Valuing Health at the End of Life: Public Preferences

In 2009, the UK’s National Institute for Health and Clinical Excellence (NICE) issued supplementary advice that its Appraisal Committees are to consider when assessing treatments that extend life at the end of life. The policy thus places additional weight on the survival benefits for a small numbers of patients with terminal illnesses and short life expectancies. It assumes that this accurately reflects the societal preferences of the general public. However, little scientific evidence is available to support that premise. With funding from NICE’s Decision Support Unit, Koonal Shah of the OHE is collaborating with Aki Tsuchiya and Allan Wailoo of the University of Sheffield on initial research to help fill this void.

In 2009, the UK’s National Institute for Health and Clinical Excellence (NICE) issued supplementary advice that its Appraisal Committees are to consider when assessing treatments that extend life at the end of life.  This includes an option for approving such treatments for use in the NHS if certain criteria are met, even if base case cost-effectiveness estimates exceed the range usually considered acceptable.  These criteria are:

• the treatment is indicated for patients with short life expectancies, normally less than 24 months

• sufficient evidence exists to indicate that the treatment can extend life compared to current NHS treatment, usually by at least three months

• the treatment is licensed or otherwise indicated for small patient populations

Koonal Shah

 

The policy thus places additional weight on the survival benefits for a small numbers of patients with terminal illnesses and short life expectancies. It assumes that this accurately reflects the societal preferences of the general public. However, little scientific evidence is available to support that premise. With funding from NICE’s Decision Support Unit, Koonal Shah of the OHE is collaborating with Aki Tsuchiya and Allan Wailoo of the University of Sheffield on initial research to help fill this void.

As a first step, an exploratory study was conducted in April 2011 with a convenience sample of 21 members of staff and post-graduate students at the University of Sheffield. The results provide some indication of public support for a policy that assigns higher priority to the treatment of patients with short remaining life expectancy and sudden disease onset. A larger-scale study that uses a sample representative of the general population is now in progress.

The findings of the exploratory study were presented by Koonal Shah at the ‘Issues on rationing in health care’ conference at the London School of Economics and Political Science on 19-20 September 2011.