Are life-extending treatments for terminal illnesses a special case? Exploring choices and societal viewpoints

Neil McHugh*, Job van Exel, Helen Mason, Jon Godwin, Marissa Collins, Cam Donaldson, Rachel Baker

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

17 Citations (Scopus)
125 Downloads (Pure)


Criteria used by the National Institute for Health and Care Excellence (NICE) to assess life-extending, end-of-life (EoL) treatments imply that health gains from such treatments are valued more than other health gains. Despite claims that the policy is supported by societal values, evidence from preference elicitation studies is mixed and in-depth research has shown there are different societal viewpoints. Few studies elicit preferences for policies directly or combine different approaches to understand preferences.

Survey questions were designed to investigate support for NICE EoL guidance at national and regional levels. These ‘Decision Rule’ and ‘Treatment Choice’ questions were administered to an online sample of 1496 UK respondents in May 2014. The same respondents answered questions designed to elicit their agreement with three viewpoints (previously identified and described) in relation to provision of EoL treatments for terminally ill patients. We report the findings of these choice questions and examine how they relate to each other and respondents' viewpoints.

The Decision Rule questions described three policies: DA – a standard ‘value for money’ test, applied to all health technologies; DB – giving special consideration to all treatments for terminal illnesses; and DC – giving special consideration to specific categories of treatments for terminal illnesses e.g. life extension (as in NICE EoL guidance) or those that improve quality-of-life (QoL). Three Treatment Choices were presented: TA – improving QoL for patients with a non-terminal illness; TB – extending life for EoL patients; and TC – improving QoL at the EoL.

DC received most support (45%) with most respondents giving special consideration to EoL only when treatments improved QoL. The most commonly preferred treatment choices were TA (51%) and TC (43%). Overall, this study challenges claims about public support for NICE's EoL guidance and the focus on life extension at EoL and substantiates existing evidence of plurality in societal values.
Original languageEnglish
Pages (from-to)61-69
Number of pages9
JournalSocial Science and Medicine
Early online date16 Dec 2017
Publication statusPublished - Feb 2018


  • terminal illnesses
  • life-extending treatments
  • End-of-life
  • Policy choices
  • Life extension
  • NICE
  • Societal viewpoints
  • United Kingdom

ASJC Scopus subject areas

  • Health(social science)
  • History and Philosophy of Science


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