End of life care: Role of relatives, partners and others close to the patient

1. 17. The people close to a patient can play a significant role in ensuring that the patient receives high-quality care as they near the end of life, in both community and hospital settings. Many parents, other close relatives and partners, as well as paid and unpaid carers, will be involved in discussing issues with a patient, enabling them to make choices, supporting them to communicate their wishes, or participating directly in their treatment and care. In some cases, they may have been granted legal power by the patient, or the court, to make healthcare decisions when the patient lacks capacity to make their own choices.
2. 18. It is important that you and other members of the healthcare team acknowledge the role and responsibilities of people close to the patient. You should make sure, as far as possible, that their needs for support are met and their feelings respected, although the focus of care must remain on the patient.
3. 19. Those close to a patient may want or need information about the patient’s diagnosis and about the likely progression of the condition or disease, in order to help them provide care and recognise and respond to changes in the patient’s condition. If a patient has capacity to make decisions, you should check that they agree to you sharing this information. If a patient lacks capacity to make a decision about sharing information, it is reasonable to assume that, unless they indicate otherwise, they would want those closest to them to be kept informed of relevant information about their general condition and prognosis. (There is more guidance in our booklet on Confidentiality.) You should check whether a patient has nominated someone close to them to be kept informed and consulted about their treatment.
4. 20. When providing information, you must do your best to explain clinical issues in a way the person can understand, and approach difficult or potentially distressing issues about the patient’s prognosis and care with tact and sensitivity. (See paragraphs 33-36 on addressing emotional difficulties and possible sources of support.)
5. 21. When discussing the issues with people who do not have legal authority to make decisions on behalf of a patient who lacks capacity, you should make it clear that their role is to advise the healthcare team about the patient’s known or likely wishes, preferences, feelings, beliefs and values. You must not give them the impression they are being asked to make the decision.