New Australian research shows that most people with cancer and those who support them want to discuss end-of-life care, but these important advance care planning (ACP) discussions are largely not occurring with their doctor or healthcare provider.
The study found that 65% of people with cancer and support people report having ACP conversation, but they were largely occurring with friends and family. Only 4% said that they had discussed the topic with their doctor.
The research was conducted by Advance Care Planning Australia (ACPA), with funding by Cancer Australia. It highlights important questions around when the sensitive topic of end-of-life care should be raised in cancer care.
People with cancer often face complex and difficult decisions related to their treatment and end-of-life care. Up to half of patients with advanced cancer will experience delirium when admitted to hospital and 90% will experience delirium in the days before death, leaving them unable to make treatment decisions.
ACP helps people with cancer to clarify their values and preferences, which can assist doctors to align treatment with the preferences of the individual. Doctors have an important role to play in leading ACP conversations however previous studies have found lack of time, knowledge of ACP as a key barrier.
The Australia-wide study included more than 700 people with cancer and their support people, cutting across a range of ages, demographics and health conditions.
Other key findings around the timing of end-of-life and ACP conversations include:
- carers and support people tended to want discuss ACP earlier than the person with cancer
- only 16% of people with cancer wanted to discuss ACP at the point of cancer diagnosis,
- 42% of people with cancer wanted it discussed it when their cancer was no longer curable
- 32% of people with cancer wanted to discuss it only when they raised the matter
- only 3.9% of people with cancer did not want to discuss it at all.
Dr Sonia Fullerton, co-author of the study and a palliative care consultant at Peter MacCallum Cancer Centre, has welcomed the research findings and is hopeful they will 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. 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,” said Dr Fullerton.
Ms Linda Nolte, Program Director of ACPA said, “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.”
Ms Nolte said ACPA had an important role to play in upskilling and supporting doctors and healthcare providers to ensure these sensitive conversations occur at the right time.