This guideline covers how to make shared decision making part of everyday care in all healthcare settings. It promotes ways for healthcare professionals and people using services to work together to make decisions about treatment and care. It includes recommendations on training; communicating risks, benefits, and consequences; using decision aids; and how to embed shared decision making in organisational culture and practices.
The guideline does not cover unexpected emergencies in which immediate life-saving care is needed. It also does not cover situations when, at the time a decision needs to be made, an adult does not have mental capacity to make a decision about their healthcare. For more information, see the NICE guideline: Decision-making and mental capacity.
Embedding Shared Decision Making at an Organisational Level
Planning and Implementing Shared Decision Making
- Develop an organisation-wide improvement plan to put shared decision making[A] into practice, based on the following recommendations in this section
- In developing the improvement plan, identify:
- existing good practice in departments or teams where shared decision making is already being practised routinely, and use their experience
- departments or teams where shared decision making can be put into practice most easily next; continue this process across the whole organisation
- key staff and service users to train as shared decision-making trainers, and suitable providers to deliver the training (see the recommendation on training and development for healthcare professionals in the section: Supporting healthcare professionals’ skills and competencies)
- Review how information systems might support shared decision making, for example by:
- providing ready access to patient decision aids[B] or information about risks, benefits, and consequences during discussions with a healthcare professional
- showing the person’s past decisions and preferences, values, and other information from previous discussions, for example, through a patient-held record
- Set out in the improvement plan how people who use services will be involved in supporting its implementation
- Plan internal or external monitoring and evaluation (including service user and staff feedback activities) and how to present the results to staff at individual, team, and management level
- Establish a support network within the organisation for shared decision-making trainers (including service users who are trainers) and healthcare professionals. Consider joining up the support network with others in the wider system and across the region.
- Ensure that expertise and information can be shared effectively both within and between organisations so that healthcare professionals provide people with consistent information. See recommendation 1.1.7 and section 1.4 of the NICE guideline: Patient experience in adult NHS services.
Supporting Healthcare Professionals’ Skills and Competencies
- Organisations should ensure that knowledge, skills, and confidence to support shared decision making are included in the induction, training, and continuing professional development of all healthcare staff. This should include access to clinical supervision
- Ensure that training and development for healthcare professionals in shared decision making includes the following:
- encouraging people to talk about what is important to them
- understanding the principles that support shared decision making based on an evidence-based model (for example the three-talk model)[C]
- communicating with people in a way they can understand, using clear language, avoiding jargon, and explaining technical terms
- sharing and discussing the information people need to make informed decisions, and making sure they understand the choices available to them (including the choice of doing nothing or not changing the current plan)
- communicating with and involving family members, friends, carers, advocates, or other people who the person chooses to include
- using patient decision aids[B]
- Provide access to ‘train-the-trainer’ style workshops (where healthcare professionals, and potentially service users, are taught to train other healthcare professionals) for key shared decision-making champions in the departments where shared decision making is being rolled out
- Ensure that training is practical (for example, using role play), rather than solely theoretical, so that healthcare professionals can put into practice the skills needed for shared decision making.
Promoting Shared Decision Making to People Who Use Services
- Organisations should actively promote shared decision making to people who use their services, for example, offering people training, and using posters or other media (such as appointment letters or websites) to prompt people to ask questions such as:
- what are my options?
- what are the possible benefits and risks of those options?
- how can we make a decision together that is right for me?
Putting Shared Decision Making into Practice
- Support shared decision making by offering interventions at different stages, including before, during, and after discussions, so that people are fully involved throughout their care
- Tailor the methods used to support shared decision making to the care setting and context in which the decision is being made, including whether the discussion is happening in person or remotely by video or phone
- Ask the person if they want to involve family members, friends, carers, or advocates (being aware of safeguarding). If so, include them as a way to help the person:
- actively engage in the discussion
- explain what matters to them
- make decisions about their care
- remember information they have been given during the discussion
- When providing information and resources:
- only use reliable, high-quality sources such as NICE-accredited information, links to the NHS website, information from appropriate patient organisations, or relevant NICE guidelines and quality-assured patient decision aids[B]
- take into account accessibility and the requirement to meet the NHS Accessible Information standard.
Before a Discussion
- Before a discussion, offer the person access to resources in their preferred format (for example, a booklet, flyer, or app) to help them prepare for discussing options and making shared decisions. It should encourage them to think about:
- what matters to them
- what they hope will happen as a result of the discussion what questions they would like to ask (see the recommendation in the section, Promoting shared decision making to people who use services)
- Offer to arrange additional support for people who might find it difficult to share in decision making, especially if they do not have, or do not want, support from a family member, friend, or carer. Support could come from a nurse, social worker, interpreter, or volunteer (for example, an advocate) who can:
- help them to understand the resources provided
- encourage the person to take an active part in decision making
- reassure them that shared decision making will be supported by the healthcare professional they see.
During a Discussion
- Agree on an ‘agenda’ at the start of each discussion to prioritise together what to discuss. Say how long the discussion will last
- Ensure the person understands they can take part as fully as they want in making choices about their treatment or care
- When discussing decisions about tests, treatments, and interventions, do so in a way that encourages people to think about what matters to them, and to express their needs and preferences
- When discussing tests, treatments, or other healthcare services:
- explain the healthcare aims of each option and discuss how they align with the person’s aims, priorities, and wider goals
- openly discuss the risks, benefits, and consequences of each option, making sure the person knows this includes choosing no treatment, or no change to what they are currently doing
- clarify what the person hopes to gain from a treatment or intervention and discuss any misconceptions
- set aside enough time to answer questions, and ask the person if they would like a further opportunity to discuss options
- Support the person when they are considering options by:
- delivering information in manageable chunks (chunk and check)[D]
- checking they understand the information (for example, using the teach back technique)[E]
- discussing what matters to them in light of the information provided and checking that their choice is consistent with this
- Give people (and their family members, friends, or carers, as appropriate) the time they need to make decisions about tests, treatments, and interventions
- Accept and acknowledge that people may vary in their views about the balance of risks, benefits, and consequences of treatments, and that they may differ from those of their healthcare professionals
- Make a joint decision or plan about treatment or care, and agree together when this will be reviewed
- At the end of a discussion, state clearly what decisions have been made to make sure there is a shared understanding between the person and their healthcare professional about what has been agreed, what happens next, what the timescales are, and when it will be reviewed
- Explain to the person that they can review their decision earlier than the agreed review date if they want to, and can change their mind about a decision they have made at any time
- When making a record of the discussion (for example, in a person’s clinical notes or care plan), record any decisions made along with details of what the person said was important to them in making those decisions. Offer to share this with the person, for example, in a post-clinic letter.
After or Between Discussions
- Offer people resources in their preferred format to help them understand what was discussed and agreed. This could be a printout summarising their diagnosis, the options and decisions or plans made, and links to high-quality online resources. Ideally, give people this material to take away, or provide it very soon after the discussion
- Ensure that information provided after discussions includes details of who to contact with any further questions
- When writing clinical letters after a discussion, write them to the patient rather than to their healthcare professional, in line with Academy of Medical Royal Colleges’ guidance on writing outpatient clinic letters to patients. Send a copy of the letter to the patient (unless they say they do not want a copy) and to the relevant healthcare professional
- Offer additional support to people who are likely to need extra help to engage in shared decision making. This could include encouraging them to record the discussion, explaining in writing the decisions that have been made, or arranging follow up by a clinical member of staff or a suitable alternative.
Patient Decision Aids
- Use patient decision aids[B] as one part of an overall ‘toolkit’ to support shared decision making alongside the other skills and interventions outlined in the sections, Putting shared decision making into practice, and Communicating risks, benefits, and consequences. If a relevant decision aid is not available, continue to use the shared decision-making principles outlined in this guideline
- Only use a patient decision aid if it is:
- quality assured and reflects evidence-based best practice
- relevant to that discussion and the decision that needs to be made
- relevant to that clinical setting
- Before using a particular decision aid, healthcare professionals should make sure they are familiar with it, including how it will help people to understand which option is best for them.
Communicating Risks, Benefits, and Consequences
- Discuss risks, benefits, and consequences in the context of each person’s life and what matters to them. Be aware that risk communication can often be supported by using good-quality patient decision aids or graphical presentations such as pictographs (see the section, Patient decision aids)
- Personalise information on risks, benefits, and consequences as much as possible. Make it clear to people how the information you are providing applies to them personally and how much uncertainty is associated with it. For more on dealing with uncertainty, see the General Medical Council’s guidance on Decision making and consent
- Organisations should ensure that staff presenting information about risks, benefits, and consequences to people have a good understanding of that information and how to apply and explain it clearly
- If information on risks, benefits, and consequences specific to the person is not available, continue to use the shared decision-making principles outlined in this guideline.
Discussing Numerical Information
- Think about using a mixture of numbers and pictures, for example, numerical rates along with pictograms or icon arrays, to allow people to see both positive and negative framing at the same time
- Use numerical data to describe risks if available. Be aware that different people interpret terms such as ‘risk’, ‘rare’, ‘unusual’, and ‘common’ in different ways
- Use absolute risk rather than relative risk. For example, the risk of an event increases from one in 1000 to two in 1000, rather than the risk of the event doubles
- Use natural frequencies (for example, 10 in 100) rather than percentages (10%)
- Be consistent when using data. For example, use the same denominator when comparing risk: seven in 100 for one risk and 20 in 100 for another, rather than one in 14 and one in five
- Present a risk over a defined period of time (months or years) if relevant. For example, if 100 people have treatment for 1 year, 10 will experience a given side effect
- Use both positive and negative framing. For example, treatment will be successful for 97 out of 100 people and it will be unsuccessful for three out of 100 people.
Footnotes[A] Shared decision making: a collaborative process that involves a person and their healthcare professional working together to reach a joint decision about care. It could be care the person needs straightaway or care in the future, for example, through advance care planning. It involves choosing tests and treatments based both on evidence and on the person’s individual preferences, beliefs, and values. It means making sure the person understands the risks, benefits, and possible consequences of different options through discussion and information sharing. This joint process empowers people to make decisions about the care that is right for them at that time (with the options of choosing to have no treatment or not changing what they are currently doing always included)
[B] Patient decision aids: tools designed to help people take part in decision making about healthcare options. They provide information on the options and help people to think about, clarify, and communicate the value of each option to them personally. Patient decision aids do not advise people to choose one option over another, nor are they meant to replace healthcare professional consultation. Instead, they support people to make informed, values-based decisions with their healthcare professional
(Adapted from the International Patient Decision Aid Standards Collaboration website)
[C] Three-talk model: a practical model of how to do shared decision making that is based on following choice, option, and decision talk stages during the consultation. The model has three steps:
- introducing choice
- describing options, often by integrating the use of patient decision support
- helping people explore their preferences and make decisions
[D] Chunk and check: a technique to break down information into smaller, more manageable chunks rather than providing it all at once. In between each ‘chunk’, methods such as teach back are used to check for understanding before moving on
[E] Teach back: The teach back method is a useful way to confirm that the information provided is being understood by getting people to ‘teach back’ what has been discussed and what instruction has been given. This is more than saying ‘do you understand?’ and is a check of how well things have been explained and understood