The Right to Make Informed Medical Decisions

As the health care landscape changes, patients must stay informed.

ByOpinion By Nortin Hadler, M.d.
February 23, 2009, 2:04 PM

Feb. 24, 2009— -- Over the past 40 years I have cared for and cared about thousands of patients. It has been a privilege.

I make a point of listening actively and interactively with my patients. I fervently believe that their medical decision-making should be as informed as possible. I want their decisions to be driven exclusively for their benefit. I have always run interference for my patients in order to serve this ethic, a commitment that calls for an ever more concerted effort as other "providers" and many "health" agencies have acquired conflicting interests.

I have no intention of slacking off, but my ripe old age is looming, and my ability to fight on their behalf in the future is uncertain.

There are impediments to making informed medical decisions that are increasingly subversive and insurmountable. Furthermore, my patients are more and more likely to be saddled with charges that underwrite incompetence. I never wanted to put words in the mouths of my patients. Perhaps I can be forgiven this lapse.

There are inalienable rights that every patient must demand in order to insure that their decision making, when it comes to medical issues, is informed:

No physician or surgeon should brandish "clinical judgment" or "common practice" as the reason for doing anything to a patient without stating that there is no science to inform the decision. The patient needs to understand the track record that supports the clinical judgment, the track records of others who suggest alternatives and the likely outcome if "watchful waiting" is the option chosen. Furthermore, the choice of "watchful waiting" or another physician's best guess should never incur derision or otherwise feel pressured.

No physician or surgeon should prescribe a pharmaceutical without detailing the basis for certitude that the agent will benefit the patient. What is the likelihood that the patient will be better off, in what time frame, and to what degree? If the science is not sufficiently compelling, the patient is free to demur without incurring derision or feeling pressured. If the patient finds the science sufficiently compelling, information as to any potential downside must be provided so the patient can weigh the benefit/risk ratio.

No physician or surgeon should substitute a newer pharmaceutical for a drug already prescribed without detailing the evidence that the new agent offers greater likelihood of meaningful benefit. Dosing convenience and theoretical effectiveness are not determinative. If no important health advantage has been demonstrated, uncertainties as to long-term adverse events are intolerable and the patient can demur without incurring derision or feeling pressured.

No surgeon should put any device into any body without explaining the scientific basis for asserting that the patient will be receive a meaningful advantage in the short term and in the longer term. If the basis for the procedure is solely theory and preconception, the patient is free to demur without incurring derision or feeling pressured.

No diagnostic study should be performed unless the test is interpretable in a fashion that benefits the patient. The test must detect a specific abnormality, one that is highly likely to play a role in the current illness. Furthermore, the detection of such must lead to a clinically meaningful insight regarding prognosis, if not to therapy.

No medical screening should be offered unless the screening test has been shown to be adequately accurate, the disease to be screened for is important, and something meaningful can be done if the result is positive.

These first six articles require scientific data as to the effectiveness of interventions. Congress is crafting a "stimulus package" that includes more than $1 billion earmarked to generate such data, leading one to believe that the data that exists is inadequate to the task. That is misleading.

For more than a decade, there have been international efforts to define the evidentiary basis of medicine by analyzing the hundreds of thousands of randomized controlled trials on all sorts of interventions. This effort lends itself to the statements of efficacy that are called for in articles I through VI.

The stimulus package is stimulating a reinvention of the wheel that will effectively maintain the status quo in the United States for years to come. It is funding yet another impediment to informed medical decision making for patients.

Pricing of medical and surgical care should be transparent. Increasingly, American patients are asked to pay for their own care; even if they have health insurance, co-pays and deductibles are escalating. The assumption is that the insurance industry is passive in this trend, simply passing along the increased costliness of our evermore effective medical science. The country is being scammed. I have long been uncomfortable turning my consumer rights over to the insurance industry, but no patient should by willing to abandon those rights now that they pay so much out of pocket.

Articles I though VI demand effectiveness, Article VII is a demand for a statement of the "bang for the buck".

Why is it that for comparable drugs the price per pill in the United States is 50 percent higher than in European Union countries? Why is it that by 2006 we were spending about $450 per capita to administer our system when no other country came close to that amount? France got away with $250 per capita, Canada $150 per capita and Denmark, Finland and South Korea were under $100 per capita.

How is it justified that a hospital-based bureaucrat's salary can be many times greater than the that of the secretary of Health and Human Services or the governor? Why do specialists earn so much more in the United States than anywhere else, even though there is no evidence they are more proficient?

Why do we think that layers of regulations and tiers of committees and bureaucracies will guarantee professionalism more than peer review and openness?

Now that Americans are paying out-of-pocket, a free market means they should be able to comparison shop. It may be much more cost-effective to fly to Toronto or London or Singapore for care than to support American health-care price gouging.

There are more tenets, more of my legacy for my patients. But I am saddened that I need to leave such a legacy. It speaks to the fashion in which my profession has been co-opted by a health care industry that considers self-service to be a form of public service.

The fact that I as physician and you as patient must advocate for these articles is a reproach to our national ethic. If it wasn't for entrenched interests vested in the status quo, rational reform would be rapidly forthcoming.

For example, licensing of all pharmaceuticals would be based on evidence of effectiveness, not just evidence for any effect. And licensing of all devices would be held up to a similar standard.

And the management of the "system" would be infrastructure again, not its raison d'être.

Then this bill of rights would be central to our nation health care agenda, and not an agenda for advocacy.

Dr. Nortin Hadler is professor of medicine and microbiology/immunology at the University of North Carolina at Chapel Hill, and an attending rheumatologist at University of North Carolina Hospitals. He is the author of "Worried Sick: A Prescription for Health in an Overtreated America," and "The Last Well Person."

ABC News Live

ABC News Live

24/7 coverage of breaking news and live events