The Arrogance of Uninformed Consent

Edmund Burke, an Irish statesman, born in Dublin in 1729, served as a member of Parliament in the House of Commons during the time our nation was in the spasms of creation. He died in 1797. He should be remembered for his stalwart support of the American Revolutionaries against the arrogance of his King. However, he is best known for the following quote: “The only thing necessary for the triumph of evil is for good men to do nothing.”

I recalled this statement recently when Mitt Romney had the courage to stand up and describe the true character of Donald Trump. It is still uncertain if Mr. Romney’s declaration will stem this tide of evil spreading across our country, but I can state unequivocally Mitt Romney is a good man: he did something. He fulfilled another of Mr. Burke’s philosophical aphorisms: “Nobody made a greater mistake than he who did nothing because he could do only a little.” In this spirit I will continue to express my opposition to the fascist movement of Mr. Trump; per chance this small effort will encourage others to speak out before it is too late.

While it has perhaps become a tired affirmation – and to cynical observers – a trite declaration: the founding fathers mandated that the power of our government is exclusively derived from the consent of the governed; that is, the voters who select the shepherds of our republic. It is assumed, these learned men who designed our form of government – I remind you exclusively male – still anointed as “the most brilliant leaders in human history,” though many of them perpetuated the institution of slavery, really meant they would govern with the informed consent of the citizens. They implied the electoral process was to be a sober and deliberative decision by the electorate, attended sometimes by unknown and perhaps unpredictable consequences, but done with serious integrity. It meant that personal proclivities, personality traits, prejudices and impulses would be minimized. In fact, the intent of the founders in this regard, informed consent, has long ago been ground into the dust of self-absorbed, fatuous manifestations of ego and blatant narcissism, to say nothing of the corruption of financial persuasions.

Perhaps our political system could learn something about informed consent from our medical system, though one, Dr. Ben Carson has totally abandoned such ethical guidelines. In his passive acceptance of the fascist jargon of the Republican Party front-runner he has abdicated his primary ethical responsibility as a physician: “First, do no harm.”

A Brief History of Informed Consent

The status of informed consent has dramatically evolved over the 50 years I have been a practicing physician, while the application of this concept has eroded to nonexistence in our political process. A personal anecdote may help to illustrate the dynamic progress but still incomplete quality of the medical decision process compared to the decayed and dangerous inertia of the political.

While I loved my time in medical school in the early to mid-1960s, I intensely disliked the vast majority of surgeons who were arrogantly condescending in their approach to patient care. At that time the medical profession, in general, manifested a deeply ingrained tradition of paternalism. The physician had all the answers and would, in a position of superiority, occasionally patronize to share said knowledge and skill to the unenlightened supplicants who came seeking care.

The quintessential examples of this overbearing culture were surgeons who dominated the middle years of medical school training. It was not uncommon for the faculty surgeon, with his entourage of students, interns and residents, to tell a patient there was no alternative to the proposed surgical procedure. Frequently, after hearing such a presentation I would say, to myself of course, why not add, “take it or leave it lady.” Questions from the patient or family were not entertained. To my personal embarrassment, I heard a version of the following statement by a surgeon, multiple times, when a patient attempted to ask a question: “Listen to me; let me talk; we have made a firm diagnosis and this is what needs to be done. You are on the surgery schedule.” I considered most surgeons to be the personification of a bully.

There is no better example of this than the surgical management of cancer of the breast in 1960. If a woman came to a surgeon with a lump in the breast there was, within the medical hierarchy, a well-accepted automatic scenario of events. The patient would be scheduled for both a breast biopsy and a radical mastectomy. Permission for the both procedures was obtained at the same time; the only alternative was no treatment at all. At the time of the biopsy, under general anesthesia, the patient was also prepared for the second stage if the frozen section biopsy indicated malignancy. If the biopsy report was indeed bad, a prolonged mutilating surgical procedure was carried out without further discussion. In the course of a radical mastectomy the entire breast with underlying muscle was taken and the dissection carried into the axilla to remove any potential lymph nodes involved with metastatic disease. There was always such a wide excision of tissue a skin graft would also be taken to cover this gigantic defect. The possibility of later cosmetic surgery was eliminated. The post-operative recovery from such a procedure was simply horrible. For a medical student, let alone the patient or family, to question the wisdom and necessity of such a mutilating procedure was medical heresy. The tradition of this type of surgery dated back to the days of William Stewart Halsted, considered the founder of “modern’ American surgical technique. He was a professor of surgery in the early days of Johns Hopkins Hospital and Medical School and was a life-long drug addict.

Fortunately, in the medical field the age of arrogant paternalism has almost entirely disappeared. Today, 50 years later, throughout the health care professions, it is universally accepted that health care is a collaborative process including all the desires, values, needs and decisions of the patient and family. There has been a profound culture change, which surrounds the practical and ethical concept of informed consent. The patient makes the decision based on the recommendation of the health care provider who is obligated to present all reasonable alternatives, risks, complications, as well as the expected course of the illness and recovery. Today, this applies to all therapies, including treatment with medications, as well as all surgical procedures. Failure to inform and obtain consent is negligent and malpractice.

Practical Application of Informed Consent

As expected, there are problems with the practical application of informed consent. Dr. Lisa Rosenbaum, MD, writing in the New England Journal of Medicine on August 13, 2015, The Paternalism Preference – Choosing Unshared Decision Making, provides a thorough and elegant discussion of this concept. While noting the patient “should have access to all available medical information…and it is wrong to deny anyone information,” there are times when “too much information” is not helpful. She uses a personal example where she had a fractured clavicle and was presented with overwhelming information about treatment. Dr. Rosenbaum wrote: “Despite my awareness that various surgical approaches exist, being asked by an expert how I wanted my clavicle realigned seemed like being asked by an auto mechanic how I’d like my clutch repaired.” She does make the cogent case that sometimes we must be sensitive to the fact the patient would prefer to know less. More information is not necessarily always the answer. But all information should always be readily available.

In fact it is not the detailed medical information that patients and families want and need, though they have the right to every single detail. The tone, the spirit of the collaboration with the provider is most important in providing a sense of trust and confidence. Dr. Rosenbaum succinctly presents the problem:

Perhaps we can’t provide existential meaning, but the way we share information may exacerbate patients’ sense of vulnerability and alienation. When we rattle off a litany of possible risks, say “Please sign here,” and check our watches when the patient says, “Hold on, I need to put on my glasses to read this,” we have neither succeeded in the spirit of patient engagement nor honored anyone’s values. [View the entire article online.]

Dr. Rosenbaum then related an anecdote which has a very personal meaning to me. In the Winter of 1965 I traveled to Boston to interview with a panel of physicians for a Straight Medicine Internship. The last physician I talked with was Dr. Franz Ingelfinger, then the Chief of Medicine at Boston University Medical School and Boston City Hospital. When I entered his office I noted there was a prominent wooden sculpture at the front center of his desk: a well modeled extended middle finger. Dr. Ingelfinger was a kind and generous man and he did not quiz me aggressively like other examiners. He talked about his friendship with Dr. Richard Vilter, the Chief of Medicine at my medical school who had written a letter to him in my behalf. He did note that there were only 6 Straight Medicine positions available and said very nice things about my future. I did get the message I would not get a position in that Boston program. Still, meeting this great man was an honor and a fond memory. I did get a Straight Medicine Internship in Los Angeles.

Photo of Franz Ingelfinger through Boston University
Photo of Franz Ingelfinger through Boston University

Dr. Ingelfinger went on to become Editor of the New England Journal of Medicine and did become one of the great men of American medicine. So, it was with keen interest and sadness when I read an essay by Dr. Ingelfinger in the New England Journal in 1980. He described his own cancer diagnosis, an adenocarcinoma of the esophageal gastric junction. This was an area of medicine of which he was a world-wide expert. Of course, he had all the information one individual could possibly absorb; in fact he had too much information. This gifted physician received so many expert opinions, in his own words he “became increasingly confused and emotionally distraught.” Finally, he was told by a friend what he needed was a doctor. “He was telling me to forget the information … seek instead a person who would in a paternalistic manner … assume responsibility for my care …. When that excellent advice was followed, my family and I sensed immediate and immense relief.”

For many years, when a patient or a family member has asked me for advice on where to go and who to see, I have said: “You have the right to all the information available, but first you need a “real doctor” to interpret for you and guide you in your decision process.” I do not add: you don’t need a bully pushing you in a direction to fulfill their personal agenda. Similarly, we don’t need our political contenders bullying us as we try to make choices for the course of our government.

Informed Consent – Beyond Medicine

So, what do we learn from our medical system about our political process? For sure, there is very little informed consent from both sides of the political spectrum. Increasingly we are bullied with bullshit without reasoned proposals. Increasingly, it seems, action, any action, is extolled as the virtue we must honor and obey. Most commonly this swaggering remonstration of the candidates is directed to people who feel stressed and hopeless in order to exacerbate their sense of vulnerability and alienation. The slogan “Make America Great Again” is not followed by what steps will be taken to make such a slogan reality. At what cost? What are the consequences? Is it fair to ask what happened in the 1930s in Europe when fascist leaders claimed to make Germany and Italy great again? Hitler and Il Duce fanned the flames of anti-Semitism to explain their problems and justify their actions. Is it fair to question if now our fascist candidate is using fear of Muslims and Latinos, perhaps even women, to fan the anxiety of his supporters? When it is said, again and again, “we are going to win,” I would like to know just what are we going to win and at what cost?

An appeal to our worst fears is not informed consent. It is arrogant manipulation of the vulnerable, the insecure and those who want any answer to their problems, even if it is empty of substance, filled with high risk, dire consequences; even when presented with a condescending sneer. Asking for our consent, our vote, without concrete information is unpardonable, negligent and deceitful. Granted, too much information can be confusing, even distressful. It is our option to say we don’t want information. But the information must be there, if requested, and not filled with bluster and obfuscation.

It is important to add an important disclosure. I did become a surgeon and later a psychiatrist when it was no longer wise to stand at an operating table. My fascination with the brain and all aspects of neuroscience outweighed my distaste for surgeons of the past and I learned I did not have to be an arrogant bully to be a surgeon. During my years of training there was always a running argument about what defined a really good surgeon. Commonly, the answer floated was the surgeon who, when encountering serious trouble, could always figure a way out. For me, however, the answer remains very clear: the good surgeon (medical doctor or politician) is defined by not getting in trouble in the first place.

Finally, the application of Informed Consent, in medicine and in our political process, requires constant thoughtful formulation of the risks versus benefits in any proposal and decision process. There is risk in Everything. There is risk in too much oxygen, too much water, and too much government; or too little. The benefit of treating cancer with potentially toxic chemotherapy may well be worth the risk, considering the alternative. The benefits of our disastrous military interventions in Vietnam and Iraq were essentially zero compared to the dire risks and predictable consequences. Informed consent requires that we not only have the right to all the detailed information, if we want it; but even greater importance is being informed if our leaders understand what goes into good policy and good decisions: staying out of trouble in the first place versus scrambling to get out of trouble; understanding the ratio of risks versus benefits when placing our servicemen and women in harm’s way; or to make careful, deliberative decisions when our democratic processes and dedication to human rights could be in jeopardy; using words and language which appeal to hope and intellect and not to anger and despair.

Informed consent means careful deliberation and restraint. Arrogant, impulsive, intrusive uninformed consent is negligent and abusive. Informed consent implies the most important precept in medicine and politics: First, do no harm.