We need to get better at talking about palliative care

Image of a middle aged lady wearing a headscarf holding a young girl close. — Communication needs to improve around death, dying and end of life care. Image: Getty Images

Caregivers would like more information about palliative care and a willingness from health professionals to discuss what to expect as illness progresses, according to new research.

University of Melbourne palliative care specialist Jennifer Philip leads a research team that has interviewed patients and caregivers on their experiences in the health care system.

In the interviews with 25 carers aged 21 to 78, researchers found that carers:

Felt health professionals sometimes “spared” them the details of what to expect
Prefer doctors to use direct language, not euphemisms, to communicate about death and dying
Want communication on palliative care to be more freely offered
Would like health professionals to tell them if they know their loved one’s death is near
Had mistakenly thought their loved ones had more time and wished health professionals had told them this was not the case
Would like health professionals to have conversations about death with both the patient and carer present, not leaving it for the carer to break the news that death is near
Want ready access to written information, supplemented by conversations staged over time, about palliative care and what to expect as death nears.

Professor Philip, who works in the University of Melbourne Centre for Cancer Research and St Vincent’s Hospital, said: “I hope this work will encourage us to have these conversations with each other, and, as health professionals, with our patients.

“These are not easy conversations. They need to be handled with care and sensitivity.”

Professor Philip said language around end of life care was especially important. For example, she said saying a patient had “no more treatment options so entered palliative care” was damaging and limited people’s possibilities.

“Palliative care is a form of treatment that provides benefits to patients and carers,” Professor Philip said.

“The way we talk about end of life care can lead to misunderstandings but also, sadly, to suffering and missed opportunities.”