Stop the silent misdiagnosis: patients’ preferences matter

BMJ 2012; 345 doi: http://dx.doi.org/10.1136/bmj.e6572 (Published 8 November 2012)
Cite this as: BMJ 2012;345:e6572

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In the 17th November edition of the BMJ there was an article on patient preference and the scenario of Susan, a 78 year old woman with breast cancer who was treated surgically by mastectomy was presented as an example of preference misdiagnosis. Susan spoke to her friend who had opted not to have surgery but instead had elected to have hormone therapy as her friend believed she would die probably before her breast cancer had any adverse effect on her survival. Susan felt intense regret that she had not chosen hormone therapy.

Mulley et al (1) question whether Susan’s management was appropriate. The question they do not address is whether hormone therapy alone is an appropriate treatment for the majority of older women with breast cancer? Twenty five years ago we used to give all older women hormone therapy as their primary treatment. There were two problems with this approach, first only 75% of breast cancers are hormone sensitive, and second of that 75% only about two thirds of hormone sensitive cancers respond. Even in those who do respond, the majority, if you treat them long enough will develop resistance to endocrine treatment and will require a change of treatment. There are many aspects of a cancer that determine whether a patient is best treated by hormone therapy including the level of the oestrogen receptor expression, whether the cancer is HER2 positive, the size of the cancer, the grade of the cancer, the extent of spread, the patients views and any co morbidities. All these issues need to be considered by the multidisciplinary team when they advise the patient of the best treatment. To believe that a patient’s best source of advice is a friend and that because Susan’s friend had hormone therapy that Susan would have been eligible and appropriate for the same treatment betrays a complete lack of knowledge of the modern management of breast cancer. Mulley et al completely ignore the complexity of decision making in patients with breast cancer. The facile superficial approach of Mulley and colleagues to a complex problem saddens me. Susan’s may not be a preference misdiagnosis but may represent a failure to discuss with her doctors why she was advised that a mastectomy was the most appropriate treatment. There may have been many very good reasons why mastectomy was recommended.

I would also take issue with the data Mulley et al quote on preference misdiagnosis comparing what “patients want” and what “doctors think that they want”. They state that doctors believe that 71% of patients with breast cancer rate keeping their breasts as a top priority, but the figure they report for patients is just 7%. This is the figure in one individual paper. There are a range of figures in the literature. It is a complete abuse of evidence based medicine to quote just one such figure. They have made the age old error of quoting the figures that supports their bias. Mulley and colleagues’ approach, endorsed in the Editors Choice, that doctors involved in managing breast cancer do not take account of patients preference and are unaware of the literature on patient preference is, at least as this doctor is concerned, incorrect.

1. Mulley AG, Trimble C, Elwyn G. Stop the silent misdiagnosis: patients' preferences matter. BMJ. 2012 Nov 8;345

Competing interests: None declared

J Michael Dixon, Professor of Breast Surgery and Consultant Surgeon

Western General Hospital, Edinburgh, Crewe Road South

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I read with great interest the recent article by Mulley and colleagues [1] and your editorial on diagnosing the patient’s preference.[2]

In discussing preference misdiagnosis you state that the doctor may often fail to discover what matters most to the patient.

As you say, there is a need to understand this more fully and it has been suggested that a conversation which includes them in the treating team might improve this understanding.

The issue of what matters most to the patient is, however, wider than preference for treatment options.

In 1992 I wrote a Personal View article suggesting the use of the Patient’s Page in hospital notes. [3] I received some encouraging comments but was unable to fully assess the feasibility of using this tool, although a small pilot study was undertaken.

I suggested that the questions and comments on the Patient’s Page should be read and responded to at the regular ward round review. In this way the patient would indeed become part of the treating team. The use of the page could hopefully assist and encourage the conversation about what matters to them.

I think that it would also be particularly useful as a general communication tool at this time of very high bed occupancy when patients can easily become outliers [i.e. exiled to beds which are not routinely covered by their own surgical or medical team]. Current shift working patterns also suggest there may be a need for a written record of the patient’s agenda. This recent paper supports the idea of a written record too.

Finally, I think that the routine reading of the Patient’s Page, together with the medical records of tests etc, could be a very useful learning tool for medical students and doctors. Hopefully they would learn to assess and incorporate the patient’s agenda routinely.

As I am now retired I cannot personally undertake the thorough assessment of this communication tool, but I wonder whether others might do so now?

Possible questions to be answered would be whether patients or their relatives use it, whether doctors read and act on it and finally what difference in outcomes might follow?

Jacqueline Maxmin
Retired GP and VTS Course Organiser
jackiemaxmin@doctors.org.uk

1.Stop the silent misdiagnosis. Mulley A, Trimble C,Elwyn G BMJ 2012;345:1-52[17 Nov]
2.Editors Choice BMJ 2012 ;345:1-52[17 Nov]
3.Do we hear our patients? And would a patient’s page help? Maxmin J. BMJ 2002;324(7338)[ March 16]

Competing interests: None declared

Jacqueline S Maxmin, Retired GP and VTS Course Organiser

Hazlemere Bucks , London N10

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This article makes explicit the approach that many general practitioners feel they already aspire to, and being aware of our personal biases and cognitive processes during the consultation can only help us to become better doctors. Unfortunately, in the UK this approach is coming under increasing threat.

Despite the government’s mantra “no decision about me without me”, the reality is that with the increasing demands from performance management, GPs are under pressure to disregard patient preferences and to manage them according to strict and simplistic protocols. The proposed new GP contract threatens to intensify this. In one of the many internal tensions within the current NHS, the claim to honour the wishes of the patient is at odds with the desire to micromanage how we treat them. As the QOF juggernaut hurtles blindly onward, shared decision making will be one of the casualties.

Competing interests: None declared

Jonathan D Sleath, General Practitioner

Kingstone Surgery, Hereford, HR2 9HN

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Dr. Luke's concern about the use of the term 'misdiagnosis' is at odds with the gist of the article which is about supporting the patient with better or more appropriate information before the decision on the treatment rather than a decision with the benefit of hindsight.

The best analogy would be making a decision on breast surgery for suspected cancer without doing an exploratory biopsy first - surely a diagnosis made without the benefit of a biopsy would be deemed fairly a 'misdiagnosis' if proved wrong?

The remainder of Dr. Luke's response seems to suggest that we shouldn't try to learn from hindsight anyway. Perhaps just shrugging off iatrogenic error as 'we all make mistakes some time', rather than taking the more enlightened view that we do make mistakes, but how can we change the way we do things in order to make fewer mistakes or mistakes with less adverse outcomes - which seemed to me the whole point of the article, though based on what patients would really want if properly informed and involved rather than what doctors think they would want.

Competing interests: None declared

Peter D Singleton, Health Informatician

Cambridge Health Informatics, Wordsworth Grove, Cambridge, CB3 9HH

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Mulley and cols. present a compelling description, somehow prescriptive, of the steps to foster shared decision-making.[1] The relevance of SDM to quality of care is not under debate. Still it is not clear how to minimize the potential impact of the many factors, both external (noise) and those inherent to the stakeholders (biases) that influences the complexity of the task.[2,3] How to counteract these biases while respecting patient preferences and values?

In contexts where the probability of facing undifferentiated problems is higher, like in the primary care setting, the correct evaluation of patient’s preferences is even more challenging. Because the diagnostic landscape is broader, to diagnose patient’s preferences require the consideration of multiple trade-offs between benefits and risks.[4] The inherent biases caused by the framing of the information, how and how many options are presented, overconfidence of clinicians, and the likeness of the options, are always in play.[5,6]

Uncertainty, error and regret are inherent to every decision we made.[7] Then what is an acceptable burden of regret when the outcomes of our decisions do not match our expectations? Physicians and patients must learn how to deal with uncertainty and regret, and be comfortable with it to avoid an unnecessary increase in their decision thresholds.

How to distinguish between “preference misdiagnosis” from hindsight bias, attribution error, and regret based on the outcome of the decision?[8] One the authors proposed three years ago that “decisions cannot be measured by reference to their outcomes” and propose to “emphasize the deliberation process rather than the decisions end results.”[9]

Instead of a straightforward step-by-step process, shared decision-making must be seen as a spiral and constant comparison process. Where patient’s ideas, concerns and expectations around his/her problems, are constantly weighted and compared against the professional’s own ideas concerns and expectations, within the boundaries imposed by the published evidence, the context, and our biased nature.

References

1. Mulley a. G, Trimble C, Elwyn G. Stop the silent misdiagnosis: patients’ preferences matter. BMJ 2012;345:e6572–e6572.

2. Epstein RM, Alper BS, Quill TE. Communicating evidence for participatory decision making. JAMA 2004;291:2359–66.

3. Edwards M, Davies M, Edwards A. What are the external influences on information exchange and shared decision-making in healthcare consultations: a meta-synthesis of the literature. Patient education and counseling 2009;75:37–52.

4. Pinto J, Abellán J, Sánchez F. La incorporación de las preferencias de los pacientes en las decisiones clínicas. Barcelona: Masson 2004.

5. Tversky A, Kahneman D. The framing of decisions and the psychology of choice. Science 1981;211:453–8.

6. Gigerenzer G. Why does framing influence judgment? Journal of general internal medicine 2003;18:960–1.

7. Tsalatsanis A, Hozo I, Vickers A, et al. A regret theory approach to decision curve analysis: a novel method for eliciting decision makers’ preferences and decision-making. BMC medical informatics and decision making 2010;10:51.

8. Henriksen K, Kaplan H. Hindsight bias, outcome knowledge and adaptive learning. Quality & safety in health care 2003;12 Suppl 2:ii46–50.

9. Elwyn G, Miron-Shatz T. Deliberation before determination: the definition and evaluation of good decision making. Health expectations 2010;13:139–47.

Competing interests: None declared

Aquiles R. Henriquez, PhD student in Medical Sciences

University of Antwerpen, Universiteitsplein 1, Wilrijk 2610, Belgium

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Although I applaud the desire to give more weight to patients' preferences for treatment options, I cannot accept the use of the term 'misdiagnosis' to refer to a post hoc change of mind by the patient. If we could all get it right first time life would be very different to what it is now.

Competing interests: None declared

Jeremy R Luke, GP

Coachmans Medical Practice, Crawley

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