, I’m wary – there’s a huge amount for sale in this market.

As far as reducing health care costs, I doubt that more integrative medicine would be effective. I’m not persuaded by the evidence supporting hypnosis before surgery, as is mentioned in the Times piece. (And just in case it comes up, somewhere else  – I don’t think the purchase or use of candles has anything to do with health care in the absence of an electric black-out.)

7. Pay to Treat Child Obesity

Sure, someone should intervene to help heavy kids slim down before they become heavier adults. But it’s better to reduce obesity before it happens. (Back to the garden, suggestion #3, above).

8. Stop Over-treating

This huge idea, articulated by Dr. H. Gilbert Welch, is essential to reducing health care costs.

The problem is in establishing a consensus on what’s worth screening for, what’s worth treating, and what’s best left alone.

More on this later –

9. Restore the Humanity

“…There are doctors in training now who do not want to do a physical exam; they just want the lab tests and the echo-cardiogram on a heart patient, for example. But the laying on of hands is a powerful tool in establishing trust and in healing…”

The idea here, provided by Dr. Edward Hallowell, is that doctors order tests rather than knowing and examining their patients.

I couldn’t agree more completely.

*For the names of the physicians who were quoted in the New York Times, please check that column directly. (As I’ve excerpted from their comments, that were already condensed, I don’t think it appropriate to use their names out of context here.)

So, here’s my entry – if I’d been asked by the Times columnist what I think should be done to reduce health care costs, I’d say something like this:

(10) Think More, Do Less

For a swamped, chronically-running late physician (know a few?) it’s easy to order a standard set of tests (such as blood work, an electrocardiogram, a urine analysis and sometimes even a CT scan or MRI) before meeting a patient. So a doctor working in a hospital might wait for the labs before evaluating a patient in the emergency room. In an office, a consulting doctor might “lab” a person (yes, it’s been used as a verb) before thinking about the case.

Lately, patients are speaking up a bit in this regard, partly afraid of x-rays and partly afraid of the costs of so much testing. But, especially for hospitalized patients who are sometimes quite sick and may not be able to say no, or “doctor, do I really need that test?” most rely on their physicians to weigh the costs and potential benefits of what tests they order and treatments they prescribe. (This ties in with point #8, above.)

Stabs at efficiency like admission “order sets” for hospitalized patients can be useful in busy hospitals and may, indeed, render it less likely that a needed test is left out when blood is drawn. But for patients who are hospitalized for, say, two or three weeks at a time, with multiple tubes of blood removed each day, the tests add up. (Note:  some very sick patients do indeed need lots of blood tests, sometimes as often as every few hours.)

What I’m suggesting is that doctors shouldn’t order tests by default, in a routine sort of way. Excessive, daily blood work in hospitalized patients is just one example of this phenomenon. I’m aware of other, costlier examples.

Ultimately, what I think would help patients most, and would save lots of money, are smart and well-educated doctors who have the time to know their patients (#9, above) and think really hard. The more familiar a doctor is with a person and his or her disease, the more readily she’ll pick up on a change in the patient’s condition, and the more likely she’ll prescribe therapy that meshes with the patient’s values and that works, too. When a physician stays up-to-date, she’s more likely to establish a correct diagnosis and implement appropriate, effective treatment if needed.

So I think better medical education should be added to the list, along with greater compensation for physicians’ time in terms or thinking, reading and communicating with their patients.

minor rev 4/7/10, ES

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A Small Study Offers Insight On Breast Cancer Patients’ Capacity and Eagerness to Participate in Medical Decisions

Last week the journal Cancer published a small but noteworthy report on women’s experiences with a relatively new breast cancer decision tool called Oncotype DX. This lab-based technology, which has not received FDA approval, takes a piece of a woman’s tumor and, by measuring expression of 21 genes within, estimates the likelihood, or risk, that her tumor will recur.

As things stand, women who receive a breast cancer diagnosis face difficult decisions regarding the extent of surgery they should undergo (see the New York Timesarticle of last week, with over 200 people weighing in on this ultra-sensitive matter). Once the surgeon has removed the tumor, choices about chemotherapy, hormone modifiers, radiation and other possible treatments challenge even the most informed patients among us.

Oncotype DX and similar techniques, like the FDA-approved Mammaprint, provide a more detailed molecular profile of a malignancy than what’s provided by conventional pathology labs. For women who have early-stage (non-metastatic), estrogen-receptor positive (ER+) breast cancer, this test provides risk-assessment that’s personalized, based on gene expression in the individual’s tumor.

Oncotype DX has been commercially available since 2004. The test “reads” three levels of risk for breast cancer recurrence at 10 years: “low” if the predicted recurrence rate is 11% or less, “intermediate” if the estimated rate falls between 12% and 21%, and high if the risk for recurrence is greater than 21%.

The investigators, based at the University of North Carolina, Chapel Hill, identified women eligible for the study who had an ER+, Stage I or II breast cancer removed and tested with the Oncotype Dx tool between 2004 and 2009. The researchers sent surveys to 104 women, of whom 78 completed the questionnaires and 77 could be evaluated for the study. They distributed the surveys between December, 2008 and May, 2009.

Several factors limit the study results including the small number of participants and  that the women were treated at just one medical center (where the oncologists were, presumably, familiar with Oncotype Dx). The patients were predominantly Caucasian, the majority had a college degree and most were financially secure (over 60% had a household income of greater than $60,000). Nonetheless, the report is interesting and, if confirmed by additional and larger studies involving other complex test results  in cancer treatment decisions, has potentially broad implications for communication between cancer patients and their oncologists.

Some highlights of the findings:

1. The overwhelming majority of women (97% of the survey respondents) recalled receiving information about the Oncotype Dx test from their oncologists. Two-thirds (67%) of those women reported they “understood a large amount or all” of what the doctors told them about their recurrence risk based on the test results.

2. Nearly all of the respondents (96%) said they would undergo the test if they had to decide again, and 95% would recommend the test to other women in the same situation.

3. Over three-quarters, 76% “found the test useful” because it determined whether there was a high chance their cancer would come back.

4. The majority of respondents (71%) accurately recalled their recurrence risk, indicating a number within 4% of that indicated by their personal test results.

Taken together, these findings support that a majority of women with breast cancer whose oncologists shared with them these genomic testing results, and who filled out the surveys, had good or excellent recall of the Oncotype Dx reports and felt that the test was helpful.

As an aside, the women were asked to rate their preferences regarding their personal input in medical decisions. Among the 77 respondents, 38% indicated they prefer to have an active role in medical decisions (meaning that they prefer to make their own decisions regardless of the doctor’s opinion or after “seriously considering” the doctor’s opinion) and 49% indicated they like a shared role, together with their doctors, in medical decisions. Only 13% of the women said they “prefer to leave the decision to <the> doctor.”

What’s striking is that among these women with early-stage breast cancer, 85% said they like to be involved in medical decisions. And 96% said they’d undergo the test again. Most of the women, despite imperfect if not frankly limited numeracy and literacy (as detailed in the publication) felt they understood the gist of what their doctors had told them, and indeed correctly answered questions about the likelihood of their tumor’s recurrence.

The results are encouraging, overall, about women’s eagerness to participate in medical decisions, and their capacity to benefit from information derived from complex, molecular tests.

*The capacity of Oncotype Dx to accurately assess the risk of breast cancer recurrence has been evaluated in previous, published studies including a 2004 publication in The New England Journal of Medicine and a 2006 paper in the Journal of Clinical Oncology. The test is manufactured, run and marketed by Genomic Health, based in Redwood City, California.

The National Cancer Institute lists an ongoing trial for women with hormone receptor-positive, node-positive breast cancer that includes evaluation with the Oncotype Dx tool.

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Henrietta’s Cells Speak

“One of the ways that I gained the trust of the family is that I gave them information.”

(R. Skloot, a journalist, speaking about her interactions with Henrietta Lacks’ family, Columbia University, Feb 2, 2010)

This week I had the opportunity to hear a terrific talk by Rebecca Skloot, author of a new, flying-off-the-shelves book –The Immortal Life of Henrietta Lacks.

Mrs. Henrietta Lacks died of metastatic cervical cancer in the colored ward at Johns Hopkins Hospital in Baltimore, MD in September 1951. She lived no more than 31 years and left behind a husband, five children and an infinite supply of self-replicating cancer cells for research scientists to study in years to come.

HeLa cells with fluorescent nuclear stain (Wikimedia Commons)

Like many doctors, I first encountered HeLa cells in a research laboratory. Investigators use these famous cells to study how cancer cells grow, divide and respond to treatments. I learned about Mrs. Lacks, patient and mother, just the other day.

Skloot chronicles her short life in fascinating detail. She contrasts the long-lasting fate and productivity of her cells with that of the woman who bore them. She connects those, and her human descendants’ unfortunate financial disposition, to current controversies in bioethics.

In the years following their mother’s death, scientists repeatedly approached her husband and asked her young children for blood samples to check the genetic material, to see if their DNA matched that of cell batches, or clones, growing in research labs.

The issue is this: her husband had but a third-grade education. The children didn’t know what is a “cell,” “HLA-testing” or “clone.”

The family had essentially no idea what the doctors who’d taken, manipulated and cloned their mothers’ cells were talking about, Skloot recounts. They thought the doctors were testing them for cancer.

Years later, when they learned that their mother’s cells were bought, sold and used at research institutions throughout the world, they became angry and distrustful. The problem was essentially one of poor communication, she considered.

“Even a basic education in science would have helped,” Skloot said. “Patients, they want to be asked, and they want to be told what’s going on.”

Well said!

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Are Doctors Necessary?

Ten years ago, my colleagues and I squirmed in our swivel chairs when a few tech-savvy patients filed in bearing reams of articles they’d discovered, downloaded and printed for our perusal. Some of us accepted these informational “gifts” warily, half-curious about what was out there and half-loathing the prospect of more reading. Quite a few complained about the changing informational dynamic between patients and their physicians, threatened by a perceived and perhaps real loss of control.

How a decade can make a difference.

In 2000 the Pew Charitable Trusts initiated the “Internet & American Life Project” to explore how the Web affects families and communities in matters of daily life. Susannah Fox is an associate director of the Research Center project.

“It’s the ultimate information appliance” she says of the Internet. Now that it’s in most people’s homes, people use it as they choose.

And that’s quite often –

In 2008 over 140 million Americans, a majority of U.S. adults, looked for health information on-line, according to the Center’s 2009 report. Nearly 60 percent of those admit that a recent Internet search influenced a medical decision.

“Back in 2000, our data was used to prove the concept that people were going on-line to get heath care information,” she says. But that’s no longer the issue.

“With Facebook, MySpace and Twitter, there’s a new frontier” she states. “I think we’re at a new inflection point, and now is the time to have a very clear conversation on health care.

There’s been a significant shift on the physicians’ side, too.

“It’s become clear that increased communication and discussion can change care in a positive way” says Dr. Barron Lerner, a primary care physician and medical historian at Columbia University. His most recent book, When Illness Goes Public: Celebrity Patients and How We Look at Medicine, considers how ailments in the public realm can influence peoples’ perception of illness and inform their care choices.

“The Internet can be amazingly good to get people up and running” he considers. Lerner encourages his patients who have cancer to visit the National Cancer Institute (NCI) website.

“Why not go on, and explore,” he tells them. “Now as for how much they can absorb there, I don’t know,” he adds. “It’s a very hard website.”

Dr. Gretchen Berland is a primary care physician, videographer and former MacArthur Foundation fellow at the Yale University School of Medicine. She led an early study on the quality and accessibility of web-based medical information in that was published in the Journal of the American Medical Association in 2001.

“The Internet gives people a sense of control,” she says. “People use the Web to augment the information they’re given by their physicians, to look for a second opinion, and to search for clinical trials.”

But despite the wealth of information, and good quality of many sites, Berland sees limits in the Internet’s use, particularly for patients with complex, serious conditions like cancer. Even if online materials are comprehensive and accurate, they rely on people’s ability to find and understand them.

The Internet is not enough to help most people, she states.

Recently Berland searched on-line resources on behalf of a friend who had cancer surgery. When she looked at all the data, including material gleaned from some physician-oriented sites, there were gaps. “It wasn’t clear what he should do, despite how much information is out there.”

That’s the paradox of the Internet, she notes. “It’s hard to know what applies to a particular person’s unique and complex medical circumstances.

“One thing the Web doesn’t do is personalize the information,” she says. “That’s what physicians do.”

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How to Avoid Death in the ICU

Something I learned as a medical intern is that there are worse things than dying.

As I recall, it was sometime in April, 1988. I was putting a line in an old man with end-stage kidney disease, cancer (maybe), heart failure, bacteria in his blood and no consciousness. Prince was on the radio, loud, by his bedside. If you could call it that – the uncomfortable, curtained compartment didn’t seem like a good place for resting.

An attending physician, a smart guy I respected, approached me as I completed the procedure.

“It’s kind of like Dante’s seventh circle,” he noted.

Indeed. A clear, flexible tube drained greenish fluid from the man’s stomach through his nose. Gauze covered his eyes, just partially. His head, hands and feet swelled with fluid. A semi-opaque hard-plastic instrument linked the man’s trachea, through his paper-taped mouth, to a noisy breathing machine. His skin, barely covered by a stained hospital gown, was pale but blotchy from bleeding beneath. An arterial catheter inserted by his wrist, just where I might have taken his pulse had he been healthier. A fresh adhesive covered the cotton gauze and brownish anti-bacterial solution I’d placed over his lower right neck.

“Yeah,” I said as we walked out of the room to review another patient’s chart.

I wondered if the ICU staff would mind my changing the radio station, just in case the patient could hear but not tell us he preferred WQXR.

“There’s no way I would let this happen to me,” I remember thinking.

—–

This month, a report in the ACS journal Cancer indicates that most U.S. physicians don’t talk with their patients about end-of-life issues until death is imminent, if they do so at all.

The study, based on canvassing over 4000 doctors who care for cancer patients in California, North Carolina, Iowa and Alabama revealed that only a minority of physicians would raise the subject of a DNR (do not resuscitate) order or the possibility of hospice care for a patient with metastatic cancer with a life expectancy of 4-6 months. The article has generated considerable, appropriate attention in the press and for good reason – it bears on health care costs, patients’ rights, doctors’ communication and time constraints and a host of points relevant to the practice of medicine in 2010.

For purposes of this post, today, what I’ll say is this much:

Don’t wait for your doctor to talk to you about death and dying. Be proactive about your wishes and the kind of care you wish to receive, especially if you’re sick with a serious medical condition. Take the initiative – document your end-of-life preferences as best you can, according to the law of your state, and tell your physicians about any limits you’d like to set on the care you might receive.

It’s a conversation worth having, early.

——-

Here’s a very-partial list of resources for people who’d like to learn more about advance directives, living wills, DNR orders, hospice care and other end-of-life concerns:

MedlinePlus on Advanced Directives;

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

Family Caregiver Alliance on End-of-Life Choices

Hastings Center on End of Life Issues

American Hospice Foundation

Cisely Saunders Foundation

Hospice Foundation of America

The National Hospice and Palliative Care Organization

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Skyping Medicine

Yesterday, Dr. Pauline Chen reported in the New York Times on virtual visits, a little-used approach for providing care to patients hundreds or thousands of miles apart from their physicians.

Telemedicine depends on satellite technology and data transfer. It’s a theoretical and possibly real health benefit of the World Wide Web, that giant, not-new-anymore health resource that’s transforming medicine in more ways than we know.  Chen writes:

Telemedicine has the potential to improve quality of care by allowing clinicians in one “control center” to monitor, consult and even care for and perform procedures on patients in multiple locations. A rural primary care practitioner who sees a patient with a rare skin lesion, for example, can get expert consultation from a dermatologist at a center hundreds of miles away. A hospital unable to staff its intensive care unit with a single critical care specialist can have several experts monitoring their patients remotely 24 hours a day.

I’m reminded of three things:

First, my recent visit to my internist’s office on East 72nd Street, a short walk from my home. When I see my doctor she smiles warmly, shakes my hand firmly and examines me from head to toe. She takes my blood pressure with an old-fashioned sphygmomanometer, looks at my eyes and into my throat, applies a stethoscope to my scarred chest as she listens to my heart and lungs, and palpates – “feels” in doctorspeak – my lymph nodes, liver and spleen. All that along with a neurological exam; she sees how I stand, walk and balance my head over my torso.

Second, my husband’s conversation with his mom yesterday evening, via Skype, transmitted between his laptop in our living room and her computer in a Buenos Aires apartment.

Third, some history from the 1950s – on how early computer scientists envisioned the future of medicine. From my master’s thesis at Columbia University’s Graduate School of Journalism, on how the “How the Internet is Changing the Practice of Oncology”:

When Vladimir Kozmich Zworykin addressed the 1956 assembly on “Electrical Techniques in Medicine and Biology,” he marveled at the technological feats of computers, and envisioned how these new instruments might be applied in health care. Zworykin, an inventor of television …was privy to the newest developments in applied science.

…He’d seen closed-circuit “Telecolor Clinics” that transmitted the latest cancer research news to physicians in cities along the eastern Seaboard and Great Lakes Region. A color, television microscope linking monitors in Philadelphia, Washington and Baltimore enabled doctors in one city to identify cancer in another…

We’re back in the future! My take on telemedicine includes three components; each corresponds to one association above.

1. Telemedicine is not the same as real medicine. I like seeing my doctor in real life and am reassured by her true presence in the room.

Besides, a hands-on exam has some tangible benefits. A good doctor, who knows how breathing sounds should sound, confident in her examination skills, might skip an x-ray she’d otherwise order. A competent hematologist, skilled in palpating her patients’ lymph nodes, liver and spleen, could spare us the costs and risks of some CT scans and MRIs.

Of course, the doctor’s hands should be clean… (a topic unto itself)

2. Virtual visits might help. The reality of medicine requires innovation and compromise – making the best of a sometimes difficult situation.

As Pauline Chen points out in her column, there’s a shortage of doctors affecting some, particularly rural, parts of the U.S. Policy experts anticipate the problem won’t go away with current health care reform measures, and some business reports warn the situation will get worse. Telemedicine, while not ideal, might ameliorate this effect and make a positive difference in the health of people living far from major medical centers. The technology could, indeed, connect patients with specialists who would otherwise be out of reach.

3. The future of medicine will embrace some elements of telemedicine. We just need to fine-tune the process.

As I see it, Internet or satellite-directed medical examinations are most promising for image and data-centric fields like radiology and pathology. It’s telling that Pauline Chen’s first example pertains to dermatology (skin diseases). Sure, I think a far-away expert’s view of a skin lesion could be helpful – it might reassure some that a mole or a rash is nothing to worry about, or inform them that indeed, they should hop on a train to Memphis. For patients with benign-appearing lesions, telemedicine could save costs and time in travel and unnecessary appointments, besides biopsies.

But I’m wary of implementing this tool in primary care areas and interventional fields like surgery and obstetrics. The prospect of delivering babies upon real-time instruction by doctors in cities far away is not what I’m hoping for, at least not for my kids’ kids.

I guess we’ll have to wait and see.

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Why Medical Lessons?

One of the things I liked best about practicing medicine is that I was constantly learning.

Making rounds at seven in the morning on an oncology floor would be a chore if you didn’t get to examine and think and figure out what’s happening to a man with leukemia whose platelets are dangerously low, or whose lymphoma is responding to treatment but can’t take anymore medicine because of an intense, burn-like rash. You’d have to look stuff up, sort among clues and discuss the case with the team and other physicians.

And then you’d get to talk to the patients and their families. In the teaching hospital where I worked as a clinical oncologist, you’d encounter a mix of folks from my east side neighborhood, Russian and Chinese and Spanish-speaking immigrants with homes in all parts of New York City, and a spectrum of visitors from countries like Cambodia, Pakistan and Ecuador. Each case offered a window into another family’s values and concerns.

Being a patient is an entirely different sort of experience except that, like being a doctor, it involves learning about medicine, problem-solving and meeting all kinds of individuals.

As a child with scoliosis – a curved spine – I discovered early that some therapies don’t work as you might hope or expect. I wore a back brace for 4 years, 23 hours each day, and it didn’t do the job. Then, my parents took me to consult with most of a dozen male orthopedists. Their crassness, frankness and sometimes kindness impressed me. I realized that like any other humans – whether they’re dictators or shopkeepers – doctors vary in their personalities.

Today I recall one young doctor who helped me, a resident at the Hospital for Joint Diseases. He came by my room early in the evening of December 31, 1974 because I needed a new intravenous (IV) catheter. By then I’d been in the hospital for weeks after spine surgery; there was hardly a vein left for heparin, a blood-thinner. It turned out the resident came from a town on Long Island not far from where I lived. He spoke openly, about his experiences in high school, as he calmly and patiently patted down my arms and hands and legs and feet until he found a spot for the IV. He got the line in, and I got my medication.

Just before midnight, Dick Clark was on TV for a “New Year’s Rockin’ Eve.” The resident, whose name I don’t recall, came by to see how I was doing. He stayed for perhaps 15 minutes, for what seemed like no reason other than to keep me company. We counted the seconds and watched the ball drop on a small black-and-white TV suspended by a hinged-metal arm over my hospital bed.

He was compassionate, and that made me feel better. What a difference he, one essentially unnamable young physician, made in my experience of that New Year’s eve in the hospital, and in my life and work.

Today, December 31, I think of him as I navigate my path as a patient and as a doctor. I’m still learning about medicine, every day in each new year.

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Dinner with my Family

I come from a family of doctors. My dad is a retired physician. He’s a son of immigrants who attended med school on a scholarship. For decades he practiced internal medicine together with his younger brother, my closest uncle.  They cared for countless adults, gradually absorbing their patients’ spouses and siblings, children and grandchildren into their burgeoning practice.

Our dinners at home were punctuated by calls from the answering service about all sorts of emergencies. Every night at the end of the meal, my father would sit at the table sipping tea, returning patients’ calls to discuss their test results and concerns. Sitting in the next room, doing my homework, I heard about tumors, pain, headaches, heartburn and heart attacks. I learned about symptoms, blood tests and the concept of a differential diagnosis. You name it, pretty much any illness, and I might have answered a few questions. It was a bit like watching “House,” but on-stage, in my home.

Family gatherings centered on two things – food, and talk about medicine. We spoke of interesting cases (always nameless), challenging conditions and, even back then, the constraints of health care costs. My fiancé, now husband of over 20 years, couldn’t get over how debate over health care dominated our Rosh Hashanah and Thanksgiving feasts.

Now I’m getting to my point –

I grew up learning about medicine, and I understood the terms early on.  I’d been a patient, too, in and out of orthopedists’ offices and disfiguring braces in my adolescence, and then in the hospital with inexplicable fevers, blood clots and more.  All that, before becoming a physician, doing research and taking care of people facing the most serious of illnesses.

As a patient, I entered the doctor’s office armed with information. Seven years ago, when I learned I had breast cancer, I knew exactly what to do. The decisions, though difficult, were almost straightforward, buttressed by my knowledge and familiarity with the language of medicine.

Tomorrow, over dinner, I don’t want to talk about mammograms.  Or health care reform, or even the swine flu. But I do want to learn and exchange ideas.

People – patients and doctors both  – need to speak a common language. Just as at the dinner table, the conversation moves forward only if we keep our minds open, listen carefully and communicate with mutual respect.

Stay tuned!

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