What is shared decision making?
There has been a gradual evolution of thinking and terminology about decision making in healthcare during the last century. We have moved from the “doctor knows best” attitude. Decisions were made by medical practitioners, who also decided what, if anything, was communicated to the person seeking care. As a young medical student, I met an older woman in my community who told me she had surgery at 18 for her troublesome periods. Many years later, after trying to start a family, she was told by a different doctor the operation she had was a hysterectomy.
In maternity care and other areas of healthcare, there has been recognition that this type of approach no longer meets societal expectations. Most users of healthcare want to know what the problem is, what the available treatment options are, what the best option for them is, and what the potential downsides of treatment area. Healthcare users generally (but not always) want to play an active role in what happens next.
Recently, the model being recommended has shifted from “informed consent”, where the professional chooses one option and explains the pros and cons. The model of communication now recommended is “shared decision making”. NICE defines shared decision making as:
[A] collaborative process that involves a person and their healthcare professional working together to reach a joint decision about care. … It involves choosing tests and treatments based both on evidence and on the person’s individual preferences, beliefs and values. It means making sure the person understands the risks, benefits and possible consequences of different options through discussion and information sharing. This joint process empowers people to make decisions about the care that is right for them at that time (with the options of choosing to have no treatment or not changing what they are currently doing always included).
NICE 2021, p. 32
So, what’s the problem?
While the goal of shifting to a shared decision making approach aims to enhance the autonomy of the person seeking healthcare, this may not be achieved. Many people have raised many concerns about shared decision making (Begley, et al., 2020; Megregian, et al., 2020; Wickham, 2023). A recent paper by UK based surgeon Abeezar Sarela (2023), writing about the legal consequences of the Supreme Court decision in the Montgomery v Lanarkshire Health Board, raised another issue with shared decision making and I’m going to explore that further here.
For those unfamiliar with the case, Mrs Montgomery argued she should have been offered the option of caesarean section, and not doing so led to significant complications with her birth. The court agreed with her, even though expert witnesses stated that not offering caesarean section as an option in Mrs Montgomery’s situation was consistent with accepted professional standards. The Bolam and Bolitho approaches previously used in law to judge issues of consent would have resulted in the case being decided in favour of the obstetrician, so the Montgomery case represented a large shift in legal attitudes to the role of healthcare practitioners with respect to healthcare users decision making.
In this paper, Sarela examines the question of what is meant by an “available treatment”. He points out that shared decision making processes begin from:
a menu of treatments that has variously described as available, reasonable or in the patient’s clinical interests – and patient choice is restricted to this starting point. Hence shared decision making is not a free-standing process: it is contingent upon some other mechanisms to identify available treatment.
p 122.
The decision about what constitutes a “reasonable” choice is determined by health professionals, both individually and collectively through the process of guideline development. In situations where professionals consider there is no one clearly superior option, then it is more likely healthcare users will be presented with the options, in a dialogue with the health professional, and supported to make a choice. So far so good.
However, note what Barry and Edgeman-Levitan, proponents of shared decision making, said in 2012:
For some decisions, there is one clearly superior path, and patient preferences play little or no role.
p. 780.
Once professionals have decided that one item on the menu is clearly the best option, the other items may be removed from the menu and not discussed at all.
The process of deciding what makes the menu and what doesn’t, starts in research. Before a test, treatment, or some other aspect of care makes it onto a menu of options, it must first be researched. Researchers, and the bodies that fund research, determine research priorities and how research is conducted. This has a profound impact on what will eventually make it on the list of choices. It also shapes what is known about the risks and benefits of the various menu options.
Once research has been done, the next step on the way to changing practice is for research to be interpreted by professional bodies who write guidelines. They decide what is considered a recommended and / or reasonable choice, and what is not. Without genuine consumer involvement and engagement, it is possible to develop a guideline to advise what is best for the professional body, rather than for the healthcare user.
After a professional body determines what is considered authoritative knowledge (whether grounded in research data or not), it builds or restricts the list of options on the menu. This has a direct impact on the practices of individual doctors whose work is structured by guidelines, and therefore on the options recommended or offered to healthcare users.
What does this look like in relation to CTG use in labour?
While there has been, and continues to be, a lot of research about CTG monitoring, much of the focus has been on trying to make it work, and generating justifications to continue to use it. When it comes to better understanding the harms associated with its use, we encounter gaps in the evidence. For example, in 1990 Shy et al. published long-term results from their randomised controlled trial comparing CTG use with intermittent auscultation for women in preterm labour. They found a statistically significant 254% increase in cerebral palsy when CTG monitoring was used. This is a big deal, but no research team has attempted to verify or refute the finding in the 33 years since this was reported.
There’s never been randomised controlled trials to establish whether fetal spiral electrodes or central fetal monitoring systems are effective. The only randomised trials investigating intrauterine pressure catheters were done in women where oxytocin infusions were in use. No comprehensive large scale study has ever been done to determine the rate of complications related to fetal spiral electrode use. In the absence of evidence showing whether these technologies don’t work or are unsafe, it is easier to argue they do work and are safe. CTG use in preterm labour, fetal spiral electrodes, intrauterine pressure catheters, and central fetal monitoring are on the “menu” of items in maternity care settings in most high-income countries.
Despite evidence it offers no perinatal benefits over intermittent auscultation (Small, et al., 2020), CTG use is defined as the “reasonable choice” by all guideline writing bodies around the world (the only exception being the World Health Organization). The common approach is to split women into a “low risk” group (with the expectation intermittent auscultation will be used) and a “high risk” group (with the expectation that CTGs will be used). Things have been added to the list of risk factors with little evidence they increase risk for the sorts of things intrapartum fetal heart rate monitoring might be useful for. And for most items on the list, there is no evidence CTG use will be of benefit for that particular risk factor (read more about this here).
Women are not usually given a choice about whether they want to participate in this risk assessment process, and are not always consulted in a meaningful way when guidelines are being written. Fetal heart rate monitoring guidelines have misused evidence to support the use of CTGs in labour (see here and here). Once a recommendation is in a fetal monitoring guideline, it shapes the choices professionals offer and when they make the offer (see here for recent research about this).
Fetal monitoring guidelines may be written in a way that “require” CTG use for some women (Small et al., 2023, and this blog post about it, and this one too). So it’s no surprise research consistently identifies women are not always given accurate information or a choice of monitoring method. Research and professional bodies structure the menu of choices, and the acceptable description of that menu item. Professional bodies then place responsibility on individual maternity professionals to offer choice while at the same time applying a guideline that limits choice. Somehow, using shared decision making is meant to fix all this.
Can you see how that’s a problem?
What is the solution?
Running education days to train professionals to use shared decision making approaches won’t solve this. Professionals stand at the final step in a pathway that has already been predetermined by others and limits women’s autonomy at every step along the way. Professionals who are genuinely committed to supporting healthcare users autonomy have limited options in how they can do so. So I’m not say the goal of shared decision making to support autonomy is wrong, it’s simply that it is too little, too late.
We need a deeper recognition of professional power and how it operates to structure what is possible in clinical practice. We need authentic approaches to listening to healthcare users, building research with them that addresses their needs and goals. We need healthcare users involvement in guideline development, lead by people independent of professional bodies with vested interests, and who have skills in critical interpretation and application of research data. Only when we have addressed the upstream forces that shape the choices available to healthcare users will we start to see healthcare users be genuinely supported to play an active role in decision making.
References
Barry, M., & Edgman-Levitan, S. (2012). Shared decision making – the pinnacle of patient-centred care. New England Journal of Medicine, 366(9), 780-781. https://doi.org/https://doi.org/10.1056/NEJMp1109283
Begley, K., Begley, C., & Smith, V. (2020, Nov 13). Shared decision-making and maternity care in the deep learning age: Acknowledging and overcoming inherited defeaters. Journal of Evaluation in Clinical Practice, 27(3), 497-503. https://doi.org/10.1111/jep.13515
Megregian, M., Emeis, C., & Nieuwenhuijze, M. (2020). The impact of shared decision-making in perinatal care: A scoping review. Journal of Midwifery & Women’s Health, 65(6), 777–788. https://doi.org/10.1111/jmwh.13128
National Institute for Health and Care Excellence (NICE). (2021). Shared decision making. www.nice.org.uk/guidance/ng197
Sarela, A. I. (2023). The test of availability of medical treatment. Medical Law International,23(2), 109-137. https://doi.org/10.1177/09685332231167147
Shy, K. K., Luthy, D. A., Bennett, F. C., Whitfield, M., Larson, E. B., van Belle, G., Hughes, J. P., Wilson, J. A., & Stenchever, M. A. (1990, Mar 01). Effects of electronic fetal-heart-rate monitoring, as compared with periodic auscultation, on the neurologic development of premature infants. New England Journal of Medicine, 322(9), 588-593. https://doi.org/10.1056/NEJM199003013220904
Small, K. A., Sidebotham, M., Fenwick, J., & Gamble, J. (2020, Sept). Intrapartum cardiotocograph monitoring and perinatal outcomes for women at risk: Literature review. Women and Birth, 33(5), 411-418. https://doi.org/10.1016/j.wombi.2019.10.002
Small, K. A., Sidebotham, M., Fenwick, J., & Gamble, J. (2023, May). The social organisation of decision-making about intrapartum fetal monitoring: An Institutional Ethnography. Women & Birth, 36(3), 281-289. https://doi.org/10.1016/j.wombi.2022.09.004
Wickham, S. (2023). Shared decision making. https://www.sarawickham.com/research-updates/shared-decision-making/
Categories: CTG, Feminism, Obstetrics, Philosophy, Reflections
Tags: Autonomy, central fetal monitoring, decision making, fetal scalp electrode, Fetal spiral electrode, FSE, guidelines, Intrauterine pressure catheter, Montgomery, preterm, research, Shared decision making
Birth Small Talk 
Really useful. Thank you
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Thanks Mavis
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I still have not managed to log in in my own right! But really enjoyed your exploration of the “Shared Decision Making”. I recall using it for a while before acknowledging that it is always the woman’s decision, but you can share information and sources, with the woman/family as she can share what she has found with you. Love Chris Chris Warren Midwife York Storks Midwifery Support 01423360460
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