Family carers share the illness experience of the dying patient

Family carers need to be supported throughout the whole illness of their loved ones as they witness and share much of the experience of the dying person, according to research published in the British Medical Journal today.

It has already been established that individuals dying from cancer experience distress particularly at four key time points - at diagnosis, at home after initial treatment, at recurrence, and during the terminal stage, says the study.

The authors, led by Professor Scott Murray from the University of Edinburgh, are now suggesting that family caregivers may also experience typical patterns of wellbeing and distress that their relatives are going through.

Professor Murray and colleagues carried out 42 interviews with patients with lung cancer and 46 interviews with their family carers. The interviews took place every three months for up to a year or until the patient died.

The results show that carers were generally in better health than the patients, but any health problems they had could diminish their ability to care.

The authors say that carers often felt run down and that they were sharing the illness, especially as time went on and death approached. They write: "Carers, like patients, often felt they were on an emotional rollercoaster, experiencing peaks and troughs at key times of stress and uncertainty in the cancer trajectory."

The authors conclude that psychological and existential support should be targeted at carers at the four key stages of the terminal illness. "It may also be empowering for carers to know that it is common to feel stressed and in need of support at certain times," they add.