The Loss of Elizabeth Edwards

Dear Readers,

I am sad to learn of the death of Elizabeth Edwards, who died earlier today of metastatic breast cancer at the age of 61. She has taught countless people about what it’s like to live with cancer.

My thoughts are with her family now.

-ES

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Notes On a New Kind of Anticoagulant

On the hematology front –

Last weekend at the annual meeting of the American Society of Hematology (ASH), researchers presented data on a new kind of blood thinner. Rivaroxaban (Xarelto) is a pill that works by blocking the activated form of human clotting factor X (Xa). The NEJM published the EINSTEIN* findings on-line ahead of print, coincident with the presentation.

The research includes two reported trials. In the first, an open-label randomized study of 3449 patients with acute deep venous thrombosis (DVT), subjects received either rivaroxaban pills or a standard treatment regimen starting with an injected blood thinner (enoxaparin) followed by an oral Vitamin K antagonist, like coumadin.  The main findings in this Acute DVT Study was that the new drug, rivaroxaban, is as good (“non-inferior”) in terms of preventing recurrent clot as is the older regimen and bears a similar safety profile.

The second, parallel EINSTEIN-extension trial involved randomization of 1197 patients after treatment for acute DVT to take oral rivaroxaban or a placebo for an additional 6-12 month period. In this study, patients taking the experimental anticoagulant had fewer blood clots than those on placebo. Unsurprisingly, there was a slightly increased reported incidence of major bleeding (4 patients, 0.7%) in patients on the blood thinner relative to placebo (0 patients, 0%). This difference was not statistically significant.

Both trials were funded by Bayer Schering Parma and Ortho-McNeil. According to a Bayer press release of last August: “If approved by the FDA, Ortho-McNeil, a division of Ortho-McNeil-Janssen Pharmaceuticals, Inc. (a Johnson & Johnson Company), will commercialize rivaroxaban in the U.S.”

What’s good, clearly, is that several effective anticoagulants are emerging as alternatives to heparin, which must be injected, and coumadin. In October the FDA approved the first of these drugs, dabigatran (Pradaxa), for prevention of stroke in patients with atrial fibrillation. This was big news in cardiology circles, with reason. Another area of use for these agents would be in prophylaxis for DVT in patients who undergo hip replacement and some other kinds of major surgery.

In my experience as a hematologist, and as a patient who’s had a DVT, I know that coumadin dosing is not straightforward. Because the therapeutic dose varies so much among individuals in ways that depend on genetic factors and potentially change over time with diet, patients need provide initially frequent and then periodic blood samples. The repeated blood tests don’t require large amounts of blood, but they’re annoying and costly. What’s more, the hassle – pain of blood draws, driving or walking to a clinic for sample taking, waiting for results – interferes with quality of life.

Giving intravenous blood thinners is not convenient either, as these need carefully-monitored infusion of the drug, and it’s easy to overshoot or undershoot the dose. Injectable blood thinners like low molecular weight heparin are easier to dose than conventional heparin, but still it’s pretty unpleasant for a patient to have to inject herself once or twice a day with a needle.

Soon we’ll see what the FDA says about rivaroxaban. I’m not excited about this one agent as opposed to any other, but I am enthusiastic about this new class of drugs. These should benefit people whose medical conditions warrant the use of blood thinners.

*The “EINSTEIN” investigators are based in the Netherlands and are listed in the original paper. It’s hard to find an explanation of the acronym.

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

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

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

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

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

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

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

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

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

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

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

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

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

I could go on with this list –

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

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

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Progress at the Orthopedist’s Office

This morning I visited my spine surgeon for a check-up. What’s nice is the feeling I have about his office staff: they’re pleasant, gentle people who seem always eager in their work, and that helps. I got big hugs from his nurse, an office manager and biller. Even the x-ray technician seemed glad to assist me.

The orthopedist is a wonderful man whom I credit for my continued capacity to walk. All good –

For the first time in 12 years of visits to his office, the x-ray images of my bones were represented on a digital device, as opposed to old-fashioned, plane films clipped onto a light box. The surgeon was able to enlarge and examine more carefully an area of concern without my being exposed to additional rads. Even more fortunately, the fusion looks steady.

Once I arrange to get a copy of the digital image (a hassle with inexplicable, inexcusable high costs, as per hospital protocol), I can include that in my electronic personal health record (PHR), one of my planned projects for the year ahead.

Progress in health care is painstakingly slow. Today I’m encouraged.

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A Video About a Patient Who Might Have Too Much Information

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

The Too Informed Patient from Marketplace on Vimeo.

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

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

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

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

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

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

My reaction is sadness. Am I the only one?

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

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