Valuing health at the end of life

This thesis examines whether members of the public wish to place greater weight on a unit of health gain for end of life patients (i.e. patients with short life expectancy) than on that for other types of patients. The research question was motivated by a policy introduced in 2009 by the National Institute for Health and Care Excellence (NICE). The policy indicates that under certain circumstances, life-extending end of life treatments may be recommended for use in the National Health Service even if they would not normally be considered a cost-effective use of health care resources. NICE’s policy was justified in part by claims that it reflected the preferences of society, but little evidence was available to support the premise that society favours such an ‘end of life premium’. This thesis helps to fill the gap in the evidence.

Four empirical studies were undertaken, each using hypothetical choice exercises to elicit the stated preferences of the UK general public regarding the value of health gains for end of life patients (total n=6,441). A variety of preference elicitation techniques, modes of administration and analytical approaches were used. Results varied across studies, but overall the evidence is not consistent with an end of life premium. Whereas NICE’s end of life policy applies to life-extending treatments, there is some evidence that quality of life improvements are more highly valued than life extensions for end of life patients. The results of all four studies suggest that where a preference for prioritising the treatment of end of life patients does exist, this preference may be driven by concerns about how long the patients have known about their prognosis rather than how long they have left to live per se. End of life-related preferences also appear to be sensitive to framing effects and study design choices.