Earlier this season on AMC’s popular drama Mad Men (a series set in the 1960s), a character named Anna is diagnosed with terminal cancer. When viewers see her, the disease has invaded and fractured her leg and, we’re told, she has only a few months left to live. Anna, however, is blissfully unaware of her condition – she believes that in a few weeks she will be dancing again. How can an independent middle-aged woman be diagnosed with cancer and not be aware of it? In this instance, it’s because her sister and doctors have agreed that it is in Anna’s best interest not to know.
When series lead Don Draper learns of the situation, he is, at first, furious. “I'm here now,“ he tells Anna’s sister, “she's going to see some real doctors, and she's not going to live in the dark."
"You have no say in the affairs of this family," the sister replies. "You're just a man in a room with a checkbook." Ultimately, Draper decides to honor her request to "do the decent thing" and leave before he reveals the diagnosis.
Pretty shocking, isn’t it? Could you envision this “decent thing” happening to you? I should hope not. Most readers would agree that it is intrinsically wrong for a physician or family member to decide what personal health information is “good” for an independent adult to know. But, just fifty years ago, withholding health information was standard practice. What has changed? Respect for patient autonomy.
Patient autonomy is one of the four core principles of medical ethics – famously articulated by Justice Benjamin Cardozo in 1914. “Every human being of adult years and sound mind has a right to determine what shall be done with his own body.” But, as accurately portrayed in Mad Men, this basic principle was not widely accepted until the last half century. Before then, there existed a quaint and persuasive notion that doctors were best equipped to make decisions about what information was healthy for their patients and what was not – just as a parent would do with diet choices for a young child. The transformation from a paternalistic, “we know what is best” approach to an autonomous approach was spurred not just by the words of Justice Cardozo, but also by revelations about unethical medical studies (including the “research” atrocities committed in Nazi Germany and the infamous Tuskegee (Alabama) syphilis studies in which infected African-Americans were neither told their diagnosis nor offered treatment.) These abuses made the critical weakness of paternalistic medicine – the potential for abuse in the name of another’s best interests – unmistakable and unacceptable. Nowadays, a competent patient cannot receive a medical intervention or participate in a research trial without autonomously giving “informed consent.”
So, what do you, as a patient or a potential patient, need to know about protecting your autonomy and giving informed consent? Well, let’s consider an example; a common operation like an appendectomy. Before your surgeons can proceed, they must explain to you the procedure’s risks (bleeding/infection), benefits (avoiding appendix rupture), and alternatives (wait-and-see approach). Then, they will have you sign a document to prove that you have been informed and given your consent. What they won’t necessarily do is ensure that you have understood all the details. Studies have demonstrated that, in general, patients’ understanding of consent information is spotty at best – a survey of people involved in a clinical trial of a cholesterol-lowering medication found that only 31% could name the main side effect of the treatment. How informed is your consent if you don’t know what side effects to look out for?
The burden of understanding your medical care does, I’m afraid, fall primarily on you, the patient. And a critical component of this understanding is considering what information is of particular importance to you. The legal standard for disclosure of information is based on what a “reasonable” patient would want to know. But I suggest that your personal standard be your response to a friend’s query, “What the heck is it they want to do to you?” When it comes to an appendectomy, there may not be much variance in how people respond. That may not, however, be the case for other medical tests or interventions.
What about a blood test that could determine if you’re at risk for developing dementia at a young age? This type of test doesn’t exist, but if it did, would you take it? How important would its accuracy be to you and what percentage of “false positives” could you live with? Of course you’d want to know if there were risks involved. But also consider the ramifications of being told that your productive life will be cut short by twenty or so years. Making a choice about whether to know that or not is a very personal calculation. Is this information you would want to know, or is this a case where ignorance is bliss? In this day and age, your doctors cannot withhold a diagnosis of cancer from you, but they may someday be able to offer you a test that predicts your risk of cancer. How much would you want to know? Even if you are young and healthy, it’s never too early to think about what you’d do – or want done. Medical ethics can be sticky, informed consent can seem esoteric, but it’s your consent regarding your health. Embrace your autonomy.
