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?

*   *   *

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

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.

Physicians in Wartime

“Here is a hand-to-hand struggle in all its horror and frightfulness,” wrote Henri Dunant, a nineteenth-century international activist,
in his book A Memory of Solferino. The book concerns the Battle of Solferino in June of 1859 between the Austrians and the French. Dunant describes
the combatants “trampling each other under foot, killing one another on piles of bleeding corpses, felling their enemies with their rifle butts, crushing
skulls, ripping bellies open with sabre and bayonet.”

An 1897 illustration depicting ambulance corps from
Russia (left) and England (right).
Image via Shutterstock

But amidst these horrors, Dunant gives us at least some hope in the form of the field hospitals. As a volunteer there, he points out that French surgeons
did not rest for more than twenty-four hours, amputating legs and taking care of soldiers, eventually fainting from exhaustion. And this was not just done
for French soldiers. Dunant observes that many wounded Austrians and Hungarians were “given the same food as the French officers, and their wounded were
treated by the same doctors.” In the hospitals only the soldiers’ uniforms on the shelves above their beds, not the quality of the care they received, indicated which side they fought for.

After witnessing this, Dunant proposed that the international community establish relief societies composed of volunteers and sanctioned by a convention
that would govern the treatment of the wounded during wartime. His proposal drew huge international support and on August 22, 1864, 16 countries signed
onto the first treaty of the Geneva Conventions which,

in its first article, reads that

“Ambulances and military hospitals shall be recognized as neutral, and as such, protected and respected by the belligerents as long as they accommodate
wounded and sick. Neutrality shall end if the said ambulances or hospitals should be held by a military force.”

Implied in this law is a principle far more ancient, one embodied in the physician’s Hippocratic Oath. In it, the doctor swears, “in every house where I come I will enter only for
the good of my patients, keeping myself from all intentional ill-doing….” The physician, therefore, is responsible only for the good of the patient no
matter what uniform that patient may wear. The Oath makes no exception for wartime or for the treatment of an enemy. Even if physicians disagree about who
bears the blame for a conflict, they must abide by this ancient promise and its nineteenth-century ideological successor.

But what if one side in the conflict obstructs or prevents physicians from following this code? On July 23, during the latest war between
Hamas and Israel in Gaza, more than twenty leading physicians and scientists from the U.K. and Italy sent a letter to the distinguished British medical
journal The Lancet, claiming that Israel does exactly that. This letter is filled with accusations leveled
against Israel regarding the political origins and conduct of this conflict, but I’ll let others in the medical field and outside the medical field cover that ground. There is one aspect of the letter I would like to
address — specifically, the role of medicine in this conflict. On the basis of their “ethics and practice,” the physicians go on to claim:

As we write, the BBC reports of the bombing of another hospital, hitting the intensive care unit and operating theatres, with deaths of patients and
staff. There are now fears for the main hospital Al Shifa. Moreover, most people are psychologically traumatised in Gaza. Anyone older than 6 years has
already lived through their third military assault by Israel.
The massacre in Gaza spares no one, and includes the disabled and sick in hospitals, children playing on the beach or on the roof top, with a large
majority of non-combatants. Hospitals, clinics, ambulances…. As we write, other massacres and threats to the medical personnel in emergency services and
denial of entry for international humanitarian convoys are reported. We as scientists and doctors cannot keep silent while this crime against humanity

Though there is death and destruction in every war, the physicians want to point out that Israel, and not Hamas, is particularly bad in trampling on the
inviolability of the medical profession and its principled goal to care for all, Israeli or Palestinian.

And yet, this accusation glosses over some very important information. Financial Times reporter John Reed

tweeted that rockets are being fired by Hamas from Gaza’s main hospital, Al Shifa
. William Booth at the Washington Post

reported that

Hamas has been using Shifa Hospital as “de facto headquarters for Hamas leaders, who can be seen in the hallways and offices.” In

another article
 in the Washington Post, Adam Taylor reports that the Israeli military targeted Gaza City’s el-Wafa Rehabilitation Center (after
calling the hospital and telling them to evacuate), because they believed that rockets “were being fired from the vicinity of the hospital” and that there
were “militants firing from the building.” In an
al Jazeera article describing an Israeli attack on al-Aqsa hospital in Gaza, Israeli officials claim that there was a weapons cache near the hospital which the military was

There are those who doubt these reports. But Hamas has a history of doing this. The United Nations Relief and Works Agency (UNRWA) recently released a statement
saying that its inspectors had found rockets, for a second time, in a UNRWA school for Palestinian children. As Adam Taylor

points out
 in the Washington Post, “If Hamas is hiding missiles in schools, why not in hospitals?” And Hamas has a long track record of exploiting civilians and civilian infrastructure in this way. In an article for the New York Times in 2009, Steven Erlanger wrote that “Weapons are hidden in mosques, schoolyards and civilian houses, and the leadership’s war
room is a bunker beneath Gaza’s largest hospital, Israeli intelligence officials say. Unwilling to take Israel’s bait and come into the open, Hamas
militants are fighting in civilian clothes.”

And what of the Israeli hospitals? Israeli physicians recently treated
the mother-in-law of Ismail Haniyeh, the leader of Hamas, for cancer in a Jerusalem hospital.
Israeli physicians also treated, though unsuccessfully, the granddaughter of Haniyeh
in a children’s hospital in Israel. Even as the fighting started, Israeli physicians were operating on Palestinian children with heart defects. As Dr.
Akiva Tamir, head of pediatric cardiology at Wolfson Medical Center in Holon, stated, “It does not matter what side of the political map you are on. The
parents of these children want them to live — just like parents [in Israel].” Indeed. And, as ABC News has reported, Israel opened up a
field hospital at the Gaza border to treat Palestinians wounded in the conflict. CNN reports that Barzilai Hospital in Israel, which treats soldiers, civilians, and
injured Palestinians, is “frequently hit by rocket attacks from Gaza.”

These facts make the letter from the international physicians and scientists incomprehensible: the signatories support an organization that defies the
very principles integral to the job of the physician. While Israeli physicians hold to the oath of Hippocrates and to the principles of Henri
Dunant, Hamas uses the very place where lives are supposed to be saved as a place to plan the end of human life. This renders their hospitals in clear
violation of the original Geneva text: “Neutrality shall end if the said ambulances or hospitals should be held by a military force.” And the consequences have been devastating for
Palestinians in need of medical care. Physicians, in the spirit of Dunant, must seek to treat enemies and friends, combatants and noncombatants. Hamas and its defenders are obfuscating this principle.