Talking to health and social care professionals

You and/or the person you care for may find it easier to ask a professional to be involved in discussions about death. Or it might be simply having the professional there that will give everyone more confidence to talk about death. Who that professional is will often depend on the person you care for and who they have the most contact with, for example, their GP, a social care worker, or a palliative care nurse.

Many ‘end of life’ conversations take place in hospital, yet there are massive variations on the part of medical staff as to how and when conversations about dying take place. Unless doctors and ward staff state very clearly that a patient is dying or is at high risk of dying relatives and carers are often left in limbo. 

Consent to share information can also prove to be a barrier to families getting the information they need to get an honest and accurate picture. If the person you care for refuses to give consent to share certain information about their diagnosis and prognosis it does not prevent you from talking to those professionals involved in their care about their general care needs and the impact on your own wellbeing.

1. Ask for an honest, timely, and clear conversation with those providing care about how sick the person is and the expected timing of death. As distressing as it is, it is better to be ‘told how it is’. However, it is important to recognise that it can be difficult for medical staff to be accurate about this.
2. Ask for clarity about clinical terms and abbreviations. Ask for sufficient information to be provided in plain appropriate language.
3. Do some research first so that you are prepared before the conversation and don’t be afraid to ask difficult questions.
4. Sometimes it is not enough to be told the information just once, as it is difficult to come to terms with difficult news. Don’t worry that you are wasting the professional’s time. It is important you and the person you care for understand the information being given to you.
5. Don’t accept the unwillingness on the part of a professional to talk about death and dying. If need be, ask to talk to someone else.

If you want to talk to a GP, make a double appointment so that you have enough time to have a good conversation.