Law & Ethics in Public Health Unit 1

Empowerment in healthcare policy making: three domains of substantive controversy

Luca ChiapperinoA,B,D and Per-Anders TenglandC

AEuropean Institute of Oncology, via Adamello 16, 20139 Milan, Italy. BItalian Institute of Technology, via Adamello 16, 20139 Milan, Italy. CFaculty of Health and Society, Jan Waldenströms gata 25, Malmö University, 205 06 Malmö, Sweden. DCorresponding author. Email: [email protected]

Abstract. This paper distinguishes between the uses of empowerment across different contexts in healthcare policy and health promotion, providing a model for the ethical and political scrutiny of those uses. We argue that the controversies currently engendered by empowerment are better understood by means of a historical distinction between two concepts of empowerment, namely, what we call the radical empowerment approach and the new wave of empowerment. Building on this distinction, we present a research agenda for ethicists and policy makers, highlighting three domains of controversy raised by the new wave of empowerment, namely: (1) the relationship between empowerment and paternalistic interferences on the part of professionals; (2) the evaluative commitment of empowerment strategies to the achievement of health-related goals; and (3) the problems arising from the emphasis on responsibility for health in recent uses of empowerment. Finally, we encourage the explicit theorisation of these moral controversies as a necessary step for the development and implementation of ethically legitimate empowerment processes.

Received 8 May 2015, accepted 19 October 2015, published online 10 December 2015

Introduction

The concept of empowerment has clearly been extremely influential in discourses of healthcare reforms and health promotion in Australia, Europe and the US.1–5 With its origins in liberatory pedagogy, social psychology, mental health and health promotion,6–10 empowerment has often been recruited in the development and implementation of public health measures and healthcare policy. References to it are an integral part of broader discourses in social movements of patient activism and advocacy,11

as well as democratic participation and social agency in the governance of technoscientific innovation.12,13 From the commitments to empowerment upheld by policy and reform documents4 to the practical development of strategies for the management and prevention of diseases,14,15 the concept of empowerment is by now considered a ‘cornerstone of health promotion practice and philosophy’.5 Already a cursory review of research on and practice of empowerment confirms that this idea has now become influential at both the individual and public health levels. The empowerment approach plays a major role in the development of care strategies in several contexts, such as cancer care,16–19 end-of-life care20, health community action,21 mental health,22 diabetes and cardiovascular disease management,23–25

and more recently eHealth,26 as well as personalised medicine.27–29

Initiatives to empower patients have been shown to lead to better

health outcomes and disease management in a variety of chronic conditions,30 and are deemed particularly suitable to contexts in health care where the agency and leadership of the people involved are key to the success of the intervention.14

Correspondingly, the popularity of empowerment has also fostered several ethical and political controversies, especially in its latest applications.3,29,31 Scholars and analysts agree that the lack of definitional clarity in different uses of the concept indicates that empowerment, in its current uses, is indeed a noble but ‘double- edged ideal’.32 Although some scholars point to its merits in ‘spearheading ashift in[healthcare] roles’thatfinallyplacespatients’ values and expertise at the centre of medicine,11 others dismiss the concept as a mere buzz word for policy makers. According to the latter view, the use of the concept of empowerment is only rhetoric that conceals a devolution of social responsibility for health from institutions to the citizenry and that could be to the detriment of those lacking the capacity, skills and opportunities to take up such responsibility.3,29,33

Starting from this recognition, the aim of the present paper is to distinguish between two particular uses of the concept of empowerment across different contexts in health care and health promotion, in order to provide a model for the ethical and political scrutiny of those uses. We argue that many of the

Journal compilation � Australian Health Promotion Association 2015 CSIRO Publishing www.publish.csiro.au/journals/hpja

Health Promotion Journal of Australia, 2015, 26, 210–215 http://dx.doi.org/10.1071/HE15035

controversies currently surrounding empowerment may be due to the different substantive and normative commitments at the basis of twohistorically distinct concepts, namely what we call radical empowerment and the new wave of empowerment thinking in healthcare policy making. Building on this distinction, we present a research agenda for ethicists and policy makers, highlighting three domains of controversy raised by recent uses of the approach, and hence encouraging their explicit theorisation as a necessary step for the development and implementation of ethically sustainable empowerment initiatives.

Empowerment and its radical interpretation

As has been argued extensively elsewhere,34–37 the concept of empowerment has been used very differently in health promotion literature and practice since its original formulation in Freirean liberation pedagogy.6 Freire’s emancipatory theory is animated by the desire to address oppressive social structures as a fundamental part of education and health education. For this reason, Freirean health promotion adopts a model grounded on dialogical problem posing, the aim of which is to produce social change through mutual deliberation and critical thinking about the shared ‘situationality’ (i.e. the sociopolitical conditions) of individuals.6 Building on Freire’s views, scholars refer to empowerment in two main ways. The first is as the goal of an activity, namely the development of the emancipatory ability, originally proposed in Freire’s work, to gain mastery over a state of affairs, such as one’s health and well being. Specifically, this ability is often described as a power to control one’s life or health,38 which liberates the subject from exercises of power over him- or herself.2,39 In the minds of early proponents of empowerment, ‘power over’ represents a coercive or ideological power that keeps groups marginalised, whereas ‘power to’ is rather a capacity (provided by the combination of individual abilities and political opportunities) to influence change on the sociopolitical determinants of one’s health.34,35 Second, the idea of empowerment also encompasses the process aimed at reaching its goals;34,35 that is, the concept is often used as a synonym for the dialogical process with roots in Freire, which is instrumental in achieving the goal of mastering (having the power to control) one’s health, as well as transforming the social configurations that influence (or have power over) the individual, through advocacy and community engagement.

This emphasis on the social domains of freedom with regard to one’s health affirms the importance of promoting individual autonomy while at the same time recognising the role of the state (through public health agencies and professionals) as a supporter or facilitator in making the individual seize mastery over his or her own health. Starting from this recognition, it is not difficult to see the importance that the notion of control plays in the definition of empowerment in its early academic theorisation and some of its current understandings.2,7,8,34,35,38,40 On the one hand, being in a state of empowerment is further specified as control in terms of the

individual’s ‘ability (or opportunity) to control her [quality of] life’35

and health. On the other hand, empowerment also refers to control over the process that is likely to bring about a state of empowerment, and entails an understanding of professionals as facilitators in empowering processes.

According to this reading, empowerment is a radical approach to the transformation of social configurations6 that aims to liberate individuals from societal power structures and professional expertise by fostering their capacity to control their health.34,35 This is why the approach is often considered a third way in public health ethics, avoiding the pitfalls of focusing only on individual liberty (as freedom from interference in health matters) and state intervention for the benefit of both individual and community health.36,41

Health educators in the empowerment field reject the dichotomy between self-determination with regard to health and the importance of collective action to improve people’s health conditions. Rather, they entertain the idea that freedom or autonomy with regard to health concerns a power that we have over ourselves, which is manifested as both an ability for autonomous decision making and a range of opportunities (e.g. infrastructures, education, institutional commitments, community engagement) to transform the sociopolitical context (e.g. the environment, housing, income) in which we live and which affects our health.36

The new wave of empowerment in healthcare policy making

In the past decade the focus of empowerment approaches within health promotion and policy making appears to have moved from the radical emancipatory objectives described above towards an emphasis on individual choice and responsibility for health.40,42

Many examples of this new wave of empowerment can be identified in Europe12,43 and the US.28,29,33 Among them, the case of the British National Health Service (NHS) paradigmatically displays the inauguration of a new interpretation of the concept that has made the approach an appealing, bipartisan ideology in recent healthcare policy making.4,44

The first clear-cut examples of this new wave are the proposals for reforming the NHS put forward by New Labour governments.45–49

New Labour regards the shift towards empowerment-based healthcare services as part of a broader intent to establish an ‘entrepreneurial spirit in institutions, and a consumerist orientation in public life’.50 Accordingly, empowerment is no longer understood as a transformation of oppressive power structures that affect health. Rather, the concept appears to encompass the capacity to renegotiate the relationship between the state and the citizenry by encouraging proactive civic agency in health promotion, service planning and delivery. For this reason, New Labour’s use of empowerment emphasises control as instrumental in the diffusion of individual responsibilities for health:

Empowerment in healthcare policy making Health Promotion Journal of Australia 211

Patients empowered in this way are more likely to take greater responsibility for their own health, and to dedicate their own time, effort and energy to solving their health problems. . .We must therefore continue to empower patients with greater choice, better information, and more control and influence.49

It is important to stress here that the major difference between ‘control’ and ‘responsibility’ as the main goal of empowerment lies in a shift from the emphasis on social liberation, characterising the approach at its outset,6 to a culture of private voluntarism in health care that reduces the role and importance of state supervision with regard to health-related decision making. The distinctive feature of radical empowerment is, in fact, that ‘control’ entails a specific view of what kind of individual health goals ought to be achieved through the approach. As exemplified by the Ottawa Charter for Health Promotion,51 a 20th-century milestone in the field of public health, empowerment was originally regarded as establishing public health policies for the promotion of individual mastery and ownership of health. Rather than being instrumental in solving health problems predetermined by the system, empowerment was regarded as promoting a liberation of the individual in health care and not as a way to diffuse citizens’obligations or liability with regard to their health.49

However, the numerous responsibilities purported by New Labour’s use of empowerment do not pertain only to individual citizens using healthcare services. Rather, they also establish a precise role and accountability for professionals. Although sometimes presented in the documents as part of a ‘partnership’ between lay citizens and healthcare professionals,49 healthcare staff are expected to play ‘a stronger role in clinical leadership and management throughout the NHS’.49 The quality of the services, these policy makers argue, ‘is improved by empowered patients and empowered professionals’ alike:49

If clinicians are to be held to account for the quality outcomes of the care that they deliver, then they can reasonably expect that they will have the powers to affect those outcomes. This means they must be empowered to set the direction for the services they deliver, to make decisions on resources, and to make decisions on people. [emphasis added]

Therefore, according to New Labour, changing towards an empowerment-based system requires not only that greater freedom and responsibility are devolved to citizens, but also that professional leadership49 ensuresthatindividualcitizensandpatients meet the health-related expectations of the system of tomorrow. As appears evident from the quote above, the empowerment of healthcare professionals proposed by New Labour outlines a relationship between the roles of stakeholders in the system that does not lend itself to the shift in authority and legitimacy for which empowerment was evoked in its radical interpretation.

This kind of reasoning about empowerment is even more forthright in the use of the term in the Conservatives’ (Tories) proposals for

reforming the British NHS.52–56 These documents are much more explicit in determining the shift to empowerment in the politics of the NHS as a devolution of active responsibility to citizens and professionals:

First, patients will be at the heart of everything we do. So they will have more choice and control, helped by easy access to the information they need about the best [general practitioners] and hospitals.. . .Second, there will be a relentless focus on clinical outcomes. Success will be measured, not through bureaucratic process targets, but against results that really matter to patients – such as improving cancer and stroke survival rates. Third, we will empower health professionals. Doctors and nurses must . . . be able to use their professional judgement about what is right for patients.52

Through the endorsement of empowerment strategies, Tories and Liberal Democrats consolidate the interpretation of empowerment first introduced by New Labour. Equity and Excellence,52 the strategy for the NHS proposed by Tories and Liberal Democrats, further installs the newly established tenets of empowerment encountered in the New Labour interpretation. In addition, it is not difficult to see how these policies allocate a ‘shared responsibility’52 for using healthcare services effectively and improving citizens’ involvement in decision making concerning care pathways and the management of the healthcare system. Furthermore, empowerment represents a political strategy to address social changes towards increased individualism and the need to rethink the role of institutions in the governance of health care.50 Thus, the main aim of empowerment here is to ‘encourage wide responsibility across society to improve everyone’s health and wellbeing, and tackle the wider factors that influence it’.56

In summary, recent uses of empowerment appear to leverage quite different normative commitments from those characterising Freire’s theories,6 epitomised by the radical interpretation of the approach. The new wave of empowerment does not entail an extension of the degree of public involvement in health care, grounded on the renegotiation of sources of legitimacy in health-related decision making. On the contrary, the recent emphasis on citizens’ responsibilityandprofessional leadershipsupportstheinterpretation that no challenge to the distribution of power in the clinical encounter is actually demanded by these documents, thus raising several compelling questions as to whether the concept of empowerment has become only a powerful rhetoric, which places several controversial responsibilities on all the actors of the healthcare system.

Three substantive domains of controversy in the new wave of empowerment

Far from being only a shift in language from notions such as ‘control’, ‘education’ and ‘liberation’ towards ‘clinical outcomes’, ‘professional leadership’ and ‘responsibility’, the new wave of

212 Health Promotion Journal of Australia L. Chiapperino and P.-A. Tengland

empowerment constitutes a distinct vision of the substantive foundations of the approach, namely the values, goals, meanings and norms regulating agency in health care.

This recognition has already prompted a great deal of criticism in the bioethical and sociological literature.32,42 In contrast with the emancipatory pedagogy of radical empowerment, which often finds its justification in the promotion of personal autonomy and the promotion of social justice, many critical appraisals have questioned the values and commitments upheld by the new wave.3,29,31 This final section of the paper aims to identify the domains of substantive controversy raised by the new wave to foster the examination and normative scrutiny required in order to assess its ethical legitimacy. Regardless of whether the radical approach can be consideredan‘ethicalpanacea’ inhealthpromotion,57 wearguethat recent uses of empowerment can be found problematic in three main respects: (1) the role of paternalistic interferences; (2) the charge of ‘healthism’; and (3) the pitfalls of shifting responsibility for health.

The role of paternalistic interferences in the new wave of empowerment Empowering citizens with regard to their health is supposedly a useful strategy to renegotiate the relationship between health experts and lay citizens. In the words of proponents of the radical approach, the shift towards empowerment is supposed to emancipate patients from paternalistic interferences of professionals58,59 by providing them with the knowledge, self- awareness and skills,7,8 as well as the opportunities,36,37 necessary to exercise control over health.

However, the emphasis on the leadership of healthcare personnel, in order to ensure quality of care outcomes,49,52 creates a tension with the alleged antipaternalistic features of the approach by pointing to two contrasting understandings of the role of professionals in empowerment initiatives.29,31,57,60 On the one hand, the new wave retains the emphasis on the control characteristic of the radical approach as a renegotiation of power relationships between professionals and healthcare clients. Its declared intent is that of moving away from paternalistic professionalism and the nanny state56 to a role of patients as equal decision makers and experts in health care.61 Conversely, these policy documents advocate for empowerment processes that are professional centred and demand leadership on the part of those traditionally regarded as healthcare experts.49,56 By doing so, they may actually reinforce the idea that the professional, even when committed to the client’s empowerment, is ‘in the driving seat’.57 The risk entailed in the antipaternalistic language of the new wave of empowerment is therefore that of masking persistent paternalistic values and power relationships with an enfranchising rhetoric of patient centredness. This recognition raises the following question: to what extent does the new wave of empowerment fall prey to paternalism?

The new wave of empowerment and the charge of ‘healthism’ A second problem with the new wave of empowerment lies in the risk that it produces obligations on the part of citizens to conform to social expectations and interests regarding their health.3,57,62 As shown above, some of these documents put a strong emphasis on ameliorating the general health of the population through empowerment initiatives that aim to foster citizens’ responsibilities for their own health.52,56 Such a diffusion of responsibility for health within the new wave is based on the idea that health is the main good to be promoted through empowerment (processes), thus reducing the broader political aims of the approach to achieving better levels of health in the population.62

One obvious problem with this understanding of empowerment is that it could be seen as a political effort devoted to make individuals conform to the perceived standards of health of those in power.3,62 Roughly put, the objective of the new wave would be that of empowering individuals to freely choose healthier behaviours that are established by the healthcare system.63 Thus, attention should be paid to the inflated value assigned to health in the new wave of empowerment. Requiring citizens to take more responsibility for their health can hardly be an empowering step for citizens if optimal health is presented as a standard to which all members of a community are expected to conform. Rather than aiming for increased participation in healthcare decisions, the new wave suggests a system’s rationale characterised by a culture of ‘healthism’;21,64 that is, the idea that empowerment ‘ensur[es] that specific kinds of health-related choices are made’.3 Thus, our second question is, what then is the relationship between health and other important values (e.g. happiness, quality of life, equality, social justice, freedom) in the new wave of empowerment?

The new wave of empowerment and the pitfalls of shifting responsibility for health Finally, another ethical concern raised by the new wave lies in its emphasis on responsibility for health. Many of these policies, in fact, recommend that citizens be held responsible for their health and their use of healthcare services and resources. Such a shift in individual responsibility for health is presented as a core tenet of the empowering intent of putting individuals ‘at the heart’45,46,52,56

of the healthcare system and raises questions about the interpretation of responsibility that are of the utmost importance for the ethical appraisal of the new wave.

This critique highlights the negative aspects of ‘responsibilisation’ for health by stressing the potential unwanted consequences of assuming that people can be held morally responsible for their health.21,65–67 From this perspective, the main problem with the new wave is not that it invokes responsibility for the promotion of a particular standard for health across the population (see above); rather, it is the assumption that agents are sufficiently free and skilled so as to be in charge of their health-related choices. Extensive evidence has been produced regarding the gradient

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between health and socioeconomic status.68,69 Roughly put, this evidence shows that the lower the socioeconomic status of an individual, the higher the likelihood that he or she will experience poorer health outcomes. This is due primarily to different ‘structural drivers’ of health, such as ‘economic arrangements, distribution of power, gender equity, policy frameworks and the values of society’,69 and implies that devolving responsibility for health to citizens could be a disempowering move for disadvantaged groups in our society. Simply put, attribution of individual responsibility for health, which does not account for the impact of social structures on the capacity of the individual to take up such a responsibility, may be detrimental to the worse-off and hence increase health inequalities in the general population. This leads us to the third question: can the unfair inflation of citizens’ responsibility for health through the new wave of empowerment be avoided?

Conclusions

The analysis presented herein shows that the new wave of empowerment thinking in healthcare policy making requires a thorough reconfiguration of the substantive and normative tenets originally attached to the concept. We presented two historically distinct interpretations of the approach that, while exhibiting different rationales for empowerment in health care, construct competing normative foundations of the approach. In light of this recognition, recent uses of the concept cannot be merely understood as reiterating the benefits of radical empowerment. Rather, the new wave should best be regarded as creating new political ways of organising health care and redistributing the onus of health across society. This shift, as we have argued, can be deemed ethically suspicious in three main respects: (1) the role of paternalistic interferences; (2) the charge of ‘healthism’; and (3) the pitfalls of shifting responsibility for health.

The main question that emerges from the present analysis is whether the empowerment approach (in the interpretation of the new wave presented here) remains an ethically sound discourse in healthcare policy making,3 and whether the controversies we identified also cast a shadow over its potential uses in health promotion planning and implementation. As we have seen, the new wave of empowerment (i.e. fostering citizens’ power to manage their own health) assumes very different moral contours from those characteristic of the original Freirean approach. To conclude: can the new wave handle the moral challenges highlighted in this paper?

Acknowledgements

The authors thank Katarina Graah-Hagelbäck for her useful comments and suggestions on this manuscript.

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