Calling all patients: beware the standard of care! And never forget: it's your body, your health, your life. The doctor works in your service. Everyone else in the system may forget it, but you shouldn't: you are the boss!
Any number of studies or exposés might be cited to make the case that you must be a vigilant and assertive patient to get reliably good care, let alone the best possible care. But we may satisfy ourselves with just recent research, and recent headlines: one study in JAMA demonstrating that axillary lymph node dissection in early stage breast cancer, though routinely done, does not improve survival; and another study, published in the The American Journal of Surgery, showing that excisional breast biopsies are routinely done when far less invasive, and far less potentially disfiguring needle biopsies would suffice.
Actually, I can't resist -- I'll cite another more vintage example as well: studies demonstrating that rates of hysterectomy vary widely by region of the country, suggesting that the threshold for removing a woman's uterus is a matter of prevailing medical 'fashion,' more than scientific evidence.
As a doctor, I would love to be able to say that these and numerous other such examples (some pertaining to men, too, by the way -- although it may well be that medical mediocrity imposes a greater overall burden on women, more's the shame) are statistically trivial and rare exceptions to the rules of engagement. I would love to say that, but I can't.
I can say -- and hasten to -- that some of the smartest, most dedicated people I know are in the medical professions, and that many docs are tireless in their pursuit of the very best they can give their patients, and the best they can get for them. Altruism truly does rank among the qualities that entice people into the medical field, when they could surely make more money faster and get a lot more leisure time into the bargain doing something else.
But several factors conspire mightily against the relentless pursuit of perfection we all like to imagine motivates every moment of medical practice. Prominent among such factors are: human fallibility; the surprising standards of standard care; and the moving target principle. I will address each in turn.
Human fallibility is self-evident. Doctors, and other health professionals, are people. People who get tired, fight with their spouses, get discouraged, are in a rush, get distracted, and so on. Much of what goes awry in medicine comes down to this: to err is human. To doctor, and to nurse, is human, too -- and alas, they overlap all too often.
The surprising standards of standard care actually relate to human fallibility. The surprise is that while we hear about the 'standard of care' or 'the standard of practice' as if they represent some kind of pinnacle, what they actually represent is ... what's standard. The surprise is that the expression is entirely honest.
We are all prone, not unreasonably, to think that the standard of medical care, with life and death on the line, must be at the pinnacle. But that really can't be; standard is average. If average were at a pinnacle, then there would have to be a higher pinnacle representing above average -- and that would be the pinnacle we would all want, and expect. Standard is, inevitably, well below the pinnacle about which we all fantasize -- and I regret to say that I have seen far too many examples over the years of care pulling the average/standard down than I care to recall.
Don't assume that standard is good enough. Apparently, excisional breast biopsies are standard when fine needle biopsies would suffice.
Third, and finally, is the moving target principle. This is not about the fallibility of any given human -- it's about our collective fallibility. Much of the science we now know to be true would have been seen as heresy at some point in the past. And some of what we think we know presently will prove to be primitive at best, heretical nonsense at worst, at some point in the future -- perhaps tomorrow.
The study demonstrating what we thought we knew about lymph node dissection being wrong is an example of a moving target; studies of hormone replacement therapy at menopause another; the belief we need to treat all prostate cancer another; the notion that peptic ulcers are an infectious disease another still.
Biomedical science evolves, and that is good. But it also means we need a good dose of humility in medicine, because often -- we're not sure. Even when we think we are.
The best way to deal with all of this, in my opinion, is for you to be the boss. Don't get carried away -- it's improbable you know as much about your condition as your doctor; it's almost certain you know less about medicine overall; and there's a pretty good chance your doctor is at least as smart as you. But it is your body, your health, and your life. You are the boss -- so act like it!
Do not just go with the flow. Be courteous, but always assertive. I recommend the following questions as a matter of routine in response to any recommended test or treatment:
Is this the lowest risk option? If not, does this approach add benefit that more than offsets the risk? Is this the test or treatment you would have if you were in my shoes? Is this the test or treatment you would prescribe for a loved one in my shoes? Is there another option with less risk, more potential benefit, or both -- that we should consider? Are you sure I need another test, and will the results change my treatment options? Can you tell me how? Are you sure I need a treatment, and will it reliably change my results for the better? Can you tell me how? How confident are you in this recommendation you are making?
A lot of truly good information can be gleaned from such an exchange, but actually -- it serves another purpose too. It slows down a doctor who may be harried and hurried, and forces her/him to deal with you as ... a person, rather than a patient. It may be that an emphatic introduction of the human element into the medical equation is the best defense against human fallibility. Not a perfect defense, but good nonetheless.
I have coined the term "intuistics," a blend of statistics and intuition, to describe an attribute I believe we all have: the ability to recall the patterns of prior actions and outcomes, and use them as a basis to judge whether what is going on now feels right. We tend to think of it as intuition, but I think it's often intuistics, which is based on data we don't know we know -- and thus more powerful. When that voice in your head whispers "I'm not so sure about this..." listen to it! It is probably intuistics at work behind the scenes.
And while at it, consider these two principles of intuistics: the better the question, the better the answer; and, the more you know, the better you guess. Ask your doctor good questions to force good answers. Then leverage those answers into a better informed "guess" about the best course of action.
The standard of care is just ... standard. Make your standard better than standard. Be the boss.
Dr. David L. Katz; www.davidkatzmd.com
www.turnthetidefoundation.org
Follow David Katz, M.D. on Twitter: www.twitter.com/DrDavidKatz
David Katz, M.D.: Hormone-Replacement Follies: A Brief History
Patricia Yarberry Allen: How To Know If A Hysterectomy Is Right for You
http://www.angrytrainerfitness.com/2011/02/ask-alfonso-supplement-suggestions/
Most doctors I see appreciate that I have a list. I think it's because they know I'm not just going to ramble and that I've got concrete issue to raise and that it's an finite not infinite number! That said, some doctor-patient relationships just don't work. The communication isn't there. Then it's time to find someone else.
I learned a lot of these lessons the hard way. I've written a book about how to live well with chronic illness. It is being incredibly well received by just the people I wrote it for. This was my attempt to make lemonade out of this lemon of an illness. If you want to see more about it, here's the website for the book: http://www.howtobesick.com
Thanks for this informative post, Dr. Katz.
A belligerent patient, that demands a variety of inappropriate and invasive investigations, spends the majority of their office visit talking about what they know it is rather than their signs and symptoms, and dismisses their professional's guidance, will be labeled a difficult patient, and their care will suffer.
Telling your doctor you're concerned about X, Y, or Z is great. Telling them exactly why you have X, Y, and Z based on the Wiki article you read is a waste of their time and yours. (Either they know about X, Y, and Z, or they'll consult a vetted peer reviewed source that reflects the current knowledge and standard of care better than Wiki in order to do the appropriate tests and clinical evaluation)
Suspecting you may have strep throat due to a recent PmHx of Strep is useful. Demanding antibiotics for your sore throat + cough - swollen lymphnodes - pustular tonsils.... is frustrating.
Talking about how your illness is affecting your life is great (seeing what's important to you can help in terms of setting treatment goals, knowing what kind of supports you have at home/in the community etc). Telling all about you're cousin's hip replacement 10 years back is off topic, and detracting from time that could be spent investigating your illness.
The standards of care are hardly standard. Research consistently shows doctors in the community lag the moving standards of care (which is correctly illustrated in the moving target principle) by 17 years. In other words, we aren't often even providing the average care.
While I agree patients should ask questions to get a better picture, I am concerned about the concept of "intuistics" and trusting what feels right. Should we forget learnings from the past and avoid immunization of children for illnesses like measles, pertussis, and mumps because we haven't had any personal experience? Would it not be better to advance as a society and move on to tackle other preventable, treatable, and avoidable problems?
As a practicing primary care doctor, I'm seeing more patients trusting instincts instead of science. Perhaps that is because we has doctors haven't done as good of a job in helping them make the right decisions. That is why patients need to be involved.
I have written about this in one of my textbooks for clinicians (http://www.amazon.com/gp/product/0761919392/)- but did not call it intuistics at the time.
There are some doctors who don't below to HMO's and try to keep their fees reasonable. I have found doctors who when you tell them thet you are paying cash, they will reduce their fees since they don't have to pay staff to run after their payment http://tinyurl.com/6ae5an4
Patients who come in w/ researched information and have a discussion w/ you are great. Patients who come in and tell you what they should be doing (sometimes based on ads in magazines) not so much
....Although I agree with this article on the whole, the link provided in this particular case isn't a legitimate citation in support of that comment about hysterectomies and doesn't even pertain to the author's point in any way, which makes me wonder whether Dr. Katz really has any solid evidence for that particular point or whether it's simply an uninformed opinion. The link will take readers to an abstract from the National Center for Biotechnology Information regarding the percentages of various types of hysterectomies performed in the US in 2003, and the conclusion of the article is simply this: "CONCLUSION: Despite a shorter length of stay, vaginal and laparoscopic hysterectomies remain far less common than abdominal hysterectomy for benign disease."
Nothing remotely related to the notion that hysterectomies are based on "fashion" or the like.
Please, if you're going to cite an article for support, cite it because it actually supports your claim. Otherwise it looks as if you're simply throwing a citation in willy-nilly for show, and especially when one follows the actual link to read the apparent "support." Sloppy and dishonest.
Do note that I cited this as a 'vintage' example- some of the strongest evidence is older, and the problem has, we hope, diminished over time. But it has been covered by journalists over the years; here is a link to a piece by Gina Kolata in the NY Times:
http://www.nytimes.com/1988/09/20/science/rate-of-hysterectomies-puzzles-experts.html
Same goes for my cholesterol: doc tried me on two cholesterol drugs, both made me sick w/fever/chills/aching in two days. Finally I said, look I have blood sugar issues (metabolic syndrome) and until you treat that, my cholesterol is not going to get better. He put me on glucophage and my cholesterol got better.
People must be pro-active and take responsibility for their own health, and get the licensed pill pusher to order what's best for them. Sometimes vitamins or OTC supplements help a lot.
However, if I accept your claim that you are in the medical profession (a 'nurse'), I must make the assertion that not only does your post ring of intellectual narcissism but it is medically irresponsible. Tossing around medical terminology possibly foreign to the most of the viewing audience in an attempt to validate your claim is foul. If you are TRULY in the medical profession (umm, a 'nurse'), you also know that 1) every drug has potential side effects, 2) finding the appropriate drug/dosage is sometimes found via trial and error. What worked for Aunt Sue and Uncle Billy, may not work for you!
If you TRULY believe that you are smarter than your physician...then its TIME to get a new physician!
Lies, Damned Lies, and Medical Research:
http://www.theatlantic.com/magazine/archive/2010/11/lies-damned-lies-and-medical-science/8269/
A Researcher's Claim: 90% of Medical Research Is Wrong - http://healthland.time.com/2010/10/20/a-researchers-claim-90-of-medical-research-is-wrong/?xid=huffpo-direct
Why Scientific Studies Are So Often Wrong: The Streetlight Effect - http://discovermagazine.com/2010/jul-aug/29-why-scientific-studies-often-wrong-streetlight-effect
Why Most Published Research Findings Are False - http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.0020124
Correlation or causation? In research, bet on the former - http://latimesblogs.latimes.com/booster_shots/2010/02/correlation-or-causation-in-research-bet-on-the-former-.html
The above are just some of the reasons I favor primary illness prevention, examples of which can be found in “The Wellness Project.”
Roy Mankovitz, Director
http://www.MontecitoWellness.com
A research organization
If you're asking for it because you saw a commercial for it on TV, don't ask for it.
I appreciate that seeing 20-40 patients per day, many of whom ignorant, self-destructive, or belligerent, can take a toll on a doctor. But there is something much more basic than that. The doctor actually wants you to be silent in the 5-7 min. conversation (with numerous interruptions) while he/she prescribes medication.
They have legitimate time concerns, insurance paper work problems, and plain old burnout. They're not the only ones paying the price for today's health care atmosphere, though.
The fastest way to make an otherwise normal human interaction with your doctor turn hostile and abrupt is to ask questions or challenge a medication/procedure. Given this, your advice is very much welcome in ideal situations but detrimental in too many daily ones.
But there is no reason why assertive and respectful can't go hand in hand; no reason why a patient can't be demanding, yet still clearly appreciative. If this is a patient's demeanor, and the doc can't handle it- frankly, it is time to look for a new doc!
Good doctors and good patients need one another- and each, I think, has cause to respect what the other brings to a good relationship, and good care.