Most people with cancer want to discuss end-of-life care but there is an ongoing lack of discussion between patients and their doctors, Australian research shows.

The advocacy group Advance Care Planning Australia is urging oncologists to promote the uptake of advance care planning (ACP)  early in cancer care and involve both people with cancer and their support people.

Their survey of 440 people with cancer and 265 support people found that two thirds had discussed their end of life goals, views and preferences with someone, but only 3% did so with a doctor

The study, supported by Cancer Australia,  found that half of people had heard of ACP but most discussed it only with family and friends rather than a health professional.

Most respondents said they wanted more information on a range of topics regarding ACP and end-of-life care, but views varied by age and duration of time from cancer diagnosis.

The issues included life expectancy, when to stop treatment, pain management, quality of life, how to complete an advanced care plan and decisions on CPR.

Younger people (under 65 years) were significantly more likely than older people to have signed a legal document appointing someone to make medical decisions on their behalf.

For people with cancer, the preference for starting discussion about end of life care was greater at the time of cancer being deemed incurable (42%) compared to at the time of diagnosis (16%).

About one third of participants with cancer preferred to raise these conversations themselves at a time of their choice, and only 4% did not want to discuss it at all.

The study authors recommended that “ACP should be introduced early across multiple interactions with health professionals, discuss a broad range of ACP relevant topics, and involve the cancer patient and their support person.”

Dr Sonia Fullerton, co-author of the study and a palliative care consultant at Peter MacCallum Cancer Centre, Melbourne, said she hoped the findings would bring greater attention to the importance of ACP in cancer care.

“Quite clearly, people with cancer and their families want to have these discussions, but too frequently their doctors and healthcare providers feel unprepared for such weighty and potentially difficult conversations,” she said.

“We need to do more to ensure that everyone involved in the care of people with cancer, can confidently and sensitively lead these important conversations.”

Ms Linda Nolte, Program Director of ACPA said the group had an important role to play in upskilling and supporting doctors and healthcare providers to ensure these sensitive conversations occur at the right time.

“We can’t say we’re giving people with cancer the best care if we don’t understand what they value most and what they would choose if their time was limited,” she said.

The findings are published in Supportive Care in Cancer.