The Limits of Informed Consent for an Overwhelmed Patient: Clinicians’ Role in Protecting Patients and Preventing Overwhelm

J. Bester, C.M. Cole, & E. Kodish.

AMA J Ethics. 2016;18(9):869-886.

doi: 10.1001/journalofethics.2016.18.9.peer2-1609.

Abstract

In this paper, we examine the limits of informed consent with particular focus on ways in which various factors can overwhelm decision-making capacity. We introduce overwhelm as a phenomenon commonly experienced by patients in clinical settings and distinguish between emotional overwhelm and informational overload. We argue that in these situations, a clinician’s primary duty is prevention of harm and suggest ways in which clinicians can discharge this obligation. To illustrate our argument, we consider the clinical application of genetic sequencing testing, which involves scientific and technical information that can compromise the understanding and decisional capacity of most patients. Finally, we consider and rebut objections that this could lead to paternalism.

(cut)

Overwhelm and Information Overload

The claim we defend is a simple one: there are medical situations in which the information involved in making a decision is of such a nature that the decision-making capacity of a patient is overwhelmed by the sheer complexity or volume of information at hand. In such cases a patient cannot attain the understanding necessary for informed decision making, and informed consent is therefore not possible. We will support our thesis regarding informational overload by focusing specifically on the area of clinical whole genome sequencing—i.e., identification of an individual’s entire genome, enabling the identification and interaction of multiple genetic variants—as distinct from genetic testing, which tests for specific genetic variants.

We will first present ethical considerations regarding informed consent. Next, we will present three sets of factors that can burden the capacity of a patient to provide informed consent for a specific decision—patient, communication, and information factors—and argue that these factors may in some circumstances make it impossible for a patient to provide informed consent. We will then discuss emotional overwhelm and informational overload and consider how being overwhelmed affects informed consent. Our interest in this essay is mainly in informational overload; we will therefore consider whole genome sequencing as an example in which informational factors overwhelm a patient’s decision-making capacity. Finally, we will offer suggestions as to how the duty to protect patients from harm can be discharged when informed consent is not possible because of emotional overwhelm or informational overload.

(cut)

How should clinicians respond to such situations?

Surrogate decision making. One possible solution to the problem of informed consent when decisional capacity is compromised is to seek a surrogate decision maker. However, in situations of informational overload, this may not solve the problem. If the information has inherent qualities that would overwhelm a reasonable patient, it is likely to also overwhelm a surrogate. Unless the surrogate decision maker is a content expert who also understands the values of the patient, a surrogate decision maker will not solve the problem of informed consent. Surrogate decision making may, however, be useful for the emotionally overwhelmed patient who remains unable to provide informed consent despite additional support.

Shared decision making. Another possible solution is to make use of shared decision making (SDM). This approach relies on deliberation between clinician and patient regarding available health care choices, taking the best evidence into account. The clinician actively involves the patient and elicits patient values. The goal of SDM is often stated as helping patients arrive at informed decisions that respect what matters most to them.

It is not clear, however, that SDM will be successful in facilitating informed decisions when an informed consent process has failed. SDM as a tool for informed decision making is at its core dependent on the patient understanding the options presented and being able to describe the preferred option. Understanding and deliberating about what is at stake for each option is a key component of this use of SDM. Therefore, if the medical information is so complex that it overloads the patient’s decision-making capacity, SDM is unlikely to achieve informed decision making. But if a patient is emotionally overwhelmed by the illness experience and all that accompanies it, a process of SDM and support for the patient may eventually facilitate informed decision making.

The info is here.

The human black-box: The illusion of understanding human better than algorithmic decision-making

Bonezzi, A., Ostinelli, M., & Melzner, J. (2022). 

Journal of Experimental Psychology: General.

Abstract

As algorithms increasingly replace human decision-makers, concerns have been voiced about the black-box nature of algorithmic decision-making. These concerns raise an apparent paradox. In many cases, human decision-makers are just as much of a black-box as the algorithms that are meant to replace them. Yet, the inscrutability of human decision-making seems to raise fewer concerns. We suggest that one of the reasons for this paradox is that people foster an illusion of understanding human better than algorithmic decision-making, when in fact, both are black-boxes. We further propose that this occurs, at least in part, because people project their own intuitive understanding of a decision-making process more onto other humans than onto algorithms, and as a result, believe that they understand human better than algorithmic decision-making, when in fact, this is merely an illusion.

General Discussion

Our work contributes to prior literature in two ways. First, it bridges two streams of research that have thus far been considered in isolation: IOED (Illusion of Explanatory Depth) (Rozenblit & Keil, 2002) and projection (Krueger,1998). IOED has mostly been documented for mechanical devices and natural phenomena and has been attributed to people confusing a superficial understanding of what something does for how it does it (Keil, 2003). Our research unveils a previously unexplored driver ofIOED, namely, the tendency to project one’s own cognitions on to others, and in so doing extends the scope of IOED to human deci-sion-making. Second, our work contributes to the literature on clinical versus statistical judgments (Meehl, 1954). Previous research shows that people tend to trust humans more than algorithms (Dietvorst et al., 2015). Among the many reasons for this phenomenon (see Grove & Meehl, 1996), one is that people do not understand how algorithms work (Yeomans et al., 2019). Our research suggests that people’s distrust toward algorithms may stem not only from alack of understanding how algorithms work but also from an illusion of understanding how their human counterparts operate.

Our work can be extended by exploring other consequences and psychological processes associated with the illusion of understand-ing humans better than algorithms. As for consequences, more research is needed to explore how illusory understanding affects trust in humans versus algorithms. Our work suggests that the illusion of understanding humans more than algorithms can yield greater trust in decisions made by humans. Yet, to the extent that such an illusion stems from a projection mechanism, it might also lead to favoring algorithms over humans, depending on the underly-ing introspections. Because people’s introspections can be fraught with biases and idiosyncrasies they might not even be aware of (Nisbett & Wilson, 1977;Wilson, 2004), people might erroneously project these same biases and idiosyncrasies more onto other humans than onto algorithms and consequently trust those humans less than algorithms. To illustrate, one might expect a recruiter to favor people of the same gender or ethnic background just because one may be inclined to do so. In these circumstances, the illusion to understand humans better than algorithms might yield greater trust in algorithmic than human decisions (Bonezzi & Ostinelli, 2021).

A pdf of the research is here.

Curiosity and What Equality Really Means

Atul Gawande
The New Yorker
Originally published June 2, 2018

Here is an excerpt:

We’ve divided the world into us versus them—an ever-shrinking population of good people against bad ones. But it’s not a dichotomy. People can be doers of good in many circumstances. And they can be doers of bad in others. It’s true of all of us. We are not sufficiently described by the best thing we have ever done, nor are we sufficiently described by the worst thing we have ever done. We are all of it.

Regarding people as having lives of equal worth means recognizing each as having a common core of humanity. Without being open to their humanity, it is impossible to provide good care to people—to insure, for instance, that you’ve given them enough anesthetic before doing a procedure. To see their humanity, you must put yourself in their shoes. That requires a willingness to ask people what it’s like in those shoes. It requires curiosity about others and the world beyond your boarding zone.

We are in a dangerous moment because every kind of curiosity is under attack—scientific curiosity, journalistic curiosity, artistic curiosity, cultural curiosity. This is what happens when the abiding emotions have become anger and fear. Underneath that anger and fear are often legitimate feelings of being ignored and unheard—a sense, for many, that others don’t care what it’s like in their shoes. So why offer curiosity to anyone else?

Once we lose the desire to understand—to be surprised, to listen and bear witness—we lose our humanity. Among the most important capacities that you take with you today is your curiosity. You must guard it, for curiosity is the beginning of empathy. When others say that someone is evil or crazy, or even a hero or an angel, they are usually trying to shut off curiosity. Don’t let them. We are all capable of heroic and of evil things. No one and nothing that you encounter in your life and career will be simply heroic or evil. Virtue is a capacity. It can always be lost or gained. That potential is why all of our lives are of equal worth.

The article is here.

Train PhD students to be thinkers not just specialists

Gundula Bosch
nature.com
Originally posted February 14, 2018

Under pressure to turn out productive lab members quickly, many PhD programmes in the biomedical sciences have shortened their courses, squeezing out opportunities for putting research into its wider context. Consequently, most PhD curricula are unlikely to nurture the big thinkers and creative problem-solvers that society needs.

That means students are taught every detail of a microbe’s life cycle but little about the life scientific. They need to be taught to recognize how errors can occur. Trainees should evaluate case studies derived from flawed real research, or use interdisciplinary detective games to find logical fallacies in the literature. Above all, students must be shown the scientific process as it is — with its limitations and potential pitfalls as well as its fun side, such as serendipitous discoveries and hilarious blunders.

This is exactly the gap that I am trying to fill at Johns Hopkins University in Baltimore, Maryland, where a new graduate science programme is entering its second year. Microbiologist Arturo Casadevall and I began pushing for reform in early 2015, citing the need to put the philosophy back into the doctorate of philosophy: that is, the ‘Ph’ back into the PhD.

The article is here.

Informed Patient? Don’t bet on it

Mikkael Sekeres and Timothy Gilligan
The New York Times
Originally posted March 1, 2017

Here is an excerpt:

The secret is that informed consent in health care is commonly not-so-well informed. It might be a document we ask you to sign, at the behest of our lawyers, in case we end up in court if a bad outcome happens. Unfortunately, it’s often not really about informing you. In schools, teachers determine what students know through tests and homework. The standard is not whether the teacher has explained how to add, but instead whether the student can add. If we were truly invested in whether you were informed, we’d give you a quiz, or at least ask you to repeat back to us what you heard so we could assess its accuracy.

The article is here.

Teaching doctors how to engage more and lecture less

By Sandra G. Boodman
The Washington Post
Originally posted March 9, 2015

Here is an excerpt:

“Doctors are explainaholics,” Tulsky said. “Our answer to distress is more information, that if a patient just understood it better, they would come around.” In reality, bombarding a patient with information does little to alleviate the underlying worry.

The “Empathetics” program teaches doctors “how to show up, not what to say,” said Riess. “We do a lot of training in emotional recognition and self-monitoring.” That includes learning to identify seven universal facial expressions — using research pioneered by psychologist Paul Ekman — and to take stock of one’s own emotional responses to patients or situations.

The entire article is here.

What don't students understand about morality?

By David Morrow
The Philosopher's Cocoon
Originally published November 19, 2013

Here is an excerpt:

Here are a few more false beliefs that I suspect many students bring to our intro courses:

1. "Morality is just a matter of opinion," which they take to mean that moral claims are neither true or false. 
2. Morality, like law, must be positivistic—that is, something can be right or wrong only if someone or something says that it's right or wrong. (Thus, "Who's to say what's right or wrong?") 
3. "Morality is just your personal feelings." This is a wishy-washy mix of emotivism and subjectivism. It entails that you're always right about moral claims that apply to yourself, and so obviously conflicts both with (1) and with cultural relativism. 
4. Saying that x is wrong is equivalent to saying that anyone who does x should be punished. (Now, Mill says something like this, but allows that the punishment could be left to one's own conscience. Many students seem to think that "society," in some form or another, should punish the person.)

The entire article is here.

Reviewing Autonomy

Implications of the Neurosciences and the Free Will Debate for the Principle of Respect for the Patient's Autonomy

Sabine Muller & Henrik Walter. Cambridge Quarterly of Healthcare Ethics. New York: Apr 2010. Vol. 19, Iss. 2; pg. 205, 13 pgs

Introduction

Beauchamp and Childress have performed a great service by strengthening the principle of respect for the patient's autonomy against the paternalism that dominated medicine until at least the 1970s. Nevertheless, we think that the concept of autonomy should be elaborated further. We suggest such an elaboration built on recent developments within the neurosciences and the free will debate. The reason for this suggestion is at least twofold: First, Beauchamp and Childress neglect some important elements of autonomy. Second, neuroscience itself needs a conceptual apparatus to deal with the neural basis of autonomy for diagnostic purposes. This desideratum is actually increasing because modern therapy options can considerably influence the neural basis of autonomy itself.

Beauchamp and Childress analyze autonomous actions in terms of normal choosers who act (1) intentionally, (2) with understanding, and (3) without controlling influences (coercion, persuasion, and manipulation) that determine their actions. ¹ In terms of the free will debate, the absence of external controlling influences, their third criterion, corresponds to the freedom of action: to do what one wants to do without being hindered to do so. Criteria one and two are related to volition: that a choice is intentional, that is, that it has a certain goal that is properly understood by the person choosing.

According to Beauchamp and Childress, the principle of autonomy implies that patients have the right to choose between different medical therapy options taking into account risks and benefits as well as their personal situation and individual values. To enable an autonomous decision the procedure of informed consent ² has been developed. This procedure has become the gold standard in almost every part of medicine. Importantly, Beauchamp and Childress demand respect for a patient's autonomy under the premise that the patient is able to act in a sufficiently autonomous manner. ³ The crucial question in a special situation is whether this is the case.

Let us consider the example of the recent controversial discussion of Body Integrity Identity disorder: ⁴ If a patient asks a physician to amputate one of his legs although it neither hurts nor is deformed, paralyzed, or ugly (in the patient's view), and if the patient understands the consequences of the amputation and is not controlled by external influences, then one could deduce from the principle of respect for the patient's autonomy that the physician should amputate the leg. Although some commentators regard this as self-evident, we think that the case is not yet made, as it is important which internal processes have led to the wish of the patient.

We propose to add a fourth criterion for autonomous actions, namely, freedom of internal coercive influences. In the case of the patient who desires an amputation, it would have to be investigated whether his decision is based on internal coercion. Clear examples for that would be an acute episode of schizophrenia or a brain tumor. More controversial are neurotic beliefs, obsession and compulsion, severe personality disorders, or neurological dysfunctions not accessible with conventional diagnostic tools.

Although Beauchamp and Childress have not elaborated the principle of autonomy with regard to internal coercions, they clearly argue that the obligations to respect autonomy do not apply to persons who show a substantial lack of autonomy because they are immature, incapacitated, ignorant, coerced, or exploited, for example, infants, irrationally suicidal individuals, severely demented subjects, or drug-dependent patients. ⁵ But these kinds of patients are treated in medical ethics as exceptions and therefore as marginal cases. They are not considered to be important for the formulation of the principles.

The rest of the article can be found here.  Without access to PubMed.gov, it is not available for free.  A university library may also be helpful in reading the entire article.