“He alone is free who lives with free consent under the entire guidance of reason.” —Baruch Spinoza (1632-1677)
I was quite disheartened to discover that a resident ultimately failed to secure consent for a biopsy after we had spent a fair amount of time explaining to a patient the necessity of doing the procedure. It reminded me for a moment of the oft-repeated view of “informed consent” espoused by one of my residency mentors. He said, “I inform patients in whatever way I must to insure that they will consent to my recommendations.” Of course, that paternalistic attitude is not at all consonant with the current concept of informed consent. The patient has the absolute right to accept—or decline—any manner of diagnostic or therapeutic intervention, as long as the patient has been clearly told the consequences of his or her choices. Nonetheless, I would like to explore the informed consent precept a bit more.
Despite our well-meaning modern interpretation of this construct, I think it is fair to ask you to contemplate this question: Can we ever really obtain “informed consent”? [SO1] In the first place, during the limited time for each encounter, is it possible for us to educate patients sufficiently about all the obvious points and the subtle nuances, relationships, and interconnections regarding their disease state and why we make this or that recommendation? In other words, can we turn the layman into a specialist in 5 to 15 minutes? And even if we just convey the smallest number of key highlights that should direct a potential medical decision, will the patient understand what we—what you—are saying? Factors that might well interfere with true comprehension could include the patient’s age, cognitive capabilities, education level, background pain, and apprehension. Use of medical jargon might also interfere with the patient’s consent actually being “informed.” Words we take for granted—“metastasis” might be a good example—may not be understood by the average patient. Taking all the aforementioned items into account, it is no wonder that research has found a frequent disconnect between a patient’s personal perception of feeling well informed and the reality of his or her actual degree of knowledge and insight.[SO2]
One concrete suggestion I can offer: When you are done presenting your case, before the patient signs on the proverbial dotted line, ask the patient in a straightforward way if he or she understood everything that was just said. Believe it or not, this is rarely done. Several studies have shown that physicians directly ask patients whether they understood a foregoing consent discussion less than 2% of the time. (JAMA 1999;282:2313-23) To prevent miscommunication and misunderstanding, one way to verify comprehension is to use the teach-back technique: asking patients to repeat by re-phrasing in their own words what they have just been told. Afterwards, as a conclusion, always invite the patient to ask questions or express lingering concerns. Should the patient have a friend or family member present, also invite them to participate in the discussion.
And what might you do if you run into a problem with an informed consent? Try to fully understand why this problem has appeared. For example, there might be a disconnect or a mismatch between what the patient actually wants and what the physician assumes that the patient wants. This reminds me of a 96-year-old, frail lady who was brought to my office with an obvious locally advanced basal cell carcinoma of the anterior aspect of the nose. Since she had already declined complex surgery at a famous cancer hospital nearby, I assumed she was there to discuss alternative medical treatment. In fact, she just wanted a clear explanation of her chances of dying (or not) due to the tumor, which she was perfectly willing to let run its course. She couldn’t obtain such information from her previous provider, who was apparently very dismissive once she refused surgery.
Yet another reason the informed consent process might be difficult is patient fear. For example, a patient might worry about the pain associated with a biopsy, excision, or ablative process, be it from the injection of local anesthesia or the manner of securing/destroying tissue itself. The patient might worry about consequent scarring or time for complete recuperation. Because the patient might be embarrassed to admit fear, watch for nonverbal signs of fear when the patient is reluctant to give informed consent. These might include facial microexpressions such as slightly raised eyebrows, a taut brow, a half-open mouth, or trembling lips. Other signs of fear include pale skin, sweating, hurried breathing, and twisting or clenched hands. The way to overcome fear is to directly and in a non-judgmental manner ask about it, and review (or re-review) any details that might assuage trepidation. You might emphasize positive aspects of your technique: use of buffered lidocaine to decrease local anesthetic stinging and burning, for instance.
A final consideration is this: Where do you stand if the patient still refuses consent for a medically necessary diagnostic or therapeutic procedure, like the real-life patient scenario with which I began this editorial? You are then faced with two conflicting ethical considerations: autonomy (the patient’s absolute right to choose) and beneficence (professional duty to act in the best interest of the patient). Of course, this conflict plays out against a legal climate which is litigious at best, and hostile at worst. In other words, and put simply: you are between a rock and a hard place! There is no simple escape from this dilemma and a detailed discussion of this problem is beyond the scope of this short piece. However, I suggest you read the following 2019 article if this potential conundrum intrigues you: “What are the ethical and legal considerations when your patient refuses the standard of care?” in Dermatology Online Journal at https://escholarship.org/uc/item/4gj325n0.
Informed consent is much more than a signature on a form. The dialogue between you and the patient is the key element of informed consent. Always put yourself in the patient’s place for a second, and please take the time to conduct this dialogue to the best of your ability each and every time.