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Extending life for people with a terminal illness: a moral right or an expensive death? Exploring societal perspectives
Following the meeting, a transcript of the Twitter discussion can be downloaded here.
Links to the article
Summary of the paper
A lot of research effort has been spent on whether health economists’ most ingrained normative assumption should hold; is a QALY of equal value regardless of to whom it accrues. In the UK, the National Institute for Health and Care Excellence has given weighting to ‘special cases’; namely, life-extending drugs for patients near the end of their life (mainly for cancer). However, existing empirical research about whether societal values support such a weighting has given conflicting results.
McHugh et al, in their new working paper, present the first major mixed methods study of societal perspectives for QALY-weighting. The authors use Q methodology – which involves the ranking of opinion statements according to agreement – to elicit societal perspectives on the relative value of life extension for people with terminal illness. Opinion statements were collected from 4 sources:
- newspaper articles
- a NICE public consultation
- 16 interviews with key informants
- 3 focus groups with the general public
The Q sort was conducted with people from academia, the pharmaceutical industry, charities, patient groups, religious groups, clinicians, people with experience of terminal illness and a sample of the general public. The authors’ final sample included 61 Q sorts and factor analysis identified 3 distinguishable perspectives, which can be summarised as:
- A population perspective (value for money, no special cases)
- An individual perspective (value of life, not cost)
- A mixed perspective
Factor 1 individuals are unlikely to support any QALY-weighting, maintaining a utilitarian-type health-maximising perspective. Factor 2 respondents reject the denial of life extending treatments and assert that patients and their families should decided whether or not they wish to receive the treatment; regardless of cost. This group appear to disagree with cost-effectiveness analysis altogether. Factor 3 represents a more nuanced view, asserting that value is broader than health gain alone. However, factor 3 was associated with a focus on quality of life, and so support for expensive life-extending treatment would depend on this. It is unclear whether QALY-weighting would adequately achieve this.
- Is the question of QALY-weighting a normative one or a positive one?
- Are the three factors likely to be robust across ethical dilemmas other than terminal illness?
- To what extent are the opinions associated with the 3 factors likely to be robust to further deliberation?
- Are factor 2 respondents simply wrong?
- Should QALY-weighting be based on democratic processes?
- Is it of concern that current policy appears to reflect the views of health economists better than other groups?
- Where do you stand?
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