TY - JOUR
T1 - Extending life for people with a terminal illness
T2 - A moral right and an expensive death? Exploring societal perspectives
AU - McHugh, Neil
AU - Baker, Rachel M.
AU - Mason, Helen
AU - Williamson, Laura
AU - Van Exel, Job
AU - Deogaonkar, Rohan
AU - Collins, Marissa
AU - Donaldson, Cam
N1 - Funding Information:
The study was funded by the Medical Research Council (MRC) Methodology Panel (project ID number G1002324). This paper has benefited from comments received at the Ideas and Reality in Social Ethics conference in Newport, Wales - April 2014; the International Society for the Scientific Study of Subjectivity conference in Salt Lake City, USA - September 2014; and the Priorities in Health Care conference 2014 in Melbourne, Australia - November 2014.
Funding Information:
According to the National Institute for Health and Care Excellence (NICE) decisions on the appropriate allocation of resources are based on scientific judgments, supported by legal considerations and, importantly for this research, social value judgments [11]. NICE social value judgments are grounded in the views of the general public, garnered mainly through the work of the Citizens Councild, and represented in a set of principles articulated in a document which was originally issued by NICE in 2005, with a second edition in 2008, and currently under revision again [12,13]. In their social value judgment document, existing debates on utilitarian and egalitarian approaches to distributive justice are mentioned in brief but NICE places emphasis largely on procedural justice, based on Daniels and Sabin’s [14] ‘accountability for reasonableness’. Despite the emphasis given to procedural justice or ‘process values’ [15], the cost per QALY calculatione appears to remain central to NICE recommendations [16].
Publisher Copyright:
© 2015 McHugh et al.; licensee BioMed Central.
PY - 2015/3/7
Y1 - 2015/3/7
N2 - Background: Many publicly-funded health systems apply cost-benefit frameworks in response to the moral dilemma of how best to allocate scarce healthcare resources. However, implementation of recommendations based on costs and benefit calculations and subsequent challenges have led to 'special cases' with certain types of health benefits considered more valuable than others. Recent debate and research has focused on the relative value of life extensions for people with terminal illnesses. This research investigates societal perspectives in relation to this issue, in the UK. Methods: Q methodology was used to elicit societal perspectives from a purposively selected sample of data-rich respondents. Participants ranked 49 statements of opinion (developed for this study), onto a grid, according to level of agreement. These 'Q sorts' were followed by brief interviews. Factor analysis was used to identify shared points of view (patterns of similarity between individuals' Q sorts). Results: Analysis produced a three factor solution. These rich, shared accounts can be broadly summarised as: i) 'A population perspective - value for money, no special cases', ii) 'Life is precious - valuing life-extension and patient choice', iii) 'Valuing wider benefits and opportunity cost - the quality of life and death'. From the factor descriptions it is clear that the main philosophical positions that have long dominated debates on the just allocation of resources have a basis in public opinion. Conclusions: The existence of certain moral positions in the views of society does not ethically imply, and pragmatically cannot mean, that all are translated into policy. Our findings highlight normative tensions and the importance of critically engaging with these normative issues (in addition to the current focus on a procedural justice approach to health policy). Future research should focus on i) the extent to which these perspectives are supported in society, ii) how respondents' perspectives relate to specific resource allocation questions, and iii) the characteristics of respondents associated with each perspective.
AB - Background: Many publicly-funded health systems apply cost-benefit frameworks in response to the moral dilemma of how best to allocate scarce healthcare resources. However, implementation of recommendations based on costs and benefit calculations and subsequent challenges have led to 'special cases' with certain types of health benefits considered more valuable than others. Recent debate and research has focused on the relative value of life extensions for people with terminal illnesses. This research investigates societal perspectives in relation to this issue, in the UK. Methods: Q methodology was used to elicit societal perspectives from a purposively selected sample of data-rich respondents. Participants ranked 49 statements of opinion (developed for this study), onto a grid, according to level of agreement. These 'Q sorts' were followed by brief interviews. Factor analysis was used to identify shared points of view (patterns of similarity between individuals' Q sorts). Results: Analysis produced a three factor solution. These rich, shared accounts can be broadly summarised as: i) 'A population perspective - value for money, no special cases', ii) 'Life is precious - valuing life-extension and patient choice', iii) 'Valuing wider benefits and opportunity cost - the quality of life and death'. From the factor descriptions it is clear that the main philosophical positions that have long dominated debates on the just allocation of resources have a basis in public opinion. Conclusions: The existence of certain moral positions in the views of society does not ethically imply, and pragmatically cannot mean, that all are translated into policy. Our findings highlight normative tensions and the importance of critically engaging with these normative issues (in addition to the current focus on a procedural justice approach to health policy). Future research should focus on i) the extent to which these perspectives are supported in society, ii) how respondents' perspectives relate to specific resource allocation questions, and iii) the characteristics of respondents associated with each perspective.
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U2 - 10.1186/s12910-015-0008-x
DO - 10.1186/s12910-015-0008-x
M3 - Article
C2 - 25885447
AN - SCOPUS:84928753781
SN - 1472-6939
VL - 16
JO - BMC Medical Ethics
JF - BMC Medical Ethics
IS - 1
M1 - 14
ER -