Family carers witness and share much of the experience of the dying person, according to new research published today.
In a paper on bmj.com the authors, led by Professor Scott Murray from the University of Edinburgh, say that carers need to be supported throughout the whole illness because they also experience typical patterns of wellbeing and distress that their relatives are going through.
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.
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 showed that carers often felt run down and that they were sharing the illness, especially as time went on and death approached.
“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,” said the authors.
They concluded 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 added.