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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Reducing Cancer Care Costs: The Value of Physicians’ Cognitive Work

We’ve reached what may be my favorite of the proposed ways to reduce cancer care costs, published in the NEJM by Drs. Smith and Hillner. Idea Number 8 is to realign compensation to value cognitive services, rather than chemotherapy, more highly.

What the authors are saying is that we’d save money if oncologists were paid more for thinking and communicating, relative to their compensation for giving chemotherapy. They write:

Medicare data have clearly shown that some oncologists choose chemotherapy in order to maximize income for their practice.<46,47> A system in which over half the profits in oncology are from drug sales is unsustainable.

They suggest that physicians’ compensation should go up, relatively, for time spent

  • referring patients for participation in clinical trials;
  • discussing orders for life-sustaining treatments;
  • considering advance medical directives;
  • talking about prognosis in family conferences.

I couldn’t agree more.

Take the clinical trials example. In my experience enrolling patients in clinical trials, it was a lot of work if you (the oncologist) wanted to do it properly: You’d have to read through the entire protocol; identify any potential conflicts of interest, look up any other protocols for which the patient might be eligible and (ideally) offer that as well, take the time to explain that it’s fine for the patient to not enroll – that there’s “no pressure” (subject of a future post: when patients feel that they should enroll in their doctor’s trial), answer all of the patient’s and a family member or friend’s questions about it, process the paperwork carefully…

And I’d add to the authors’ suggestions for compensation-worthy time spent:

  • going over pathology results, carefully and with an appropriate expert (a pathologist), and discussing the findings with the patient or designated proxy;
  • reviewing radiology images with appropriate specialists (x-rays, CTs, MRIs… comparing each with the previous studies) and sharing the results, as above;
  • checking blood work; abnormalities can be subtle; trends not obvious if results aren’t charted over time;
  • discussing the patient’s condition, periodically, with other doctors such as the internist (or pediatrician), cardiologist, pulmonologist, surgeon, etc.
  • researching relevant published studies and case reports for puzzling clinical situations (using Google, Medline, a real library, maybe calling an expert at another medical center…)
  • communicating with patient about the condition, more generally (not only about end-of-life issues) – such as explaining  a tumor’s known or unknown causes, treatment options, genetic and other implications of a cancer diagnosis.

Bottom line:

When oncologists earn more money by prescribing treatments like chemotherapy, there’s a conflict of interest and a tendency to give more treatment. If oncologists’ salaries were set based on a case load, or time spent taking care of patients that includes cognitive services – thinking and communicating – patients would get better care and less unwanted treatment.

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Reducing Cancer Care Costs: Oncologists Need to Get a Grip on Reality, and Talk about Dying

We’ve reached the second half of our discussion on Bending the Cost Curve in Cancer Care. The authors of the NEJM paper, Drs. T. Smith and B. Hillner, go on to consider how doctors’ behavior influences costs in Changing Attitudes and Practice. Today’s point on the list: “Oncologists need to recognize that the costs of care are driven by what we do and what we do not do.”

In other words (theirs): “The first step is a frank acknowledgment that changes are needed.” A bit AA-ish, but fair enough –

The authors talk about needed, frank discussions between doctors and patients. They emphasize that oncologists/docs drive up costs and provide poorer care by failing to talk with patients about the possibility of death, end-of-life care, and transitions in the focus of care from curative intent to palliation.

They review published findings on the topic:

In a study at our institution of 75 hospitalized patients with cancer, the oncologist had initiated a discussion of advance directives with only 2 patients.31 In a prospective, multicenter study of 360 patients, only 37% of the patients and their families could recall having a discussion about impending death with the physician.32 Such a discussion is a prerequisite to good planning. Oncologists wait until symptoms appear or until they believe that nothing more can be done.33 In one study, at 2 months before their death, half the patients with metastatic lung cancer had not had a discussion with their doctors about hospice.34 This may explain why in a recent series the average length of stay in hospice for patients with lung cancer was 4 days.35

Although I have questions about the specific methods for some of these references, the bottom line is clear: Oncologists wait too long to talk with their patients about palliative or hospice care.

What they’re saying is that doctors need to get a grip on the problem (to overcome their denial and inability to talk about death), if they want to help patients come to terms with the inevitable. Doing so would save billions each year in the US, and would also spare patients from futile treatments and needless suffering.

I couldn’t agree more. It’s a potential win/win, if physicians think realistically about the situation and possible outcomes, and speak openly – and gently, no matter what, with their patients.

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Give Doctors a Break

In a heartless op-ed in yesterday’s paper, an anesthesiologist argues that medicine shouldn’t be a part-time endeavor. Dr. Sibert makes a firm introduction: “I’m a doctor and a mother of four, and I’ve always practiced medicine full time,” she boasts. “When I took my board exams in 1987, female doctors were still uncommon, and we were determined to work as hard as any of the men.”

Her premise:

With a growing shortage of doctors in America, we can no longer afford to continue training doctors who don’t spend their careers in the full-time practice of medicine.

She’s half-right, I think; the costs of medical education are too great for doctors to be pulling back on normal work hours or quitting their work entirely, willy-nilly. Besides, perhaps a tougher or more persevering group of would-be physicians might have used their coveted med school slots to better end and, ultimately, helped greater numbers of people.

The problem is this: What happens when a doctor gets sick? Or her child? Or partner or spouse? Most of us who’ve gone to med school, men and women both, do or should plan for coping with the inevitable decline of our parents and older family members. But there are some unfortunate circumstances that can make full-time work a challenge for months or even years.

I suspect the author has been fortunate in her career and health.

When a doctor or a dependent becomes seriously ill, she needs a supportive environment. She needs a workplace that allows her to take time off completely, or to work part-time for a while and possibly for a period of years, in a way that doesn’t engender resentment among her colleagues.

In a system without slack, doctors may feel pressured to work under too much duress, when they themselves are facing serious health or family problems. As things stand, I’ve witnessed doctors who’ve abused alcohol, been unkind to colleagues and disrespectful toward patients, and cut clinical corners as ways of coping with too much work, too little free time, and too little sleep.

Sometimes, the reasons why a doctor needs to cut back on her hours or work may not be evident to her colleagues. She may keep her good reasons to herself. With patients, explaining the details of one’s own illness, or a child’s, seems unprofessional, in general, although I do think that when a doctor becomes so fragile that she may not be able to return to work, her patients have the right to know that much, if they depend on her.

As for me, what I’ll say here is this: The day I stopped practicing medicine, nearly five years ago, was one of the saddest days of my life.

Medicine still is a macho field, as Dr. Sibert reveals in her op-ed. This is a shame, because the physicians’ shortage is real. In the long run, the system – which amounts to doctors in supervisory positions, like division and department chiefs – should soften up.

A flexible, more realistic system would allow doctors, in whom the system has invested so much, and who have invested so much of themselves, to take time off when they need it, and flexibility in their schedules, so they can continue in their careers after prolonged illness.

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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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Some Articles I Authored A While Ago

This post, on my research in cancer immunology, is strangely personal.

At one level, what follows is nothing more than a list, a narrative if you will, a sketch of a formative chunk of my career and personal history. I’ve wanted to put this out there (here) for quite a while, but couldn’t: It’s been hard for me, harder in some ways than was the breast cancer and spine surgery and all the other unpleasant illnesses I haven’t mentioned yet, to come to grips with my near-hit academic medial research career that stopped, which until today has been for the most part disconnected from this blog and my new on-line life.

So here goes, a partial list of my publications, selected from ~30:

On a novel mechanism for B-cell death, my first first-author article based on my research in lymphoma immunology, in The Journal of Experimental Medicine, 1995:

CD40 ligation induces Apo-1/Fas expression on human B lymphocytes and facilitates apoptosis through the Apo-1/Fas pathway

On how “helper” T cells can kill some forms of malignant B cells, in Blood, 1996:

CD4+ T-cell induction of Fas-mediated apoptosis in Burkitt’s lymphoma B cells

A solicited review of my early labwork, completed with my research mentor, in Immunologic Research, 1996:

Fas expression and apoptosis in human B cells

My first paper on CD40L and autoimmunity, in CLL, in Blood, 1998:

Chronic Lymphocytic Leukemia B Cells Can Express CD40 Ligand and Demonstrate T-Cell Type Costimulatory Capacity

A case report (as my lab and non-physical stature grew I became senior author), in the British Journal of Haemotology, 1998:

Novel association of haemophagocytic syndrome with Kaposi’s sarcoma-associated herpesvirus-related primary effusion lymphoma

On some experiments with mantle cell lymphoma cells, in Leukemia, 2000:

Proliferative response of mantle cell lymphoma cells stimulated by CD40 ligation and IL-4

Work accomplished with colleagues-now-friends, in Blood, 2000:

Inhibition of NF-kB induces apoptosis of KSHV-infected primary effusion lymphoma cells

The first major paper from my NIH-funded lab, in The Journal of Immunology, 2000:

Modulation of NF-kB Activity and Apoptosis in Chronic Lymphocytic Leukemia B Cells

We sent this one to Science. They declined. So did a bunch of other journals. Eventually it came out in Blood, 2001:

Survival of leukemic B cells promoted by engagement of the antigen receptor

A nearly life-eating chapter that took up way too much of my time but was probably worthwhile nonetheless, on immunology, for a Neoplastic Hematopathology textbook, in 2001:

Immune System: Structure and Function

An interesting story, we thought, in Autoimmunity, 2002:

Inhibition of Fas-mediated apoptosis by antigen: implications for lymphomagenesis

A monograph I wrote around the time I got sick, on how malignant lymphocytes die, somewhat theoretical, in Cancer Investigation, 2002:

Apoptosis in Lymphocytic Leukemias and Lymphomas

For there record, there’s earlier and later stuff too, by me alone and with others, and (sadly) reams of unpublished data, mainly from 1997 – 2002. These are the published papers I consider most my own.

Looking back, I’m pretty sure we were right, at least on most of these findings.

(Is there an opposite-of-decline effect?)

I’ve often wondered how differently things might have turned out if there’d been blogs and open-access journals with real-time comments when we in my lab were trying to get our work published in top, grant-renewing, tenure-securing journals.

Didn’t happen…

Well, now that this is done, I can keep moving forward!

With gratitude to my colleagues who collaborated, and especially to those who worked with me in the lab,

ES

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Dr. Greenfield is Human

A few days ago I read that Dr. Lazar Greenfield, Professor Emeritus at the University of Michigan, resigned as the president-elect of the American College of Surgeons over flak for authoring a Valentine’s Day-pegged, tacky, tasteless and sexist piece in Surgery News. The February issue is mysteriously absent in the pdf-ied archives. According to the Times coverage: “The editorial cited research that found that female college students who had had unprotected sex were less depressed than those whose partners used condoms.

From Pauline Chen, also in the Times:

It begins with a reference to the mating behaviors of fruit flies, then goes on to discuss studies on the menstrual cycles of heterosexual and lesbian women who live together. Citing the research of evolutionary psychologists at the State University of New York, it describes how female college students who had been exposed to semen were less depressed than their peers who had not, concluding: “So there’s a deeper bond between men and women than St. Valentine would have suspected, and now we know there’s a better gift for that day than chocolates.”

Not that I’m OK with any of this, as I’ve known the ickiness of older male physicians who don’t even realize when they’re being inappropriate.

But this morning I learned from Orac that Dr. Greenfield is the Dr. Greenfield, the one that invented the Greenfield filter. This threw me a bit, because I admire Dr. Greenfield for his work. He’s saved a lot of lives, perhaps tens of thousands. (I’m guessing on this number; it could be more, the point is – a Tsunami’s worth of lives.)

Doctors, including non-surgeons like me, would sometimes advise insertion of Greenfield filters in patients with blood clots and a contraindication to blood thinning. One example of countless I recall in my own experience as an oncologist: an elderly patient with pancreatic cancer and limited mobility who had a DVT in the leg and a brain met. We wouldn’t want to give the patient a standard blood thinner, like heparin or coumadin, because the tumor in the brain might bleed with catastrophic effect.

The common teaching was that a Greenfield filter, inserted through a large thigh vein up to the inferior vena cava, would prevent a blood clot from spreading from a patient’s leg up to the heart’s right chamber and into the lung’s circulation, where it might lodge in the form of a pulmonary embolus, a serious and sometimes lethal condition.

As a patient, I once had a newer-model Greenfield placed on a temporary basis. Because I’d had a major DVT while immobilized after spine surgery for scoliosis as a teenager, and then I had breast cancer – another risk factor for DVT – when I needed spinal repair as an adult in 2003, my orthopedist and hematologist were concerned that my risk for developing another major clot was great. Because they couldn’t put me on an anticoagulant for days after such a big operation, they advised prophylactic insertion of a temporary Greenfield device. I accepted the plan, hesitatingly, as reasonable.

So from both my professional doctor’s and my patient’s perspective, I’ve perceived value in Dr. Greenfield’s contribution and possibly benefited from his work. Then again, a 2000 review in Blood suggests more evidence is needed to support the filters’ widespread use. I agree.

The clearest take, maybe, is that some powerfully driven, innovative and brilliant people make personal mistakes.

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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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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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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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Note to Self and to Physicians, Division Chiefs, Hospital Administrators and Everyone Else With Responsibilities for Other Humans

(and to Other Physicians, Division Chiefs, Hospital Administrators and Everyone Else With Responsibilities for Other Humans):

 

Yesterday I started but didn’t complete a post on the interesting concept of the Decline Effect. I got caught up with several extra-ML responsibilities that kept me busy until very late last night, which became morning before I knew it. I sensed my tiredness, and delayed that short essay for fear of writing something erroneous on the Internet.

Today I had to get up extra early for a meeting. My mind wandered, and I contemplated my fatigue.

I realized that I used to feel like this often when I was practicing, and especially when I returned to work after my cancer treatments and major back surgery. On nights and weekends, working as an attending hematologist and oncologist and caring for patients who were critically sick, I would get called constantly and, not infrequently, have to go to the hospital at odd hours. The work was exhausting.

Residents’ and fellows’ hours are regulated now, and they were then in New York State. But for senior physicians, including many older and frailer than I am, there’s no limit on the consecutive hours they might be responsible for patients’ lives.

Reminder: Without sufficient rest, you can’t think as clearly as you might or should.

No one should be staying up late or all night and then be performing surgery, calibrating humans’ heart rhythms or even just ordering labs. It’s not worth it.

All the physicians I know are real people. Many excellent doctors are too old to pull all-nighters. Our health care system needs evolve so they can take better care of themselves and keep caring for others.

That’s it for today.

—–

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Why I Went for My Screening Mammogram

Dear Readers,

This week marks eight years, exactly, since I had an abnormal mammogram that led to my breast cancer diagnosis. I was 42 years old, and lucky because the excellent radiologist who discovered my tumor was a super-specialist in breast imaging, the kind of radiologist who spends her work-time analyzing mammograms, performing breast sonograms and taking biopsies of suspicious lesions. She doesn’t often look at hip films or ordinary x-rays. She just does mammograms, mammograms and mammograms, and sometimes additional tests to evaluate abnormalities she detects in those. She knew her stuff.

I was afraid to get a mammogram because I didn’t want to learn I had cancer. Back then, my breasts were so glandular it was hard for me, an oncologist, to discern what might be a pathological lump, or not. I feared having a “false positive,” and undergoing multiple tests to evaluate abnormal images that would turn out to be nothing but big-bill inducing benign lesions.

Really I was hesitant in visiting her office. I didn’t have time for cancer, because I was in pain from a crumbling spine and needed to get my back fixed before even opening up the possibility of additional medical problems. I wanted to work as much as I could then, before and after that big reconstructive spinal surgery, so that I might continue research and publish more papers. Besides, my sons were young then – ages 8 and 10 – and I didn’t want to not be able to make dinner because I was throwing up, or die.

Not getting a mammogram was a way of not finding out. The shoemaker’s kids don’t get shoes. An oncologist doesn’t get a mammogram…

My general internist, whom I trusted, insisted that I go for screening. “You’re over forty, you know,” she said. But I had no family history of the disease, then – this has since changed, and I didn’t consider myself at increased risk. Ultimately I went for the mammogram because I knew it was the responsible thing to do, to take care of myself.

When I had the mammogram, and the sono to evaluate an abnormality, and the core needle biopsies in the next week, I wasn’t afraid so much as I was annoyed by all the inconvenience. “Who has time to be a patient?” was my attitude. I came to each doctor’s appointment armed with research articles and colleagues’ manuscripts to review. I had meetings to attend, and responsibilities, and participated actively in a typical two-career family kind of up-and-out-early way of raising our sons.

All of that is behind me now, as is the chemo,  hair loss, some incidental fractures, surgeries, generalized fatigue and sad times that followed. How lucky I am that I went that day. There is no doubt in my mind.

Next year, approximately 45,000 women in the U.S. will die of metastatic breast cancer. Why I advocate for screening mammograms is because I know that a significant fraction of those advanced cases, perhaps half or more, could be prevented by early detection. That benefit would be a boon to the public health: perhaps as many as 20,000 – 30,000 women spared per year from morbidity, suffering and mortality of metastatic breast cancer, which is currently an incurable, costly disease.

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

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

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

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Back to Basics – But Which Ones?

A front-page story on the Humanities and Medicine Program at the Mount Sinai School of Medicine, here in Manhattan, recently added to the discussion on what it takes to become a doctor in 2010. The school runs a special track for non-science majors who apply relatively early in their undergraduate years. Mount Sinai doesn’t require that they take MCATs or the usual set of premedical science courses – some college math, physics, biology, chemistry and organic chemistry – before admission.

The idea of the program is two-fold: first, that the traditional med school requirements are a turn-off, or barrier, to some young people who might, otherwise, go on to become fine doctors; second, that a liberal arts education makes for better, communicative physicians and, based on the numbers published in a new article, a greater proportion who choose primary care.

Today Orac, a popular but anonymous physician-scientist blogger, considers the issue in a very long post. His view, as I understand it, is that if doctors don’t know enough science they’ll be vulnerable to misinformation and even quackery.

On the side of the spectrum, perhaps, Dr. Pauline Chen, a surgeon who puts her name on her blog and essays. In a January column, “Do You Have the Right Stuff to Be a Doctor?” she challenged the relevance of most medical schools’ entry requirements.

I see merit on both sides:

It seems fine, even good, for some students to enter medical school with backgrounds in the humanities. Knowledge of history, literature, philosophy, art history, anthropology and pretty much any other field can enhance a doctor’s capability to relate to people coming from other backgrounds, to recognize and describe nonparametric patterns and, perhaps, deliver care. Strong writing and verbal skills can help a doctor be effective in teaching, get grants and publish papers and, first and foremost, communicate well with patients and colleagues.

Still, there’s value in a doctor’s having a demonstrated aptitude in math and science. Without the capacity to think critically in math and science, physicians may not really understand the potential benefits and limitations of new medical findings. What’s more, doctors should grasp numbers and speak statistics well enough so they can explain what often seems like jumbled jargon to a patient who’s about to make an important decision.

Thinking back on my years in medical school, residency, fellowship, research years and practice in hematology and oncology, I can’t honestly say that the general biology course I took – which included a semester’s worth of arcane plant and animal taxonomy – had much value in terms of my academic success or in being a good doctor. Chemistry and organic chemistry were probably necessary to some degree. Multivariable calculus and linear algebra turned out to be far less important than what I learned, later on my own, about statistics. As for physics and those unmappable s, p, d and f orbitals whereabout electrons zoom, I have no idea how those fit in.

What I do think is relevant was an advanced cell biology course I took during my senior year.  That, along with a tough, accompanying lab requirement, gave me what was a cutting-edge, 1981 view of gene transcription and the cell’s molecular machinery. Back then I took philosophy courses on ethical issues including autonomy – those, too, proved relevant in my med school years and later, as a practicing physician. If I could do it again, now, I’d prepare myself with courses (and labs) in molecular biology, modern genetics, and college-level statistics.

My (always-tentative) conclusions:

1. We need doctors who are well-educated, and gifted, in the humanities and sciences. But for more of the best and brightest college students to choose medicine, we (our society) should make the career path more attractive – in terms of lifestyle, and finances.

(To achieve this, we should have salaried physicians who do not incur debt while in school, ~European-style, and who work in a system with reasonable provisions for maternity leave, medical absences, vacation, etc. – but this is a large subject beyond the scope of this post.)

2. There may not be one cookie-cutter “best” when it comes to premedical education. Rather, the requirements for med school should be flexible and, perhaps, should depend on the student’s ultimate goals. It may be, for instance, that the ideal pre-med fund of knowledge of a would-be psychiatrist differs from that of a future orthopedist or oncologist.

3. We shouldn’t cut corners or standards in medical education to save money. As scientific knowledge has exploded so dramatically in the past 30 years or so, there’s more for students to learn, not less. Three years of med school isn’t sufficient, even and especially for training primary care physicians who need be familiar with many aspects of health care. If admission requirements are flexible, that’s fine, but they shouldn’t be lax.

Critical thinking is an essential skill for a good doctor in any field. But that kind of learning starts early and, ideally, long before a young person applies to college. To get that right, we need to go back to basics in elementary and high school education. If students enter college with “the right stuff,” they’ll have a better understanding of health-related topics whether they choose a career in medicine, or just go to visit the doctor with some reasonable questions in hand.

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Living Like It’s Shark Week!

Today is the start of this year’s Shark Week on the Discovery Channel.

shark (adapted image from Wikimedia Commons)

Dialog from NBC’s 30 Rock, Season 1, Episode 4 “Jack the Writer” (2006)*:

Tracy Jordan: But I want you to know something… You and me, it’s not gonna be a one-way street. Cos I don’t believe in one-way streets. Not between people, and not while I’m driving.

Kenneth: Oh, okay.

Tracy Jordan: So here’s some advice I wish I would have got when I was your age… Live every week, like it’s shark week.

(No further explanation is given. In the next scene the comedy writers take a one-minute dance break and then Jack provides an intro to GE’s six sigma program.)

—–

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The Checklist and Future Culture of Medicine

Like many New Yorkers, I learned about the checklist in a magazine. I remember thinking, in late 2007, that maybe I’d seen something on the subject in The New England Journal. Indeed, a year earlier Dr. Peter Pronovost and colleagues reported on a simple, inexpensive strategy to save lives in a now-landmark article, “An Intervention to Decrease Catheter-Related Bloodstream Infections in the ICU.” Still, I’d missed the paper. Or at least I’d overlooked the significance.

Fortunately I had the opportunity to hear Pronovost, a still-youngish Professor at Johns Hopkins and recent MacArthur award recipient, speak at the annual meeting of the Association of Health Care Journalists in Chicago. After hearing his talk, I couldn’t wait to read more.

The checklist refers to 5 steps doctors can take to reduce the likelihood of patients getting serious infections from catheters placed in the ICU. One problem with Pronovost’s quintet is that it’s, well, unexciting. In his book Safe Patients, Smart Hospitals he reveals what a person shouldn’t forget before inserting an intravenous (IV) tube through a vein to the heart’s entryway:

1. wash hands with something like soap before the procedure;

2. set up a clean work area by covering the patient with a sterile drape and donning a gown, cap, mask and sterile gloves;

3. insert the catheter in a place other than the patient’s groin, if possible;

4. wipe down the patient’s skin with antiseptic fluid, chlorhexidine;

5. remove catheters that are no longer needed.

Pronovost, an intensive care specialist who holds an MD and a PhD in Public Health, first tested the checklist on his home turf, the surgical ICU at the Johns Hopkins Hospital in Baltimore, MD, in 2001. At the start, he distributed the list and asked ICU staff nurses to mark physicians’ compliance. It turned out the doctors skipped at least one step in over a third of central catheter placements. Next, he upped the list’s power by talking to Hopkins administrators. Nurses, they said, could call out a physician if they didn’t stick to the rules.

“This was revolutionary,” said Atul Gawande in the New Yorker.

What’s the big deal, you may wonder. It’s this – first, in the usual culture of medical practice, doctors don’t follow orders but give orders. And second, what’s implicit in the checklist is that physicians – even at one of the world’s most renowned medical facilities – are fallible to such a degree that their work can improve, and measurably so, by using something as ordinary as a checklist. It’s humbling.

“We don’t use checklists in health care because we still have his myth of perfection,” Pronovost said at the journalism conference.

In the year after Pronovost’s team implemented the checklist at Hopkins, the rate of central catheter infections there dropped from eleven percent to zero. As for how much good this did – the estimate runs at 43 infections spared, 8 deaths avoided and $2 million saved in one year at that hospital alone. The work expanded, soon to cover ICUs in most hospitals in the state of Michigan. There, after a lot of fuss, administrative hurdles and number crunching of results for some 375,757 catheter-days’ worth of infection data, the incidence of central line-associated bacterial infections snapped from 2.7, on average, for every 1000 days a patient was in a Michigan ICU with at least one central line, down to 0 (zero!).

These numbers are supported by impressive stats, with p-values falling below 0.002 in the original study. Estimates for the Keystone Initiative render some 1000 lives saved and $175 million in hospital costs reduced in a single year in Michigan. What’s more, all of this was accomplished without the use of expensive technology or additional ICU staffing.

This is a win/win intervention with huge implications. Every day some 90,000 people receive care in ICUs in North America. The annual incidence of catheter-related blood infections is 80,000 per year in the U.S.; the cost of treating each line infection runs around $45,000. In the U.S., we might save over $3 billion in expenses per year.

So why aren’t more hospitals and states adopting these and other, similar measures? Gawande addresses this, to some extent, in the New Yorker piece and in his book, The Checklist Manifesto. “There are hundreds, perhaps thousands, of things doctors do that are at least as dangerous and prone to human failure as putting central lines into I.C.U. patients,” he writes. “All have steps that are worth putting on a checklist and testing in routine care. The question – still unanswered – is whether medical culture will embrace the opportunity.”

Poka-yoke, a Japanese term for rendering a repetitive process mistake-proof, may be familiar to business students and corporate executives.  This concept, that simple strategies can reduce errors in highly complex works, is not the kind of thing most doctors pick up in med school. Rather, it remains foreign.

Pronovost is unusual because he examines health care delivery, in itself, rather than attempting an innovative cure for cancer or surgical method. His work just isn’t sexy enough to sell. I suspect that’s the reason he came to the health care journalism conference in Chicago and gave such an impassioned talk about the checklist, so that a few of us might help get the word out.

Things change, after all, and sometimes they do get better.

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Nice Nerds Needed

In last weekend’s edition of NPR’s Wait Wait…Don’t Tell Me!, host Peter Sagal asked a panelist about a serious problem facing the Pentagon: There’s a shortage of nerds, a.k.a. geeks.

Space Shuttle Atlantis (NASA image, Wikimedia Commons)

Happily, Houston Chronicle deputy editor and blogger Kyrie O’Connor came to the right answer.

On the quiz show, Sagal reported that Regina Dugan, head of DARPA (the Pentagon’s research arm and developer of the early Internet), recently testified before the House Armed Services Committee about her concern for our country’s most famous five-sided structure’s looming intellectual deficit.

“The decline in science education in this country means fewer nerds are being produced, a fact which has serious national security implications,” Sagal said in summary.

“Nerds molt into tech geeks. Tech geeks grow into scientists and scientists maintain the United States technical superiority,” he explained. No worries, though –

Sagal suggests the current nerd shortage will self-correct based on the predictable laws of high-school ecosystems. (To listen to his short description of this evolutionary process, check the track for Panel Round 2, after minute 4:48.)

Wired covered, earlier, the same story on DARPA’s looming technogeek shortage and Dugan’s forward-thinking statement on the matter:

…outlined her vision for the future of the Pentagon’s blue-sky research arm, with everything from plant-based vaccines to biomimetics making the short list. But none of it’s possible, she told the panel, without more investment in American universities and industry to cultivate the techies of the future…

So we lack sufficient math and science education to support the Pentagon’s needs for cutting-edge technology. And we all know that American businesses are losing out for the same reasons.

My concern is health, that some turned-on science and math-oriented kids should grow up and become physician-scientists or even plain-old, well-trained doctors who are good at interpreting graphs and applying detailed, technical information to patients with complex medical conditions. Last week I wrote that better education would improve health and medical care delivery in the U.S. This seems like an obvious point, but the more common discussion strikes on the need for math and science education to support hard technology in industry.

We’re facing a shortage of primary care physicians, oncologists and other doctor-types. Lots of clever and curious young people are turning away from medicine. The hours are too long, the pay’s too low, and the pressure is too great. If we want doctors who know what they’re doing, we should invest in their education and training, starting early on and pushing well past their graduation from med school.

Sure, we like physicians who are kind and honest people and can talk to them in ways they understand. This is crucial, but only to a point – we still depend on doctors to know their stuff.

I like doctors who are nice nerds. We need more of those, too.

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An Ordinary Day

If there’s one obvious thing I didn’t learn until I was well into my forties it’s this:

Don’t let a day go by without doing something you feel good about.

This message is not unusual, cryptic or even interesting. It’s simple, really so trite you could find it in most any “how having cancer changed my life” book available in bookstores and on-line.

Why say it again? Everyone knows we should relax and enjoy sunny weekend days like this.

Because it’s a reminder to myself, as much as for some readers and maybe a few fledgling doctors out there. One of my biggest regrets, during and after so many medical hurdles, is that I was overly ambitious. I am, probably still, one of those people who’s hard-wired to achieve. At work, when I was a young physician-hematologist-oncologist-cancer researcher-pregnant wife, I worked long, long hours. After dinner in our apartment, I’d stay up late, reading, and get up early enough to read the paper and have some breakfast before morning rounds. Later, as my career matured, I used extra hours for research, presentations, grant proposals and, of course, more reading. I loved my work as much as anyone I’ve ever known, wishing I could put more time into it, not less.

Illness places real limits on people’s capabilities. I refused to accept this. I just kept pushing. No excuses.

Looking back, I see that I should have slowed down earlier in my career and made more time for my family and for myself. I needed physical therapy and an occasional day off. Even while I had breast cancer, undergoing treatments, I worked in the clinic, took on administrative responsibilities at the hospital (in lieu of being on-call), and continued to write and review manuscripts, besides teach. After my back operation, a huge, painful and bloody affair, I returned to work and took call like everyone else. It took me too long to realize that I should pull back.

So I think it’s a lesson, or at least it’s one for me. It has to do with the Passover story of Exodus. Making sure to enjoy life, taking some time of each day and week to focus on what you choose, is the privilege of not being a slave.

An unfortunate reality is that many people work long hours because they must, due to financial necessity or because they have no choice. But for those who aren’t so strapped that they must work 16 hour days, who do it for pleasure as much as for wages or for riches, maybe it’s a reminder to take care. Sometimes it takes discipline to know when to shut out the light, or even call it quits. Less is more, sometimes even better.

It shouldn’t take a catastrophic illness to get this message through. Maybe just a good night’s sleep, or another sunny day tomorrow.

Take it easy.

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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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