The paper proposes a new method of researching public opinion for the purposes of valuing the outcomes of healthcare interventions. The issue I address is that, under the quality-adjusted life-year system, disabled patients face a higher cost-effectiveness hurdle than able-bodied patients. This seems inequitable. The author considers the alternative approaches to valuing healthcare interventions that have been proposed, and shows that all of them face the same problem. It is proposed that to value an outcome, instead of researching the general (...) public, the population that is to be targeted with the intervention should be researched. (shrink)

I would like to thank Whitehurst et al for their comments on my paper.1 Although I will argue their approach will not eliminate the potential for disability discrimination from quality-adjusted life year -based assessment, their comments were very thought provoking. Whitehurst et al argue that, to the extent that allocating healthcare by QALYs discriminates against disabled patients, the fault is not with the QALY framework, but with ‘the descriptive systems of preference-based health-related quality of life instruments’.1 Specifically, they argue that (...) some HRQoL survey instruments do not characterise health impairments adequately. For example, Whitehurst et al mention an earlier study of HRQoL survey instruments that had different ways of asking about mobility. Some instruments asked specifically about the respondent’s ability to walk, while others asked about mobility. The study found that, in relation to individuals with spinal cord injuries, survey instruments focused on ability to walk produced lower quality of life scores than instruments focused on mobility. Whitehurst et al argue from this that survey instruments should include ‘adequate’ health state descriptions. This seems eminently sensible. However, contrary to their view, there is no guarantee that this will avoid discrimination. In fact, …. (shrink)

I consider various principles which might explain our intuitive obligation to rescue people from imminent death at great cost, even when the same resources could produce more benefit elsewhere. Our obligation to rescue is commonly explained in terms of the identifiability of the rescuee, but I reject this account. Instead, I offer two considerations which may come into play. Firstly, I explain the seeming importance of identifiability in terms of an intuitive obligation to prioritise life-extending interventions for people who face (...) a high risk of an early death, and I explain this in turn with a fair innings-style principle which prioritises life-extending interventions for people expected to die young. However, this account is incomplete. It does not explain why we would devote the same resources to rescuing miners stuck down a mine even if they are elderly. We are averse to letting people die suddenly, or separated from friends and family. And so, secondly, I give a new account that explains this in terms of narrative considerations. We value life stories that follow certain patterns, classic patterns which are reflected in many popular myths and stories. We are particularly averse to depriving people of the opportunity to follow some such pattern as they approach death. This means allowing them to sort out their affairs, say goodbyes to family and friends, review their life, or come to terms with death itself. Such activities carry a lot of meaning as ways of closing our life story in the right way. So, for someone who has not been given much notice of their death, an extra month is worth much more than for other patients. Finally, I review the UK National Health Service's end of life premium, which gives priority to patients with short life expectancy. I suggest it falls short in terms of such considerations. For example, the NHS defines its timings in terms of how long the patient can expect to live as at the time of the treatment decision, whereas the timings should be specified in terms of time from diagnosis. (shrink)