A recent study has drawn attention to the relatively poor medical reasoning capabilities of terminally-ill patients. When confronted with complicating factors, a group of terminal cancer patients demonstrated decreased appreciation and understanding of their prognosis in comparison to their healthy adult counterparts. More concerning, perhaps, is the study’s finding that attending physicians were not consistent in recognizing these deficiencies in competence. Ultimately, the study supports mounting evidence that the stark divide we draw between individual autonomy and institutional paternalism is too simplistic. Patient competence is overestimated and physicians’ impact is underappreciated. These findings have important implications for our conceptualization of informed consent.
Informed consent is a process, made up of the many communications between a doctor and a patient (or clinical investigator and research participant). Details regarding the purpose, benefits, and risks of, as well as alternatives to, a given treatment are relayed so as to enable potential clients to deliberate and decide whether the medical intervention offered aligns with their interests. As a patient has all the freedom to decide what should or should not happen to her body prior to undergoing a clinical trial or medical procedure, the decision is to be made free from coercion, and the doctor is to act so as to facilitate patient decision-making. Achieving this requires adequate, accurate information be provided in terms the patient can easily understand.
Legally, informed consent represents a basic threshold of competency that a patient must be assisted in meeting in order to legally acquiesce to a medical procedure. It exists to safeguard bodily integrity — the right of self-determination over our bodies. It grants legal permission and protects healthcare providers from liability.
Morally, informed consent is a compromise between epistemic merits and welfare interests. Informed consent balances doctors’ general medical expertise against patients’ unique knowledge of their preferences. While physicians might know best how to treat injury and combat afflictions, they are less equipped to make determinations about the kind of risks a patient is willing to take or the value she might place on different outcomes. As patients must live with the consequences of whatever decision is made, we tend to privilege patient autonomy. Once properly informed, we believe that the patient is best-positioned to determine the most suitable course of treatment.
The trouble, as studies like this show, is that patients are not the autonomous healthcare consumers we assume them to be. They are often dependent on the doctor’s expertise and medical advice as many suffer from some combination of informational overload and emotional overwhelm. Patients’ weak grasp of their medical prognosis is offset only by the trust they have in their physician and a general deference to authority.
This means that informed consent is, in many cases, simply not possible. Patients who are very young, very ill, mentally impaired, or even merely confused are not capable of demonstrating sufficient competence or granting meaningful permission. Unfortunately, patient literacy is overestimated, communication barriers go undetected, and patient misunderstanding and noncompliance continues. Findings suggest that thorough assessment of patient competence is rare, and patients’ comprehension is questioned only in those cases where a patient’s decision deviates from the physician’s recommendations.
An increased focus on patient education may not be enough to combat these problems. Efforts to present information in a more accessible manner may bring some improvement, but there are many medical situations where the sheer complexity or volume of the information involved outstrips the decision-making capacity of everyday patients. Some types of medical information, like risk assessments, use probability estimates that would require formal training to fully appreciate and thus overburden patients’ capacity to adequately comprehend and reasonably deliberate. In such cases, no amount of dialog would allow a patient to attain the understanding necessary for informed decision-making.
In the end, the possibility of an equitable doctor/patient consultation is rarely a reality. As Oonagh Corrigan explains,
There needs to be a realisation that the type of illness a patient is suffering from, her anxiety about the likely trajectory of her illness, her expectations about treatment and, in general, her implicit trust in the doctor and medical science mean that ‘informed choices’ based on an adequate understanding of the information and on careful consideration of the potential benefits and risks, are difficult to achieve in practice.
We cannot maintain our idealistic divide between autonomous decision‐making on the one hand, and autocratic paternalism on the other. From framing effects to geographic bias, a physician is bound to have a greater hand in decision making than our common conception of the dynamic allows.
Some may say that this liberty is sufficiently curtailed by the Hippocratic Oath. A doctor’s duty to the health of a patient is thought to limit the possibility of abuse. But the physician’s obligation to do no harm offers little guidance on the ground. The duties of nonmaleficence and beneficence share no necessary tie to the particular social and cultural values of patients. They would, for example, recommend the administering of blood transfusions to patients whose deeply-held religious beliefs disallow it.
Finding a suitable middle ground between individual autonomy and institutional paternalism is particularly tricky. The territory of informed consent is already a political battleground. One need look no further than the dispute concerning mandatory pre-abortion counseling or talk therapy for transgender patients. While we may wish physicians to take a larger role in the care of those who genuinely lack capacity, this would inevitably lead to the silencing of legitimate interests. Any acceptable resolution of this tension is bound to be hard-won.