Researchers investigate new way to improve end of life planning

December 13th, 2013
Lancaster University is to share in a £4 million European research project, the first of its kind in end of life care planning, which will inform Government and European policy.

The Action Project is an EU funded investigation which, ultimately, seeks to improve the quality of life for people with advanced lung and colo-rectal cancers.

Lancaster will work with organisations in the Netherlands, Belgium, Italy, Slovenia and Denmark to collect data from patients, their families and health care professionals.

The four-year study, which began this week, will 'test drive' the effectiveness of a new structured conversation model, developed and now being used in the US, where people are invited to assess their options and express preferences for end of life care.

The research project will involve a cluster randomised 'clinical trial' to examine if the US model really makes a difference.

Director of Lancaster University's globally renowned International Observatory on End of Life Care Professor Sheila Payne will head up the UK research team.

"Many cases of these types of cancer are terminal so it's about helping people to make choices about the kind of treatment they do or don't want and enable them to plan for their own end of life care," said Professor Payne. "For example: do they want to be resuscitated, where do they want to be cared for and do they want to receive additional aggressive treatments.

"This is about helping people to discuss, in a structured manner, painful and difficult topics, which can be really hard and it is about developing and testing a way to enable those conversations to happen.

"Our study will find out if we can take the same model, taking into account all the cultural differences, adapt it to a European context and ascertain if it actually makes a difference to the quality of life for patients and their families."

In the UK, where most people receive good technical care, common concerns are about poor quality communication, with doctors and nurses shying away from difficult conversations because they find it so traumatic.

"The cultures are so very different from the USA, added Professor Payne. The British stiff upper lip means people are reluctant to talk about such things which can lead to a major cause of stress for people with advanced diseases and their families.

"We want to take what's been developed in a completely different culture and develop it for European cultures and test it to see if it really makes a difference for everyone involved.

"This is the first big European study of its kind which will inform and advise our Governments that this is something we should be investing in. It is, therefore, a really important study at international level."

The Lancaster University study team also includes lecturer Dr Nancy Preston and a newly recruited researcher, Lesley Dunleavy, who joined the team this week

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