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Guest Blog: Illness is Not Discrete. On Feeling Sick, and Not Knowing What’s Next

Elaine Schattner
Wednesday, April 25th, 2012

Elaine Schattner, M.D., is a trained oncol­ogist, hema­tol­ogist, edu­cator and jour­nalist who writes about med­icine. Her views on health care are informed by her expe­ri­ences as a patient with sco­l­iosis since childhood and other con­di­tions including breast cancer. She is a Clinical Asso­ciate Pro­fessor of Med­icine at Weill Cornell Medical College, where she teaches part-time. She holds an active New York State medical license and is board-certified in the Internal Med­icine sub­spe­cialties of Hema­tology (blood dis­eases) and Oncology (cancer medicine). She writes regularly on her blog, Medical Lessons. You can follower her on Twitter @ElaineSchattner.

A few days ago, the room around me started spinning.  I wished I were Jack Kerouac, so it wouldn’t matter if my thoughts were clear but that I tapped them out.  Rat tat tat. Or Frank Sinatra with a cold. You’d want to know either of those guys, in detail. Up-close, loud, even breathing on you. You’d hire ‘em. Because even when they’re down, they’re good. Handsome. Cool, slick, unforgettable. Illness doesn’t capture or define them.

Last Tuesday, I was feeling great. I went to the National Press Club  for the first time and was excited about some presentations I heard. I took careful notes and intended, eventually, to share those with commentary. It was a sunny day. I bought some groceries, planned a bunch of posts and to finish a freelance piece. In the evening I had dinner with my husband, and it seemed like my life was on track.

The rash was the first thing. Just some red, itchy bumps on the back of my neck. And then fatigue. Not just a little tired, but like I couldn’t write a sentence. And since then I’ve been in the center of a kaleidoscope, everything moving clockwise around my head. It’s not bright purple or hot pink and blue and stained glass-green kinds of colors circling, but the drab objects in the bedroom: the lamp, the shadow cast by the top of the door, the rows of light through the blinds, the brown and beige sheets, the back cover of last month’s Atlantic and my reading glasses on the nightstand, the gray bowl I’ve placed at hand, just in case I barf again. Walking is tricky. I’m dehydrated and weak, and my vision’s blurred.

This is not a pretty scene, if you could sf you could see it. And that’s the thing. The point.

Because in my experience, which is not trivial, people on both sides of illness – professionals and people you just know — are drawn to healthy people. A broken arm, a low-stage breast cancer that’s treated and done with, a bout of pneumonia – these are things that a career can afford, an editor can handle, friends can be supportive. But when you have one thing, and then another, and then another, it gets scary, it weighs you down. Just when you start feeling OK, and confident, something happens and you’re back, as a patient.

In the apartment on a spring day, with fever and fatigue, I’ve got no choice. I am not a consumer now. Not even close. That is my role, maybe, when I go to the dentist and decline having x-rays or my teeth whitened. No choice, except if I go to a hospital, to have a bunch of blood drawn and my husband would fill in the forms before the doctors who don’t know me in this city inform me I’ve got a viral infection, and labrynthitis as I’ve had a dozen times before, all of a sudden, disabling. Nothing to do but rest and hydrate. And wish I’d gotten some other work done, but I couldn’t.

I’ve got to go with it, my health or illness, be that as it is. No careful critiques of comparative effectiveness research today. No reading about the Choosing Wisely  guidelines. No post on Dengue, as I’d planned for yesterday.  Like many people with illnesses — and many with far more serious conditions — I’m disappointed. Maybe because I was sick as a child and missed half of tenth grade, I have trouble accepting these kinds of disruptions. Illness represents a loss of control, besides all the physical aspects.

I might try to watch TV, but more likely I’ll just fall sleep again. That happened yesterday. And for those of youhealth IT  or gadget guys  reading, who talk about smart phones and how useful they are for patients seeking info, or maybe even checking vitals, I’ll say this: I’m just glad I’ve got such a device, simply that I can call for help, that I can be in touch,  call my doctor and family. That makes being sick less scary.

This is a drag of a post, but it’s real. No point in blogging if I don’t say it like it is, what I am. If nothing else, this proves I’m alive.  So there!

Better tomorrow.

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Guest Blog: What Does it Mean if Primary Care Doctors Get the Answers Wrong About Screening Stats?

Elaine Schattner
Thursday, March 22nd, 2012

Elaine Schattner, M.D., is a trained oncol­ogist, hema­tol­ogist, edu­cator and jour­nalist who writes about med­icine. Her views on health care are informed by her expe­ri­ences as a patient with sco­l­iosis since childhood and other con­di­tions including breast cancer. She is a Clinical Asso­ciate Pro­fessor of Med­icine at Weill Cornell Medical College, where she teaches part-time. She holds an active New York State medical license and is board-certified in the Internal Med­icine sub­spe­cialties of Hema­tology (blood dis­eases) and Oncology (cancer medicine). She writes regularly on her blog, Medical Lessons. You can follower her on Twitter @ElaineSchattner.

Recently the Annals of Internal Med­icine pub­lished a new report on how doctors (don’t) under­stand cancer screening stats. This unusual paper reveals that some primary care physi­cians – a majority of those who com­pleted a survey — don’t really get the numbers on cancer inci­dence, 5-​​year sur­vival and mortality

An accom­pa­nying edi­torial by Dr. Vir­ginia Moyer, a Pro­fessor of Pedi­atrics and current Chair of the USPSTF, drives two mes­sages in her title, What We Don’t Know Can Hurt Our Patients: Physician Innu­meracy and Overuse of Screening Tests. Dr. Moyer is right, to a point. Because if doctors who counsel patients on screening don’t know what they’re speaking of, they may provide mis­in­for­mation and cause harm. But she over­states the study’s impli­ca­tions by empha­sizing the “overuse of screening tests.”

The report shows, plainly and painfully, that too many doctors are con­fused and even ignorant of some sta­tis­tical con­cepts. Nothing more, nothing less. The new findings have no bearing on whether or not cancer screening is cost-​​effective or life-​​saving.

What the study does suggest is that med school math require­ments should be upped and rig­orous, counter to the trend. And that we should do a better job edu­cating stu­dents and reminding doctors about rel­evant con­cepts including lead-​​time bias, over­diag­nosis and – as high­lighted in two valuable blogs just yes­terday, NPR Shots and Reporting on Health Antidote — the Number Needed to Treat, or NNT.

The Annals paper has yielded at least two unfor­tunate out­comes. One, which there’s no way to get around, is the clear admission of doctors’ con­fusion. In the long term, this may be a good thing, like admitting a medical error and then having QA improve as a con­se­quence. But mean­while some doctors at their office desks and lecterns don’t realize what they don’t know, and there’s no clear remedy in sight.

Dr. Moyer, in her edi­torial, writes that medical journal editors should care­fully monitor reports to ensure that results aren’t likely mis­in­ter­preted. She says, in just one half-​​sentence, that medical edu­cators should improve teaching on this topic. And then she directs the task of stats-​​ed to media and jour­nalists, who, she advises, might follow the lead of the “watchdog” Health­News­Review. I don’t see that as a solution, although I agree that jour­nalists should know as much as pos­sible about sta­tistics and limits of data about which they report.

The main problem elu­ci­dated in this article is a failure in medical edu­cation. The cat’s out of the bag now. The WSJ Heath Blog covered the story. Most doctors are baffled, says Fox News. On its home page, the Dart­mouth Institute for Health Policy & Clinical Practice links to a Reuters article that’s landed on the NIH/​NLM-​​sponsored Med­linePlus (accessed 3/15/12). This embar­rassment  further com­pro­mises indi­viduals’ con­fi­dence in doctors they would and some­times need rely on.

We lie, we cheat, we steal, we are confused… What else can doctors do wrong?

The second, and I think unnec­essary, prob­lematic outcome of this report is that it’s been used to argue against cancer screening. In the edi­torial Dr. Moyer indulges an ill-​​supported statement:

…several analyses have demon­strated that the vast majority of women with screen-​​detected breast cancer have not had their lives saved by screening, but rather have been diag­nosed early with no change in outcome or have been overdiagnosed.

The problem of over­diag­nosis, which comes up a lot in the paper, is over-​​emphasized, at least as it relates to breast cancer, colon cancer and some other tumors. I  have never seen a case of van­ishing invasive breast cancer. In younger women, low-​​grade invasive tumors are rel­a­tively rare. So over­diag­nosis isn’t applicable in BC, at least for women who are not elderly.

In the second para­graph Dr. Moyer out­lines, in an unusual mode for the Annals, a cabal-​​like screening lobby:

…pow­erful non­medical forces may also lead to enthu­siasm for screening, including financial interests from com­panies that make tests or testing equipment or sell products to treat the con­di­tions diag­nosed and more subtle financial pres­sures from the clin­i­cians whose daily work is to diagnose or treat a con­dition. If fewer people are diag­nosed with a disease, advocacy groups stand to lose con­tri­bu­tions and aca­d­emics who study the disease may lose funding. Politi­cians may wish to appear responsive to pow­erful special interests…

While she may be right, that there are some influ­ential and self-​​serving interests and cor­po­ra­tions who push aggres­sively, and maybe too aggres­sively for cancer screening, it may also be that some forms of cancer screening are indeed life-​​saving tools that should be valued by our society. I think, also, that she goes too far in insin­u­ating that major advocacy groups push for screening because they stand to lose funding.

I’ve met many cancer agency workers, some founders, some full-​​time, paid and vol­unteer helpers – with varied pri­or­ities and goals – and I hon­estly believe that each and every one of those indi­viduals hopes that the problem of cancer killing so many non-​​elderly indi­viduals in our society will go away. It’s beyond reason to suggest there’s a hidden agenda at any of the major cancer agencies to “keep cancer going.” There are plenty of other worthy causes to which they might give their time and other resources, like edu­cation, to name one.

Which leads me back to the original paper, on doctors’ limited knowledge –

As I read the original paper the first time, I con­sidered what would happen if you tested 412 prac­ticing primary care physi­cians about hepatitis C screening, strains, and whether or not there’s a benefit to early detection and treatment of that common and some­times patho­logic virus, or about the use of aspirin in adults with high blood pressure and other risk factors for heart disease, or about the risks and ben­efits of drugs that lower cholesterol.

It seems highly unlikely that physi­cians’ uncer­tainty is limited to con­ceptual aspects of cancer screening stats. Knowing that, you’d have to wonder why the authors did this research, and why the edi­torial pushes so hard the message of over-​​screening.

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Guest Blog: On Alcohol and Breast Cancer, Guilt, Correlations, Fun, Moderation, Doctors’ Habits, Advice and Herbal Tea

Elaine Schattner
Friday, November 11th, 2011

Elaine Schattner, M.D., is a trained oncol­ogist, hema­tol­ogist, edu­cator and jour­nalist who writes about med­icine. Her views on health care are informed by her expe­ri­ences as a patient with sco­l­iosis since childhood and other con­di­tions including breast cancer. She is a Clinical Asso­ciate Pro­fessor of Med­icine at Weill Cornell Medical College, where she teaches part-time. She holds an active New York State medical license and is board-certified in the Internal Med­icine sub­spe­cialties of Hema­tology (blood dis­eases) and Oncology (cancer medicine). She writes regularly on her blog, Medical Lessons. You can follower her on Twitter @ElaineSchattner.

horizontalline

Few BC news items irk some women I know more than those linking alcohol con­sumption to the Disease.  Joy-draining results like those reported this week serve up a double-​​whammy of guilt: first — that you might have developed cancer because you drank a bit, or a lot, or however much defines more than you should have imbibed; and second — now that you’ve had BC, the results dictate, or suggest at least, it’s best not to drink alcohol.

The problem is this: If you’ve had BC and might enjoy a glass of wine, or a mar­garita or two at a party, or a glass of whiskey, straight, at a bar, or after work with col­leagues, or when you’re alone with your cat, for example, you might end up feeling really bad about it — worse than if you had only to worry about the usual stuff like liver disease and brain damage, or if you could simply expe­rience pleasure like others, as they choose.

The newly-​​published cor­rel­ative data, in the Nov 2 issue of JAMA, are clear.  The findings, an off­shoot of the Nurses’ Health Study, involve over 105,000 women mon­i­tored from 1980 until 2008.  The bottom line is that even low levels of alcohol con­sumption, the equiv­alent to 3–6 drinks per week, are asso­ciated with a sta­tis­ti­cally sig­nif­icant but slight increase in breast cancer inci­dence.  And the more a woman drinks, the more likely she is to develop breast cancer.

All things con­sidered, it might be true that alcohol is a breast car­cinogen, as Dr. Steven Narod calls it in the edi­torial accom­pa­nying the research study. Still, there’s no proof of cause and effect: Other factors, like con­suming lots of food or perhaps some yet-​​unidentified par­tic­u­larity about living in com­mu­nities with abundant food and alcohol, are potential co-​​variables in this story.  But what if it is true?

From the edi­torial:

These findings raise an important clinical question: should post­menopausal women stop drinking to reduce their risk of breast cancer?  For some women the increase in risk of breast cancer may be con­sidered sub­stantial enough that ces­sation would seem prudent.  However, there are no data to provide assurance that giving up alcohol will reduce breast cancer risk.

How I see it is this: Everything’s best in mod­er­ation, including enjoyment of one’s life.  You work, you rest, you have some fun.

This evi­dence is not like the strong data linking cig­a­rettes to smoking that offi­cials sat on for a few decades under the influence of the tobacco industry.  This is a plau­sible, mild, and at this point well-​​documented correlation.

I don’t deny the some­times harmful effects of alcohol; no sane physician or edu­cated person could.  But if you have a glass of wine, or even a second, so long as you don’t drive a car or work while affected, I don’t see it as anyone’s business but your own.  More gen­erally, I worry about how much judging there is by people who behave imper­fectly, and how that can make indi­viduals who are good people in most ways feel like they don’t deserve to be happy or enjoy their lives.

Women, in my expe­rience, are gen­erally more vul­nerable to the put-​​downs of others.  And so my concern about the BC-​​alcohol link is that this will, somehow, be used, or have the effect of, making sur­vivors or thrivers or women who haven’t even had breast cancer feel like they’re doing the wrong thing if they go to a party and have a drink.  And then they’ll feel badly about themselves.

Really I’m not sure what more to say on this loaded topic, except that it points to the deeper and broader ethical dilemma of doctors who are not all perfect examples of mod­er­ation, expecting and asking other people to change their per­sonal habits when they them­selves like to go out and have fun, and drink, at parties, or have wine in the evenings over dinner in the privacy of their homes.

How shall I resolve this post?

Last night I sipped Sleep­ytime tea, man­u­fac­tured by Celestial Sea­sonings, before reading a book.  The stuff is said to be 100% natural, with “a soothing blend of chamomile, spearmint and lemon­grass.” I tried it first a few weeks ago and, by a placebo effect or through real chem­istry, it helps me sleep more soundly.

I’ve absolutely no idea what are the effects of “Sleep­ytime tea” on breast cancer.  It might help, it might hurt, or it might do nothing at all.

horizontalline

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Guest Blog: NIH to Drop Requirement for Websites Disclosing Researchers’ Ties to Industry

Elaine Schattner
Friday, August 5th, 2011

Elaine Schattner, M.D., is a trained oncol­ogist, hema­tol­ogist, edu­cator and jour­nalist who writes about med­icine. Her views on health care are informed by her expe­ri­ences as a patient with sco­l­iosis since childhood and other con­di­tions including breast cancer. She is a Clinical Asso­ciate Pro­fessor of Med­icine at Weill Cornell Medical College, where she teaches part-time. She holds an active New York State medical license and is board-certified in the Internal Med­icine sub­spe­cialties of Hema­tology (blood dis­eases) and Oncology (cancer medicine). She writes regularly on her blog, Medical Lessons. You can follower her on Twitter @ElaineSchattner.

Word comes from Nature News that the NIH is dropping a pro­posed requirement for uni­ver­sities to dis­close researchers’ financial ties to industry on web­sites. This is a loss for patients, who may not be aware of their doctors’ rela­tion­ships with phar­ma­ceu­tical com­panies and others who fund clinical trials, fel­low­ships, con­ference junkets and other perks for physicians.

In 2010, NIH Director Francis Collins wrote: “As the nation’s bio­medical research agency, the National Insti­tutes of Health (NIH) must ensure that the research it funds on the behalf of US tax­payers is sci­en­tif­i­cally rig­orous and free of bias.”

This sounds right to me, as it did to the folks at the health and safety arm of Public Citizen, according to the Nature report:

…a cor­ner­stone of that trans­parency drive — a series of pub­licly acces­sible web­sites detailing such financial con­flicts — has now been dropped. “They have pulled the rug out from under this,” says Sidney Wolfe, director of the Health Research Group at Public Citizen, a consumer-​​protection orga­ni­zation based in Wash­ington DC. “It greatly dimin­ishes the amount of vig­i­lance that the public can exercise over finan­cially con­flicted research being funded by the NIH.”

As explained in the article, the pro­posal came about after evi­dence came to light that prominent NIH grant recip­ients had failed to inform their employers (uni­ver­sities and medical schools) about lucrative pay­ments from com­panies that may have influ­enced their research. The problem now comes, in part, from lack of funding: the White House Office of Man­agement and Budget (OMB) has no way to enforce the requirement.

That’s no sur­prise. But it turns out that aca­demic groups lobbied against the requirement. According to the Nature News piece, the Asso­ci­ation of American Uni­ver­sities and the Asso­ci­ation of American Medical Col­leges sub­mitted a joint statement objecting that a website detailing physi­cians’ potential con­flicts of interest (COI) would be onerous:

“There are serious and rea­sonable con­cerns among our members that the Web posting will be of little prac­tical value to the public and, without context for the infor­mation, could lead to con­fusion rather than clarity regarding financial con­flicts of interest and how they are managed.”

As a patient and as a physician who’s cared for patients in clinical trials and served on an insti­tu­tional review board (IRB), I can’t be more clear in my thinking that the public should know about aca­demic (and all) physi­cians’ ties with industry. Every insti­tution with NIH funding should make this kind of infor­mation readily available and clear to patients. Otherwise, the faculty don’t deserve the NIH support they’re receiving for the research, nor do they deserve the public’s trust in their work.

Patients should be able to find this kind of infor­mation readily, before they enroll in clinical trials or decide to undergo any elective pro­ce­dures, and even before they choose the physician who would guide them in health care decisions.

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