Tomorrow morning, I’ll be having a routine medical procedure done. This normally wouldn’t have much philosophical worth, but there will be a moment of dialogue that is crucial for our growing understanding of what the doctor/patient relationship is, could become, and in what new light we might learn to value this relationship.
This moment also (and entirely coincidentally…) happens to be what I’ll be spending the next year of my life working on in the process of completing my senior honors thesis in the field of bioethics. So there’s that.
See, right before the doctor puts me to sleep, she will read through a series of risks associated with the procedure, ask me if I understand them and their weighted value in comparison to the rewards of having the procedure done, and ask me to sign a form indicating this understanding and giving my consent.
This wasn’t always how things worked, though. The notion of informed consent is a fairly novel idea in the history of legal requirements in medicine. Prior to 1957, with the decision Salgo v. Leland Stanford Jr. University Board of Trustees and the more formalized opinion in Natanson v. Kline, there was no legal notion of informed consent. Medicine was, for a long time and without much contention, a field in which doctors passed out treatments without much explanation or justification.
Which isn’t to say that they were tyrants in any damaging sense of the word. Rather, the body of opinion rested firmly on the idea that the doctor/patient relationship was one in which the doctor prescribed treatment based on her informed medical opinion to a lay patient who, not understanding the situation himself, trusted the opinion of his physician.
We can see this belief peek through in the Hippocratic Oath (which in my younger years I called the Hypocritical Oath, a far more confusing notion). The relevant bit goes like this:
I swear by Apollo, the healer, Asclepius, Hygieia, and Panacea, [now that’s how you start an oath…]:
…I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.…
The key terms here are “for the good” and “never do harm”. This is known as the beneficence clause of a doctor’s oath.
That was the traditional occupation of doctors: to do good by their patients and never to harm them. And the medical community has always implicitly construed these goods and harms as having to do with bodily health. Who can blame them?
But as we’ve progressed as a society, our views of harms and goods have become more complex. We realize that sometimes the desires of a patient are not so simple as ‘to survive’; that they may wish to live their last days with dignity, or in blissful ignorance. The individuals and the situations vary.
Doctors are medical practitioners, not moral arbiters. Their position in guiding medical diagnoses and prognostic options should not be conflated with a special insight into the right choice. Affirming this point in his book How We Die, surgeon Sherwin Nuland recounts his history in practicing medicine:
More than a few of my victories have been Pyrrhic. The suffering was sometimes not worth the success…. [H]ad I been able to project myself into the place of the family and the patient, I would have been less often certain that the desperate struggle should be undertaken.
Which is not to say that the fight is itself undesirable, but rather that an understanding of what that desire represents and could potentially mean is vital to a patient’s valuing his autonomy and making an informed decision. This idea, this simultaneous weighting of autonomy and beneficence as cohabitants in a reasonable relationship, is informed consent.
The desire for informed consent arises from a non-parity in the respective knowledge bases of the patient and the doctor. As framed in the landmark decision Arato v. Avedon, this non-parity concern evolves into a moral demand for informed consent in three steps:
1) Patients are generally not knowledgeable of medicine and the medical sciences, and therefore do not have comparable knowledge to that of their physician.
2) Yet, an adult of sound mind both has the right and obligation to exercise control over his own body and to determine whether and which medical treatment he should submit himself to.
In combining these two premises, we arrive at an obvious conclusion:
3) The patient depends on his physician and trusts that he will honestly convey the information upon which he relies during the course of the decision-making process as well as all of the relevant risks and rewards of the proposed. As a result, the physician has an obligation to provide this information.
Today, this may seem a fairly uncontroversial conclusion. Yet, as we examine the question, it becomes less and less simple.
In The Cancer Ward, novelist Alexander Solzhenitsyn poignantly captured the concern that arises from informed consent. When a patient challenges her doctor’s right to make unilateral decisions on the patient’s behalf, the doctor gives a troubled but certain answer, “But doctors are entitled to the right—doctors above all. Without that right, there’d be no such thing as medicine.”
A more critical examination of this concern can be found in Thomas Duffy’s article “Agamemnon’s Fate and the Medical Profession: from the New England Law Review, where he argues, “Paternalism exists in medicine to fulfill a need created by illness.” That is, it is not the doctor that is limiting the patient’s autonomy, but a necessary characteristic of a situation constructed by the illness to which both doctor and patient must respond as best they can.
But this carries an implicit thesis: that the physician still knows best (at a moral level). How can this be so when there is still so much doubt in medicine? In the words of Dr. Brian Goldman during his TED Talk Doctors Make Mistakes: Can We Talk About That?, “If you take the system… and weed out all the ‘error-prone’ health professionals, well… there won’t be anybody left.”
Or, as Dr. Alvan Feinstein said in his book Clinical Judgment:
Clinicians are still uncertain about the best means of treatment for even such routine problems as… a fractured hip, a peptic ulcer, a stroke, a myocardial infarction… At a time of potent drugs and formidable surgery, the exact effects of many therapeutic procedures are dubious or shrouded in dissension.
Or, because of Dr. Gregory House, the now infamous desire to solve The Riddle, as Dr. Sherwin Nuland elaborates:
[A surgeon] allows himself to push his kindness aside because the seduction of The Riddle is so strong and the failure to solve it is so weak. [Thus, at times he convinces] patients to undergo diagnostic or therapeutic measures at a point in illness so far beyond reason that The Riddle might better have remained unsolved.
Given all of this, I cannot help but think it unwise and unfair to demand moral guidance from our physicians in addition to medical prognoses.
And indeed, sentiment has already shifted in many regards in this direction. The Presidential Commission conducted a survey in`1961 in the Journal of the American Medical Association, which found that 90% of doctors did not inform patients of cancer diagnoses. Sixteen years later, in 1977, 97% of doctors surveyed routinely disclosed a cancer diagnosis. The times, they are a’changing.
But the situation is not so simply addressed. The questions are incredibly complicated. Let me offer you an example, crafted by Dr. John Arras in his essay “Antihypertensives and the Risk of Temporary Impotence: A Case Study in Informed Consent.”
In this thought experiment, a patient with hypertension, for whom diet and exercise has failed as a remedy, seeks medical assistance from his Primary Care Physician, Dr. Kramer. Dr. Kramer generally prescribes “a common diuretic, hydrochlorothiazide, as the second line of defense [after diet and exercise]” for hypertension, due to its cheapness and effectiveness.
The drug had a potential side effect of causing temporary impotence in 3-5% of men who took the pill; the impotence would resolve upon completion of the treatment or discontinued. Dr. Kramer wonders if she should tell her patient about this risk, considering that he is a newlywed and may find this a particularly problematic time to be experiencing such issues; she reasons that he may be willing to pay extra for a more expensive drug that would not cause this problem.
Dr. Kramer consults with another physician who suggests, “The risk is quite low, entirely reversible, and consider this: if you share this possible side effect with your patient, this little bit of truth is likely to make him extremely anxious about what could happen…. Telling him about the risk of impotence could actually make [him] so worried that he would become impotent at your suggestion.”
Here we have an instance of apparently direct conflict between beneficence and autonomy. What should the doctor do?
Consider a less trivial situation, where a patient has been diagnosed with Hepatosplenic T-Cell Lymphoma, an almost-always fatal condition. Is a doctor obligated to tell the patient, even if treatment is not an option? What if the patient does not want to be informed? Or has a heart condition that may be exacerbated by the knowledge? How do we weigh these concerns?
Moreover, is truly informed consent even possible? It is a commonly recorded psychological phenomenon that people undervalue the risk of actions. Take cigarette smoking. The ‘it won’t happen to me’ belief is ubiquitous: we understand there is a statistical risk, but dissociate ourselves from the statistic.
How can we actually subvert this common psychological move? And, if it turns out we cannot, does that force us to recalculate the balance between beneficence and autonomy? If an individual cannot accurately assess his own risk, should we leave the choices to those who are dissociated enough that they can?
These are difficult, troubling questions. But these questions have yet to be satisfactorily answered, and they need to be. As Dr. Pauline Chen argued in her New York Times essay, in its current form, informed consent is often a theater act:
Pete looked away from me and stared at the consent form. Yet even as I watched his brows knit together, his eyes widen then wince, I kept on talking. I had gone into my inform consent mode — a tsunami of assorted descriptions and facts delivered within a few minutes. If Pete had wanted me to pause and linger over something, I never knew. He couldn’t get a word in edgewise….
Pete signed the consent. But as he took the pen to paper, I couldn’t help noticing the tremor in his hand and the pall that had suddenly descended upon the room and our interaction.
The common lingo among physicians is ’to consent the patient’. Linguistically, it is not an actively forged relationship between patient and physician, it is an action performed on the patient, a legal requirement that must be completed before getting down to business. We need to do so much better.
These questions push us to the limit of what ethics can grapple with. They cannot be answered in a brief article. They demand of us careful consideration. Or maybe I’m just bigging-up my honors thesis…
Anyway, I suppose I don’t really have a conclusion this week. Sorry. I don’t know what to tell you. I’ll be trying to come up with satisfactory answers to these questions over the next year.
I’ll let you know when I figure it all out. BRB.