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SHARED DECISION MAKING

What is shared decision making?

Question

Which of the following statements do you think defines shared decision making?

Select one of the following answers

The process of bringing together scientific evidence and patient values and preferences

Select

The clinician and patient working together to solve a problem and/or make a decision

Select

A process in which people work together with clinicians to select tests or treatments. 

Select

All of the above

Select

Further information on the NHS England perspective
can be found here

Also on Ian Hargrave’s broader definition of ‘Purposeful’ Shared decision making, where the clinician and patient working together to solve a problem here. Click here to read


This short video explains further what shared decision making is and why it is important

Let’s think about the terms used in these different definitions, in the context of osteoporosis.

Scientific evidence

The evidence for benefit and harms of osteoporosis drugs is complex even for clinicians to understand. There are also conflicting sources of evidence about benefit and harms. Clinicians need to make this understandable and give clear accurate and consistent information. Later on, we will discuss communication of risk and explain the evidence underpinning the iFraP tool

Patient values and preferences

Sometimes clinicians feel they are already skilled at shared decision making and are good at explaining risks and benefits clearly. However, research across a range of conditions and contexts shows that shared decision making often does not occur well in consultations. This often relates to not finding out what the patient wants or thinks. 

Let’s explore what thoughts people newly diagnosed with osteoporosis might have...

Question

How might these thoughts affect the patient’s beliefs and behaviours?

Select one response for each quote

"I’ve been told I am at ‘high risk’ of fracture"

Patient 1

Reduced participation in valued activities, due to fear of falling/fracture 

Select

Not taking recommended medicine due to not believing it will work

Select

Stopping medicine when do not feel better, due to expectation it will help pain

Select

"Well it’s my age, it’s all part of wear and tear"

Patient 2

Reduced participation in valued activities, due to fear of falling/fracture 

Select

Not taking recommended medicine due to not believing it will work

Select

Stopping medicine when do not feel better, due to expectation it will help pain

Select

"That explains why my joints hurt so much"

Patient 3

Reduced participation in valued activities, due to fear of falling/fracture 

Select

Not taking recommended medicine due to not believing it will work

Select

Stopping medicine if they do not feel better, due to expectation it will help pain

Select

SOLVING A PROBLEM

NHS England define shared decision making as occurring when people experience a change in their health. A patient who attends an appointment about their bone health may not feel that their health has changed, nor that they have a ‘problem’ or a decision to make.

As osteoporosis can be a silent condition, and osteoporosis medicines are more related to prevention of fractures rather than treating symptoms, the clinician needs to help the patient understand ‘the problem’ and help the patient recognise the decision.

SELECTING TESTS OR TREATMENTS: TALKING ABOUT OPTIONS

Also patients want to know:

Where guidelines recommend one medicine e.g. oral bisphosphonates, you may not feel that ‘choice’ or discussing or selecting options is a relevant concept. However, even if only one medicine is recommended, there are still options, and having options is important to patients. Not taking a recommended drug is an option.

What options are available if I don’t take or don’t tolerate recommended drug treatment?

Patient

Click on the arrows below to find out about Anne’s story:

10 years ago I fractured my wrist

My doctor told me to take alendronic acid. It didn’t suit me, I had terrible indigestion. I stopped taking it. I never went back to my GP because I thought there was nothing she could do for me.

I had 6 years without any treatment then I started getting back pain. Now I have got 4 fractures in my spine.

All I keep thinking is could these fractures have been prevented if I had known there were other options?

Shared decision making is not just about offering choices but working with the patient to meet their needs and enhance their understanding of the situation. 

Why is shared decision making important?

Patients want it

People want to be more involved than they currently are in making decisions about their own health and health care. In a national survey of patient priorities in osteoporosis of over 1000 people, improving access to information from health professionals was rated as the highest priority. 

NICE and NHS England recommend it

NICE recommend that shared decision making should be embedded in routine care in all healthcare settings. The NHS Long Term Plan says personalised care will become business as usual across the health and care system, based on ‘what matters’ to people and their individual strengths and needs. It sets out a comprehensive model of personalised care, with shared decision making as one of six key parts of the whole model. 

Shared decision making improves outcomes

See below

SHARED DECISION MAKING IMPROVES OUTCOMES

Question

What outcomes do you think shared decision making improves?

Click on the boxes to find out more:

Decisional conflict

Decisional conflict refers to how sure, or unsure someone feels about their course of action e.g. about taking medicine. If someone has reduced decisional conflict this means that if people decide to take recommended medicine, they are more likely to commit to it and adhere over the longer term. Studies have shown that where decision aids are used to support shared decision making for prevention medicines, that patients are more likely to take the recommended medicine.  

The accuracy of a patient’s risk perception

The patient’s ability to understand their chance of future fracture and side effects associated with medicines. If someone accurately understands their risks, then they are more likely to make an informed decision that’s correct for them 

Knowledge

The patient’s understanding of their bone health and why it’s important. By understanding their condition, patients can be supported to make informed decisions that are right for them. 

Patient participation

Patient participation refers to how involved patients are in the consultation. Patients that feel involved in their decisions are more likely to take medicines long term. 

Adherence to medicines

There is some evidence, for certain conditions and medicines that shared decision making improves clinical outcomes such as medicines adherence. For example, using shared decision making approaches has been shown to increase adherence to asthma medicines and using decision aids has been shown to increase uptake of preventative medicines for stroke.  

When to use shared decision making?

Sometimes clinicians feel that they are already doing shared decision making, or that shared decision making is not always appropriate or feasible.

Watch this short video which challenges these ‘myths’

 

Question

When is shared decision making not appropriate?

When it may lead to the patient making a decision that is against standard medical guidelines

Select

In a medical emergency

Select

In patients with cognitive impairment

Select

In patients who do not want to

Select

All of the above

Select

SHARED DECISION MAKING IS APPROPRIATE...

When patients do not have full capacity e.g. cognitive impairment..

  • Shared decision making may still take place with family and carers. 
  • Also, in people with limited capacity it is often still possible for you to understand what matters for that patient and incorporate their values. 

When a patient makes a decision at odds with clinical guidelines..

  • You should present information to patients in the most transparent and understandable (rather than persuasive) way and accept that a patient’s decision on their own care may differ, and is informed by their values as well as the evidence presented. 

When patients do not want to participate in shared decision making.. .

  • Even if people do not want to participate in sharing a decision, you can use the principles of shared decision making to ensure information we present is relevant to their values and preferences, and understandable. 

How to use shared decision making

There are a number of different models of shared decision making. We are going to use the SPIKES model, which was developed for giving bad news but is relevant to any situation where information is shared. The graphic below shows what SPIKES stands for.  

SP IK ES

click on the boxes to find out more

SETTING & PREPARATION

Includes setting the scene and preparation before the consultation

PERCEPTIONS

Finding out what the patient already knows

Invitation

Asking if it is ok to share information now and establishing shared decision making preferences

Knowledge

Share information, building on existing perceptions and checking for understanding

Empathy

Use active listening to explore emotions and give empathy

STRATEGY & SUMMARY

Summarise and plan the next steps

SPIKES MODEL

S - SETTING AND PREPARATION

Preparation can begin before the consultation.

Click on the arrows to find out about Lucia and her experience:

Lucia attended the Fracture Liaison Service. She knew she was going to have a bone density scan and possibly a blood test because she received a leaflet. She prepared for this and knew the right clothes to wear for the scan.

She didn’t know she was going to receive a diagnosis or treatment recommendation. When the clinician started explaining the diagnosis she felt anxious and found it hard to take it all in.

When she got home she thought of lots of questions. She wished she had have been able to prepare. She decided not to take the recommended medicine.

Feeling unprepared can lead to feelings of anxiety and make it hard to take information in, process it and ask questions. Lucia’s situation could have been improved by her receiving more information about what would happen in a Fracture Liaison Service, before her appointment.

Preparation can begin before the consultation.

Click on the arrows to find out more:

At the beginning of the appointment, it’s helpful to check in with the patient and confirm you both have the same expectation of what’s going to happen’

As well as preparing the patient, it is important that the clinician is prepared as well. Patients feel much more comfortable if they can tell you have read their notes beforehand.

SPIKES MODEL

P - PERCEPTIONS

Everyone has different knowledge, experience, preferences and values. Sometimes patients volunteer their previous experience and knowledge, but often they don’t. 

Question

WHAT QUESTION OR QUESTIONS COULD WE ASK TO FIND OUT WHAT PEOPLE ALREADY KNOW ABOUT A CONDITION SUCH AS OSTEOPOROSIS OR WHAT PEOPLE THINK ABOUT THEIR OWN BONE HEALTH?

Next you might want to consider what people already know about their diagnosis. 

Question

Let’s ask see what happens when we ask ‘what are your thoughts about osteoporosis?’ to Julie, Terry and Ajay.

Read each quote and then try and match the right description of the patient’s beliefs and preferences in the grey panel.

My mother has osteoporosis and I cared for her after her spinal fractures. She was very hunched over and disabled. Nobody helped her. I don’t want to have the same experience she had. 

JULIE

Julie has high concerns about medicines

Select

Julie already recognises osteoporosis as serious and important condition and is likely to be motivated to do something about it

Select

Julie may be more concerned about their other medical conditions

Select

My wife’s friend has osteoporosis. She has tried 3 drugs and they made her really sick. I wouldn’t touch a bisphosphonate with a barge pole.

TERRY

Terry has high concerns about medicines

Select

Terry already recognises osteoporosis as serious and important condition and is likely to be motivated to do something about it

Select

Terry may be more concerned about their other medical conditions

Select

I already have umpteen medical conditions I don’t want another one. I am not sure what osteoporosis is. I don’t want to ask because I feel stupid.

AJAY

Ajay has high concerns about medicines

Select

Ajay already recognises osteoporosis as serious and important condition and is likely to be motivated to do something about it

Select

Ajay may be more concerned about their other medical conditions

Select

SPIKES MODEL

I - invitation

You can establish shared decision making preferences by asking

"How do you feel about being involved in making decisions about medicines"

"Are you the sort of person that likes to know the pros and cons indetail before making a decision, or prefers to be guided?"

"Do you prefer to know the details or the big picture?"

 

 

Sometimes you will encounter a patient who reacts to these questions by saying something like:

‘Can you tell me what’s best?’’

Shared decision making includes finding out what is important to the patient and making the discussion relevant to their life, beliefs and values. 

Patients who are told what to do, or ask for the ‘big picture’ only, might initially follow the recommended advice, but then later question why the advice was relevant to them, or later develop concerns that they were not able to voice at the time. 

If a patient asks you to tell them what’s best you could say: 

‘I’m happy to share my views on this treatment, but I don’t know all about your life and what works for you, so I will talk you through the pros and cons of the options so that you understand them better and can imagine how they might affect you’

If people don’t seem to want details you could say

‘I’ll run through things briefly now, but then give you a leaflet with the information in, in case you want to refer to it later’

Another possible response to this invitation might be someone who reveals they have something else on their mind and doesn’t feel ready to take information in now. If this happens, then it is best to explore when might be a better time.  

SPIKES MODEL

k - Knowledge

When we share information, we are building on what people already know – their ‘perceptions’. If you have started by asking questions about their perceptions you can: 

  • ‘fill in the gaps’ – which might potentially save time if there are bits of standard explanation you don’t need to give
  • avoid patronising people by telling them something they already know
  • pick up on what is important to people, and what they may be concerned about, which helps people feel valued, feel that the conversation is relevant and means they are more likely to engage, both by asking questions and may also engage more with recommended treatments
  • use language which they have used so that our explanations mean something to them
  • gently challenge views which might be considered ‘misconceptions’ 

 

Any information you give should be clear, in small amounts, and checking understanding. Chunk and check can be used to promote understanding. When we speak to patients, often there is a lot of information to be discussed and people can struggle to take on board a long list of things. Chunk and check means that the information is broken down into smaller chunks. Checking understanding is an important component of sharing knowledge and we will cover this in more detail the heath literacy section below.

 

Imagine you were going to explain osteoporosis to Julie and Ajay. Think about how you might tailor your explanations for different people. 

Below is a reminder of how they responded.

My mother has osteoporosis and I cared for her after her spinal fractures. She was very hunched over and disabled. Nobody helped her. I don’t want to have the same experience she had. 

JULIE

Question

What might your explanation to Julie include or focus on?

I already have umpteen medical conditions I don’t want another one. I am not sure what osteoporosis is. I don’t want to ask because I feel stupid.

AJAY

Question

What might your explanation to Ajay include or focus on?

Let’s consider how to challenge views that we might consider are ‘misconceptions’. Remember people are entitled to their beliefs and generally do not like to be told they are wrong.

Let’s think about Terry who, when asked about his perceptions of osteoporosis earlier, told us that he ‘wouldn’t touch a bisphosphonate with a barge pole’ highlighting that he had high concerns about medicines.

What might be the best approach for you to take?

Select one of the following

My wife’s friend has osteoporosis. She has tried 3 drugs and they made her really sick. I wouldn’t touch a bisphosphonate with a barge pole.

TERRY

Try and persuade him of the importance of taking medicines, using strong words to tell him how bad osteoporosis is

Select

Emphasize that harms with osteoporosis drugs are very rare

Select

Ask him to explain his concerns in more detail

Select

Offer him a different drug

Select

Let’s see how that conversation might look

"You mentioned you wouldn’t touch bisphosphonates with a barge pole – can you tell me a bit more about that?"

CLINICIAN

"Yeah – the acid rots your gullet doesn’t it? I’ve already got really bad indigestion so I don’t want that to happen."

TERRY

"Oh ok. Yes they can sometimes make indigestion worse if they are given by mouth. There is an option to give bisphosphonates by injection instead which means the medicine does not go into the gullet but gets absorbed straight into the vein. How would you feel about that?"

CLINICIAN

"Oh I didn’t know that, yes that would be ok"

TERRY

In this case, the clinician does not directly challenge Terry and say his assertion that ‘acid rots your gullet’ is wrong, and even agrees with him ‘yes’ before offering a slightly different explanation and offering an alternative.

SPIKES MODEL

E - Empathy

Showing empathy is an important part of building the clinician-patient relationship

How can you build empathy? 

  • Active listening – trying to understand what they are thinking and feeling by: 
    • Asking open questions and listening intently to their replies
    • Responding appropriately – by acknowledging or exploring  
    • Reflecting back what they have said and summarising to show you are listening and help them to open up more
  • Body language – turned towards the person, using eye contact
  • Acknowledging distress and concern ‘I’m sorry you’re feeling like that’, ‘that must be really difficult for you’; ‘I understand you’re concerned about that’

SPIKES MODEL

S - Strategy and summary

The strategy in the iFraP consultation is to present the treatment options (which include the option of doing nothing and the possible outcomes of that).

 

Asking about the patient’s decision

When options have been discussed it is appropriate to ask patients about their thoughts and preferences and their decision. This may help them to make a commitment but will also help them to voice indecision or concerns e.g.  

How comfortable are you with this medicine we’ve talked about?  

You could ask patients to rate their level of comfort, and/or ask if the patient is willing to take the recommended option, prefers not to take it or if they are still unsure. If they are not feeling comfortable with the medicine discussed, or are unsure, a probing question can explore what unanswered questions they still have. You can ask what additional support they might need then signpost additional resources, suggest they speak further with their GP, family or friends and/or arrange a follow up to discuss further.  

At this point it might be tempting to offer further persuasion about medicine.

Remember that persuasion can have the opposite effect than that intended.

However, it might be appropriate to explore any regret they may feel if they do not follow the recommended action, for example

How would you feel if you decided not to take a treatment and later you broke another bone in your spine – would you be comfortable to accept that, or wish you’d taken the drug?  For some people worries about side effects are much more important – you will know what matters most to you 

Summarising and increasing commitment to treatment plans

Summarising the consultation can help with reinforcing understanding. Some research literature suggests that by asking patients to identify why the medicine is important or relevant, it may increase their commitment to taking treatment. For example you might summarise and ask.. 

We have talked about these reasons for taking the medicine, to strengthen bones and lower the risk of hip and spine fractures. Which of these reasons is important to you?  

It is important to check understanding as part of the summary, this is covered in the next section, and check for any unanswered questions or concerns. 

 Also, make sure that patients are informed about how information is shared within healthcare teams and among those who will be providing their care.

You have now completed this section

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That’s partly correct – all three statements are in fact definitions of shared decision making, including:

  • the process of bringing together scientific evidence and patient values and preferences
  • the clinician and patient working together to solve a problem and/or make a decision
  • a process in which people work together with clinicians to select tests or treatments

That’s correct! All three statements are definitions of shared decision making, including:

  • the process of bringing together scientific evidence and patient values and preferences
  • the clinician and patient working together to solve a problem and/or make a decision
  • a process in which people work together with clinicians to select tests or treatments

That’s correct.

If a patient is fearful that they are ‘high risk’ of future fractures, this may mean that they reduce their engagement with meaningful activities in the hope to avoid this.

That’s not quite right.

If a patient is fearful that they are ‘high risk’ of future fractures, this may mean that they reduce their engagement with meaningful activities in the hope to avoid this.

That’s not quite right.

Patients that think osteoporosis is ‘wear and tear’ may believe that medicines will not work, or are not appropriate if it is part and parcel of a ‘normal part’ of ageing.

That’s correct.

Patients that think osteoporosis is ‘wear and tear’ may believe that medicines will not work, or are not appropriate if it is part and parcel of a ‘normal part’ of ageing.

That’s not quite right.

If a patient believes that osteoporosis is causing their pain, they may expect that osteoporosis medicines will help to alleviate their pain. When this is not the case, the patient may stop taking the medicine.

That’s correct!

If a patient believes that osteoporosis is causing their pain, they may expect that osteoporosis medicines will help to alleviate their pain. When this is not the case, the patient may stop taking the medicine.

Not quite.

Please try again.

That’s correct!

Shared decision making is not appropriate in a medical emergency.

Shared decision making is appropriate when it may lead to the patient making a decision that is against standard medical guidelines, in patients with cognitive impairment and in patients that do not want to.

That’s not quite right.

Julie hasn’t mentioned medicines.

Julie’s experiences with her mother meant that she recognised the importance and potential consequences of osteoporosis which is likely to increase her motivation to do something about it. 

That’s correct!

Julie’s experiences with her mother meant that she recognised the importance and potential consequences of osteoporosis which is likely to increase her motivation to do something about it.

That’s not quite right.

Julie hasn’t mentioned other medical conditions. Julie’s experiences with her mother meant that she recognised the importance and potential consequences of osteoporosis which is likely to increase her motivation to do something about it. 

That’s correct!

Terry has heard negative things about osteoporosis treatments, which has increased his concerns about taking a bisphosphonate.

That’s not quite right.

 Terry may know something about osteoporosis but we don’t know that he thinks it is important. He has heard negative things about osteoporosis treatments, which has increased his concerns about taking a bisphosphonate.

That’s not quite right.

Terry hasn’t mentioned other medical conditions. He has heard negative things about osteoporosis treatments, which has increased his concerns about taking a bisphosphonate. 

That’s not quite right.

Ajay hasn’t mentioned medicines. He has a number of medical conditions that he may be more concerned about. 

That’s not quite right.

Ajay has stated he is unsure about what osteoporosis is. He has a number of medical conditions that he may be more concerned about.

That’s correct!

Ajay has a number of medical conditions that he may be more concerned about.

That’s not quite right.

It’s best to understand what his concerns are in more detail so you address them specifically

  • Persuasion is not a successful technique when trying to change behaviour and usually has the opposite effect. Terry may already believe that osteoporosis is important, and needs his concerns exploring, not further emphasis of how important medicine is.
  • People tend to think in black and white rather than risk, so if someone he knows has experienced a side effect, telling him side effects are rare is unlikely to be helpful.
  • Offering him a different drug might be helpful, but he still might be concerned about side effects

That’s correct!

It’s best to understand what his concerns are in more detail so you address them specifically

  • Persuasion is not a successful technique when trying to change behaviour and usually has the opposite effect. Terry may already believe that osteoporosis is important, and needs his concerns exploring, not further emphasis of how important medicine is.
  • People tend to think in black and white rather than risk, so if someone he knows has experienced a side effect, telling him side effects are rare is unlikely to be helpful.
  • Offering him a different drug might be helpful, but he still might be concerned about side effects

Research shows that shared decision making improves a number of patient outcomes, including but not limited to:

  • Decisional conflict
  • The accuracy of a patient’s risk perception
  • Patient knowledge
  • Patient participation
  • Adherence to some medicines

Find out more about these below.

An open question, such as ‘what are your thoughts about your bone health?’ can be helpful to find out a bit more about what people already know or think. Or you could ask ‘Is osteoporosis something you have heard of before? And then use an open question such as ‘Can you tell me more?’
Asking these questions can help find out what people already know about the condition, their risk factors and bone strength and give you an idea about how prepared they might be to receive a diagnosis of osteoporosis or be offered osteoporosis medicines.
It is best to try and avoid questions like ‘what do you know about….?’ because people can feel like they are being tested and feel defensive.

Julie sounds like she already knows about osteoporosis, what it is and why it is important. She might have an idea about causes of osteoporosis, and suspect it is due to her family history. She might not know that there are positive steps to improve bone health, if her mother had no treatment. This means we might spend less time explaining the importance of osteoporosis and move more quickly to discussing how bone health can be treated. 

Ajay might need an overview of osteoporosis and explanation about the potential consequences, so he can see how it is important relative to his other medical conditions. It might be helpful to discuss how his osteoporosis might link to his other conditions e.g. if his other conditions increased his risk of osteoporosis.