Thursday, October 15, 2015

The Problem with the New Patient Autonomy

The neurology team shuffled single-file into the patient’s small room. The patient, probably in his 30s, had black hair, brown eyes, and an unsettling demeanor. He glared icily at us from his bed, the blankets covering him up to the neck. His pale brow furrowed even more noticeably as all nine of us intruded on his privacy. In a scene out of a futuristic movie, EEG (electroencephalogram) leads on his scalp connected his head via wires to a screen showing squiggly lines representing brain activity; a small video camera attached to the screen monitored the patient’s movement. He had come to the hospital overnight after falling and shaking, a story worryingly suggestive of a seizure.

Brain waves on EEG
Image via Shutterstock

An electroencephalogram records neuronal signals in the brain and is used by neurologists to diagnose seizure activity. When a patient has a seizure, which can manifest as full-body convulsions, a family member in the room pushes a button on the machine which starts the video camera recording the patient’s movements. Then, neurologists examine the movements in the video and the waves tracked by the EEG to see if they are consistent with seizures.

There are different kinds of seizures depending on which part of the brain is affected. Symptoms range from a loss of attention for a few seconds (absence seizures) to full-body convulsions which we typically associate with seizures (generalized tonic-clonic seizures). Different conditions can cause these events — for instance, high fever as a child (febrile seizures) and brain tumors can induce hyper-excitability in the brain. If the seizure does not stop, a patient can enter status epilepticus, a state of prolonged epileptic activity that can cause permanent damage.

Having a seizure, then, can be very serious business. Physicians must perform a medical work-up to ensure that the patient is not at great risk. In addition to an EEG, our patient’s neurologist ordered labs and a CT scan of the brain. However, these tests were all negative. Even overnight, when the patient and his mother both claimed that the patient seized, there were no abnormal electrical discharges on the EEG.

Indeed, not all physical manifestations of seizures indicate the presence of legitimate seizure activity in the brain, which is why the EEG is such a valuable diagnostic tool. It turns out that certain patients may believe they are having seizures when they are actually having pseudoseizures or psychogenic non-epileptic seizures. To most observers, pseudoseizures look exactly like generalized tonic-clonic seizures. Patients shake, tense up, and flail violently and frighteningly. However, certain differences exist that distinguish them from each other. During pseudoseizures, EEGs show no abnormal brain activity, patients do not bite their tongues (this can occur with real seizures), and patients do not respond to anti-epileptic or anti-seizure medications. It’s not that patients undergoing pseudoseizures aren’t sick, it’s just that their sickness has nothing to do with neurological pathology or seizure activity.

Frequently, patients who experience pseudoseizures do have underlying psychiatric disorders, like anxiety or PTSD, but not always. Other risk factors and triggers include interpersonal conflicts, childhood abuse, and past sexual abuse. Seemingly, then, a pseudoseizure is a symptom of a psychiatric illness. Another factor that distinguishes pseudoseizures is that patients are conscious during the events. I’ve seen one attending push down hard on a patient’s hand during a pseudoseizure while telling the patient he was going to do so. The patient suddenly awoke before the attending pushed hard enough to hurt the patient. (If the patient was having a generalized seizure, he would not have felt anyone pressing on his hand nor would he have heard anyone giving him a verbal warning of it.)

In explaining the concept of pseudoseizures to a patient who has them, one must take great care. If a physician tells a patient, “these are not real — it is in your head, so grow up,” no one will benefit. Psychiatric illness cannot be fixed with a stern rebuke. One must explain that these are not seizures and that it will take time to fix whatever is happening, but anti-seizure medications will not help. (While there are no medications for pseudoseizures, behavioral therapy can be efficacious.) Through this conversation, one hopes the patient will seek help from a psychiatrist.

The patient we saw that morning did have pseudoseizures rather than seizures, as the EEG and the video of his body movements indicated. Additionally, and tragically, he had a horrific childhood and had been physically abused by his father. The attending explained all this very gently in the course of nearly twenty minutes. When he finished, the patient and his mother both burst out indignantly: How could this physician ignore the symptoms? How could he be so callous as to dismiss this disease? Why wouldn’t he prescribe medications? Why did he not order an MRI of the patient’s brain (an expensive type of imaging) to further investigate the cause of this? In the patient’s words: “I’m not believing any of this bullshit.” Although the physician calmly tried to explain everything again, the patient refused to listen and eventually the team left to continue rounding. Still enraged, the patient called the customer-service department of the hospital and continued to argue with the team throughout the day. Eventually, after numerous disputes, our attending physician caved (and who could blame him given that there were nineteen other sick patients on the service who needed his attention?): the patient got what he wanted, an MRI study which showed nothing abnormal.

Unfortunately, this is a weekly if not a daily experience in hospitals across the country. Patients frequently make inappropriate requests of physicians, which are subsequently granted. What has brought our system to the point where a patient issues orders and the physician must about-face from a medically sensible course?
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In ancient times, patients had very little, if any, autonomy, as R. Kaba and P. Sooriakumaran point out in their 2007 article, The Evolution of the Doctor-Patient Relationship in the International Journal of Surgery. Doctors decided what was good for patients and what wasn’t. There was no informed consent — a doctor told a patient what the patient needed and expected him or her to comply.

This interaction may have evolved from the ancient Egyptian “priest-supplicant” relationship, in which magicians and priests with access to gods conjured up cures for various medical disorders. The patient, without a modicum of holiness, had to supplicate to the priest, or father figure, in order to get well. Even for the Greeks, who developed slightly more scientific ways of approaching disease and more ethical ways of approaching the patient (see the Hippocratic Oath), the doctor was a paternalistic figure granting “hard-line beneficence” to the patient. All this was akin to a parent-child relationship, a model for the doctor-patient interaction that was considered normal even in the mid-twentieth century, as I wrote in my essay on vaccines for The New Atlantis:

The unchecked authority of medical experts in those days allowed doctors to trammel the rights of both patients and research subjects. Many of those whose research laid the foundations for modern vaccines, such as Jonas Salk, Maurice Hilleman, and Stanley Plotkin, tested their vaccines on mentally retarded children. Starting in the mid-1950s and continuing for about fifteen years, the infectious-disease doctor Saul Krugman fed hepatitis virus to severely disabled residents of the Willowbrook State School in order to study the virus. The enshrinement of patient autonomy in the 1970s was in part a response to these very serious ethical problems.

Recently, though, things have changed:

Over the past few decades, however, the boat has tipped to the other side. Now, patients rate doctors online at sites like Healthgrades or Yelp or Vitals the same way one rates a restaurant. This puts pressure on physicians to give patients what they want rather than what they need in order to garner more business. The government bases Medicare reimbursements, in part, on patient satisfaction scores, putting further pressure on physicians to make patients happy [In fact, patient satisfaction score surveys play a significant role in determining how much money hospitals receive from Medicare.] Dr. Richard Smith, former editor of the British Medical Journal, has explained that the increasing power of patients is bringing us to a point where “there is no ‘truth’ defined by experts. Rather there are many opinions based on very different views and theories of the world.” If a patient wants a test or procedure, he or she can have it. The same goes for refusing it, even against the advice of doctors.

This modus operandi of allowing patient satisfaction to dictate medical care is becoming more and more common. It is even encouraged. Kai Falkenberg, a journalist, notes in a must-read 2013 article in Forbes,

Nearly two-thirds of all physicians now have annual incentive plans, according to the Hay Group, a Philadelphia-based management consultancy that surveyed 182 health care groups. Of those, 66% rely on patient satisfaction to measure physician performance; that number has increased 23% over the past two years.

And that’s not all, according to her article. These metrics encourage physicians to do things that are not always in the best interests of the patient:

In a recent online survey of 700-plus emergency room doctors by Emergency Physicians Monthly, 59% admitted they increased the number of tests they performed because of patient satisfaction surveys. The South Carolina Medical Association asked its members whether they’d ever ordered a test they felt was inappropriate because of such pressures, and 55% of 131 respondents said yes. Nearly half said they’d improperly prescribed antibiotics and narcotic pain medication in direct response to patient satisfaction surveys.

Satisfying patients and practicing good medicine are not always the same. Data on this abounds. A 2013 study by physicians at Johns Hopkins demonstrated little evidence that patient satisfaction corresponds to the quality of surgical care. Furthermore, in a 2012 study, physicians at UC Davis found that increased patient satisfaction scores were associated with higher health care expenditures and even increased mortality.

Of course, I’m not arguing against patient autonomy or patient satisfaction. People ought to have a voice in their healthcare. But attributing excessive importance to patient satisfaction scores stymies medicine and encourages confusion among patients who don’t necessarily know what is and isn’t medically appropriate, thus putting them at risk. This is borne out in the story of our pseudoseizing patient, and in the data from studies. If we, as physicians, merely do what the patient asks of us, we are no longer practicing medicine; we are technicians for hire, something I pointed out in a previous post on the purpose of medicine. Evidently, then, the push for patient autonomy can hurt both patients and doctors.

Indeed, the solution is not to incentivize the physician to give the patient what he or she wants. Nor is it to force the patient to do only what the physician demands. What we need is balance. As suggested in a 1996 article in the Annals of Internal Medicine, what we need is not a consumer model but a model that promotes “an intense collaboration between patient and physician so that patients can autonomously make choices that are informed by both the medical facts and the physician’s experience.” Doctors don’t have a monopoly on medical truth but they have years of education and experience and they must help patients to make a reasoned choice.

Physicians need to provide patients with information, evidence, and guidance. They need to negotiate with patients, just as patients need to negotiate with doctors. And sometimes physicians need to draw a hard line. If a doctor encounters a patient who demands something a physician is not comfortable with or if the “chosen course violates the physician’s fundamental values” despite negotiations and conversations, “he should inform the patient of that fact and perhaps help the patient find another physician.”

Yes, final choices belong to patients and not doctors. But both must invest a lot in order to allow patients to make informed decisions. We should not let the mistaken primacy of satisfaction surveys and radical autonomy obstruct this negotiation — there is more at stake for all of us than just an extraneous MRI.