Does palliative care need a new name?


12 May 2016

Australia is a world leader in the delivery of palliative care services, but still has a long way to go to address stigma attached to the specialty.

Professor Ian Maddocks, Senior Australian of the Year 2013 and regarded as one of the country’s palliative care pioneers, said medicos and patients alike were becoming more comfortable with accessing services at an earlier stage.

“We’ve got better palliative care in Australia than almost anywhere,” he told the limbic. “We’ve got better government support than say the UK, which still has to raise 50 per cent of its funds through charity.

“But we still all need to talk more about the realities of death and dying.”

Professor Maddocks, who is now Emeritus Professor at Flinders University and continues to care for terminally ill patients, was responding to a recent research published in the CMAJ.

The researchers examined perceptions of palliative care among patients with advanced cancer and their caregivers, and found the term itself carried a stigma, with patients emphasising the need for palliative care to be “reframed and better explained by health care professionals.”

“Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting,” the authors wrote.

They concluded the strong stigma attached to palliative care may persist even after positive experiences with an early palliative care intervention.

“Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful,” they wrote.

Professor Maddocks said he had not seen patients who have benefited from early palliative care, feel stigmatised because of a general misconception that palliative care is associated only with the end of life.

“Just occasionally, quite rarely, a patient has not turned up for an office appointment, giving priority to continuing chemotherapy,” he said.

“And patients invited to ring and report may not do so, perhaps more often either because there is little to report or they don’t want to trouble me. I don’t see it as a big issue; most are appreciative of the opportunity to talk about the support available, to know they have a reliable contact to call if they need.”

He doesn’t believe a name change for palliative care would make much of a difference.

“If attitudes are demeaning, no name will change it,” he said. “If there is an opportunity to meet a palliative care representative who gives time, is warm and encouraging, listens and does not press ideas or prescriptions, offers to visit at home, most individuals and their families are pleased to have the contact. It is as often the poor appreciation by the other specialist who can offer the comment: ‘You’re not ready for that yet’ that may stop a referral.”

However he said he was not averse to the name change, even though he doubted it would be important enough to change practices.

“Many are excited by names, I see them as no more than sign posts,” he said. “What matters is what is actually happening out there to where the sign points. I am not averse to a name change, I don’t see it as important enough to change practice.

Though, if it ramped up into a controversy in the media it might be a way of attracting some new community interest in what is contained within the practice of palliative care, and making another opportunity for having a new look at the whole area could be helpful.”

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