“I think it’s really important that people keep signing up to these type of trials to push research forward.”
A study looking at communication and planning future care for people with advanced cancer
We know that this is an especially worrying time for people with cancer and their family and friends. We have separate information about coronavirus and cancer. Please read that information alongside this page. We will update that information as guidance changes.
This study looked at whether conversations about their future care would help people with advanced cancer.
Doctors and nurses aim to make sure that everyone has a say in how they are cared for. But sometimes this does not happen and people may feel that their wishes weren’t always heard, or met.
People want different amounts of information at different stages of their illness. They may want to discuss how they would like to be cared for if they were no longer able to decide for themselves at some point in the future. This is called advance care planning.
Researchers wanted to know if advance care planning gave people more input into their future care. A previous study developed some topics to help doctors and nurses discuss the future with patients. Now the research team wanted to see how useful these questions were.
The aims of this study were to find out
- If it was possible to do a randomised trial about advance care planning
- What people thought about advance care planning discussions and whether it was possible to carry them out
- What difference they made to the people who took part
Summary of results
The study team found that they could carry out a discussion about advance care planning without causing people too much anxiety or depression.
People were asked if they had a preference to have a discussion about advance care planning or not.
There were 4 groups people could have been in.
Those who preferred to have the advanced care planning discussion with their usual care were in group 1. Those who did not were in group 2.
Those who didn’t mind were put into either group 3 or group 4 at random. This is called
All 4 groups completed some questionnaires. They were asked about
- Their feelings about their cancer
- How satisfied they were with the care they had
- Whether they felt they could talk to their family and doctor about their care
- Planning care for the future (advance care planning)
The researchers asked them about these subjects again 8 weeks later.
Everyone in groups 1 and 3 met with someone trained to discuss care planning (called a ‘care planning mediator’). They talked about
- How they found their care in the past
- Their problems and concerns at that moment
- Any fears they may have had about their future
- How they would prefer their future care to be
- Any money worries they may have had
- Communication with doctors and nurses
- Communication with family and friends
Everyone was asked to read 14 statements regarding how
- Often they discussed advance care planning with health carers , family and friends
- Happy they were to discuss it
- Satisfied they were with the discussion
Just over half the people showed a preference to have the advance care planning discussion with their usual care. Whether they choose to have advance care planning, or were randomised to have it, the number of discussions between these people, their family or friends and healthcare professionals increased. But their happiness with the communication was unchanged or worse and the satisfaction with the services decreased. The researchers also noted that taking part in this trial did not cause significant anxiety or depression and that the number of people who dropped out was low.
The study team stated that these results were significant because it showed that it was possible to do a randomised trial about advance care planning without increasing peoples’ anxiety and depression. This study provided new evidence to show that discussions about advance care planning were acceptable and effective for people with advanced cancer.
We have based this summary on information from the team who ran the trial. The information they sent us has been reviewed by independent specialists (
How to join a clinical trial
Dr Louise Jones
Dimbleby Cancer Care
Marie Curie Cancer Care
National Institute for Health Research Cancer Research Network (NCRN)