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

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Abstract

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
Volume198
Early online date17 Dec 2017
DOIs
Publication statusPublished - Feb 2018

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illness
quality of life
health
National Institutes of Health (U.S.)
Quality of Life
Therapeutics
Life Expectancy
Delivery of Health Care
public support
evidence
End of Life
Illness
Values
Terminally Ill
Biomedical Technology
Health
Surveys and Questionnaires
Guidance
Excellence
Research

Keywords

  • terminal illnesses
  • life-extending treatments

Cite this

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title = "Are life-extending treatments for terminal illnesses a special case? Exploring choices and societal viewpoints",
abstract = "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.",
keywords = "terminal illnesses, life-extending treatments",
author = "Neil McHugh and {van Exel}, Job and Helen Mason and Jon Godwin and Marissa Collins and Cam Donaldson and Rachel Baker",
note = "Acceptance in SAN Author resolving issue with final publisher version of article; will contact us when ok to upload VoR. ET 9-2-18 Added project relation to R. Baker's project (note title different in PURE) Funding note: This work was supported by the Medical Research Council (MRC) Methodology Panel (project ID number G1002324). Supplementary data related to this article can be found at http://dx. doi.org/10.1016/j.socscimed.2017.12.019",
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AU - McHugh, Neil

AU - van Exel, Job

AU - Mason, Helen

AU - Godwin, Jon

AU - Collins, Marissa

AU - Donaldson, Cam

AU - Baker, Rachel

N1 - Acceptance in SAN Author resolving issue with final publisher version of article; will contact us when ok to upload VoR. ET 9-2-18 Added project relation to R. Baker's project (note title different in PURE) Funding note: This work was supported by the Medical Research Council (MRC) Methodology Panel (project ID number G1002324). Supplementary data related to this article can be found at http://dx. doi.org/10.1016/j.socscimed.2017.12.019

PY - 2018/2

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AB - 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.

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KW - life-extending treatments

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DO - 10.1016/j.socscimed.2017.12.019

M3 - Article

VL - 198

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EP - 69

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