Decision making and consent

The dialogue leading to a decision

8

The exchange of information between doctor and patient is central to good decision making. It’s during this process that you can find out what’s important to a patient, so you can identify the information they will need to make the decision.

9

The purpose of the dialogue is:

  1. to help the patient understand their role in the process, and their right to choose whether or not to have treatment or care
  2. to make sure the patient has the opportunity to consider relevant information that might influence their choice between the available
    options
  3. to try and reach a shared understanding of the expectations and limitations of the available options.

The information you give patients

10

You must give patients the information they want or need to make a decision.

This will usually include:

  1. diagnosis and prognosis
  2. uncertainties about the diagnosis or prognosis, including options for further investigation*
  3. options for treating or managing the condition, including the option to take no action
  4. the nature of each option, what would be involved, and the desired outcome
  5. the potential benefits, risks of harm, uncertainties about and likelihood of success for each option, including the option to take no action.
    By ‘harm’ we mean any potential negative outcome, including a side effect or complication.*
*iii

See also paragraphs 25–26 on Dealing with uncertainties.

*iv

By ‘harm’ we mean any potential negative outcome, including a side effect or complication. See also paragraphs 21–24.

11

You must try to make sure the information you share with patients about the options is objective. You should be aware of how your own preferences might influence the advice you give and the language you use. When recommending an option for treatment or care to a patient you must explain your reasons for doing so, and share information about reasonable alternatives, including the option to take no action. You must not put pressure on a patient to accept your advice.

12

You should not rely on assumptions about:

  1. the information a patient might want or need
  2. the factors a patient might consider significant
  3. the importance a patient might attach to different outcomes.
13

Other examples of information that might be relevant and, if so, should be shared with patients include:

  1. whether an option is an innovative treatment designed specifically for their benefit
  2. whether there is a time limit on making their decision and what the implications of delaying might
  3. the names and roles of key people who will be involved in their care, and who they can contact (and how) if they have questions or concerns
  4. their right to refuse to take part in teaching or research
  5. their right to seek a second opinion
  6. any bills they will have to pay
  7. any conflicts of interest that you or your organisation may have
  8. any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer.

Exceptional circumstances in which you may decide not to share all relevant information

14

There may be circumstances in which you decide not to share all relevant information with a patient straight away. If you delay sharing information necessary for making a decision, you should let the patient know there’s more to discuss and make sure arrangements are made to share the information as soon as it’s appropriate to do so. You must make a record of the information you still need to share, your reasons for not sharing it now, and when it can be shared.

15

You should not withhold information a patient needs to make a decision for any other reason, including if someone close to the patient asks you to. In very exceptional circumstances you may feel that sharing information with a patient would cause them serious harm and, if so, it may be appropriate to withhold it. In this context ‘serious harm’ means more than that the patient might become upset, decide to refuse treatment, or choose an alternative. This is a limited exception and you should seek legal advice if you are considering withholding information from a patient.

Finding out what matters to a patient

16

You must listen to patients and encourage them to ask questions.

17

You should try to find out what matters to patients about their health – their wishes and fears, what activities are important to their quality of life, both personally and professionally – so you can support them to assess the likely impact of the potential outcomes for each option.

18

You must seek to explore your patient’s needs, values and priorities that influence their decision making, their concerns and preferences about the options and their expectations about what treatment or care could achieve.

19

You should ask questions to encourage patients to express what matters to them, so you can identify what information about the options might influence their choice.

20

You should explore with patients what risks they would and wouldn’t be prepared to take to achieve a desired outcome, and how the likelihood of a particular outcome might influence their choice.* 

*v

For ‘risks’ we mean the risk of a harm occuring, where a harm is any negative outcome, including a side effect or complication. See also paragraphs 21–24.

Discussing benefits and harms

21

You must give patients clear, accurate and up-to-date information, based on the best available evidence, about the potential benefits and risks of harm of each option, including the option to take no action.

22

It wouldn’t be reasonable to share every possible risk of harm, potential complication or side effect. Instead, you should tailor the discussion to each individual patient, guided by what matters to them, and share information in a way they can understand. * 

*vi

See paragraphs 16–20 on Finding out what matters to a patient.

23

You should usually include the following information when discussing benefits and harms.

  1. Recognised risks of harm that you believe anyone in the patient’s position would want to know. You’ll know these already from your professional knowledge and experience.
  2. The effect of the patient’s individual clinical circumstances on the probability of a benefit or harm occurring. If you know the patient’s medical history, you’ll know some of what you need to share already, but the dialogue could reveal more.
  3. Risks of harm and potential benefits that the patient would consider significant for any reason. These will be revealed during your discussion with the patient about what matters to them.
  4. Any risk of serious harm, however unlikely it is to occur.* 
  5. Expected harms, including common side effects and what to do if they occur.
*vii
This is likely to be easier to discuss in advance if possible, see paragraphs 32–39 on Looking ahead to future decisions.  See paragraph 5 on Taking a proportionate approach.
24

You should consider using visual or other explanatory aids to support patients to understand their personalised risk, taking account of their individual clinical and personal circumstances, compared with population level risk.

25

You must answer patients’ questions honestly and accurately, and as fully as is practical in the circumstances. You must be clear about the limits of your knowledge and, if you can’t answer a question, explain whether it is something you are uncertain of or something that is inherently uncertain.

26

If you are uncertain about the diagnosis, or the clinical effect a particular treatment might have, or if the available evidence of benefits and harms of an option is unclear, you should explain this to the patient. Some things will become clearer after treatment starts, so you should discuss in advance what the arrangements will be for monitoring the effect of the treatment and reviewing the decision to provide it. You should also explore in advance what options the patient might prefer in the future, depending on how treatment progresses, and the factors that might influence their choice.*

*viii

See paragraphs 16–20 on Finding out what matters to a patient and paragraphs 21–24 on Discussing benefits and harms.