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 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 preferences of the general public. However, little scientific evidence is available to support that premise.
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.
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 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 has collaborated with Aki Tsuchiya, Arne Risa Hole and Allan Wailoo of the University of Sheffield to conduct research to help fill this void.
A discrete choice experiment was conducted in March 2012 with a sample of 3,969 members of the general public in England and Wales. Respondents were presented with a series of priority-setting scenarios. They were asked which of two hypothetical patients they thought should be treated, assuming the health service had enough funds to treat only one of them. For each patient, life expectancy and quality of life, with and without treatment, were described. The key findings are:
- There is no evidence that respondents on average are willing to sacrifice overall health gains in order to give priority to the treatment of end of life patients.
- Most respondents choose to treat the patient closest to the end of life only when the health gains are similar to, or greater than, the benefits of treating the patient not near the end of life.
- Results from the regression analysis suggest that treatments that extend life are valued slightly more highly than treatments that improve quality of life and offer similar gains in terms of quality adjusted life years.
- All else being equal, respondents are more likely to choose to treat a patient who has just learned about their illness than one who has known for some time.
The study is available as an OHE Research Paper and a NICE Decision Support Unit report.
Download Shah, K., Tsuchiya, A., Risa Hole, A., and Wailoo, A. (2012) Valuing health at the end of life: A stated preference discrete choice experiment. NICE Decision Support Unit report. Sheffield: Decision Support Unit.
