Thoughts, on Getting My Photo Taken at a Medical Appointment

A funny thing happened at my doctor’s appointment on Friday. I checked in, and after confirming that my address and insurance hadn’t changed since last year, waited for approximately 10 minutes. A worker of some sort, likely a med-tech, called me to “take my vitals.”

She took my blood pressure with a cuff that made my germ-phobic self run for self-regulation, i.e. I stayed quiet and didn’t express my concern about the fact that it looked like it hadn’t been washed in years. I value this doctor among others in my care, and I didn’t want to complain about anything. Then the woman took my weight. And then she asked if she could take my picture, “for the hospital record.”

I couldn’t contain my wondering self. “What is the purpose of the picture?” I asked.

“It’s for the record,” she explained. “For security.”

I thought about it. My picture is pretty much public domain at this point in my life, a decision I made upon deciding not to blog anonymously. Besides, most everyone at the medical center used to know me, including the receptionists, janitors, cafeteria cashiers, nurses’ aides, social workers, deans, full professors, geneticists, fellows in surgery and old-time voluntary physicians, among others who work there. So why didn’t I want this unidentified woman who works in my oncologist’s office to take my picture?

It made me uncomfortable, and here’s the reason: My picture is a reminder that, without it, I might be like any other patient in the system. They (administrators?, nurses, other docs, maybe even my future doctors) will need or want the picture to recall and be certain who Elaine Schattner is.

Don’t get me wrong. I agreed to the photo after all of maybe 20 seconds deliberating. (And my doctor was, I soon learned, duly informed I’d “had an issue” with it. Was that for just asking the reason?) The unidentified med-tech person used an oddly small, ordinary pink camera to complete her task.

When I met with my doctor, she explained that the photo is for security and, essentially, to reduce the likelihood of errors. The hospital has records of so many thousands of patients, many who have similar or identical names. There are good reasons to make sure that your notes on “Sally Smith” are entered into the chart of “Sally Smith” who is your patient.

It’s understandable. I remember when at the nurses’ station there’d be a sign (on “our” side) saying something like “CAREFUL: Anna Gonzalez in 202, Alma Gonzalez in 204b,” or something like that.

Patients blur.

It’s hard, veritably impossible, for most doctors and nurses to keep mental track of all of the patients they’ve ever seen and examined. There’s utility in the new system. Yes, it’s a good idea for a doctor, say upon receiving a call from a woman she hasn’t seen in 3 or 6 or 9 years, to see her picture in the chart, as a reminder.

But I hope my doctors know who I am, and not just what I look like in the image.

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The Immeasurable Value of Continuity of Care

Today I visited my internist for a checkup and flu shot. We talked about how I’m doing, and she examined me, and we discussed what procedures I ought have done and not done. She’s been my doctor since the summer of 1987, when I was an intern at the hospital.

We reviewed so much that has happened in the interim.

How rare it is, now, to have a doctor who knows me. Continuity in care is so valuable.

One of my greatest fears is being in the hospital again, and having hospitalists – doctors who work full-time in the hospital – be the ones to see me each day, and make decisions about what I need. Yet I’m bracing for it because, well, that’s how it is, now.

From a health care administration perspective, I recognize the value of delegating inpatient care to physicians who are not my usual doctors. And from the perspective of a physician who after hours and on weekends, would walk to and from the hospital, back and forth, countless times, to see my patients when they were sick, I know it’s neither cost-effective nor wise for physicians to push themselves to get over to the hospital before or after they’ve gone home, and called everyone back, and maybe eaten dinner. Doctors need rest, too.

But as a patient, when I’ve been in the hospital, nothing was more reassuring than visits by my usual doctors – my internist, my oncologist, my surgeon, my orthopedist…Being cared for by strangers, however competent, is not the same, although there may never be a study to prove it.

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‘The Big C’ is Failing

Watching the Big C feels like a chore lately.

It reminds me of the feeling I used to get when I had to see and examine a patient in the hospital, under my care for some administrative non-reason, who didn’t need to be in the hospital IMO,  and whose hospital presence took time my time away from patients who needed my attention. But because I was responsible, I’d go and see her every day just the same, and listen and examine, make notes and occasional suggestions.

The show is terrible. There, I said it on the Internet.

In the most recent episode, Cathy (the melanoma patient who’s said to be responding to a treatment about which viewers know nothing) runs into her oncologist at the pool where she symptom-freely coaches a swim team. The doctor, portrayed by Alan Alda, has a young wife who talks openly about sex with her husband and invites Cathy to a meal in their home.

So Cathy’s two for two for eating meals with her oncologists – one in each of the Big C’s seasons so far. Pretty much any cancer patient can tell you that’s highly unusual. Most people have trouble getting to see their doctors in the office for sufficient time, no less in their homes or in restaurants.

Second problem: the doctor’s wife speaks quite crudely about her husband’s talents in the bedroom. Really I wouldn’t care, except that as much as I’ve worked with and known some older male physicians and their wives, and seen some stuff, I’ve never, ever, heard a doctor’s wife, or a drunk doctor’s wife, or a doctor’s wife who’s drunk, speak so crudely about her husband’s sexual skills to a patient. I’m sure it’s happened, but not very often.

And if the show’s directors are so comfortable covering sex, and tampons (last episode), and urine (pee in the pool, did they really have to include that?) and death (there’s a bit of a morbid thread emerging), they could talk about THE BIG C, i.e. Cathy’s melanoma.

If you cover all of the above, why not some jaundice, emesis (med-speak for throwing up), leukopenia (low white cells) or fatigue, or something having to do with cancer, treatments and side effects, or informed decision-making?

This program is a lost opportunity to, in a light-hearted and well-acted way, help people (1) understand what it’s like to go on a clinical trial, (2) live with advanced cancer, and (3) deal with a family during cancer treatments. It’s struck out.

(first sports metaphor on ML; probably the last -)

I’ll follow until the end of the season. Maybe it’ll turn around, but I doubt it.

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Cathy Wants a New Doctor and a Second Opinion

Last night the Big C returned, not surprisingly with an opening dream sequence. Laura Linney, portraying Cathy Jamison in the Showtime series, is running. The scene turns out to be a nightmare, and she awakens with a headache and her husband by her side.

Laura Linney portrays Cathy, hugging her son in Showtime's "The Big C"

OK so far.

Within a few minutes, Cathy’s young oncologist informs her that the interleukin 2 hasn’t worked; after two rounds of “chemo” the melanoma hasn’t budged. Sitting at his desk in the consultation room, he suggests she roll some joints for relief of headaches. She says she wants another opinion. It’s about time.

The main problem Cathy faces in this episode is that she can’t get an appointment with her oncologist of choice, Dr. Atticus Sherman despite calling, calling and calling. So finally she thinks out of the box: “That would be a coffin,” intimates her deceased, elderly neighbor Marlene who visits, spiritually, from Season 1.

So Cathy dons a suit and heels, and pulls a small suitcase with wheels – in the style of a drug sales rep – to work her way into the famed oncologist’s office. This desperate strategy, reminiscent of that suggested by journalist Elizabeth Cohen in the Empowered Patient book, and tried at least once by Samantha in Sex in the City when she had breast cancer, seven years ago or so on HBO, nearly backfires. But in a stroke of changed fate, the same doctor’s office calls Cathy to let her know she’s got an appointment for next week.

Such drama, just to get an appointment didn’t move me. But perhaps I’m too removed from this sort of painfully real situation for the countless, frustrated patients who can’t get appointments with appropriate specialists.

I was disappointed with the episode for other reasons. It wasn’t rich with ideas. There was no meaningful discussion of Cathy’s cancer, and only a shallow exploration of her feelings.

Like other TV comedies, this show was about everyday junk and family life: her son’s farting habit, her friend’s active sex life and pregnancy, her brother’s insanity, her dog’s seeming to be dead and then turning out to be alive. This (non) focus is fair enough, I suppose; when a person has cancer, they’re indeed surrounded by people in their family and friends who have their own needs and issues.

A particular beef is this: Clearly Cathy needed a second opinion; that’s been the case all along. But the script-writers made it too easy by having the young oncologist be utterly clueless and behaving inappropriately. The value of a second opinion would be clarified if Cathy had chosen to seek another doctor’s input even if she were receiving seemingly expert care from a solid, more experienced physician.

And where is the Internet in all of this? Her friend Rebecca (Cynthia Nixon) might be looking some stuff up. Or her brother, for that matter, who’s now said to be manic depressive, could be maxing out on free and potentially useful information. His anger at his sister would be more credible if it were less extreme and if he were less bizarre; his is not a fair or typical depiction of his stated mental illness.

How will Cathy’s appointment with Dr. Sherman go next week? We’ll see.

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Don Berwick, Head of CMS, on the Value of Patient-Centered Care

A few weeks ago I had the opportunity to hear Dr. Don Berwick speak at the annual meeting of the Association of Health Care Journalists.

Berwick now heads the Centers for Medicare & Medicaid Services. When he spoke in April, on transparency and how we might simultaneously cut costs and improve care, I thought his talk was pretty good. This morning, through Twitter, I came upon a short clip from a Berlin conference in 2009. Here, he tackles the meaning of patient-centered care. It’s near-perfect:

Don Berwick, on YouTube: What Patient-Centered Care Really Means

My favorite lines:

…The errors and unreliability of health care are not the main reason that I fear that inevitable day in which I will become a patient…I can use my own wit to stand guard against them…

<rather>

…What chills my bones is indignity. It is the loss of influence on what happens to me. It is the image of myself in a hospital gown, homogenized, anonymous, powerless, no longer myself. It is the sound of young nurse calling me “Donald” which is a name I never use, ‘It’s “Don.’…

It is the voice of the doctor saying ‘we think,’ instead of ‘I think,’ and thereby placing that small verbal wedge, the pronoun ‘we,’ between himself as a person and myself as a person…

Bravo!

Why I like this clip so much is that Berwick gets the nuanced language of medicine in a way few doctors, in my experience, do. He’s not so much afraid of data and making decisions or even errors, which are in theory surmountable problems, through better information and education, and despite everything may not lead to a “cure” or even a person’s survival, per se. He most fears being perceived as an object, without respect for his concerns and preferences.

That is my greatest fear, too.

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Shoutout: This Week’s Grand Rounds Hosted by the Prepared Patient Forum

Yesterday’s medical-blog Grand Rounds, on What it Takes, is hosted by the Prepared Patient Forum. There’s a nice array of diverse posts. Among my favorites this week are from patients’ perspectives: by Warm Socks, on complex and simple physical systems for remembering to take pills and by Heart Sisters, on ditching the bucket list.

I recommend the Prepared Patient® blog in general; it covers patient-doctor relationships, medical ethics, health care economics and related issues. The forum includes a “dial 411” section with links to on-line, telephone and community resources for patients. The website is sponsored by the Center for Advancing Health, a D.C.-based institute.

The center’s stated mission is to conduct research, communicate findings, and advocate for policies that support everyone’s ability to benefit from advances in health science.

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E-Patient Dave Explains What It Means to Be An E-Patient

Med-blog grand rounds this week is hosted by e-patient Dave, who is Dave deBronkart, a real man who was diagnosed with a renal cell (kidney) cancer a few years back. He’s a terrific speaker and an Internet friend.

By coincidence I was searching for the definition of an e-patient, and came upon it there, in a video of his presentation at the TED (for those of you in the 1990s, that would be Technology, Entertainment, Design ideas worth spreading) “x” – meaning independently-organized meeting held in Maastricht a few weeks ago. Dave and others spoke on the topic of “The Year of Patients Rising.”

Dave explains: An e-patient is empowered, engaged, equipped and enabled. Got it?

e-patient Dave, in Maastricht

In Dave’s bio, he attributes the “e-patient” term to the late Dr. Tom Ferguson, a physician and author who, with Dave and others, founded the Society for Participatory Medicine.

All for today –

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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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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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A Video About a Robot and a Patient

Since Watson won on Jeopardy, there’s been lots of talk of robots assuming doctors’ roles. Ten years into our future, machines with programmed empathy and nuanced diagnostic skills will solve diagnostic dilemmas, deduce optimal treatment and make us well.

Yesterday I found a new Xtranormal video, this one crafted by Dr. Charles of his excellent Examining Room blog, on Dr. Watson and the 7 Qualities of an Ideal Physician.

from the Examining Room of Dr. Charles

Dr. Charles cites a 2006 Mayo Clinic Proceedings review on what patients say are essential characteristics of a good physician: The ideal doctor is confident, empathetic, humane, personal, forthright, respectful, and thorough. In this clever, short movie crafted by Dr. Charles, the robot-doctor tries to demonstrate his capability in each of these dimensions in his interaction with a cartoon patient.

I hope the folks over at IBM, who are collaborating with real medical centers now about designing artificial doctors’ intelligence, might take a close look at this video.

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May I Call You ‘Doctor’?

Last week I considered the relationship between the Prince Albert and his speech therapist in The King’s Speech. One aspect I wanted to explore further is why the future king initially insisted on calling the practitioner “doctor.”

In real life, now, patient-doctor relationships can be topsy-turvy. This change comes partly a function of a greater emphasis on patient autonomy, empowerment and, basically, the newfangled idea that the people work “together, with” their physicians to make informed decisions about their health. It’s also a function of modern culture; we’re less formal than we were a century ago.

Patients enter the office with their own set of information and ideas about what they need. The recent Too-Informed Patient video highlighted this issue, effectively.

Doctors are human, we are painfully aware in 2011. They make mistakes and they sometimes need to have dinner with their families. They may even let us down.

When I was a young physician, my patients almost universally called me

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The King’s Speech is Not Just About Stuttering

Over the weekend I went to see the King’s Speech. So far the film, featuring Colin Firth as a soon-to-be-King-of-England with a speech impediment, and Geoffrey Rush as his ill-credentialed but trusted speech therapist, has earned top critics’ awards and 12 Oscar nominations. This is a movie that’s hard not to like for one reason or another, at least most of the way through. It uplifts; it draws on history; it depends on solid acting.

What I liked best, though, is the work’s rare depiction of a complex relationship between two imperfect, brave and dedicated men. At some level, this is a movie about guys who communicate without fixating on cars, football (either kind) or women’s physical features. Great! and, dear Hollywood moguls, can we have some more like this, please?

The film’s medical aspects are four, at least: the stuttering, the attitude of physicians toward smoking, a closeted sibling who had epilepsy and died at an early age – just mentioned in passing, and, finally, the king’s trusted practitioner’s lack of credentials.

King George VI (Wikimedia Commons)

At the start, Prince Albert (young King George VI) has a severe speech impediment. It’s said that he stutters, and on film Firth does so in an embarrassingly, seemingly extreme and compromising degree. He’s the second of George V‘s sons, and might or might not succeed to the throne depending on events in history, his older brother’s behavior, and his capacity to serve the Empire at the brink of war. Being effective as King of England in 1936, and especially at the start of war in 1939, entails speaking confidently.

Prince Albert’s been through the mill with doctors who’ve tried to help him talk. Some recommend he smoke cigarettes; these, they advise, would help him to relax and, they say, is good for the nerves. One asks him to speak with a mouthful of marbles, on which this doctor watching the film worried he might choke. Eventually Albert’s wife, Elizabeth (Queen Mother to be), finds a speech therapist in London, Lionel Logue, who uses unorthodox approaches with, by rumor, exceptional results. Eventually Prince Albert – or “Bertie” as the therapist insists on calling him – trusts and accepts help from this peculiar Australian who, it turns out, developed his methods of assisting stutterers through his work with shell-shocked soldiers in WWI.

According to MedlinePlus, stuttering affects as many as 1 in 20 children, with typical onset before the age of 5. The problem can persist for weeks or years, of manifold causes. Some families are disproportionately affected, but there’s no known genetic cause. Stuttering can arise upon emotional trauma. It’s more common in boys than in girls.

As for doctors recommending cigarettes, the concept is familiar from some old literature regarding schizophrenia. In a recent post, I included a curious TV ad featuring doctors smoking Camels. I don’t have a good sense of just how comfortable most physicians were with smoking prior to 1950, and would like to know more. Did they have their suspicions?

Finally, on the relationship between the king-to-be and Mr. Logue, it’s fascinating: Prince Albert prefers to call his therapist “doctor,” but Logue is adamant that they refer each to the other on a first-name basis. Well into the film, we learn that Logue hasn’t ever attended speech therapy school, or medical school, or whatever it is that someone who treats another person in London circa 1930 should have completed before providing quasi-medical, essentially psychological care as he did to his royal highness. Nonetheless, the king trusts Logue more than any suitably-credentialed therapist recruited by his staff. This topic – of the therapeutic relationship, trust and expectations – warrants separate attention.

Meanwhile, I hope you have the chance to see this movie, if you haven’t already. The Oscars are scheduled for February 27, just two weeks away.

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Considering the Significance of a Doctor’s White Coat

A while back, a first-year med student asked me if I think physicians should wear white coats. There’s a debate about it, she mentioned. Indeed, in the spring of 2009 the AMA considered an unenforceable mandate that physicians in the U.S. not wear white coats. The news was getting around that doctors spread infection from one patient to the next by our garments.

My thoughts on this have always been clear. “Yes,” I answered. “But they’ve got to be clean white coats.”

This week I came upon two stories that led me to pick up the thread on the white coat debate. First, a recent post from the Singing Pen of Doctor Jen, by Jennifer Middleton MD, MPH, who writes from western PA:

We physicians might make assumptions about what patients want us to look like, but what does the evidence say?

A cross-sectional survey in Tennessee a few years ago found that patients prefer family physicians who wear white coats (1).  Another study in a South Carolina internal medicine office found that patients “overwhelmingly” preferred physicians in white coats (2).  A Northeast Ohio OB residency found similarly; patients preferred a white coat and professional dress to scrubs (3). A quick PubMed search pulls up the same theme over and over: the patients studied have more trust in, and comfort with, physicians who wear white coats…(hyperlinks inserted by ES)

Today in the New York Times, a piece by Sandeep Jahuar, MD alludes to the issue by its title: Out of Camelot, Knights in White Coats Lose Way. He considers disillusionment of many doctors with medicine as a profession. He writes:

Physicians used to be the pillars of any community. If you were smart and sincere and ambitious, the top of your class, there was nothing nobler you could aspire to become. Doctors possessed special knowledge. They were caring and smart, the best kind of people you could know.

Today, medicine is just another profession, and doctors have become like everybody else: insecure, discontented and anxious about the future.

As a doctor, I think physicians should wear white coats for several reasons. First, the white coat reminds the wearer that medicine is a special kind of profession, that doctors have extraordinary obligations to patients. Second, the white coat recalls medicine’s basis in science, from which we wouldn’t want to stray too far. Third, it’s to protect ourselves: going home to dinner with your family, loaded with hospital germs, is just not smart.

As a patient, I like it when my doctors where a white coat. It’s reassuring in a primitive kind of way; it makes me feel like the physician is a real doctor who is capable of taking care of me. But the coat should be clean – every day a fresh one, with extra changes if needed.

Of course there are some circumstances when the white coat is appropriately relegated elsewhere: in places like the OR, in most psychiatrists’ offices and in pediatrics – so as not to scare the children, I once learned although I’m not convinced it would.

It takes a certain effort for a doctor to put on a white coat. When I used to get called back in late at night, or after weekend rounds, I’d occasionally just go straight to the patient’s ward or E.R., without stopping by the room where my coat was kept. That was easier, sure, but when I skipped the white coat I felt as if I weren’t fulfilling my part of the deal: to look and act like a doctor should.

Patients need that, usually. And maybe that’s a hang-up, a superficial wanting, a simple reassurance of authority. But maybe it’s also a sign that you’re serious in your duties as a physician, that you’re not cutting corners, that you will do everything you can to fulfill your obligation to the persons under your care, that you know who you are as the doctor.

Maybe, when younger doctors elect not to wear the white coats, for whatever legitimate reasons, or out of laziness in finding a clean one, it’s really that they don’t want the responsibility the coat conveys.

It could also be that they’re just hot, or uncomfortable.

I’ll leave this open, at that.

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Why It’s a Good Idea to Get a Second Opinion, and Maybe a Third, But Rarely a Fourth

A few years ago I started writing a book on what it was like to be a cancer patient and an oncologist. This morning I came upon this section on second opinions:

Is it OK to get a second opinion?

Definitely. And there’s no need to be secretive about it, or to worry about hurting the doctor’s feelings. Second opinions are routine in fields like oncology, and are often covered by insurance. Be up-front: any decent oncologist can understand a cancer patient’s need to find a doctor who’s right for them, with whom they’re comfortable making important decisions. And in difficult cases, some specialists appreciate the chance to discuss the situation with another expert. So a second opinion can be beneficial to patients and physicians alike.

When things can get out of hand, though, is when patients start “doctor shopping.”  For example, I’ve cared for some patients with leukemia who’ve been to see over 10 oncologists. If you’re acutely sick, this sort of approach to illness can be counterproductive; it can delay needed therapy. From the physician’s perspective, it’s alienating; who wants to invest her time, intellectual effort and feelings for a patient who’s unlikely to follow up? Besides, oncology is the sort of field where each consulting doctor may have a distinct opinion. (If you see ten oncologists, you may get ten opinions…). Beyond a certain point, it may not help to get more input, but instead will cloud the issue.

As things stand, oncologists often discuss difficult cases with their colleagues. This happens at academic centers and hospitals, where tumor boards meet regularly to review the diagnosis and management of each cancer case, and informally in private practices, where physicians are likely to discuss certain aspects of treatment with their partners. For patients with very rare conditions, some oncologists will call experts in the field whom they may know through national meetings, journals, and other resources. What this means for patients is that through one consultant, they may be getting input of more than one expert, although they may not be aware.

So I recommend that patients with cancer, or any other serious or rare condition for that matter, get a second or third opinion about the best way to manage their illness. But at some point you’ve got to select one among those specialists, even if she’s not perfect, and stick with her at least for a while, until you have a good reason to switch or move on. Otherwise, you’re unlikely to have a doctor who cares when you’re really sick and, later, about your long-term well-being.

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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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I Feel Your Pain (not)

A tweet hit me on Sunday evening, from a stranger:

@Mibberz

I’m saddened by how many ADULTS can’t get their #rheum 2 understand the level of severity of their pain.What hope is there for my daughter?

I half-watched an on-line exchange about the issue, and then went about my family’s dinner preparations.

The message came from Amy Cunningham, who blogs about her daughter’s experience with juvenile rheumatoid arthritis and uveitis to the starting tune of Van Morrison’s “Brown Eyed Girl.” I couldn’t bear the tracks that followed, playing automatically and disjointedly in multiple browser windows, so I shut them off. But I kept on thinking about the girl’s pain, and the mother’s despair.

I wasn’t alone in that. Turns out that Rheumatoid Arthritis Warrior Kelly Young (@rawarrior) was all over the matter. She’s got a Facebook discussion going on the topic and a post today called Some Rheumatologists Don’t Understand How Much It Hurts.

The problem of doctors dismissing patients’ pain is very real. I know this from my own experiences, like when I fell on the icy sidewalk and broke my right arm in the midst of breast cancer treatment. My elbow became gigantically swollen because my platelets were low – a side effect of the chemo – and as a consequence of a non-steroidal anti-inflammatory agent I was taking for back pain. In the E.R. the doctors gave me enough pain meds only after I’d been made to feel humiliated by some of the staff. Another time, after a 10 hour back surgery in which the orthopedists cut a steel rod fused to my spine and otherwise manipulated that column of nerves, the anesthesiologists laughed in the recovery room, hinting that my pain was due to depression.

How wrong they were –

Medicine is a very macho profession. For the record – when I had my wisdom teeth removed, I had them all taken out at once and returned straight to work in the lab. I drew my own blood for experiments with lymphocytes, countless times. Once I inserted my own intravenous catheter, while pregnant. When my spine started to crumble, I had trouble acknowledging the pain for several years. I felt embarrassed, compromised by it. In the year before surgery, I had a CT myelogram (which involves a lumbar puncture), went home and prepared for a journal club presentation the very next day. And so on. Only later, when I could hardly walk, I mentioned my limitation because I needed to cut back on my time standing while on rounds at the hospital. Some colleagues were sympathetic, but others were less generous.

Being tough has its merits. But denying pain, or suggesting that people who complain about their symptoms are weak, is not helpful to anyone. Pain can be very real, and disabling.

I think the problem for some doctors is one of arrogance; they perceive pain as something that happens to “others” and not to them, as if it were a sign of weakness or a character flaw. For some, the denial of patients’ pain may be some kind of strange defense mechanism, a psychological device by which they distance themselves from those affected, and so it might seem like it couldn’t happen to someone like them.

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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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Hospital Fashion News from AARP and the Cleveland Clinic

The November AARP Bulletin highlights a promising development in hospital couture: trendsetter Diane von Furstenberg has designed new, unisex gowns ready for wearing in hospitals. The new gowns provide style and full coverage, with options for opening in front or back according to the bulletin. A trial is underway at the Cleveland Clinic.

Turns out Newsweek (which will soon marry Tina Brown’s Daily Beast, but I digress) ran a more detailed feature on the von Furstenberg hospital gowns last August. For those of you who missed the medical fashion story of last summer, here’s the scoop:

In May, 2010, the Cleveland Clinic held a Patient Experience Summit with a bifocal theme of “empathy and innovation.” There, on Day 2, the gowns were unveiled. Jeanne Ryan, a nurse who leads the redesign team, gave a presentation. In sum: the garments should be comfortable to wear, provide dignified coverage, allow ease of access for medical examination, and meet the needs of both ambulatory and bedbound patients. And cheap – the gowns cost about $9 each, according to Newsweek.

The magazine provides some history on hospital gown innovation:

… In 1999 the Hackensack University Medical Center in New Jersey redid its gowns with the help of designer Nicole Miller. In 2004 the Maine Medical Center in Portland introduced a floor-length option to accommodate the requests of female Muslim patients, and in 2009 the Robert Wood Johnson Foundation offered $236,110 to the College of Textiles to work on designing, producing, and marketing a new style of gown…

It’s not obvious to this reviewer what will be so much better with the new DvF wraps, but I’m encouraged by the Clinic’s efforts to get this right.

Initial feedback has been good, according to Cleveland.com. Some men find the print a bit feminine, so the team may change the color scheme. Also, because the fabric shrinks upon washing, the gowns may need lengthening.

The team painstakingly chose a fabric not too heavy so as to be warm or uncomfortable for patients lying in bed, but not so light as to be transparent. The gown incorporates the Cleveland Clinic’s diamond logo in a von Furstenberg signature, repetitive kind of pattern. There’s an elastic waistband, a wrap-around closure, and a wide V-neck. The gown is functional while preserving modesty. “Physicians can open the gown to expose the part they need to access without exposing the patient completely,” Ryan told Newsweek.

As someone who’s experienced one-size-fits-all including me and a basketball player, both, in pre-surgical outfits, and who’s spent weeks lying in hospital beds barely clad while all kinds of people came in and out without knocking, and who even in this year felt embarrassed in a revealing “gown” that was supposed to cover me as I walked down a hall to a room for an x-ray but didn’t, in front of other patients and sometimes former colleagues, I see this as definite progress, or at least a step in the right direction.

These gowns needn’t (and shouldn’t) be expensive, and I have some concerns about the V neck, which sounds too open for a post-mastectomy style and for frail patients who might catch cold, or pneumonia. (Will Diane design matching scarves?) But in general I think this is a favorable trend, or at least a start, that some hospitals are noticing how patients are treated – apart from the meds and procedures and strict nursing care – affects their experience and, potentially, their wellness.

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A Story About A Doctor and His Neighbors

In recent years, some physician authors have wrestled with why doctors might want to think twice before “friending” their patients on Facebook. The usual reasons are to protect the physician’s professional image – that the public might see their weirder, or not-so-polished-as-while-working side and, also, to maintain a certain “distance” – lest doctors become so concerned about their patients’ well-being that they can’t render objective opinions or advice.

Others suggest it’s a good idea for doctors to be socially out there, so to speak. Besides, through most of history, or at least the civilized part in which there have been designated healers, many individuals knew their doctors, who often resided in the same village or region as their patients. People trusted their physicians or didn’t, based on what they knew about their reputations as practitioners and as local denizens.

In the October issue of Harper’s Magazine, T.C. Boyle provides a disturbing portrait of a portly, unkempt doctor who lands a job in small town, presumably in Maine. His unmannerly behavior disturbs some residents. The piece addresses, at least peripherally, some ultra-modern and ancient concerns about relationships between patients and doctors within a community. I don’t wish to give more of this short story away, so I won’t.

I do recommend What Separates Us From the Animals, part of a forthcoming novel, When the Killing’s Done, to my readers. With his frank, absorbing language, Boyle offers insight into human beings as sometimes social creatures who take far-from-perfect care of themselves. Doctor included.

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