End of life care: When patients do not want to know

1. 56. Some patients may not be ready to think about their future care, or may find the prospect of doing so too distressing. However, no-one else can make a decision on behalf of an adult who has capacity. If a patient asks you to make decisions on their behalf or wants to leave decisions to a relative, partner or friend, you should explain that it is important that they understand the options open to them, and what the treatment will involve. If they do not want this information, you should try to find out why.
2. 57. If the patient still does not want to know in detail about their condition or the treatment, you should respect their wishes as far as possible. But you must explain the importance of providing at least the basic information they need in order to give valid consent to a proposed investigation or treatment. This is likely to include what the investigation or treatment aims to achieve and what it will involve. For example, whether a procedure is invasive; what level of pain or discomfort they might experience and what can be done to minimise it; what they should do to prepare for the investigation or treatment; and whether it involves any serious risks.
3. 58. If the patient insists that they do not want even this basic information, you must explain the potential consequences of carrying out an investigation or treatment if their consent may be open to subsequent legal challenge. You must record the fact that the patient has declined relevant information and who they asked to make the decision about treatment. You must also make it clear that they can change their mind and have more information at any time.