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.
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.