Valuing the care in healthcare: priorities and trade-offs - Honorary Professor of Clinical Decision Science writes for the Journal of Medical Ethics

Healthcare decisions are complex, whether we are considering individual choices about our own health, or policy decisions made by political or professional bodies.  Disease and the actions taken to prevent, diagnose and treat it, may have widespread ramifications on all aspects of our lives.  Furthermore, policy and personal decisions in other aspects of our life, may have significant individual or public health implications.  These effects have been starkly highlighted by the current pandemic, where we have seen the widespread effects of disease and its management, not only on health outcomes, but on the economy, employment and personal freedoms.

Jonathan Michaels

Politicians have told us that they are “following the science”, but it is clear from the diversity of responses that they are making different trade-offs, which may reflect divergent ethical and philosophical responses to the situation.

About a year ago, I wrote a paper on the potential for epistemic injustices in evidence-based healthcare policy, that highlighted some of the potential issues, biases and distortions that may undermine the legitimacy of evidence-based decisions.  However, this is only half the story.  Even with the best evidence to predict the consequences of our decisions, we are still faced with value judgements about the trade-offs between different processes and outcomes.  My current paper was written at about the same time, before the pandemic hit, and addresses some of these value judgments.  If I was writing it today, I would have many examples from the different approaches to the health and economic challenges that the pandemic presents.

In their responses to the pandemic, we have heard politicians variously describing saving lives, preserving jobs, reopening schools or other activities as their ‘top priority’.  Priority is a comparative term, but we rarely hear that such-and-such is a priority over x, y or z.  It is easy enough to state that all sorts of things are top priorities if we are not asked to specify what they are being prioritised over.  If everything is prioritised, then nothing is a priority.

In practice, we constantly make trade-offs between the many aspects of our life that we value, whether this is accepting the risks of a surgical procedure to relieve the pain of arthritis, or accepting the risks of car travel, to preserve our freedom of movement.  In time, we may learn to live with the pandemic as we do with flu, admitting that there is a level of mortality that is an acceptable trade-off against our personal freedoms, our social life and the health of the economy.  We may each have a different perspective on such trade-offs.  The debate over the timing of second vaccine doses highlights such differences.  A public health approach may find that the greater good is served by using limited vaccine supplies to provide single doses to a greater number, delaying the second dose, while doctors with individual patient’s interests at heart, may call for the shorter delay, evaluated in trials.

We value many aspects of our life that may be affected by healthcare decisions.  In making decisions we must decide whose values and preferences are relevant and how these should be elicited and incorporated.  Those making policy decisions in healthcare have widely adopted the quality adjusted life year (QALY) as a metric that combines the various dimensions of health with the length of survival.  However, this does not capture all the relevant aspects of health outcomes, let alone all the other effects that might be relevant to such decisions.  A number of ‘value assessment frameworks’ have been suggested that incorporate other potential consequences of disease, disability and healthcare in the decision-making process.

In this paper, I argue that such frameworks may privilege the interests of certain commercial or political interests that influence their development and adoption.  The identified elements of value tend to be those that favour new, high cost, drugs and technologies, and many run the risk of double counting or inflating the apparent value of certain technologies.  This is likely to result in decisions that fail to incorporate other features of healthcare that are highly valued by society, particularly those relating to care processes.  Valued aspects that are most likely to be displaced are those such as dignity, compassion, choice and autonomy, all of which may have significant resource implications but are more difficult to quantify.

If we are to develop healthcare policy that reflects societal values and achieves distributive justice, then more attention is required to identify all the aspects of healthcare that we value and ensure that we do not produce procedural mechanisms that result in their displacement by costly new technologies.

 Paper title: Value assessment frameworks: who is valuing the care in healthcare?

Author: Jonathan Michaels

Affiliations: School of Health and Related Research, University of Sheffield

Competing interests: None

Social media accounts of post author(s): @JonM_ScHARR

The original blog post appeared in the Journal of Medical Ethics and is republished under a CC-BY-NC licence https://blogs.bmj.com/medical-ethics/2021/03/16/valuing-the-care-in-healthcare-priorities-and-trade-offs/

'Evidence-based injustices' by Jonathan Michaels, Honorary Professor of Clinical Decision Science

Professor Jonathan Michaels    

This blog post originated in the Journal of Medical Ethics. The published version is available at: https://blogs.bmj.com/medical-ethics/2020/05/29/evidence-based-injustices/

 In healthcare, and many other areas of endeavour, policy and guidance claims legitimacy on the basis that it is evidence-based and follows the best scientific advice. Expert advisory committees collect, consider    and interpret extensive, and often complex, scientific   evidence. As we have seen in the diverse responses to Covid-19, evidence and expertise does not necessarily lead to purely ‘objective’ responses or unequivocal decisions. Instead, it may provide a veneer of scientific authority that masks a host of underlying subjective influences, uncertainties, biases, and value judgements.

Over my career as a vascular surgeon I developed an interest in decision theory, perhaps in the expectation that it would give me reassurance in the complex decisions affecting life and limb that the specialty demands. Instead, rather than providing clarity in such questions, it helped to highlight the underlying structure of decisions, which depend both upon predictive evidence and the value judgements inherent in dealing with uncertainty and the necessary trade-offs between potentially conflicting objectives. Through this interest I became involved in the development of guidelines and technology appraisals carried out by the National Institute of Health and Care Excellence (NICE) in the UK.

Over the years, I observed the growing political and commercial influence on all aspects of such processes, from the selection of subject matter, through the generation and interpretation of evidence, to the value frameworks and decision-making criteria that determine the final outcomes. Complex decision-making processes, a culture of expertise, formal and bureaucratic processes and an extensive ‘case-law’ have developed over the years. This has the effect of excluding those without the necessary background knowledge, economic resources and academic credibility from contributing to, or challenging, such decisions.

A few years ago, I came across Miranda Fricker’s description of epistemic injustice. She suggests that “there is a distinctively epistemic genus of injustice, in which someone is wronged specifically in their capacity as a knower”. This results in individuals or groups being systematically disadvantaged through exclusion from the processes that generate the knowledge upon which so many decisions depend. This resonated with my own experience of the way in which evidence-based principles appear to be applied in healthcare decisions, particularly those involving rationing of scarce resources.

In exploring the principles of distributive and procedural justice that underpin healthcare policy and guidance, I highlight the factors that may lead to injustices and consider how these might be addressed. Evidential failures may occur due to distortion in the selection of subject matter for research, the limitations of preferred research methods, the choice of comparators and outcome measures, or the reporting and interpretation of results. Epistemic exclusion may result in the failure of guidance to reflect the interests and values of particular patient, service-user, societal or professional groups. Opportunities to contribute to or challenge decisions may be inaccessible to those most likely to be disadvantaged by the outcome.

Apart from the many underlying biases and distortions that are inherent in the published evidence, there are implicit and explicit value judgements in the decision-making processes that may remain obscured or reflect unwarranted epistemic privilege assigned to particular groups. Some of the potential remedies, such as the regulation of trial design and transparent reporting, are well documented, but still fail to be implemented. Significant improvement in other aspects may require a fundamental shift in the research agenda to reflect areas of societal concern, greater emphasis on independent evaluation of all the evidence, including explicit adjustment for likely biases, and a means to represent the interests of marginalised or excluded stakeholders.

Download the full paper from the Journal of Medical Ethics: 
https://jme.bmj.com/content/early/2020/05/26/medethics-2020-106171