Empowering or frightening? Sharing uncertainty with patients

Abstract

When troubling symptoms or serious illness occur, patients can find it harder to cope with the uncertainty than their doctors, as their health, even their existence, is at stake. Patients’ concerns mirror the uncertainties doctors face and can be classified into analysing uncertainty, negotiating uncertainty, networking uncertainty and team-working uncertainty. This article focusses on understanding patients’ responses to uncertainty; then the impact of different doctor–patient relationship styles and interactions is explored. Skills and strategies for sharing uncertainty with patients follow.

The GP curriculum and uncertainty

Core statement 1: Being a GP and Professional module 2.01: The GP consultation in practice state that a GP should be able to:

Share the management of problems with patients

Manage complexity, uncertainty and continuity of care within the time-restricted setting of a consultation

The core capabilities of making diagnoses and decisions/managing medical complexity/state that the GP should be able to:

Recognise the inevitable uncertainty in general practice problem-solving, sharing uncertainty with the patient where appropriate

Manage uncertainty and risk

Recognise that patients often present with problems that cannot be readily labelled or clearly categorised. Evaluate how this uncertainty influences the diagnostic and therapeutic options available to the patient

Manage and communicate the inevitable uncertainty in complex problems

Assist patients to tolerate diagnostic uncertainty

How can GPs approach uncertainty with patients?

Seek first to understand, and then be understood (Covey, 2004).

It is important to begin by understanding what uncertainty is like for patients (generally) and what uncertainty is like for your individual patient in a consultation (specifically). There is no ‘one size fits all’ option; both patients and doctors differ in their responses to uncertainty, and each situation needs a suitably nuanced approach. Choosing the most appropriate response for each patient is much easier if the kind of uncertainty being experienced by the patient is classified and understood. Recognising the different kinds of doctor–patient relationships that affect uncertainty can help doctors to choose a style suitable for each particular situation. Making choices about the way the doctor–patient relationship develops, facilitates the specific skills and strategies needed to effectively talk about uncertainty.

Classifying patients approaches to uncertainty

Like doctors, patients find diagnoses helpful. A diagnosis can help patients to make sense of their experiences, understand the treatment options open to them, and to orientate them to their prognosis. When the diagnosis is not clear, the uncertainties with which patients grapple are mirrored by the uncertainties experienced by doctors. Patients also experience considerable uncertainty in trying to understand treatment plans, especially when referral or other teams are also involved. There are echoes of what doctors may feel in this woman’s experience:

What am I missing? What if I'd paid more attention two or three years ago to his vague complaints of ill-health and pressed for him to get a scan instead of focusing on my own concerns? What if I researched another treatment or did another search or went to another patient conference? What if I got a juicer and made him drink raw kale juice…? There has to be something I can do … but there isn't really. Or is there? (www.macmillan.org.uk)

A patient’s uncertainties can be subdivided by asking two questions:

Is the uncertainty about diagnosis or management?

Is the individual patient working with one doctor or is there a group, team, network or family also involved?

This gives us diagnostic uncertainty, divided into ‘analysing uncertainty’, where one doctor works with one individual to try and make a diagnosis, and ‘networking uncertainty’, where a group or network is involved (for example, laboratories, radiology, referral networks).

Management uncertainty divides into ‘negotiating uncertainty’, where one doctor is trying to organise the care for one patient, and ‘team-working uncertainty’, where a group, team or family are involved in organising or delivering care. This is illustrated in Figure 1 in the article ‘The psychology of uncertainty’ in this issue of InnovAiT.

Patients and analysing uncertainties

When patients are faced with uncertainties, and when analysing uncertainties, with the diagnosis remaining unclear, they often long for their condition to be given a ‘name’ and find it difficult to cope with the uncertainty. Sometimes a doctor’s investigations will be driven by a fear of litigation or ‘getting it wrong’. This may do little to clarify things for patients, who may not find it very helpful to have things ‘ruled out’ when they are hoping for something to be ‘ruled in’. A patient’s uncertainties may be compounded if no unifying diagnosis is possible or if more than one diagnosis is playing a part in their illness.

Getting a firm diagnosis may also be the trigger for further uncertainties; what will happen now? Will I survive? Will I be able to cope? In some situations, this new uncertainty may even help patients. For example, a positive human immunodeficiency virus (HIV) test is life-changing news. In one study, some men tested for HIV refused to get their test results. However, their mood disturbance decreased after finding out that they were HIV-positive. Although there were new uncertainties about prognosis and treatment, these seemed to be offset by a greater sense of control (Brashers, 2001). Patients also have questions about their illnesses that are of a more ‘existential’ and general nature (Helman, 1981): What has happened? Why has it happened? Why has it happened to me? Why now? What would happen if nothing were done about it? What are the effects on other people such as family or employers, likely to be? Doctors may not have direct answers to such questions, but being aware of these key issues allows concerns to be explored and put into a unique context for each individual. This may mean explaining that a condition is ‘bad luck’, or when there is a precipitating factor, such as smoking, that we will continue to provide treatment and care for any adverse consequences.

Patients and networking uncertainties: Expectations from referrals

Making a diagnosis is sometimes seen as a one-off event that happens at a defined moment. In practice, making a diagnosis is an iterative process that may involve revision and amendment as new information becomes available; this may be due to the passage of time, the evolution of symptoms, or new information from referrals, tests and investigations. This may give patients considerable anxiety about networking uncertainties. Before seeing a doctor, many patients will have done their own ‘networking’, checking with family, friends or ‘Dr Google’ about the best way forward. This may influence their expectations about investigations, and clinicians are wise to explore and acknowledge the reasoning behind patients’ concerns. Clinicians also need to explain their own clinical reasoning, which may lead to different conclusions.

Patients are not necessarily as keen for tests as doctors think; they may express this by not turning up as expected for investigations. Considerable uncertainty about how to use the diagnostic network can occur if patients are not proficient in English, or are illiterate. Referral pathways can be complex for patients to use, involving multiple phone calls, passwords, and puzzling or contradictory letters from automated systems. Knowing this can alert the doctor to the need to explore and understand the patient’s specific uncertainty, tailoring explanations and support accordingly.

When investigations are complicated, the patient can end up feeling less important than the scan; one account speaks of ‘the possible disappearance of the person behind the images’ (Blaxter, 2009). GP follow-up after referral can help people manage the uncertainty they feel when waiting for test results or for plans of care to emerge from secondary care. One way for doctors to develop better understanding of the patient’s point of view, is to look at the forums on websites such as www.macmillan.org.uk, where poignant comments express patients’ experiences: ‘both crying as my husband is scared of what the oncologist will say on Monday about scan results’.

Other useful websites for this purpose are listed in Box 1.

Box 1.

Useful websites whose patient forums give insight into patients’ uncertainties.

• www.alzheimers.org • www.cancercare.org.uk • www.epilepsy.org.uk • www.healthtalk.org • www.healthunlocked.com • www.leukaemiacare.org.uk • www.macmillan.org.uk

Patients and negotiating uncertainties

Negotiating uncertainties can create difficulties, as patients often struggle to link their own experiences with the ideas that clinicians have about treatment. In the next section, different approaches to decision-making are explored more fully. When the consultation seems to get ‘stuck’, due to the patient being uncertain whether, or how, to take up the treatment options offered by the doctor, then skills such as negotiation, motivational interviewing, shared decision-making, talking about risk, and coping with psychosocial issues come to the fore. This patient summarises the pros and cons of a doctor-centred versus a patient-centred approach (Fisher and Eraut, 2012):

We’ve gained [today] in that we’re wiser and we can challenge and when something’s wrong, we can take it further, … But what we’ve lost is that permission for it not to be all on our shoulders, ‘clinician says, therefore it must be correct’. Now everything’s on our shoulders, which is good, but bad.

Patients and team-working uncertainties

Great uncertainties of the ‘team-working’ type can be experienced by patients with chronic or serious illnesses. Clinicians may not appreciate the complexities of care at home; the caring for a relative with dementia, or late-stage cancer, can have an immense impact on family or other carers. Patients are often unsure about how or when to contact teams or what to expect from their professionals. Having many different professionals involved can be challenging. These uncertainties are also reflected in the experiences of nursing staff caring for very sick patients at home. District nurses (Palsson Isovaara, & Norberg 1995):

felt like cowards and also experienced meaninglessness, uncertainty, shame, irresolution and insufficiency in the trying situations.

Many patients feel a sense of isolation when facing serious illness, even after treatment is complete, as illustrated by this patient, who echoes the existential questions brought into focus by Helman (1981). Should the oncologist offer comfort by saying it will be ‘OK’? The GP can certainly help the patient by allowing such fears to be acknowledged and sensitively explored in follow-up consultations (MacMillan):

I'm struggling with the uncertainty. The focus of getting through the treatment has gone and I'm now frightened for the future. How long have I got? Will it spread? When will it return? Last week I desperately wanted the oncologist to say everything will be ok but of course nobody can say that. I'm struggling knowing that there is no full stop to this nightmare.

Exploring the doctor–patient relationship: Responses to uncertainty

The specific nature of the doctor–patient relationship affects which uncertainties can be discussed and whether patients can accept that their clinicians may also be uncertain. Patients contribute to the meanings that emerge in the intricate interaction between doctor and patient, as a negotiation of what subjects are ‘acceptable’ takes place. These complexities can confuse both parties (Pilnick, Hindmarsh, & Teas Gill, 2009). Patients may interpret illness and make decisions in different ways to their clinicians. This brings new responsibilities to patients (Elwyn, Edwards, Kinnersley, & Grol, 2000). Many, if not most, treatments have a failure rate as well as a success rate, and in some situations this is readily accepted by both parties, especially if the benefits to be expected outweigh the risks of side effects or failure. There has been an increasing willingness to share information about risks and benefits, and this raises uncertainty for patients about whether to accept treatment. The doctor–patient relationship in this decision-making and negotiating aspect of care has been described as being one of following four kinds (Emanuel and Emanuel, 1992).

‘Clinician knows best’

A ‘clinician knows best’ approach occurs with paternalist clinicians who make decisions for the patient. Most people hope for this in life-threatening situations where special expertise is required, for example, when treating a multiply injured patient in an emergency department. Doctors in this situation may be reluctant to disclose uncertainty, and research suggests that patients can have mixed responses to such disclosure (Cousin, Schmidt Mast, & Jaunin-Stalder, 2013). In the past doctors kept their ‘workings out’ to themselves and did not discuss investigations or probabilities of failure with patients. Paternalistic doctors feel that discussing uncertainty results in unnecessary anxiety and loss of trust. Research shows mixed findings. In patients making decisions about ischaemic heart disease, about 40% of patients reached a decision they were happy with, but 40% had increased anxiety and 77% still cited their physician as being the most important factor in decision-making. Patients making decisions about whether to accept high-risk cardiac surgery (with a real possibility of death with or without surgery), were prepared to talk about the risks and face the possible consequences. However, their final decisions reflected their ‘unconditional trust’ in the clinician offering the treatment, and their disinclination to face a ‘fading away’ (Schaufel, Nordrehaug, & Malterud, 2009).

As doctors routinely overestimate the benefits of treatment and underestimate the risks, patients should perhaps be more cautious about taking the word of paternalistic clinicians at face value (Hoffman and Del Mar, 2017). If a paternalistic doctor gets it wrong, or the patient suffers unexpected treatment failure, the disappointment can be huge. Patients even react badly to such doctors looking things up or checking information (Johnson, Levenkron, & Suchman, 1988). Perhaps it is best to avoid a uniform ‘doctor knows best’ approach and involve patients from the start.

‘The informant clinician’

The ‘informant clinician’ avoids instructions and gives patients information to help them make an informed choice. At first, this may seem like a good approach, however, it can leave patients feeling isolated and uncertain with all responsibility being devolved to the less expert party, i.e. the patient. We know that more choice increases anxiety (Iyengar and Lepper, 2000). Patients may feel ill-equipped to make complex health decisions. Although avoiding the overly paternalistic approach, clinicians can still act as informed guides for patients by adopting the ‘interpretative’ role.

‘The interpretative clinician’

The ‘interpretative clinician’ goes beyond leaving the patient to make a choice themselves and guides decision-making using expert knowledge while also incorporating the patient’s values and priorities. This is called ‘shared decision-making’ as both parties are involved. Patients want more involvement in decisions, this being most relevant when the outcome of a treatment is uncertain, or only works in some patients, or when there is ‘equipoise’ in the decision-making and there is no clear cut ‘best’ treatment option (Elwyn, Edwards, Kinnersley, & Grol, 2000). We know that that the patients want to be consulted more about their care and to be involved, especially in significant decisions. The phrase: ‘No decision about me without me’ captures this idea (Coulter & Collins, 2011).

Is this enough in situations of complexity, uncertainty or end of life care? Accepting the risks of surgery or chemotherapy may be a way of avoiding more challenging uncertainties about the approaching end of life. Offering choices about heroic or toxic treatments at the end of life may seem to offer patients the ‘best chance of survival’. However, patients also need opportunities to think about bigger issues, with the support and accompaniment of their doctor. The ‘deliberative’ doctor provides this help.

‘The deliberative clinician’

The ‘deliberative clinician’ goes beyond the ‘interpretative clinician’, helping the patient to explore their health-related values ‘that can be realised in the clinical situation’, and which of those values are ‘more worthy and should be aspired to’ (Emmanuel & Emmanuel, 1992). The clinician acts more like a teacher or friend; engaging in a dialogue about what values are most important to the patient at the time, and even indicating what decision about medical care would be ‘admirable’. In ‘Being mortal’, Atul Gawande (Gawande, 2014) describes the uncertainty and difficult decisions encountered when his father developed a slowly progressive spinal tumour; not only decisions about his medical care, but also decisions about what kind of life and what kind of death he wanted, how much risk, when to stop treatment, and when to gracefully accept that death was approaching. These are existential and moral uncertainties as much as medical ones, and such issues, although challenging, are part of the dialogue that patients hope to have with their doctor. Thus, doctors who are willing to listen to these concerns and discuss things openly, can give great satisfaction and comfort to their patients.

Strategies and skills for discussing uncertainty with patients

Strategies for discussing uncertainty with patients revolve around sharing clinical reasoning and using appropriate explaining and framing skills, as well as developing the doctor–patient relationship in a way that is supportive and empathic. Developing closer relationships is sometimes daunting for doctors, who may be more comfortable dealing with thoughts, ideas and scientific concepts, than dealing with feelings and relationships. Time spent developing these skills will be more than repaid; skilled conversations with patients lead to improvements in patient satisfaction, adherence and phychological outcomes (Silverman, Kurtz, & Draper, 2013). More detail about selecting appropriate skills for use in different types of uncertain situation can be found in the article ‘The psychology of uncertainty in difficult decisions’ in this issue of Innovait.

Sharing clinical reasoning

Doctors can be wary about discussing uncertainty with patients, believing that this decreases trust and increases anxiety, although they freely acknowledge such uncertainty when talking with colleagues (Katz, 1984). How doctors express uncertainty is very important. Simply saying: ‘I do not know’ does not inspire trust. Knowing ‘what to do’ about uncertain situations using strategies such as watchful waiting or appropriate investigation can be useful. Box 2 has some suggested phrases for use when talking about uncertain situations.

Box 2.

Useful phrases for talking about uncertain situations with patients.

‘There are several possibilities here’ Use this rather than: ‘I do not know what the problem is’ ‘Let me talk you though my thoughts … things are a bit inconsistent’ Then go through your clinical reasoning. The patient obtains an understanding of the situation. Thinking aloud may resolve some of your own uncertainties ‘On the one hand … on the other hand’ This can be a way to highlight the dilemma or difficult decision, while demonstrating your thinking skills to the patient, increasing trust When tests are anticipated to ‘Rule out’ a problem, anticipate this beforehand and start to initiate planning for that: ‘If these tests are normal, as we hope, then we will work on improving your pain by … .’ ‘May I ask you to ring and leave a message about what happens at the clinic/after discharge/when you have been to A and E’ This will build your relationship and demonstrate continuing concern in uncertain situations, building trust

In our globalised world, referral can yield unexpected uncertainty for clinicians and patients alike. American clinicians with the same information refer for surgery twice as often as UK-based physicians (Frosh and Kaplan, 1999). Where rates of investigation are high, there will also be high rates of ‘incidentaloma’. Doctors need to be skilled in explaining what these are, in avoiding overtreatment and in effect being good at ‘breaking good news’ (Danczak, Lea, & Murphy, 2016). A GP with an ongoing relationship with a patient may find themselves acting like referees or arbiters when specialists disagree or suggest mutually incompatible treatments. For example, diabetologists may want to stop beta blockers, cardiologists may want to continue them. GPs can sometimes make decisions based on better knowledge of the patient, sharing their thinking with the patient, and involving them in a shared decision-making process. Finally, support your colleagues in sharing uncertainty; acceptance and discussion may reveal ways through uncertainty that can also be shared with patients.

Appropriate explaining and framing skills

In contrast with secondary care settings, where certainty is prized, GPs have to accept that the nature of many illnesses they see will remain uncertain. Investigations are often likely to be fruitless. Excessive testing risks the creation of a cascade of negative findings that leaves the patient none the wiser, but ever more anxious. In indeterminate illnesses, with no alarm features and normal physical findings, the way the doctor frames the explanation affects recovery; patients told that all would be well within a few weeks had faster rates of recovery than those where the doctor expressed uncertainty about the illness (Thomas, 1987). In patients who present with nonspecific tiredness and no alarm features, most recover, only those with fatigue that persists require testing. Thus, a positive message of expected recovery is a reasonable way to deal with most tiredness of uncertain cause, with no alarm features present. Use of framing concepts can help patients decide what treatments to pursue. A patient reading on the internet that a private provider has a 20% success rate, may not consider that the treatment will fail at least four times out of five. Danczak (2016) highlights that a patient with a 10% risk of cardiovascular disease and advised of a ‘30%’ decrease in risk, needs to consider that only three patients out of a 100 will benefit; the problem is we do not know which three!

Developing empathic relationships

All consultations have psychological and social components; empathy with a patient’s concerns and needs will help to build a strong relationship, in which the patient can express themselves and feel supported by the doctor through whatever illness they are experiencing. Concerns that this may make patients ‘too dependent’ can be mitigated by using ‘touch and go empathy’, in which the patient’s feeling is accurately named and the consultation paused so that the patient knows they have been understood. This will often allow the rest of the consultation to continue (Platt and Gordon, 2004). Using the ‘BATHE’ technique (Stewart & Lieberman, 2008) to explore and discuss a patient’s concerns around uncertainty (or indeed other issues) is an effective way to communicate difficult areas of concern, again based on the liberal and accurate use of empathy. See Box 3 for details.

Box 3.

The BATHE technique.

Think of this as ‘BATHEing the patient in empathy’. It goes like this: B Background. Use open-ended and evocative questions to establish what the patient is experiencing. Use empathic and specific comments to show that you understand their predicament and empathise with it A Affecting the patient. How is the patient feeling? What impact is this situation having on them/on others around them? Again use empathy to build your relationship and show enhanced listening T What aspect is Troubling you the most? This helpful question focusses the conversation on what is most important to the patient. It is quite common for patients struggling with many issues to say something like: ‘There is no one thing, what is troubling me is that there are so many problems coming all at once!’ Empathising that it seems as if ‘being overwhelmed is the most troubling thing’ can often deepen rapport. This leads into: H Handling As in, ‘How are you handling this?’ Or, ‘How are you tackling this/dealing with this/approaching this problem?’ This mobilises the patient’s own resources and enables support for their actions. When overwhelmed, strategies such as making a list and doing one thing at a time seem doable and are valid ways to help the patient move forward E Empathy. The clinician needs to respond to the emotional experiences, feelings and relationship-building elements of the conversation, not only to the cognitive and decision-making parts

Using ‘holding skills’

‘Holding skills’ are part of the doctor–patient relationship, they enable doctors to support patients going through emotional or practical challenges. Patients do not expect the doctor to ‘fix everything’ yet greatly value the doctor’s personal interest in them. When patients are experiencing the uncertainty of serious illness and navigating complex care pathways, a continuing relationship with a doctor who will listen and accept them in a non-judgemental manner, without imposing their own values and attitudes, can be of crucial importance. The key elements of holding skills are listed in Box 4.

Box 4.

Holding skills.

These skills create a ‘safe space’ in which patient concerns, emotions and challenging conversations can safely happen. The key actions are to: • Check what information people need, give the information they can cope with (ask them) • Acknowledge and articulate the emotional distress without trying to ‘make it all go away’ • Respect people’s intuition and wisdom about their own life • Respect each person’s differences • Recognise that those differences may lead to them making choices that we would not make • Encourage autonomy so that people make their own choices • Accompany people through difficult situations without necessarily trying to ‘fix’ everything

Does modern medical practice increase uncertainty for patients?

The power of modern medicine to preserve life might be expected to reduce uncertainty about health and illness. Perhaps paradoxically, patients may be more anxious about their health nowadays, and seek medical advice more often; consultation rates increased from 3.9 consultations per patient per year in 1995 to 5.5 consultations each year by 2008 (Hippisley-Cox, & Vinogradova, 2009). By 2014, the overall consultation rate had climbed to 8.5 per year, some of the increase being accounted for by consultations with other primary care professionals. The complexity of GP consultations has also increased (Curry, 2015). Moreover, it can sometimes feel that patients are more likely to feel angry with clinicians and health services in general. Perhaps the power of many medical advances has given us a false sense of security; medicine can ‘do everything’. This leads to disappointment and anger when things go badly.

Clinicians' use of scientific developments increases the concentration on ‘technical rational’ aspects of practice (Schön, 1987). However, subjective issues play a big part in all areas of our work. Being able to work with patients’ subjective experiences, our ability to be flexible to the nuance of individual patients, and to use empathy to build our relationships, means that the ‘art of medicine’ will not disappear. This is what effective care requires. The Bristol Inquiry into deaths of children undergoing heart surgery combined with the events described in the Francis Report have changed our understanding (Francis, 2013; Smith, 1998). Perhaps this means we need to (Smith, 1998):

move to an active rather than passive trust, where clinicians share uncertainty.

The need to talk about and tolerate uncertainty has been called the ‘next medical revolution’ (Simpkin and Schwartzstein, 2016). This means that doctors need to develop their own skills in understanding and managing uncertainty, as well as being able to discuss it appropriately with patients.

Key points

Patients, like doctors, experience uncertainty in different elements of care; analysing (diagnosis) networking (referral and investigations) negotiating management and team-working all give rise to uncertainties

Patients want to be involved in decision-making and are willing to discuss uncertainty

Effective discussions follow when appropriate consultation skills are used; these include shared decision-making, negotiating, framing and relationship-building skills

Helping patients deal with uncertainty means going beyond the provision of information and requires the incorporation of the patients own values, concerns and needs

Developing skills for managing and discussing uncertainty are likely to become even more important

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