Lifestyle-related diseases and individual responsibility through the prism of solidarity

Background

Resources are becoming increasingly scarce in all advanced health-care systems. This is due to many factors, such as the epidemiological transition towards longevity, continuing medical progress and an overall increasing demand for health care. Consequently, questions on how to allocate health-care resources fairly and efficiently have been discussed extensively over the last two decades. A substantial part of this debate is devoted to the question of whether individual (or personal) responsibility should be used as a criterion to allocate – or ration – health-care resources. ^1–5

Those who suggest individual responsibility as a rationing criterion in health care almost always refer to lifestyle-related illnesses, either directly or indirectly. For example, some authors argue that the treatment of conditions based on lifestyle and health behaviour should be excluded from publicly funded health care or insurance plans, and there are policies already in existence that use financial disincentives to deter unhealthy lifestyles. ^6–8

The concept of solidarity has played some role in this debate, but with few exceptions ⁹ has not yet been applied to questions around lifestyle-related illnesses and fair rationing in a systematic way. In this article, we analyse some of the main arguments in the current discussion on access to health-care resources and discuss them in the context of both the practice and the normative value of solidarity. In the final section, we develop suggestions for health policy making. Doing this, we draw upon an understanding of solidarity that we have developed in a recent report commissioned by the Nuffield Council on Bioethics and funded by the Arts and Humanities Research Council and the Nuffield Foundation. ^10,11 This article is based on the report and its findings.

Our understanding of solidarity

Our report, Solidarity: Reflections on an Emerging Concept in Bioethics, ¹⁰ offers an overview of the different uses of solidarity in recent bioethical writing, based on an extensive literature analysis. Despite the fact that the frequency of mentions of the term solidarity has increased in public discourse, explicit references are relatively rare in recent bioethical writings compared with other terms such as autonomy, justice, privacy and identity. Explicit references occur most frequently in four contexts, namely public health; justice and equity of health-care systems; global health; and the question of European versus American values. However, solidarity as a concept, an idea or a value has a greater presence in bioethical writings than the frequency of explicit uses of the term might have suggested. As it is, solidarity is defined or described in many different, sometimes contradictory or not fully developed, ways, and a number of related yet distinct terms are sometimes used interchangeably with solidarity (Report chapters 3 and 4). Due to this lack of consistency in the way in which the term is employed in bioethical writings, solidarity is often criticized for its alleged vagueness; ^12–14 other authors are sceptical of the term because they see it as morally prescriptive in a particularistic way. ¹⁵ It could be argued that the ‘vagueness’ of the term has benefits, such as a certain level of openness that allows a wider range of people with different professional and disciplinary backgrounds to contribute to the discussion. However, we believe that such benefits are clearly outweighed by the benefits of a transparent definition of the term involved. For this reason, we have developed a definition of solidarity in our report. In our understanding, and in its most bare-bone form, solidarity signifies shared practices reflecting a collective commitment to carry ‘costs’ (financial, social, emotional or otherwise) to assist others. It is important to note that we understand solidarity as a practice and not merely as an inner sentiment or an abstract value. As such, it requires actions. Motivations – feelings such as empathy – are not sufficient to satisfy this understanding of solidarity, unless they manifest themselves in acts. The term ‘costs’ is understood to mean a wide range of contributions that groups or individuals make to assist others, both big and small. It does not exclude scenarios where groups and individuals involved in such solidarity practices also benefit from this involvement. Unlike the costs that are carried, such benefits, however – or even the expectation of a benefit – are not a precondition for solidarity.

Although solidarity is to be understood primarily as a shared practice (or a cluster of such practices) reflecting a collective commitment, simply claiming that such practices exist is unsatisfactory. Our definition, therefore, consists of three tiers starting with a conceptualization of how individuals come to engage in practising solidarity. They stand in a hierarchy of institutionalization, with the first tier at the interpersonal and most informal, and the third tier at the most formal – legal – level.

Solidarity, lifestyle-related diseases and individual responsibility: reconstruction of a well-known argument

Put very simply, the main argument in favour of taking into account the individual responsibility for health in taking decisions on resource allocation states that: people with lifestyle-related illnesses can be held accountable for the lifestyle choices that lead to their health problems. As a result, their access to fully or partially publicly funded health care should be limited, and/or their insurance coverage should be modified based on their health behaviour, and/or fines should be levied. Regardless of which concept of lifestyle-related illnesses is chosen ¹⁶ to support this line of thought, the exclusion of certain groups of individuals is based on the assumption that those engaging in certain unhealthy lifestyles have a higher risk of contracting particular diseases (e.g. type 2 diabetes in an obese person), or a higher risk of illness overall. This higher risk is then often linked to cost, meaning that some people with a particular lifestyle are seen as incurring higher costs for the system than others. ^17,18

While risk stratification is by no means a novel practice, having been employed in the context of private insurance for a long time, recent years have seen an increase in policies that utilize risk stratification in health care and public health insurance policy in most developed countries. Dubois ¹⁹ provides an overview of existing modes of distinguishing between people with ‘healthy’ versus ‘unhealthy’ lifestyles in health-care policy:

For example, in the USA there is a trend towards more risk stratification in private insurance, ²⁰ primarily along the lines of smoking and body mass index (BMI). Simultaneously, there has been an increase in the policies relying on co-insurance and deductibles ²⁰ or incentive-based plans and bonus systems rewarding ‘healthy’ lifestyles or participation in prevention programmes, ^21,22 which include ‘malus’ elements (i.e. withholding of services based on individual health behaviour); ⁸

We are currently witnessing a widening of the range of scenarios and situations for which people are seen as (at least partly) responsible across a wide range of countries. In addition, the range of situations for which individuals are now to be held accountable according to some authors include those who have known family histories of disease and refrain from taking additional precautions ³⁴ or those who forego susceptibility testing or other predictive testing which is available to them. ³⁵ In its extreme form, the responsible individual is seen as one who actively seeks to learn about as many risks as possible so as to take precautions to prevent them from materializing. ³⁶ At that stage, being responsible no longer means that one merely avoids activities that are known as excessively dangerous, but it has become synonymous with taking precautions and actively engaging in prevention. ^37,38 This understanding, albeit in a slightly different and more moderate form, also resonates with contributions to the debate on lifestyle-related illness that places an emphasis on people's willingness to lead a healthy life, even if they do not succeed. ^39,40

As mentioned above, the conceptual tool aiding those who argue for the exclusion of people with ‘high-risk’ lifestyles from (some) public health care is risk stratification. Risk stratification is highly relevant to our understanding of solidarity because people's recognition of similarity with others in a relevant respect – which is an important condition for their willingness to carry costs for others according to our definition – can also be based on a common risk that is shared. It is then a question of the kind of risk we are talking about that determines who, if anybody, will be excluded from the scope of people who deserve our solidarity. If people incur higher costs because they are struck by illness as a result of factors that are considered to be beyond their control (the paradigmatic example is that of a person who has never smoked but suffers from lung cancer), then this situation results from a risk that most people recognize as their own: We could all be afflicted by illnesses, accidents or other kinds of suffering from which we could not reasonably have protected ourselves. This situation represents one of the basic vulnerabilities of human and social life.

If, on the other hand, people suffer from illnesses as a result of allegedly deliberate actions or actions against better knowledge, then they are taken to be accountable and indeed responsible for their condition. They are thus seen as belonging to a group of people with a different risk profile from ‘innocent’ people, both empirically and in a moral sense. Smokers with emphysema or coronary heart disease, over-eaters with type 2 diabetes or those who drink too much alcohol and suffer from cirrhosis of the liver are often seen in this light. This is also to say that our personal understanding of who we are connected with – in the sense of recognizing similarity in a relevant respect – shapes our judgements of what situations people should be held accountable for. ^41–43 For example, if we feel pressured by our social and political environment to undertake every possible preventive and predictive measure to learn about and decrease the existing risks, and if we invest money, time and effort in this, we may feel a grudge against those who spend their time and money in more pleasurable ways and who therefore, we think, incur additional risks (read: costs). We are unlikely to recognize similarity with them and may even resent them. As a result, we feel that we are literally in a different risk ‘category’ than those who ‘do not care’ about protecting their health in the same diligent way that we do. We may feel entitled to lower insurance premiums as we actively work towards decreasing our risk; or we may feel that we should contribute less to solidaristic insurance arrangements because we already invest so much in our own, individual health. In other words, if what we see when looking at others are primarily the practices they engage in that are different from our own, then we will not feel bound to them by solidarity.

A solidarity-based rebuttal

If we do not recognize sameness with others in a relevant respect, which is a requirement for Tier 1 and, consequently, all ‘higher’ levels of solidarity, then the argument can be made that it is warranted to exclude them (or us, depending on who is living ‘unhealthily’) from solidaristic practices and also at higher levels of institutionalization (Tier 3), such as from publicly funded health care, or from (public or private) health insurance. We argue, however, that the argument that the access to health care for people with ‘unhealthy’ or ‘risky’ lifestyles should be limited – both in its general form and when recast in the language of solidarity – rests on a misconception of risk and the moral consequences drawn from this. In fact, we believe that an argument based on solidarity (as we understand it here) will come to an almost opposite conclusion.

First of all, the attribution of higher risk based on individually chosen lifestyle is problematic, as it is based on direct causal links that are currently very challenging to prove. This is not to diminish the importance of behaviour as a factor for illnesses such as diabetes, stroke and heart failure. Available data from epidemiology and public health research shows very clearly that behaviour is a major causal factor in these and many other diseases. However, it is far more difficult, and often impossible, to determine exactly what led to a particular condition in an individual person. For this reason alone – that is, because decisions about causality would be made under conditions of uncertainty – individual responsibility has been rejected as a basis for allocating health-care resources. ⁴⁴

Moreover, most lifestyle-related diseases are multi-factorial. Recent research in genetics and genomics has proved that almost every condition or disease is the result of a complex interaction of heritable and non-heritable factors having to do with people's lifestyles, social and natural environments, etc. Very few diseases or conditions have no genetic dimension at all, ⁴⁵ and hardly any diseases are caused only by genetic or chromosomal factors (notable exceptions being, for example, Huntington's disease or Down's syndrome). In addition, research in epigenetics has shown that some environmental influences, such as the consumption of particular foods, can change the way genes are switched on or off, leading to a situation where the social is effectively folded into the genetic and vice versa. Thus, it has become increasingly difficult to differentiate between the genetic and the non-genetic. ⁴⁶ Against this backdrop of lack of knowledge and empirical uncertainty, the notion of what we can be held accountable ⁴⁷ for, is clearly a moving target.

In addition, as Schmidt ² argues, discussions about responsibility for health and disease tend to ‘distract the attention of policy makers away from addressing the underlying and hugely important social determinants of health’. ⁴⁸ This line of argument stresses that health behaviour cannot be taken as subject to individual choice only, ⁴⁹ but rather is shaped significantly by upbringing, education, wealth and many other social and environmental factors. In addition to being empirically uncertain, in the context of lifestyle-related diseases, responsibility has therefore been described as politically problematic. ⁵⁰

Moreover, although we may actively work towards decreasing some risks that we knowingly encounter, we may have much higher risks in other aspects of our lives of which we are not even aware. Here, the size and scope of the group against which we compare ourselves in our risk assessment becomes an important variant. If we compare the inherent risks of our lifestyles only with those few who live in our house, then it may be possible to list, rate and assess most of the aspects where everyone has increased or decreased risks, and to stratify all people according to whether they have low, medium or high risks in relation to their health. ⁵¹ If, however, the group against which we compare our own risks is a larger population, perhaps even an entire nation, then it becomes immediately apparent that we are unable even to begin stratifying people into different risk groups with respect to health in any empirically justified way.

Even if counterfactually, a risk stratification that included all risks was possible, this would quickly show that singling out the risks attributed to lifestyle-related disease constitutes a problematic bias. As mentioned above, there are so many risks in our daily lives that highlighting certain known behavioural risks related to health alone cannot be justified. The stratification of populations according to a particular list of lifestyle-related conditions is inevitably arbitrary as it excludes some areas where people's individual risk could be very different from the areas upon which the stratification focuses. Our neighbour with a heart condition may be high-risk in this respect, but low-risk in others; and although we eat healthily, exercise and do not smoke, we may eventually suffer from a condition that will ultimately cost the health-care system much more than the neighbour's heart problem.

We acknowledge that there might be hard cases – small groups – on both sides of the spectrum where overall health behaviour is so extreme that these individuals indeed could be seen to fall into a different category from the rest of the population that displays a fairly heterogeneous mix of ‘positive’ and ‘negative’ risks related to health. These would, for example, be those who have freely decided to live an extremely simple, regular life devoted to the improvement of mind, body and spirit without any of the usual recreational risk behaviour, and far removed from the pressures of modern life, such as certain groups of nuns or monks. On the other end of the spectrum, there might be those who deliberately, repeatedly and over a long period of time, against constant advice and recommendation, and to the direct and obvious detriment of their own condition, behave in a way that harms their health and furthers their illness significantly, often ending in their death (e.g. severe non-compliance in patients with kidney or liver failure). In both cases, an argument could be made that a line can in fact be drawn when compared with the rest of the population because these individuals knowingly, consistently and continuously engage in practices with an empirically highly unusual, extreme and rare risk profile. Cast in the language of our understanding of solidarity, in such extreme cases similarity in a relevant respect with a vast majority of the population could no longer be recognized and solidaristic behaviour towards these insular groups could not be expected. ⁵² However, apart from such hard cases and when the whole population is the focus of discussion, as it is in most modern public health-care systems, any system of risk stratification is generally limited by what we know, and what we can know, about risks; and the very characteristic of risks is that they are often not foreseeable. While private insurance systems operate with risk stratification models, there is much to be said in favour of public systems limiting stratification to a minimum. ⁵³ Finally, risk is always also a result of what we look at; if we look at the characteristics and practices that we share in common with others, we find ourselves in the same risk group as they are; if we look at the practices that differ between us, the delineation of the risk group shifts. In contrast to those who make us believe that risk is a ‘hard’ category in all respects, it can be seen as a concept created to allow the quantification of circumstances and situations that do not really lend themselves to quantification.

Suggestions for health policy: a solidarity-based approach

As we have argued above, the reference to lifestyle, and the idea of personal responsibility for health, if used to claim a violation of solidarity and to limit somebody's accessible resources, constitute a largely arbitrary choice among a myriad of risks that affect health, including many social and environmental factors that are beyond people's control. Therefore in the context of publicly funded health-care systems, population stratification should not only refrain from taking into consideration individual responsibility for health problems and conditions, but it should avoid risk stratification altogether. Because publicly funded health-care systems comprise large numbers of people, ‘lifestyle-related’ risks to health are likely to be balanced by other risks that cannot be rendered visible or determinable by looking at lifestyle (‘choices’). Thus, expressed in the language of solidarity as developed here and with the exception of some hard cases, there is no basis on which to justify the fact that some people or groups are considered not to be similar in a relevant sense (with regards to risks) to others in the health-care system.

A solidarity-based approach would instead mandate that access to health care should be granted mainly on the basis of need because need is a category in which sameness in the relevant sense can empirically be determined far more easily than in the lifestyle risk stratification. The crucial question, then, is how need is to be quantified and measured, a question that goes well beyond the scope of this article. The existing model used in the UK, which combines expected clinical benefit with an application of universal rules that are unfavourable to individual exceptions, is not perfect. However, it is arguably one of the least unfair systems possible in the light of limited resources. The publicly funded health-care systems, which are accessible to all residents irrespective of their personal situations and circumstances, are not only desirable from a solidarity-based point of view, but they also perform well on health outcomes. ⁵⁴

A solidarity-based approach would strive to maintain a system such as the British NHS without significant increases in tax contributions. However, in order to be able to do so in view of the rising financial pressures in the publicly funded system, some priority-setting (first) and rationing (second) will be inevitable. Firstly, further elimination of waste and lowering of administrative, non-frontline costs are obvious and uncontroversial measures. Secondly, transparent and accountable priority-setting based on a set of clear, publicly debated criteria, currently in various stages of development and/or practical implementation in many health-care systems, needs to receive more political support so that it can be established more rapidly. Thirdly, from a solidarity-based perspective, there is reason to work towards facilitating a higher appreciation of the importance of preventive and public-health measures, both when allocating resources and in public perception and understanding. In a health-care system with limited resources, public-health and the medical sector are effectively in a situation of competition – with the latter having far more public attention and powerful backing than the former. A stronger emphasis on similarities and shared commitments in a solidarity-based approach to allocating health-care resources would therefore involve a focus on public health due to its inherent reference to collective risk and benefit sharing. Stories about single individuals saved by miraculous high-tech medicine are typically more interesting to the media; nevertheless, positive narratives about preventive medicine and public health can and should be told as well. Moreover, recently a new emphasis on collaboration and community has emerged from open science and participatory health initiatives where people, i.e patients, students, and even online gamers work together to solve problems and develop tools and technologies to improve health. ^55,56 The wide attention that such initiatives have received provides a positive example for how better health outcomes could be achieved by communal efforts and crowd-sourcing the quest for new solutions. Fourthly, in order to contain costs, the ever-increasing trend towards individualization of publicly funded health care, with off-label requests and ‘tailored’ medical intervention for ailments that used to be regarded as non-medical or even as social conditions, has to be re-examined. This is of course a demanding task, but one that is vital to tackle if we want to preserve our publicly funded health-care systems in the future. It will not be possible to offer all health care that is available or desired by patients and doctors in a solidarity-based health-care system. Therefore based on our understanding of solidarity, limiting the scope of individual choice and hindering exceptions from allocation rules are warranted measures.

Declarations: No conflicts of interest declared. This article draws on work commissioned by the Nuffield Council on Bioethics and jointly funded by the Nuffield Foundation and the Arts and Humanities Research Council. Dr Buyx is supported by a grant from Deutsche Forschungsgemeinschaft.