Valuing Health at the End of Life: An Exploratory Preference Elicitation Study

Abstract

Background: In January 2009, the National Institute for Health and Clinical Excellence (NICE) issued supplementary advice to its Appraisal Committees to be taken into account when appraising life‐ extending ‘end of life’ treatments. This indicated that if certain criteria are met, it may be appropriate to recommend the use of end of life treatments that offer an extension to life even if their reference case incremental cost effectiveness ratios exceed the upper end of the range normally considered acceptable. However, the public consultation carried out by NICE revealed concerns that there is little evidence to support the premise that society is prepared to fund life‐ extending end of life treatments that would not meet the cost effectiveness criteria used for other treatments. Objective: The aim of this exploratory study is to design and pilot an approach to examining whether the policy of giving higher priority to life‐extending end of life treatments (as specified by NICE) than to other types of treatment is consistent with the preferences of members of the general public. Methods: The survey used five scenarios to address the research question posed, each of which involved asking respondents to choose which of two hypothetical patients they would prefer to treat, assuming that the health service has enough funds to treat one but not both of them. The various scenarios were designed so as to control for age‐ and time‐related preferences, and to examine the trade‐off between giving life‐extending and quality of life‐improving treatments to end of life patients. Follow‐up questions were used to elicit additional information about the reasons for respondents’ choices. The survey was administered using face‐to‐face interviews. Results: Interviews were completed by a convenience sample of 21 members of non‐academic staff and postgraduate students at the University of Sheffield. The majority of respondents chose to treat the patient who is closest to their expected death or whose disease progression has been most sudden. Very few respondents expressed indifference or unwillingness to choose between the two patients. Discussion: The most common driver of respondents’ choices was a concern about how much time patients have to ‘prepare for death’, which indicates, prima facie, support for NICE’s end of life policy. However, the ways in which information on patient age and the timing of treatment affected responses was not straightforward and in some cases contrary to the authors’ conjectured predictions. The results also suggest that improving quality of life is at least as, if not more, important than extending life in the end of life scenario.