We may take it as a premise that people should have self-determination – the freedom to make decisions when these do not have material negative effects on others. Immanuel Kant, and the duty to respect people’s autonomy, are typically quoted in this regard. In the context of health care, these principles require that patients are able to choose the type of care they receive according to their preferences. This freedom may be limited by the range of services supported in the health service, and by the person’s ‘competence’; their ability to make the decision. In this blog we leave aside the debate about what services should be supported in a health system and how competence should be adjudicated. Here we consider choice of services that are supported in the health service in the context of people who are competent to make decisions.
Corollaries of the obligation to respect patients’ autonomy are two-fold – patients should be offered choice, and they should be provided with information on which a decision may be based. Indeed, such an obligation is backed in law – recently in the Montgomery case, where the court held that a pregnant woman with a suspected very large baby should have been offered a caesarean-section.
So far, so good. However, this set of principles opens up a second-order problem. This problem concerns how best to inform the decision – more simply, what information should be made available, and how this information should be presented. The first question, what information, entails the issue of how much information – this is the (narrow) topic of this blog.
The question could be answered baldly by saying: “all the information the patient needs to make the decision” should be made available. But this just kicks the can down the road – what is this information? Here we immediately run into problems. Different patients have different information needs, but there is no way to judge what these needs may be until the information has been shared. That would be fine if the potentially relevant information was limited. But that is seldom the case – a colleague found that the decision regarding caesarean vs vaginal birth turns on over 60 separate and potentially important outcomes/factors. This profusion of potentially relevant factors creates its own set of problems since there are limits to the amount of information the mind can assimilate. In fact, a point is reached where adding more information reduces decision-making capacity. Ironically, beyond this point, the mind will seize on one (or very few) factor(s) and allow the decision to turn on this narrow range of issues. Beyond a certain point, adding more information actually reduces the number of factors that impact on the decision. According to PSRC Midlands collaborator Laura Kudrna, psychologists refer to the mind as a ‘cognitive miser’ to explain this phenomenon.[1] Information overload can also exacerbate cognitive biases, such as confirmation bias and recency bias.
There are numerous strategies that may be used to mitigate this ‘more is less’ problem. The most obvious is to ‘layer’ the information in a way that allows the patient / decision-maker to determine the range and depth of information provided. Returning to the caesarean vs vaginal birth scenario, the information could be grouped in to four categories, according to factors affecting the baby vs mother over the short vs long-term. Within each category, the information could be layered, offering more or less detail as required. The problem, of course, is that people vary in what they consider most important – as stated above, there is a regress – a person cannot know whether they want certain information until they have received that information.
There is another approach to decision-making, pioneered many decades ago by Pauker and Pauker.[2] This method starts by eliciting the patients’ preferences in the form of trade-offs between different outcomes, such as having a baby who has Down’s syndrome vs. a miscarriage caused by the test to detect Down’s syndrome. The Paukers would then reconstruct the decision the patient ‘should’ make (based on those values/utilities) using expected utility theory. It would be fair to say that such an approach has never caught on. Furthermore, it would be very tedious to repeat trade-off exercises across the full range of valued outcomes that pertain to most decisions – about 60 in the caesarean example above.
The Maternal Health theme of our NIHR Midlands Patient Safety Research Collaboration (PSRC) is grappling with the above problem, as described in a previous News Blog.[3] We are seeking to link with other research groups around the world who are also looking at potential solutions. Ultimately, we are proposing a set of decision aids that can be used to assist women in making decisions at various points in the maternity pathway; training staff in non-directive counselling; making decisions aids available within electronic maternity case-notes; and pointing women and partners to online resources.
The maternity context provides particular challenges for decision support – it must consider outcomes for mother and baby; grapple with very low probabilities of serious outcomes; inform choices that are made over very different time scales (varying from months to a few minutes); and cater for a whole series of choices that may unfold over a single pregnancy. All while catering for people with very different levels of literacy, health literacy and information needs.
We are considering new approaches to the problem that too much information causes cognitive overload yet, when we ask stakeholders which information is most important, they say (nearly) all of it. There is a skill in presenting choice to people about options in their case, and there is also a skill in asking the public about how people should be asked about options for their care. One idea when we do public consultation is to simulate (act out) the consultation between professional and decision-maker. In some enactments we will present all the information designated important and in other enactments we will use a more nuanced approach where agreed key items of a certain type are presented first, and the receiver of the information is then invited to press further. All are given web pages to which they can refer, and all are invited back so that the decision is unhurried. Alternatively, or in addition, we may take a citizen jury approach where alternatives are part of the public panel who then debate the issues. Finally, the panel might be asked to rank information by salience to the question, and then, after seeing how decisions may actually play out, to choose cut-off points where the person making the decision can be invited to request more information beyond the crucial set. For example, consultees may say that every woman should know that if they select the caesarean section birth mode, then there is an increased risk that they will have a caesarean section in any subsequent pregnancy. Likewise, when considering the long-term effects of a caesarean delivery on the child, rather than run through all possible sequelae the professionally may say something like ‘There is also evidence that there may be an increased risk of allergic problems like hay fever’ and then inviting questions or providing further literature.
This is a rather complex proposed research project, but the issue of patient choice is so important that the extra effort and cost seems worth it. At the heart of our approach is recognition of the limitations of simply asking public representatives questions without providing them with some insights into how their responses may play out in practice, and how well-meaning opinions may have consequences that have not been considered. At the end of the day, it is not enough to simply consult the public because the answers will turn on how the consultation is conducted – what information is provided, the order in which it is provided, the tone of the delivery, and the context of the exercise. Previous research shows that decisions people make can be strongly influenced by how and what information is presented.[4]
— Richard Lilford, NIHR ARC West Midlands Director; NIHR Midlands PSRC Co-Director
References:
- Stanovich KE. The cognitive miser: ways to avoid thinking. In: What intelligence tests miss: the psychology of rational thought. New Haven, CT: Yale University Press; 2009. pp. 70–85.
- Pauker SP, Pauker SG. Prenatal diagnosis: a directive approach to genetic counselling using decision analysis. Yale J Biol Med. 1977; 50: 275-89.
- Lilford RJ. Informing and Facilitating Choice in Maternity Care: What Do We Know & Where Are the Research Gaps? NIHR ARC West Midlands News Blog. 30 June 2023; 5(6):3-6.
- Wragg JA, Robinson EJ, Lilford RJ. Information presentation and decisions to enter clinical trials: a hypothetical trial of hormone replacement therapy. Soc Sci Med. 2000; 51(3): 453-62.