Oh, No Methotrexate!

structure of MTX (PubChem; NCBI)

I was astonished to learn that methotrexate supplies are running short. This chemotherapy may soon be unavailable to patients who need it. And it’s not just kids with leukemia, as the Times story highlights effectively.

Methotrexate is an old, bread-and-butter cancer kind of drug, a basic ingredient in standard regimens for many tumor types. I’ve personally administered this medication to patients with breast cancer, lymphoma, leukemia, head and neck tumors, ovarian cancer, colon cancer and people whose tumor cells spread to the brain. Doctors prescribe this drug, also, in a few non-malignant conditions, like rheumatoid arthritis.

Methotrexate has been used in cancer wards for over 50 years. And like other beyond-patent meds, it’s become less profitable to manufacture MTX compared to much costlier new agents. Hard to perceive this shortage as anything but a tragedy – that the business of health care renders valuable, inexpensive drugs out of reach.

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Quote of the Day: On Death Panels and the Insurance Industry, From Dr. Donald Berwick

Dr. Donald Berwick left his position last week as head of CMS. He said this, as quoted in the WSJ’s Washington Wire, yesterday:

“Maybe a real death panel is a group of people who tell health care insurers that is it OK to take insurance away from people because they are sick or are at risk for becoming sick.”

I couldn’t agree with him more.

All for this week,

ES

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A Good Personal Health Record is Hard to Find

Over the weekend I developed another bout of diverticulitis. Did the usual: fluids, antibiotics, rest, avoided going to the ER, cancelled travel plans.

One of my doctors asked a very simple question: is this happening more frequently? The answer, we both knew, was yes. But I don’t have a Personal Health Record (PHR) that in principle, through a few clicks, would give a time-frame graph of the bouts and severity of the episodes over the past several years.

The last time this happened, and the time before that, I thought I’d finally start a PHR. Like most compulsive patients, I keep records about my health. In the folder in my closet in a cheap old-fashioned filing box, the kind with a handled top that flips open, I’ve got an EKG from 15 years ago, an OR report from my spine surgery, copies of lab results that the ordering physicians chose to send me, path reports from my breasts, a skin lesion or two, and, more recently a colonic polyp, bone density studies from 2004, EMGs and more, essentially miscellaneous results.

None of the records I have are digital.

A few years back I considered using Google Health. But their service, as I understood it, involved scanning documents and uploading them to the Cloud, or paying someone else to do so. That sounded like a hassle. But even had I done that, I wouldn’t have been able to, say, see a graph of my hemoglobin since 1986, or something as simple as my weight changes over time. When Google Health folded a few months back, I was disappointed. At the same time, I breathed a sigh of relief that I hadn’t invested my personal and limited energies into putting my records there.

But now what?

I searched for a PHR, again on-line, and found some commercial stuff, mainly targeting doctors’ offices and larger health care systems. Medicare’s information on Managing Your Health Information Online offers bullet-point explanations on Why Use PHRs?

But I needed no convincing. What I need is software, or a platform, that’s user-friendly and secure. Ideally mine would mesh with my physicians’ records, but my doctors use a variety of record systems. So it’s up to me to integrate the data, if anyone will. The problem is there’s little out there, as best I can tell, that’s intended for patients. Most IT companies are, for now, focused on getting doctors to sign on.

So I’ll start an Excel spreadsheet, today, on my PC. There must be a better way.

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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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Note to Government: Please Don’t Pull Back on Patient Safety Regulations

A few days ago I had a colonoscopy to evaluate some gastrointestinal problems. Subjective summary: Yuck. Downing 3 liters of Nu-Litely, a hyper-osmotic colonic cocktail prep, does not make for a pleasant Sunday afternoon, evening or night. As for the procedure itself, I don’t know how Katie Couric did it on TV.

But what made the procedure tolerable, and non-scary, and worthwhile, was that it was done by a careful, experienced gastroenterologist in a well-run facility. The outpatient unit where I had my colonoscopy employs reputable anesthesiologists and maintains functional, appropriate monitoring instruments and, should they be needed, life-saving equipment.

Why I mention this recent ickiness is this –

This morning’s paper reports that the U.S. administration plans cuts in hospital regulations:

… after concluding that the standards were obsolete or overly burdensome to the industry.

Kathleen Sebelius, the secretary of health and human services, said the proposed changes, which would apply to more than 6,000 hospitals, would save providers nearly $1.1 billion a year without creating any “consequential risks for patients.”

A few aspects of the proposed regulatory pull-back seem reasonable, like allowing hospitals to delegate more work to nurse-practitioners. But some of this regulatory reversal sounds dangerous:

…Other proposals would eliminate requirements for hospitals to keep detailed logs of infection control problems…

…Federal officials would also eliminate a detailed list of emergency equipment that must be available in the operating rooms of outpatient surgery centers. Such clinics would have leeway to decide what equipment was needed for the procedures they performed.

Fortunately, the administration is accepting public comments on this matter for 60 days. But they could make it easier. Instructions from the HHS press release involve a series of links:

To view the proposed and final rules, please visit: www.ofr.gov/inspection.aspx…Both proposals invite the public, including doctors, hospitals, patient advocates, and other stakeholders, to comment.  To submit a comment, visit www.regulations.gov, enter the ID number CMS-9070-P or CMS-3244-P, and click on “Submit a Comment.”

My position is that any lessening of infection control is a disservice to patients. As for monitoring of outpatient facilities where procedures are performed, it’s crucial; patients rely on maintenance of modern, clean and functional equipment in places where they receive medical care.

My bottom line: Patient safety should take precedence over cost-saving measures by the inspectors and the inspected.

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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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Reducing Costs by Better Integration of Palliative Care in Cancer Treatment

We’re up to point 9 on the list – and nearing the end – on Bending the Cost Curve in Cancer Care from the May 26 NEJM. The suggestion from Drs. Smith and Hillner is that doctors better integrate palliative care into usual oncology care.

The authors start this important section well:

We can reduce patients’ fears of abandonment by means of better-integrated palliative care. This topic is fraught with misunderstanding given the references to “death panels” during the recent debate concerning health care legislation…

Here they’re on target: Some patients think, mistakenly, that inclusion of palliative care in their treatment means their doctors are throwing in the towel. I’ve known some oncologists who think the same, who perceive palliative care as a last resort.

The truth is that palliative care, which aims to relieve symptoms, can be implemented at any point in the treatment of disease.

The authors go on to provide data that cancer patients who receive palliative care live just as long, or longer, than those who don’t, and that their medical bills are lower. The issue I have here is their choice of emphasis on a published study of the Aetna Compassionate Care Program in which nurses identified patients for palliative care by administrative claims, “thus bypassing the oncologist.” Evidently this strategy led to a doubling of hospice referrals and other possibly good effects.

Besides that the cited study was authored by employees of an insurance company, which I find unpalatable, the concept of having nurses do the referrals deflects the issue: that oncologists talk about palliative care with their patients, directly. Relying on nurses to carry out these conversations would, understandably, contribute to a sense of abandonment, even if the nurses do the job perfectly. A critical role oncologists is to communicate about treatment care options, part of the cognitive work considered in point 8 of this discussion.

But the main idea, that doctors should integrate palliative care into their cancer patients’ treatment planning, earlier, and as a supplement – and not a replacement – for potentially curative or tumor-shrinking strategies, is right on.

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Implications of the Oncology Drug Shortage

Today’s New York Times features an op-ed by Dr. Ezekiel Emanuel, on the oncology drug shortage. It’s a serious problem that’s had too-little attention in the press:

Of the 34 generic cancer drugs on the market, as of this month, 14 were in short supply. They include drugs that are the mainstay of treatment regimens used to cure leukemia, lymphoma and testicular cancer.

Emanuel considers that these cancer drug shortages have led to what amounts to an accidental rationing of cancer meds. Some desperate and/or influential patients (or doctors or hospitals) get their planned chemo and the rest, well, don’t.

Unfortunately, what’s behind this harmful mess is neither a dearth of ingredients nor unsolvable problems at most of the manufacturing plants. Rather, the missing chemotherapies are mainly old and inexpensive, beyond their patent protection, i.e. they’re not so profitable, and not high-priority.

Emanuel proposes that the prices of old oncology meds – drugs that can cost as little as $3 per dose – be raised so that the companies will make it their business to provide them. This seems like a reasonable idea, although I find it a bit too compromising. Why should we raise the costs of any medications above what’s necessary for their manufacture and distribution?

The underlying problem is that we rely on a profit motive to deliver needed health care in the U.S. This kind of financial incentive, even if you find it morally acceptable, doesn’t seem to be working.

That’s why I favor scrapping the system – in which insurance companies siphon off some 30 percent or so of expenses, and pharmaceutical companies take another big cut – and giving patients the care they need, profits aside.

The health care reform bill of 2010 didn’t go far enough. Not even close.

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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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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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Getting the Blood Tests Right at the Phlebotomy Center

Last week I had some blood tests taken before a doctor’s appointment. I went to a commercial lab facility, one of several dozen centers for collecting specimens have opened up in otherwise-unrented Manhattan office spaces lately.

I have to say I really like getting my blood work done at this place, if and when I need blood tests. And it’s gotten better over the past few years.

First, pretty much all they do in the lab center is draw blood and collect other samples based on a doctor’s orders. So the people who work there are practiced at phlebotomy, because it’s what they do most of the time. The guy who drew my blood last week did the same a year or two ago, and he was good at it back then. He used a butterfly needle and I didn’t feel a thing.

Second, they seem organized and careful about matching specimens to patients. The man who drew my blood didn’t just confirm my name and date of birth, but he had me sign a form, upon my inspecting the labels that he immediately applied to the tubes of blood he drew from my right arm, that those were indeed my samples and that I was the patient named Elaine Schattner with that date of birth and other particulars.

Sounds like a paperwork hassle for the phlebotomist? You might say this is time-costly for his employer and for me, the patient. Maybe, but I’d rather have my blood samples drawn in a place ordered like that, where it’s less likely that my tube of serum will be accidentally switched with another person’s, generating error, confusion, possible unnecessary worry, further hassle and costs.

I have a strong preference for not cutting corners when it comes to my health care. I’m glad there are more regulations of clinical laboratories, enforced mainly through CLIA. In a busy physician’s office or other medical facility where doctors and nurses and technicians are strapped for time, and too-often plainly tired, the more essential are these quality checks.

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In Defense of Primary Care, and of Sub-Sub-Sub-Specialists

An article in the March 24 NEJM called Specialization, Subspecialization, and Subsubspecialization in Internal Medicine might have some heads shaking: Isn’t there a shortage of primary care physicians? The sounding-board piece considers the recent decision of the American Board of Internal Medicine to issue certificates in two new fields: (1) hospice and palliative care and (2) advanced heart failure and plans in-the-works for official credentialing in other, relatively narrow fields like addiction and obesity.

The essay caught my attention because I do think it’s true that we need more well-trained specialists, as much as we need capable general physicians. Ultimately both are essential for delivery of high-quality care, and both are essential for reducing health care errors and costs.

Primary care physicians are invaluable. It’s these doctors who most-often establish rapport with patients over long periods of time, who earn their trust and, in case they should become very ill, hold their confidence on important decisions – like when and where to see a specialist and whether or not to seek more, or less, aggressive care. A well-educated, thoughtful family doctor or internist typically handles most common conditions: prophylactic care including vaccinations, weight management, high blood pressure, diabetes, straightforward infections – like bacterial pneumonia or UTIs, gout and other routine sorts of problems.

On the other hand, specialists can be lifesaving when highly-detailed expertise matters. There are limits to how much a general internist knows about chemotherapy, for example. Even within the field of medical oncology, a subspecialty of internal medicine, there are doctors who only see patients with particular kinds of cancers. When I had breast cancer, for example, I chose an oncologist whose practice consists almost entirely of patients with breast cancer and related diseases. If someone in my family has a lymphoma, I’d advise them to consult with someone who, for the most part, patients with lymphoma and similar disorders. Why? Because each of these cancers represent a complex group of malignancies, and successful therapy depends in part on the doctor’s familiarity with each of the specific subtypes and the relevant, current data for those. Treatment of lung cancer involves choosing among a different set of drugs than would be considered for brain or kidney cancer.

I mention oncology, here, because I’m most familiar with this field. But the same holds, for example, in the subspecialty of Infectious Diseases: knowing about all the new HIV drugs, in pregnant women, children and adults, involves a different set of knowledge than knowing about parasites in the tropics, and that differs from knowing about viral and other, unusual infections in patients are immunocompromised after kidney, heart or lung transplants.

In each of these settings, expertise can reduce errors – because specialists are more likely, in the first place, to establish a correct diagnosis and, next, to prescribe the right therapy based on the best evidence available.

The same holds for other medical specialties, apart from Internal Medicine. As I’ve described before, the radiologist who interpreted my routine mammogram and follow-up sono was a breast imaging specialist. The orthopedist who reconstructed my spine is a scoliosis spine surgeon. I am confident that I wouldn’t be here and feeling as well as I do if it weren’t for their expertise.

You could argue that it’s impossible to provide these kinds of sub-sub-specialists to people in rural areas, or that it’s too expensive, but I don’t think either of these factors should be limiting. To a large extent, experts might work with primary care providers and communicate with patients via Telemedicine and Skype-like technologies. As for surgical subspecialties, it may be that patients would find it worthwhile to travel to a regional center where a specialized procedure is done routinely, as opposed to having an operation in a local hospital where the doctors perform a certain kind of surgery – say a laparoscopic splenectomy, for example – only a few times each year.

There’s a tradeoff, as discussed in the NEJM piece, between increasing use of specialists and fragmentation of care. I think this concern is legitimate, based on my experiences practicing medicine and as a patient. But I do think we need specialists, and sub-specialists if we want doctors who can answer their patients’ questions, i.e. who really know what they’re doing.

I was a bit surprised that the article mentions a survey of physicians in which the majority of respondents reported that “professional image” was the primary reason for seeking subspecialty credentials. While this may be true, I don’t think doctors’ motivation matters in this. From the public’s perspective, what’s important is that hand surgeons know how to do hand surgery, and that a heart specialist knows how to interpret an echocardiogram, and that the hospitals where they work not let them practice if they’re not appropriately credentialed.

In cutting health care costs, or in trying to so, I don’t think it makes sense to reduce the number of physicians or to short-cut their educations by way of 3-year medical schools. Rather we need well-trained primary care doctors we can rely on, who know the limits of their knowledge as much as they understand medicine, and top-notch specialists, both.

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Radiologists’ Experience Matters in Mammography Outcomes

There’s a new study out on mammography with important implications for breast cancer screening. The main result is that when radiologists review more mammograms per year, the rate of false positives declines.

The stated purpose of the research,* published in the journal Radiology, was to see how radiologists’ interpretive volume – essentially the number of mammograms read per year – affects their performance in breast cancer screening.  The investigators collected data from six registries participating in the NCI’s Breast Cancer Surveillance Consortium, involving 120 radiologists who interpreted 783,965 screening mammograms from 2002 to 2006. So it was a big study, at least in terms of the number of images and outcomes assessed.

First – and before reaching any conclusions – the variance among seasoned radiologists’ everyday experience reading mammograms is striking. From the paper:

…We studied 120 radiologists with a median age of 54 years (range, 37–74 years); most worked full time (75%), had 20 or more years of experience (53%), and had no fellowship training in breast imaging (92%). Time spent in breast imaging varied, with 26% of radiologists working less than 20% and 33% working 80%–100% of their time in breast imaging. Most (61%) interpreted 1000–2999 mammograms annually, with 9% interpreting 5000 or more mammograms.

So they’re looking at a diverse bunch of radiologists reading mammograms, as young as 37 and as old as 74, most with no extra training in the subspecialty. The fraction of work effort spent on breast imaging –presumably mammography, sonos and MRIs – ranged from a quarter of the group (26%) who spend less than a fifth of their time on it and a third (33%) who spend almost all of their time on breast imaging studies.

The investigators summarize their findings in the abstract:

The mean false-positive rate was 9.1% (95% CI: 8.1%, 10.1%), with rates significantly higher for radiologists who had the lowest total (P = .008) and screening (P = .015) volumes. Radiologists with low diagnostic volume (P = .004 and P = .008) and a greater screening focus (P = .003 and P = .002) had significantly lower false-positive and cancer detection rates, respectively. Median invasive tumor size and proportion of cancers detected at early stages did not vary by volume.

This means is that radiologists who review more mammograms are better at reading them correctly. The main difference is that they are less likely to call a false positive. Their work is otherwise comparable, mainly in terms of cancers identified.**

Why this matters is because the costs of false positives – emotional (which I have argued shouldn’t matter so much), physical (surgery, complications of surgery, scars) and financial (costs of biopsies and surgery) are said to be the main problem with breast cancer screening by mammography. If we can reduce the false positive rate, BC screening becomes more efficient and safer.

Time provides the only major press coverage I found on this study, and suggests the findings may be counter-intuitive. I guess the notion is that radiologists might tire of reading so many films, or that a higher volume of work is inherently detrimental.

But I wasn’t at all surprised, nor do I find the results counter-intuitive: the more time a medical specialist spends doing the same sort of work – say examining blood cells under the microscope, as I used to do, routinely – the more likely that doctor will know the difference between a benign variant and a likely sign of malignancy.

Finally, the authors point to the potential problem of inaccessibility of specialized radiologists – an argument against greater requirements, in terms of the number of mammograms a radiologist needs to read per year to be deemed qualified by the FDA and MQSA. The point is that in some rural areas, women wouldn’t have access to mammography if there’s more stringency on radiologists’ volume. But I don’t see this accessibility problem as a valid issue. If the images were all digital, the doctor’s location shouldn’t matter at all.

—-

*The work, put forth by the Group Health Research Institute and involving a broad range or investigators including biostatisticians, public health specialists, radiologists from institutions across the U.S., received significant funding from the ACS,  the Longaberger Company’s Horizon of Hope Campaign, the Breast Cancer Stamp Fund, the Agency for Healthcare Research and Quality (AHRQ) and the NCI.

**I recommend a read of the full paper and in particular the discussion section, if you can access it through a library or elsewhere. It’s fairly long, and includes some nuanced findings I could not fully cover here.

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A Reversal on End-of-Life Planning

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

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

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

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

Med­line­Plus on Advanced Direc­tives;

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

Medicare on Preparing for Your Future Health Care Needs

Fam­ily Care­giver Alliance on End-of-Life Choices

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Watching the Happy Hospitalist’s Xtranormal Videos

Some weeks ago I discovered Happy’s hilarious Xtranormal videos on his anonymous blog. Yesterday I laughed watching the Hospitalist vs the ER:


I can’t tell you much about who the Happy Hospitalist is. His is one of the few anonymous blogs I read. Based on the apparent relevance of cars and parking lots in his everyday life, I doubt he’s anywhere close to Manhattan. On politics – a tangent on the said Hospitalist’s site, most often I’m not on the same page. But on the ins and outs, and ups and downs of hospital care and personalities at work, most often he’s spot on – with instructive, occasionally deep, specifics and humor.

At the footer of Happy’s blog, beneath an image with a picture of two perky dogs in a vehicle, a caption reads: “IF YOU ARE READING THIS, YOU NEED TO FIND SOMETHING ELSE TO DO. GO SPEND TIME WITH YOUR FAMILY.”

Yes.

Xtranormal’s mission is to bring movie-making to the people, according to its website. (I aspire to try the “text to movie” function after I’ve published my first book, in 201?)

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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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The Cost of Room Service and Other Hospital Amenities

A perspective in this week’s NEJM considers the Emerging Importance of Patient Amenities in Patient Care. The trend is that more hospitals lure patients with hotel-like amenities: room service, magnificent views, massage therapy, family rooms and more. These services sound great, and by some measures can serve an institution’s bottom line more effectively than spending funds on top-notch specialists or state-of-the-art equipment.

Thinking back on the last time I visited someone at Sloan Kettering’s inpatient unit, and I meandered into the bright lounge on the 15th floor, stocked with books, games, videos and other signs of life, I thought how good it is for patients and their families to have a non-clinical area like this. The “extra” facility is privately-funded, although it does take up a relatively small bit of valuable New York City hospital space (what might otherwise be a research lab or a group of nice offices for physicians or, dare I say, social workers) seems wonderful.

If real health care isn’t an even-sum expense problem, I see no issue with this kind of hospital accoutrement. As for room service and ordering oatmeal for breakfast instead of institutional pancakes with a side of thawing orange “juice,” chicken salad sandwiches, fresh salads or broiled salmon instead of receiving glop on a tray, that’s potentially less wasteful and, depending on what you choose, healthier. As for yoga and meditation sessions, there’s rarely harm and, maybe occasionally, good (i.e. value).

But what if those resources draw funds away from necessary medicines, better software for safer CT scans and pharmacies, and hiring more doctors, nurses or aides? (I’ve never been in a hospital where the nurses weren’t short-staffed.) As for employees who clean – hospital floors, nursing stations, patients’ TV remotes, IV poles, computer station keyboards and everything else that’s imperfect and unsterile, they should get more funding, everywhere. Clerks and transport workers are frequent targets in hospital layoffs, but they’re needed just the same.

Two years ago when a family member was hospitalized, his doctor – a senior cardiologist – personally wheeled him in the stretcher from the x-ray area back to the emergency room bay where he waited for a room, so that he wouldn’t spend more than the half hour or so he’d already been in the hallway, after the film was taken, waiting for the escort service. What’s wrong is not so much that the physician helped with a menial task that isn’t his job; he’s a really nice and caring sort, and I believe he didn’t mind, really, except that he does have a wife and family at home who surely were waiting on that day.

The cardiologist might have used that time, instead, to examine more closely someone’s neck veins or heart sounds, or spent a few more minutes reading a journal article, which would make it more likely he’ll make the right recommendation to his patients about, say, a drug for congestive heart failure or a new blood thinner. We can’t short-change hospital workers in such a way that physicians fill in on ordinary tasks because there’s no one else to perform those, while patients get first-class meals and art classes to make them happier.

I’m reminded of boarding airplanes. I fly coach, and as I pass through the first class section I often think how nice it would be to sit in front and have pleasant flight personnel attend my every need to maximize my comfort during what’s typically a miserable trip. But then, I’d be paying perhaps $3,000 instead of $680 for the same flight.

As passengers, maybe we’re not so discerning about our pilots or the model of airbus as we should. A pleasant, cheery place isn’t always the safest.

In the NEJM piece, Goldman and colleagues write:

…Why do amenities matter so much? Perhaps patients simply don’t understand clinical quality. Data on clinical quality are complex, multidimensional, and noisy, and they have only recently become systematically available to consumers. Consumers may be making choices on the basis of amenities because they are easier to understand.

The authors note the potential value of amenities in patients’ experiences and outcomes:

One could argue that they’re an important element of patient-centered care. If amenities create environments that patients, providers, and staff members prefer, then providers and staff members may give better care and service in those environments and patients may have better health outcomes.

Amenities are costly, but they attract patients:

… the value of amenities is important because our health care system currently pays for them. Under its prospective payment system… Each hospital receives the same amount of reimbursement for each patient with a given diagnosis and is free to decide what mix of resources to devote to clinical quality and what to spend on amenities. In our research, we found that improvements in amenities cost hospitals more than improvements in the quality of care, but improved amenities have a greater effect on hospital volume.

I’ll remind my readers that health care costs in the U.S. total over $2.3 trillion per year, and that number is growing.

Hospital amenities are really nice, and I believe they can help patients heal. But I don’t know if it’s right to spend limited health care dollars on more than essentials.

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No Quick Fix

On History and Health Riffs in the musical, Bloody Bloody Andrew Jackson:

“If it’s chafed, put some lotion on it.”

– some practical advice, offered by the character portraying Andrew Jackson, speaking toward the audience in the last scene of Bloody Bloody Andrew Jackson, a play written and directed by Alex Timbers

Yesterday I had occasion to see the outrageous politicoemo-rock musical, Bloody Bloody Andrew Jackson, which recently moved to Broadway’s Bernard B. Jacobs Theatre. The production focuses on the life and times of the 7th President of the United States.

Now, Old Hickory comes on like a rock star. The story is narrated, in part, by an excitable, graying Jackson groupie who bumps around the stage in a motorized wheelchair. A wild and rattling cast sets the thing’s tone in a startling first number, “Populism, Yea, Yea!” An early review of this musical, toward the end of its early 2008 LA run, cites these lyrics:

Sometimes you have to take the initiative.
Sometimes your whole family dies of cholera.
Sometimes you have to make your own story.
Sometimes you have to shoot the storyteller in the neck.
Sometimes you have to take back the country…

(These words antedate the Tea Party, to which the play vigorously alludes in its current form.)

You get the idea: it’s lively, a bit disjointed and politically relevant. And fun. It messes with the facts, and is tangentially rife with medical topics:

In the play, Jackson’s father, upon witnessing the whoosh and arrow-in-her-back slaying of Jackson’s mother in a backwoods cabin somewhere in South Carolina or Tennessee, immediately and without hesitation attributes her death to cholera. A moment later, he and a cheery cobbler are felled by similar instruments. The future President Andrew Junior, who’s playing with toy cowboys and Indians while both of his parents are shot dead in this life-motivating scene of pseudo-history, refers later to his parents’ deaths from cholera.

Most historical sources and Jackson’s Tennessee home’s current website, attribute the mother’s death to cholera. According to a scholarly review of cholera epidemics in the 19th Century, the disease didn’t appear in North America until after 1831 or so. A fascinating, original New York Times story details the ravaging effects of this illness in Tennessee in 1873, but that would be long after Jackson’s death in 1837.

An unexpected medical writer’s gem of a song, “Illness As Metaphor,” cuts to the heart with a message about blood, symbolism, love and Susan Sontag’s classic essays on the meaning of tuberculosis and cancer in literature and in life. The lyrics of the song from Bloody, Bloody Andrew Jackson are hard-to-find on-line, but you can get it through iTunes, by which I found these words:

A wise woman once wrote that illness is not metaphor.
So why do I feel sick when I look at you?
There is this illness in me and I need to get it out, so when I bleed
It’s not blood, it’s a metaphor for love.
These aren’t veins just the beating of my heart.
This fever isn’t real it represents how I feel…

You can see a Spanish-sung, sickly romantic version on a YouTube video:

I’m not sure how Susan Sontag would feel about emo-rock in general and about this song in particular, but I should save that subject for some intense, future writing project –

A few other medical digs include mention of Jackson’s hepatitis – acquired on “the battlefield,” as he explains to his admirers, syphilis – a killer of Indians and, consistent with the play’s hemi-modern approach, Valtrex – which some of the prostitute-turned government advisees run to get when it’s given for free.

All in all, it’s a terrific play about Americans, Manifest Destiny, populism, anti-elitism, economic frustration, anger toward foreigners, fear of terrorism, emotions and the founding of the Democratic Party.

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Tomorrow is Election Day. Remember to vote!

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Copiapó Dreaming – The Copper Miners’ Tale

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

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

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

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

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

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

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

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It’s Not About the Money

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

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

The Wealth of Nations (1776)

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

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

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

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

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

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

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

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

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