The Theoretical Framework for Choice
Clinician/patient communication is a vast subject. Enabling preference-based choice is a particular issue within this broad topic. Maternity care provides a particularly large set of choices, covering prenatal diagnosis, medical disorders in pregnancy, the timing and mode of birth, and so on. At the heart of many of these decisions lies a trade-off between foetal and maternal outcomes.
Patient Choice & Maternity Care
It has been four decades since publication of the seminal work on Clinical Decision Analysis by Weinstein and Fineberg.[1] In turn, these authors built on the work of von Neumann & Morgenstern [2] and John Nash.[3] Decision Analysis (formally Expected Utility Theory) provides an intellectual framework for choice by decomposing decisions into values and probabilities, and using these quantities to calculate the expected utility of various courses of action. Expected Utility Theory was first used to inform choice of pre-natal diagnosis for Down’s syndrome by Pauker and Pauker.[4] The technique was then used to decompose choice of mode of birth for Breech Delivery.[5]
Although Expected Utility Theory provided an axiomatic framework for decision analysis, the explicit valuation of preferences that it entails was seldom practice in the consulting room. Rather, explicit valuations were used to represent group preferences for group decisions – that is to say, Expected Utility Theory was adapted by economists in the form of Cost Utility Analysis. While the idea of eliciting explicit trade-off functions never took off in clinical practice (with a few brave exceptions such as Pauker & Pauker above [4]), the underlying theory made the role of preferences explicit.
The Wane of Paternalistic Care and Rise of Non-Directive Counselling
Application of Expected Utility Theory to choices in health care in the 1970s and 1980s coincided with strong challenge by sociologists, such as Ann Oakley and Angela Coulter, to the ‘paternalistic’ model of patient/doctor communication. Ideas of non-directive counselling, and later of ‘shared decision making’, became popular – the latter emphasising the need for emotional support in the decision-making process.
Inherent in these ideas of non-directive counselling was the need to present women and their partners with the probabilities on which trade-offs turn. Since the best way to do this was not self-evident, a strong theme of research developed into how to maximise understanding of probabilities. This work was underpinned by the Nobel prize-winning work of Khaneman & Tversky,[6] which showed, among other things, that people are strongly influenced in their choices not just by the probabilities, but by how these numerical probabilities are presented. Gird Gigerenzer [7] and many others rose to the challenge of turning these findings into recommendations for practice. This work has yielded evidence-based guidelines covering many facets of the subject – framing probabilities both positively and negatively (there is a 98% chance of survival – a 2% chance of death) to avoid ‘anchoring’; using proportions rather than simple frequencies (0.5% not 1/200); using natural frequencies not proportions to explain contingent probabilities (50 people in 1,000 test positive for Down’s syndrome and of them 20 will have Down’s syndrome); and use pictorial descriptions of such quantities. For a majestical review of the state of the science in presenting probabilities see Spiegelhalter.[8]
Finding out how to frame probabilities is one thing, but how to implement this knowledge in practice is another. Two (non-exclusive) themes of work evolved to deal with this issue: decision aides and clinician education.
Decision Aids
A definition of a decision aid from ChatGPT is shown in the box.
“A decision aid is a tool or resource that provides information, guidance, and support to help individuals or groups make informed and effective decisions. It can take various forms, such as a checklist, a flowchart, a decision tree, a computer program, or a consultation with an expert. The purpose of a decision aid is to clarify options, weigh risks and benefits, consider values and preferences, and reduce uncertainty and complexity in decision-making. Decision aids can be used in various domains, such as healthcare, finance, education, and environmental policy, to empower people to make choices that align with their goals and values.”
Decision aids have been extensively studied in health care generally, and maternity care in particular. Guidelines for the production of decision aids have been published by NICE,[9] while the more recent Cochrane review of “Decision Aids for people facing health treatment or screening decisions” by Stacey, et al has over 7,800 citations.[10] The study includes 105 randomised control trials (RCTs). Outcomes evaluated across these studies include knowledge, accuracy of risk perception and score on a well-known scale of ‘decision conflict’. The summary statistics show improvements across all these outcomes. Use of decision aids increases consultation time by only 7.5% on average (though this figure includes use of aids before as well as during consultation). Interestingly, only three of the studies included in the review concerned maternity care (two for patients who had previously undergone a caesarean section, and one for patients who were diagnosed with a breech presentation).[1113] However, a more recent systematic review found 35 RCTs on decision aids across both obstetrics and gynaecology (the study included all three of those in that by Stacey, et al.).[14] Eleven of these RCTs concerned maternity care. Of these eleven, seven concerned pre-natal diagnosis/screening, and four were concerned with caesarean vs vaginal birth (three in the context of a previous caesarean and one in the context of breech delivery). Again, this review across obstetrics and gynaecology found that decision aids reduced decisional conflict and improved knowledge of the condition and of decision options.
Clinical Education
Counselling and assisting informed choice is more than a matter of presenting the numbers in a neutral and understandable way as possible; a point captured in Spiegelhater’s review.[8] This concept is enshrined in the term ‘shared decision making’, as opposed to the more detached ‘patient informed choice’ or even nondirective counselling. Surprisingly, little work has taken place on educational interventions to improve clinical practice, as confirmed in a recent study of just such a paper in JAMA.[15, 16] It is clear, then, that more development and evaluation is required on how to maximise the ability of clinicians to support choice, as we discuss further below.
Research Gaps
From the above brief account, I would like to propose the following agenda. First, there are topics that are less urgent, since they have already been quite extensively studied:
- Work on how to present probabilistic information. As we have seen, there has been extensive work on this topic and enough is known to provide a basis for further applied work. That is not to conclude that we ‘have reached the end of history’ and there is nothing more to be discovered. However, short of original ideas (we discuss one possibility below), we can move forward on the basis of existing evidence-based guidelines.
- Develop decision aids in areas replete with them – previous caesarean section and prenatal diagnosis, for example.
However, there are considerable knowledge gaps:
Uptake of decision aids
While the literature includes numerous articles on decision aids, current evidence is that they are not widely used in practice – even in areas where they have been developed according to published standards and evaluated favourably. [10] We think a survey should be conducted into the uptake of decision aids in the UK, including questions on barriers and facilitators to widespread adoption.
Fitting decision aids into the clinical work flow
One of the frequent reasons given for failure to use decision aids relates to time. Time is the precious resource at the heart of any service industry such as health care.[17] Given that shared decision making is inevitably time consuming for hard-pressed staff, the question can be framed as ‘how can decision aids be incorporated into the work flow so as to minimise time constraints?’. There are a number of ideas that could be pursued: web-based resources, online decision aids ‘prescribed’ through algorithms built into electronic notes, decision aids prescribed by the clinician, interactive decision aids to help patients clarify their views before and after consultations. The theory that should underline any policies in this area is that making a choice is a process, not an immutable event emanating from a single consultation. Thus, work is needed into how decision aids should be incorporated in the patient ‘journey.
We propose a study in which decision aids are made publicly available on the web, accessible through information supplied by care providers and ‘prescribable’ from within the electronic notes. Likely, there will be no one-size-fitsall solution, if only because the degree of urgency varies. Take for example, the decision to accept or decline screening for chromosome abnormality vs selecting immediate or delayed delivery for Caesarean section. In the former scenario, there is no hurry offering numerous opportunities for use of decision aids (within or outside the consultation), visits to a clinicians, and private reflection and discussion with friends and relatives. The latter scenario is more urgent and events will evolve rapidly (over days). Clearly, the process of supporting and informing decisions has to be adapted according to the urgency of the situation.
Development of decision aids in areas which are poorly served
Initial ideas, to be developed further include:
- a. Early vs delayed delivery for pre-eclampsia according to gestational age and markers of severity.
- b. Home vs hospital birth.
- c. Caesarean section for conditions other than previous caesarean or breech. Suspected large baby may serve as an example.
- d. Medical disorders in pregnancy where medication may help the mother but harm the baby – epilepsy, for example.
- e. Induction of labour in various circumstances.
Clinical education
Studies frequently show that the presentation of information provided for women and their partners is variable in context and style of delivery. We therefore think that there is an urgent need to develop optimised and then standardised information sets (scripts) along the lines followed by the Royal College of Obstetricians & Gynaecologists in the 1990s. [18] These scripts could then be included in an educational intervention to improve communication to inform choice.
Conclusion
There are a number of research gaps to be filled and we would value feedback on the most pressing issues, along with advice on study design.
— Richard Lilford, ARC WM Director
References:
- Weinstein MC & Fineberg HV. Clinical Decision Analysis. Saunders; 1980.
- von Neumann J & Morgenstern O. Theory of Games and Economic Behavior. Princeton, NJ: Princeton University Press; 1953.
- Nash Jr, JF. The Bargaining Problem. Econometrica. 1950; 18(2): 155-62.
- Pauker SP, Pauker SG. Prenatal diagnosis: a directive approach to genetic counseling using decision analysis. Yale J Biol Med. 1977; 50(3): 275-89.
- Bingham P, Hird V, Lilford RJ. Management of the mature selected breech presentation: an analysis based on the intended method of delivery. Br J Obstet Gynaecol. 1987; 94(8): 746-52.
- Tversky A & Kahneman D. Judgment under Uncertainty: Heuristics and Biases. Science. 1974; 185: 1124-31.
- Gigerenzer G. How to Make Cognitive Illusions Disappear: Beyond “Heuristics and Biases”. Eur Rev Soc Psychol. 1991; 2(1): 83-115.
- Spiegelhalter D. Risk and Uncertainty: Communication. Annu Rev Stat Appl. 2017; 4: 31-60.
- National Institute for Health and Care Excellence. Decision Aids: Process Guide. 2018.
- Stacey D, Légaré F, Lewis K, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2017; 4(4): CD001431.
- Montgomery AA, Emmett CL, Fahey T, et al. Two decision aids for mode of delivery among women with previous caesarean section: randomised controlled trial. BMJ. 2007; 334(7607): 1305.
- Shorten A, Shorten B, Keogh J, West S, Morris J. Making choices for childbirth: a randomized controlled trial of a decision-aid for informed birth after cesarean. Birth. 2005; 32(4): 252-61.
- Nassar N, Roberts CL, Raynes-Greenow CH, et al. Decision Aid for Breech Presentation Trial Collaborators. Evaluation of a decision aid for women with breech presentation at term: a randomised controlled trial [ISRCTN14570598]. BJOG. 2007; 114(3): 325-33.
- Poprzeczny AJ, Stocking K, Showell M, Duffy JMN. Patient Decision Aids to Facilitate Shared Decision Making in Obstetrics and Gynecology: A Systematic Review and Meta-analysis. Obstet Gynecol. 2020; 135(2): 444-51.
- Emanuel EJ. The Inevitable Reimagining of Medical Education. JAMA. 2020; 323(12): 1127-8.
- Lilford RJ. Changes in Medical Education. NIHR ARC West Midlands News Blog. 2020; 2(3): 11-2.
- Lilford RJ. Liberating Time in the NHS. NIHR ARC West Midlands News Blog. 2023; 5(4): 1-2.
- Impey LWM, Murphy DJ, Griffiths M, Penna LK; on behalf of the Royal College of Obstetricians and Gynaecologists. Management of Breech Presentation. BJOG 2017; 124: e151–77.