Respect, preserve identity of people in palliative care: expert

An international expert is urging greater emphasis on carers and health professionals reinforcing the identity of individuals with limiting or terminal illnesses.

Speaking in advance of her scheduled address at the upcoming Palliative Care Australia (PCA) conference in Melbourne, senior lecturer in the Department of Clinical Sciences at London’s Brunel University, Dr Gail Eva, said retaining a sense of self can be vital to quality of life. Patients were too often stripped of their sense of identity as carers worked at treating illness, she argued. As a result, she said, individuals became more socially, physically and psychologically reliant on those 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,” Eva said. “We can’t magically conjure up increased physical ability, but we can help people hold onto the idea they have of themselves – how we respond to the stories people tell about themselves requires careful thought.”

A key factor preventing carers and health professionals taking such an approach, Eva said, was a sense of not wanting to give false hope with regard to recovery and lifestyle opportunities. She explained that such a mindset led to carers negating what they were hearing when patients said they wanted to return to their previous hobbies or activities, like golf, for example.

“We tend to think, ‘That’s not very likely, I don’t want to encourage unrealistic expectations’, rather than responding ‘Oh, you are a golfer? What is it about golf that you enjoy?’ 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.”

PCA chief executive Liz Callaghan said palliative care enabled many people with terminal conditions to participate in activities they found satisfying and enjoyable despite the limitations imposed by illness.

Eva is set to address the PCA’s 13th-annual conference in Melbourne, beginning on September 1.

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