In a previous blog we demonstrated how guidelines can compromise the care of individual patients when designed to serve the health care system.
Why should treating physicians defer to guideline committees at all, we asked? For decades medical students have been taught to read and understand information from published papers.
We are all trained in critical appraisal and can keep up with the clinically meaningful literature, the literature that is relevant and accurate enough to present to patients. Just because there are nearly 20,000 biomedical journals does not mean that any, let alone all are replete with meaningful information. We can discern the valuable from the not valuable; why do we need others to tell us?
In fact, we even argued in our last post that patients can and should judge the value of medical information. After all, they face the consequences of misinterpreting the likelihoods of benefit and of harm associated with various options for care.
No one remembers the numbers that describe the chances for benefit and harm or ask more questions about the veracity of information than a patient who must choose. The smartest information managers we have ever encountered are our patients; when informed, they quickly determine the validity of the information and apply their personal values to the estimations of the chances for benefit and harm.
Patient Empowerment
Take the example of a patient who recently entered into a therapeutic dialogue with one of us, RAM. This was not the traditional clinical interview. This patient had been diagnosed with prostate cancer and was scheduled for an approach to treatment that the diagnosing physician had offered as the most sensible. However, the decision did not rest easily.
The appointment with RAM was scheduled because the patient sought a dialogue that might offer a chance to reflect on the rationale for the approach he was about to initiate. Two hours into the dialogue, the patient, a 40ish year old African-American man accompanied by his wife, were mulling over the marginal benefits and harms of the options for treating an early stage prostate cancer.
The wife asked how many African-Americans were in the study under discussion. “None”. The husband perked up and then asked, “How many people in the study was my age?” “None”. They then asked if the difference in benefit was a certain, fixed amount? “No, it varies over this range.” – examining the descriptive statistics.
They then asked when the study was started and did it pertain to the present day. “It started over 15 years ago” and the stage of disease of the men in the study was generally more aggressive than in this particular case.
It did not take much longer for both the patient and the wife to decide that the information was adequate for them to change their mind and their approach to treatment. If the clinically relevant literature is so flawed, why should they assume the validity and generalizability of any conclusions? Instead of going forward with the planned therapy, they cancelled and entered a clinical trial.
These people did not need a guideline; no guideline can serve them better than their own judgment given that the science is so uncertain. Furthermore, neither the patient nor his wife was a statistician. The patient had an 8th grade education; the wife was a high-school graduate. Sharing information is possible with all patients; the medical establishment is not smarter than a patient who is ill and must decide.
Jousting the Windmill
No patient in the 21st Century should feel that “What would you do, doc?” is an appropriate question when the answer is uncertain. Rather, the appropriate dialogue relates to the corollary, “What would you do if you were me?” Values, risk aversion, cost, and metaphysical notions are all part of the human predicament, even when that predicament relates to morbidity and mortality.
The goal of medical care is not to treat the patient but to foster patient empowerment; it is the informed patient who first chooses between treatment options. We believe this fervently. It is difficult to imagine that any physician would disagree. After all, the difference between a physician and a patient is not in education, it’s in the unfortunate happenstance that can cause any one of us to be ill.
Given that we believe this (and shouldn’t we all), Guidelines are but a symptom of a health care system that is counterproductive. It is a system that caters the special interests of billing efficiency, expediency, and profitability. Today health is a commodity, disease is a product line, and physicians are a sales force in the employ of a predatory enterprise.
If we are following any mandate from any business, hospital, insurer, electronic health record purveyor, or special interest group that truncates our ability to inform a patient and to offer care “with” them in their splendid variability, we are, in our view, abandoning our oath of practice. There is a prerequisite to ethical medical practice that barely has a voice in all the cacophony regarding “health care” reform: time; time to listen, time to understand; time to inform; time to go over information again and again until the patient understands.
So, how do we get, afford, and savor time? That is the question posed by one commenter to our previous blog. The answer to that question is, also, time consuming. There is the ideal reform of American health care which would render the patient “first and foremost”, which we favor, and the compromises, which are far more feasible in today’s fiscal and administrative climate.
Declaration of Independence of Professional Care
Of course, we should stop doing useless or nearly useless medical care, even if Guidelines advocate for the provision of the useless or nearly useless. Doing so would spare our patients unjustifiable risk, spare the GDP from wasting resources, and spare the moral compass of our profession from further rusting. But this would not free up time if we believe that patient input is critical in all decisions.
In America it takes 20 seconds to write a prescription (prior, at least, to electronic prescribing) and 20 minutes not to. For more complex decisions, such as the patient above with prostate cancer, it takes hours. But, taking hours is possible. Decisions do not need to be made urgently for nearly all non-emergent decisions. None of us has hours per patient, but all of us can take hours over time with a patient.
If we need multiple appointments to accrue the hours needed, so be it. In addition, in our practice experience, informed patients often forgo the most time demanding treatments. Paradoxically, more time informing gives more time due to more reasonable, time-sparing treatments being performed.
What would happen if we were to prioritize by effectiveness at the level of the “health care system”? What would happen if the useless (and nearly useless) was not licensed or reimbursed or otherwise sanctioned? Sure, the prioritizing would precipitate debates, anger, lobbying, rants, and worse. But all this would happen in “committee” away from the bedside.
If there was a way to make all this haggling and haranguing transparent to the public at large, patient empowerment would be well served. That would change the anticipated emphasis of the clinical interview from prescribing to informing our patients that the choosing is less certain and their input is critical.
Many common practices would have a Sisyphean battle for such sanctioning. Some that come to mind are counter-intuitive and would require time-consuming explaining before a patient would grasp their logic of such proscriptions: Don’t screen for anything unless the screening test is accurate, the condition is important, and we can do something substantive about it. Don’t spend time on wellness exams.
Don’t give chronic care medicines like vitamins, statins, or any other non-urgent medicines to patients in the hospital. Don’t confuse the treatment of “risk factors” with the treatment of illness; pummeling the numbers of the metabolic syndrome (HBA1c, blood pressure, BMI, serum lipids) has proved a fool’s errand. Don’t initiate a work-up for diseases for which interventions are ineffective, diseases such as coronary artery disease.
If these and the similarly useless and nearly useless were discussed and debated openly with patients, rather than tucked into the agendas of their stakeholders, time to inform would proliferate. If the “system” was ethical, eliminating the useless and nearly useless would be seen as rational, not rationing.
But the “system” is not ethical. Any American physician who considers listening to the patient’s narrative and empowering patients to make informed decisions more important than “throughout” gets our applause. There is no administrative, electronic, ICD-10, DRG or CPT categorized substitute for the time it takes to establish an empathic therapeutic relationship.
When the current chaos subsides, maybe we’ll see this Phoenix.
Robert A. McNutt, MD FACP is an Associate Editor of the Journal of the American Medical Association.
Nortin M. Hadler, MD MACP MACR FACOEM, is a professor of medicine at the University of North Carolina, is the author of Rethinking Aging (2011) and The Citizen Patient (2013).
Categories: Uncategorized
I enjoyed a whirlwind visit last fall to keynote meetings in Sydney and Melbourne on the occasion of the roll-out of NDIS and conduct a series of lectures/seminars hosted by Melbourne Uni on issues you are raising, particularly issues in overtreatment and medicalization and in restructuring compensation of providers and purveyors. Australia is facing the challenges you mention but it is facing them from a position of strength in that the health care system is far from broken and you have a number in your leadership who are rapidly learning to recognize the pitfalls and bear-traps lurking in a push for reform. That may be the only lasting contribution of the American fiasco.
This is really relevant I can see in the USA but right now here in Australia we are going through the early stages of the debate. Right now when you see a doctor its free but the government is looking into charging per visit and some additional services will be charge. The same is true for drugs with some been put off the Australian PBS and Doctors need to be providing the most suitable medication thats not biased. There are different ways of paying with Australians using Medicare – http://www.humanservices.gov.au/customer/subjects/medicare-services or those visiting Australia to workign needing 485 visa health insurance such as http://www.485visainsurance.com.au/485-visa-health-insurance/
Many issues such as waiting periods, cost of seeing doctors and how doctors interact with patients are all coming to a head in Australia and I expect to see some tough decisions made soon by the liberal government in power.
I suddenly went personal over a health issue instead of waiting – what an out of this world distinction. i’m still on the free health roll for an additional issue I even have and are waiting three months currently while not a issue, in private i used to be seen in four days!
It has been my observation, as someone who only practices in a shared-decision-making situation, that patients react to the uncertainty of information more definitively than to certain numbers of small marginal benefit and harm. Like the patient in the blog; he knew the numbers from the studies, but was still uncertain what to do until the uncertain nature of those numbers was clear in his mind. Like the patient in my comment section; the 44% number sounded huge and definitive, but when faced with the actual numbers and the resultant uncertainty in those numbers, he easily decided what to do.
Dr. Movva,
We are of like mind when you state, “So in the absence of perfect information, decisions have to be made based on personal preferences and tolerance for risk.” I’d add that there is never perfect information. Part of our role as physicians is to inform the patient as to the limits of certainty. Then their values can take over, values that relate to risk tolerance and financial constraints:
http://blogs.scientificamerican.com/guest-blog/2013/04/02/doctor-what-would-you-do-if-you-were-me/
http://blogs.scientificamerican.com/guest-blog/2013/05/29/the-scientific-basis-for-choosing-to-be-a-patient-forearmed-is-forewarned/
Dr. Hadler,
I have been following your posts for a while and agree with a lot of what you have to see. In the end, communication and patients personal preferences are key. Some are more risk averse and some highly risk tolerant and it is important to engage the patient in an informed conversation. Sometimes it is hard and some patients just say ” tell me what to do Doc”. In my Direct primary care practice in Houston , I work without insurance and charge a flat fee of just $49/mo . This gives me time to engage in discussion. Sometimes it is difficult since it is such a novel concept for the patients. They tell me that no physician has spent more than a couple minutes with them let alone talk to them for an hour at a time.
In the end, it is important to let patient personality and risk tolerance guide decision making.
Here is an article I wrote to help patients choose a doctor that reflects what you said
Is your Doctor’s personality and practice philosophy a good fit for you?:
Despite the seeming plethora of evidence, there is still a huge knowledge deficit in medicine and we do not have a perfect understanding of even the common conditions such as diabetes and hypertension. Experts may proclaim as usual that they know everything about a disease and exactly how to treat it but it is may be based more on opinion than evidence. So in the absence of perfect information, decisions have to be made based on personal preferences and tolerance for risk. There are some physicians who vehemently support the latest treatments and thoroughly investigate every problem regardless of the number of tests or procedures it takes and some that steadfastly stick to older medicines and don’t pursue every single abnormality. There is no right or wrong answer and your choice should be guided by your personal preferences. In the end you should choose a physician that respects your preferences and opinions and is willing to incorporate them into your treatment plan.
Read more at http://www.integratedhealth.us/is-your-doctors-personality-and-practice-philosophy-a-good-fit-for-you/
We are examining the context in which medicine is practiced in this country, a context that places the avarice of the “system” over the ethical demands of an empathic therapeutic dialogue. I agree that the profession I love is overwhelmed by this dialectic and have detailed how and why (http://uncpress.unc.edu/browse/book_detail?title_id=3262). I see no point in blaming the victims: doctors/patients. That distracts energy from attempting to inform the public as to the needs for transparency and for social constructions that are appropriate in the 21st C.
See Mario Bunge’s excellent “Medical Philosophy: Conceptual Issues in Medicine”
http://tinyurl.com/md59swv
I continue to reflect on it and review it.
I love the responses to our blog; they are well written, clear and seem to support our premise. But, they, also, raised the following thought in my head.
(I am writing this response without the take of my wonderful co-author, so these comments are mine. I will love to see how he responds).
Providing information to patients is difficult. It requires, first, knowing if the information is worth presenting in the first place, and, if it is, knowing how to best communicate the information. A recent patient of mine was given a number by an informing physician; that number – a 44% reduction in the chance of dying of prostate cancer – was accurate but, additionally, nonsense. The number reflected a difference of 16 patients out of over 26,000 studied. Informing requires more than talking; it requires clear headed thinking about the value of the information being given.
Communication is even more difficult than informing, isn’t it. It takes me, sometimes, hours to make sure patients understand the context and consequences. Even face to face, communication is a precarious dance between two partners who may have different goals of the performance.
Communication in writing is another tough task. Despite all attempts to be clear, confusion can bubble up. So, I want to say that none of my (our) comments mean to be “anti-physician”. If there is an underlying, “anti” in the comments it is to the system that now drives those physicians who are caring servants to their patients (and most are) to distraction and, worse, out of the practice of medicine.
But, en masse, we (physicians) bear some culpability. The system, after all, is developed by us. Somewhere along the line we let barbarians (metaphoric and not specific) at the gate and then let them over the gate so they could devour our most important attributes. It is time to turn the tables and that will start with exposing the reasons why we let the gates down. Some who have commented begin to expose those reasons. The uncovering and then discarding of those reasons will provide the path to substantive reform for a patient’s sake.
I read recently that Doctor means Teacher, not Healer… makes sense, when you think about it.
Your appreciation for what the patient/physician relationship should be accords very well with what I have been fighting for every tine I see a doctor (and sometimes being looked at as if I have 3 heads). I want you to be a currently informed consultant, offering education and useful choices for me to decide about. I want you to take the time I need to understand what you are saying, and for you to realize that a great deal of healing takes place when you focus, with respect, on my problems, so that we may come up with solutions. You are my body engineer when things go pear-shaped, and I am afraid, and I need help and comfort to see the way. This is a profound trust.
What I want is pretty straightforward, at least conceptually. And as you pointed out, there is a fine line separating you from us, so it behooves you create the system you would want if you cross it. (Funny how many physician stories I read in which the doc, now-patient, is stunned and shocked by the new vantage point – something to carefully consider.)
How to do this? Perhaps the only way at this point is to have enough docs leave the current system – divorce yourselves from the insurance predators, leave Big Pharma and it’s servile guideline-writing “Professional” societies in the dust, bypass the nonsense, and set up as direct pay. Take the risk, each of you, and reach for the tipping point, and then you might have a hope of getting back to being real Doctors and Teachers.
“The problem that Americans need to come to grips with is the reality that most of the organizations in the healthcare system does not really care about their health.”
__
Nothing personal, just business.
“Today health is a commodity, disease is a product line, and physicians are a sales force in the employ of a predatory enterprise.” A brilliant summary of what’s gone wrong.
We’ve encouraged –even facilitated — through the bizarre and apparently can’t-be-killed fee-for-service system the rise of physician entrepreneurs who know all too well that they get paid more for doing more and that the mere act of doing more is recorded as having done something. And, people who “do” things always get to line up first at the payment window.
In my long history of interviewing physicians on different topics, two exchanges will live forever in my mind. The first was a with surgeon who told me that he and his office staff had concocted a secret coding system on patient files (this was pre-EMR) so that even before he entered a room to do an H&P he knew the patient’s insurance status and, thus, pre-judged whether he would or would not do a particular procedure. Saved him time and headaches.
The second was with the president of a major specialty society who in my presence, while adorned in Rolex and Ferragmo, could not off the phone with his office staff fast enough so that he could talk to his trader about his currency options. Patient care can be such an inconvenience.
The problem that Americans need to come to grips with is the reality that most of the organizations in the healthcare system does not really care about their health.
Excellent insight, and in my opnion depressing to the degree it highlights how far Medicine has deviated from the principles and values Drs. McNutt and Hadler espouse…..and it looks to me like there are few forces pushing back.
The authors state:
“If we are following any mandate from any business, hospital, insurer, electronic health record purveyor, or special interest group that truncates our ability to inform a patient and to offer care “with” them in their splendid variability, we are, in our view, abandoning our oath of practice.”
Yet the trend (including ACA) is that these mandates only intensify….and more and more young physicians just give up and become salaried employees with little power (or stomach) to resist the onslaught of mandates which even when well intentioned lead to financial waste and too often harm to patients.
I recently went private over a health issue rather than waiting – what an unbelievable difference. I am still on the free health waiting list for another issue I have and have been waiting 3 months now without a thing, privately i was seen in 4 days!
If I spend time I don’t have trying to engage the patient in shared decision making, he may choose a course that doesn’t align with my quality scores.
I will then be labeled a poor quality physician, and make less money.
So I tell him what to do, because it’s “important for his health.”
(what a bunch of B.S. we’ve let happen to our profession.)