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What matters to you, not what is the matter with you

Reinforcing the personal identity of someone with a terminal illness is an often overlooked factor that can significantly affect their quality of life, according to conference keynote speaker Gail Eva.

Dr Eva, from Brunel University, London, says it is common for people at the end of life to be slowly stripped of their sense of competence and independence as they become more physically, psychologically and socially reliant on the people around them.

“This is exacerbated when people start relating to them as the person who has a terminal illness, rather than the golfer, or the guy who likes camping, or the woman who is a magnificent gardener.

“We can’t magic up increased physical ability, but we can help people to hold on to the idea they have of themselves. How we respond to the stories people tell about themselves requires careful thought.”

Dr Eva, a senior lecturer in the department of clinical services, says the problem sometimes stems from concerns about giving people false hope.

“This means we tend to negate what we are hearing when someone says they want to play golf again. We tend to say that it’s not very likely, rather than responding ‘Oh, you are a golfer? What is it about golf that you enjoy?’”

She says these conversations can also help to identify where palliative care can enhance quality of life for someone with a terminal diagnosis.

“It might be that they enjoyed the golf, but they also loved having a beer with mates in the clubhouse afterwards. With the right palliative care support, that might still be possible.”

She said patients with a life-limiting illness are often unintentionally being discriminated against, due to societal attitudes which are well-intentioned but damaging.

She called for a significant shift in thinking to ensure people with a terminal diagnosis are not excluded from participating in society.

“We, as a society, have to realise that we are making it difficult for this group of people to participate because we are viewing them as different and awkward and they make us feel uncomfortable.

“We are very good at – in the kindest possibly way – of excluding people with life-limiting illness because they look poorly, we’re worried about their safety and it’s difficult to get someone in a wheelchair out.”

Significant campaigning over the past 30 years had started to remove barriers so disabled people had equal access.

“We need the same shift to occur for people with a terminal diagnosis,” she said.

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