Case study:

11 May 2010

Tool to help explore patient preferences for information and involvement in decision-making

Key points

Researchers from King’s College London developed and piloted a questionnaire to be used in three local hospices to discuss patients’ preferences before imparting clinical information or involving the patient and family in decisions.

The use of the tool increased patient satisfaction and doctors’ confidence across all the measures.

But it also raised serious ethical considerations about just how much information should be imparted to dying patients and at what stage.

Although 69% of the sample said they wanted full information, 28% chose more limited information and 2.7% didn’t want to know future details.

This raises a dilemma.

Giving patients more information than they want can clearly be harmful.

On the other hand, unless issues such as a preference for a home death are assessed early, the opportunity for advanced planning is lost and dying at home becomes impossible.

The researchers note that the potential for harm in giving too much information increases with advanced and life-threatening illnesses.

So it is vital that patients’ preferences are truly understood and revisited regularly so clinicians can work with them to the end of life.

They suggest that one of the most valuable aspects of the tool may be that it helps initiate dialogue as well as prompting documentation and interdisciplinary communication.

Dissemination of the tool among hospices is continuing.

There has been some discussion about using or adapting this tool in the community and care homes where it could prove even more useful.