Shared decision making: really putting patients at the centre of healthcare

BMJ 2012; 344 doi: http://dx.doi.org/10.1136/bmj.e256 (Published 27 January 2012)
Cite this as: BMJ 2012;344:e256

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Decision aids in shared decision making (SDM) have been predominantly based on general data derived from high quality studies, that is, data derived from published results of the highest tiers of evidence, systematic reviews, meta-analyses, and randomized controlled trials. While this has been a successful first step in aiding patient DM related to health and medical care, two facts still remain. First, these types of high-tier evidence are not always available as data for decisions that patients face in their lives. Second, shared decision making as a patient asset should not be relegated solely to the use of high tier evidence. These two points suggest the next three steps in the research agenda for decision aid development need to focus on current best evidence and personalized data.

In Step 1, developers of shared decision making (SDM) should hold onto the standards advanced by Sackett and colleagues. Developers of decision aids should be studying how to best help patient with “current best evidence” wherever that evidence may lie in an evidence hierarchy.

In Step 2, proponents and developers of SDM should be developing evidence for patients that goes beyond generalized studies as reported in the peer-reviewed medical literature, because a patient wants to consider personalized data, that is, data from that literature that has been applied to the patient's own unique case, recognizing that a patient may benefit from study results if the patient “fits” the profile of the participants who were studied.

In Step 3, developers of SDM decision aids need to consider how to approach the patients who “do not fit” into studies because they do not fit the profile of the participants studied, that is, patients who do not share the characteristics of the participants that were enrolled in the research studies. Typically, this third group is a broad-based group of patients who have more severe disease than the study participants, who have more concomitant diseases than the study participants, and/or who are on more treatments than the study participants. SDM in health and medical care is too important of a concept to limit its use to consideration of general data based only on high-tier evidence.

Dennis J. Mazur, MD, PhD
Senior Scholar, Centers for Ethics in Health Care, Oregon Health and Science University, Portland, Oregon USA.

Competing interests: None declared

Dennis J Mazur, Internist and Researcher

Center for Ethics in Health Care, Oregon Health and Science University, Portland, Oregon USA

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Shared decision making is increasingly considered the norm. Stiggelbout et al. claim that it is an ethical imperative under the four medical ethical principles of respecting autonomy, beneficence, non-maleficence, and justice (1). They characterise shared decision making as a complex intervention, in which patients and clinicians make decisions together – as partners – using the best available evidence. Medical decision-making is approached as a shared process with shared responsibilities, in which clinicians present the various treatment options, benefits, harms and probabilities and patients weigh the pros and cons and gradually develop their preferred decision.

However, the experiences doctors and nurses who became patients themselves – as we heard them in interviews in our Program Professional loving care (2,6) and are reported in the literature (3,4) – suggest that it is not so much the decision as such but the way the decision is made that bothered them. Doctor- and nurse-patients were struck by the experience that patienthood meant feeling vulnerable and disempowered. GP’s, for example, who had been seriously ill experienced being a patient as synonymous with emotions like anxiety, uncertainty, shock and loss of control (3). This made them both acknowledge the disempowered status of nonmedical patients and becoming more aware of the social aspects of health care (3,4).

Making a good decision is not necessarily the same thing as making a decision in a good manner, taking the lived experience of being ill into account. Good care is not only or not in the first place about making the right choice; it rather takes into account the experiential context in which choices have to be made. A care perspective on decision making takes the messy, open-ended and ever-changing nature of health care practices as a starting point instead of splitting up responsibilities and weighing relevant arguments (5,6).

Helping to make a medical decision in a good manner requires insight into the lived experience of patients. The patient experiences of doctors show that even for them decision making inevitably takes place in an uncertain and messy context. A context in which sharing responsibilities may impose quite a burden on patients, and health care professionals time and again have to attune to what individual patients deem important in their lives (6).

Putting patients at the centre demands a health care approach that departs from what patients live through when they are ill. Putting patients at the centre of all decisions as Stiggelbout et al. argue (1), reflects a part of patient-centred health care. The messiness of informed decision-making in clinical practice – where patients are sick, vulnerable, dependent and reflection time is limited – tones down the increasing focus on making deliberate choices (7). Patient-centeredness requires a logic of care to supplement the predominant logic of choice (5).

References

1. Stiggelbout A M, Van der Weijden T, De Wit M, Frosch D, Légaré F, Montori V, et al. Shared decision making: really putting patients at the centre of healthcare. BMJ 2012;344: e256.
2. Olthuis G, Leget C. Menslievende zorg in de praktijk. Lessen uit het St Elisabeth ziekenhuis. Den Haag: Boom/Lemma, 2012.
3. Fox F E, Rodham K, Harris M, Taylor G, Sutton J, Scott J, et al. Experiencing “the other side”: A study of empathy and empowerment in general practitioners who have been patients. Qual Health Res 2009; 19: 1580-88.
4. Klitzman R. Improving education on doctor-patient relationships and communication: lessons from doctors who become patients. Acad Med 2006; 81: 447-53.
5. Mol A. The logic of care. Health and the problem of patient choice. London: Routledge, 2008.
6. Van Heijst A. Professional loving care. An ethical view of the healthcare sector. Leuven: Peeters, 2011.
7. Agledahl K M, Forde R, Wifstad A. Choice is not the issue. The misrepresentation of health care in bioethics. J Med Ethics 2011; 37: 212-5.

Competing interests: None declared

Gert Olthuis, Research fellow

Carlo Leget (Utrecht), Mieke Grypdonck (Ghent)

Tilburg University, PO Box 90153, 5000 LE, Tilburg, the Netherlands

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Stigglebout et al argue the case for greater shared decision-making. Whilst there are many benefits to be gained, the approach is not without potential complications. For example, women facing surgery for early stage breast cancer treatment decision making (TDM) difficulties consistently associate with greater subsequent distress in some patients,(1) particularly among women who feel over or under involved in the decision-making process. These effects are detectable up to six-years post surgery,(2) and while most women say they prefer shared decision-making,(3) the reality is that patients are often presented with a choice but lack the information on which to decide, even if Decision Aids (DAs) are available. For example, at the time the surgical choice is made, many women and their doctors will not know the staging or receptor status of the tumour. Hence, while Penson, perhaps rather exuberantly dismisses DAs, he is right in that often decision-making by the patient is expected in the absence of adequate information that both doctors and DAs may fail to provide.

To ameliorate this, patients may ask doctors for a treatment recommendation (“What would you do?” “What do you think is best for me?”). This recommendation, we believe, utilizes the doctor’s clinical experience (which the patient lacks) as an (albeit imperfect) proxy for the missing information. (3) Doctors who refuse to recommend are then withholding vital information for the patient. What evidence suggests the doctor should NOT do in shared-decision making is to present the options and then, as in Stigglebout’s example, send the patient home with the information to decide alone. Sometimes this will work, but if there is a negative outcome subsequently, the patient may struggle with significant regret and distress. However, even when there are clear evidence-based guidelines for TDM and other psychosocial practice, clinicians may disagree with their patients about them.(4)

Ultimately, it depends on what is meant by “shared-decision making”. It is a more complex phenomenon than just giving information and eliciting a patient preference. What is really required is an understanding of how to optimize medical decision making generally.

Competing interests: None declared

Wendy W.T. Lam, Assistant Professor

Richard Fielding

Centre for Psycho Oncology Research & Training, School of Public Health, The University of Hong Kong, 21, Sassoon Rd., Pokfulam, Hong Kong.

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Sir,

We would all agree that patients should receive information about their disease and its management. And, of course, they should decide whether or not they want to have a particular treatment. But, equally, we must be honest about the limitations to meeting these requirements.

At a time of serious financial constraints on the NHS, Stiggelbout et al. [1] enthusiastically promote shared decision making. Whilst they may wonder whether this will have resource implications, most of us could answer this question a priori. We do not need research to tell us that it will be time consuming and labour intensive; and that it will place a further burden on doctors or, alternatively, require armies of newly created experts – fresh from their weekend course in shared decision making – to be dispersed around the country extolling the virtues of their practice with missionary zeal. However, there are far more legitimate demands on shrinking budgets than shared decision making.

But what’s it all for? The authors concede that there is only limited evidence that shared decision making improves health outcomes. Instead, their case seems to rest on the somewhat dubious mixture of ethical considerations interspersed with claims of possible reductions in health care expenditure.

In any case, the current approach to shared decision making is simply pretence. In order to participate genuinely in their management, patients need to know much more than just the proportion of differently coloured, smiling faces on decision aids. Setting aside the education and experience necessary to cope with complex medical situations, the much touted graphical displays relating to the outcome of treatment focus solely on the numerical issues involved in understanding – an important aspect but only a fraction of what is required to appreciate the nature of the data. Surely patients should be told, for example, of the flaws in the research methods, of the influence of those with a vested interest in the outcome of the studies, of the data manipulation by researchers or policy-makers in order to present their case in the most favourable light, and of the possibility of fraud. [2]

Patient must also be informed that doctors and others who dispense information are not free from bias – for instance, there are financial incentives to diagnose and treat hypertension and raised cholesterol. And we need look no further than the patient booklets relating to breast and colorectal cancer screening to see how easy it is to mislead patients.

We must not fool ourselves into believing that what is proposed is tantamount to real shared decision making. It is, and probably will always be, lacking in too much to justify such a claim.

James Penston

james.penston@nhs.net

References

1. Stiggelbout AM, Van der Weijden T, De Wit MPT, et al. Shared decision making: really putting patients at the centre of healthcare. BMJ 2012;344;e256.

2. Penston J. Stats.con – How we’ve been fooled by statistics-based research in medicine. The London Press. London, November 2010.

Competing interests: None declared

James Penston, Consultant Physician/Gastroenterologist

Scunthorpe General Hospital, Cliff Gardens, Scunthorpe, North Lincolnshire DN15 7BH

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In his critique of Stiggelbout et al. for their article on shared decision making (1),(2), James Penston chides the authors for their overzealous attitude and endorsement of shared decision making within the clinical context.

His chastisement of the authors appears to be motivated by concerns revolving around the present financial state of the NHS.

While Penston deserves credit for being first to raise a baton in defense of the NHS, his statement that "their case seems to rest on the somewhat dubious mixture of ethical considerations interspersed with claims of possible reduction in healthcare expenditure" (2) should be brought to account.

Why should we look askance at ethical considerations but not at finances? Are NHS doctors not confronted daily with ethical dilemmas?

We are no longer in the Dark Ages. It is imperative that a physician balances self-interest not just against cost, but also against ethical aspirations and the interests of the patient. Ethical issues and cost-effective health care ought not to be mutually exclusive. (3), (4)

Andem Effiong

References

1. Stiggelbout AM, Van der Weijden T, De Wit MPT, et al. Shared decision making: really putting patients at the centre of healthcare. BMJ 2012;344;e256.

2. Penston J. Is real shared decision making possible? Re: BMJ 2012; 344;e256.

3. Maynard A. Is doctors’ self interest undermining the NHS. BMJ 2007; 334:234.

4. Pellegrino, ED. Altruism, Self-interest, and Medical Ethics. JAMA.1987;258(14):1939-1940

Competing interests: None declared

Andem Effiong, Instructor, Clinical Bioethics

Georgetown University Medical Center, 4000 Reservoir Rd NW, Washington DC 20007, USA

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In this paper, the authors examine the importance of shared decision-making and its ability to place patients at the center of healthcare. Cogent reasons are given about the benefits of shared decision making and these are linked to the four ethical principles of autonomy, beneficence, non-maleficence, and justice. Best practices for implementation of shared decision making are described and several examples cited.

Indeed, the authors make a case that is very apropos of the topic. But, in attempting to outline simple strategies for individual clinicians, they claim that, “the first and most important step in shared decision making is creating awareness of equipoise.”

We challenge the authors’ notion that “creating awareness of equipoise” is the first and most important step in shared decision making. Although later on in the article, they gravitate towards the importance of not forcing decision-making responsibilities on people who genuinely defer the role of decision-making, their prior statement pertaining to equipoise weakens the argument. In placing equipoise above all else, they fail to definitively present the reality, which is that a state of equipoise is not always feasible in a clinical context, albeit it is a goal that should be assiduously pursued. The truth is that equipoise will sometimes fail to enhance patient autonomy. In reality, focusing too much on equipoise may actually undermine autonomy, particularly during encounters when patients express informed opinions about treatments. (1)

While an awareness of equipoise is crucial, other factors must be given equal consideration. For example, how do contextual factors such as patient characteristics, clinical setting, or, cultural disparities influence the decision making process? As Elwyn et al. suggest caution must be exercised in terms of the supposed broad applicability of shared decision-making. (2), (3)

Andem Effiong and Alan Warner

References
1. Monzoni CM, Reuber M, Sharrack B. 2011. Equipoise and patients’ autonomy in the MS clinic: a Conversation Analytic approach. 5th Joint triennial congress of the European and Americas Committees for Treatment and Research in Multiple Sclerosis. Amsterdam, The Netherlands.

2. Elwyn G, Dominick F, Stephen R. 2009. Dual equipoise shared decision making: definitions for decision and behavior support interventions. Implementation Science 4:75.

3. Kleinman A. 1978. Concepts and a model for the comparison of medical systems as cultural systems. Social Science & Medicine 12(2B): 85-93.

Competing interests: None declared

Andem Effiong, Instructor, Clinical Bioethics, Georgetown University Medical Center, Washington DC, USA

Alan Warner, Research Coordinator, Bioethics Department, Mount Sinai Hospital, Toronto, Ontario, Canada

Georgetown University Medical Center, 4000 Reservoir Rd, NW, Washington DC, USA

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Shared decision making: an ethical imperative?

We agree with Stiggelbout et al. that shared decision making (SDM) can contribute to an improved patient-physician communication.1 However, the model has shortcomings which suggest that SDM should not yet be an “ethical imperative” for medical practice.

The major deficit of SDM from a medical ethics’ perspective is that the model is silent on what should happen in cases of conflicting values and preferences between patients and physicians.2 In line with ethico-legal standards there can be little doubt that, at the end, patients have the right to make their decision.3 The vagueness of SDM with regards to who should be in control of the decision is associated with the risk that in practice SDM is used as a label for paternalistic decision-making. Furthermore, once the primacy of patient autonomy is acknowledged, clinical guidelines no longer pose a challenge to SDM as this has been described by Stiggelbout et al. This is because patients should be informed about available evidence but, within limits, their personal decision may deviate from such guidance.

Shared decision making as communication model should not be confused with shared control of the decision. To clarify SDM in this respect should be the “ethical imperative”.

We declare that we have no conflict of interest.

Jan Schildmann, Jochen Vollmann, Institute for Medical Ethics and History of Medicine, Ruhr-University Bochum, 44799 Bochum, Germany

References

1. Stiggelbout AM et al. Shared decision making: really putting patients at the centre of healthcare. BMJ 2012; 344:e256 (27th January)

2. Towle A, Godolphin W. Framework for teaching and learning shared informed decision making. BMJ 1999;319:766-71

3. Emanuel E, Emanuel L. Four Models of the Physician-Patient Relationship. JAMA 1992;16:2221-6

Competing interests: None declared

Jan Schildmann, Medical ethicist, physician

Jochen Vollmann

Institute for Medical Ethics and History of Medicine, Ruhr-University Bochum, Malakowturm-Markstr. 258a, 44799 Bochum, Germany

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II agree with this analysis of shared decision making and its direction. However, I would also suggest that it could be taken forward more quickly if patients are encouraged to ask doctors the right questions to allow them to have a basic understanding of what is happening [1]. For example three helpful questions might be: (1) What tests and treatments am I expected to agree to and to continue to agree to? (2) What is the diagnosis in each case? (3) What are the findings connected to each diagnosis (e.g. how it presented, was confirmed and is being monitored)?

These questions could be printed on a plastic card for patients who lack the educational confidence to ask them directly. There is also teaching available to help doctors to answer such questions [2]. The written answers would allow patients to participate actively in the decisions by asking further questions or by simply ‘deciding’ to ask for a second opinion. The answers would also be invaluable as a helpful up-to-the-minute ‘past medical history’ for those taking over care in a hospital or in the community.

References

1. Llewelyn H. Understanding medical decisions (www.transparentdecisions.org.uk)

2. Llewelyn H, Ang AH, Lewis K, Abdullah A. The Oxford Handbook of Clinical Diagnosis, 2nd edition. Oxford University Press, Oxford 2009

Competing interests: None declared

Huw Llewelyn, General Physician and Endocrinologist

Nevill Hall Hopsital, Brecon Road, Abergavenny, NP7 7EG

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Peter Singleton's response really understands that decisions can be unpredictable because they may include the sort of variables which can be missed or not brought to light in consultations, although they may be weighed up elsewhere amongst family, friends, work colleagues . It is often difficult to make decisions based only on or mainly on verbal information and discussion but it is still quite unusual to be given the opportunity to use relatively simply decision aids which can be used to judge all sorts of clinical and personal/social factors. Sometimes even writing down a 'pros and cons' is useful and can be added to by giving numerical weights to each item for and against. When a decision is arrived at through a structured process it becomes easier to understand how and why it has been made in ways which may seem less than optimal to others. Sites such as Healthtalk online are a great step forward but are not accessible to everbody,There is another massive inequality gap regarding even the possibility of real shared decision making. Surely there should be by now, a group of professionals who could be employed to assist people to use decision tools, to teach people how to access information in clinics and surgeries. It should be part of ethical practice.

Competing interests: None declared

susanne stevens, retired

none, cf14

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I am all in favour of shared decision-making and effective decision aids, but do wonder if the decision aids presented focus too much on the clinical issues rather than the wider concerns that patients may have, e.g. impact on social life and earnings.

It would be useful to have knowledge of how long one might be off work, or having reduced capabilities as a result of an intervention (or having none at all). NHS doctors may forget that not everyone has generous sick pay arrangements, particularly the self-employed - even bankers may lose their enormous bonuses if off sick for some time.

Should the particular decision aids on statins not also show the proportion of those who would not have a heart attack who have adverse reactions or other impairment (e.g. simply feeling less well)? As a patient is is often hard to relate the core clinical choice with the wider lifestyle implications. Extending aids to reflect these aspects would be a great help.

Much of this requires stepping out of the clinical perspective and into the patient's shoes, considering how it would be if you were in that position. It may also require understanding of different priorities: I know of one patient, when considering a back operation, was told of possible side-effects, such as 'incontinence' as though this were a minor inconvenience (which it is in clinical terms), but for this patient they would sooner die than suffer the possible social consequences, so, at the least, one may also need to explain possible mitigation strategies, which may not be apparent to the patient.

Finally, while the article points out the need to recognise options such as 'do nothing' or 'wait & see', there are also informational or educational steps such as 'where can I get more information on ...?', or 'can I talk to someone who has had ...?'. Communicating risk is always difficult, but it is also important to remember to communicate the possible 'impact' of a decision (not just death or cure), so that the patient (not the clinician) can choose how to balance the various pros and cons

Competing interests: None declared

Peter D Singleton, Informatics Consultant

Cambridge Health Informatics Ltd, 18 Wordsworth Grove, Cambridge, CB3 9HH

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