Here is an second version of the paper that David Morris and I are writing.
Values Based Practice, Social Policy and the Service User identity
‘Values Based Practice’ (VBP) might be the name of any approach that paid due and serious attention to the role of values alongside facts in good healthcare. But it has also become the name of a particular approach to working with diverse values in healthcare pioneered by the psychiatrist and philosopher KWM (Bill) Fulford. In this paper, we will take it to mean the latter.
Although drawing on a substantial philosophically framework, VBP is, itself in one key respect, theoretically minimalist. That is, aside from some framework values, the violation of which would undermine the very possibility of VBP, the work of managing diverse values is not determined or dictated by antecedent principles. Its ‘principles’ are more pointers or reminders. Nor is it even driven by the goal or telos of a right outcome but is instead guided by the idea of following a good process. The task of managing a legitimate diversity of values is left to a process of discussion by those who have a stake in the outcome, a discussion the shape of which is left deliberately open-ended. Whilst there are some pointers to guide the debate, there are few – though not no – ground rules.
But whilst it is plausible that the application of VBP to clinical decisions with particular identified patients or health service users, and a particular team of health professionals provided by the contingent circumstances of care, can be theoretically minimalist (though whether it can be as minimalist as it is taken by Fulford to be is open to question [see Thornton 2011]), its application to health and social policy cannot escape some substantive antecedent commitments.
A key question concerns the identity of service users in the context of social policy. By contrast with the paradigmatic case of clinical decision making, this identity cannot be taken for granted. But ‘not taking it for granted’ means, in this case, that it cannot be settled prior to some judgements about relevant values, judgements thus prior to and outside the application of VBP. We will use a vignette – the case of Mrs E – to illustrate the possibility that the proper answer to the question ‘Who is the user of a service or policy?’ may be, not an individual or even agglomeration of individuals, but a social network. Neglect of this through assuming that service users are individuals risks neglect of social capital.
We will also caution against conceiving of the service user identity in the policy case on the model of that of paradigmatic clinical decision making. At the risk of slipping into jargon: the service user identity should not be thought of essentially, or exclusively. It is an identity relative to context. But determining who the service user is in any given context depends on a piece of values-based reasoning. So if VBP proper presupposes an answer to this question before it can start such reasoning is not part of VBP but rather something more fundamental.
Values Based Practice and clinical decision making
Values Based Practice stands in opposition to an implicit or inchoate traditional view of the relation of facts and values in medical care. On this traditional view, medical diagnosis is a matter of getting the facts right independent of any values. Values come into play in guiding – alongside good evidence based medicine – treatment and management. And when they do, they are codified in a set of principles, a proper understanding of which form a kind of moral calculus.
VBP rejects both of these aspects of the traditional view. Values are implicated in diagnosis as well as treatment. And any moral principles to which we might appeal are insufficient to guide good practice. The arguments for the first element need not concern us in any detail here [see Thornton 2007: 62-73; Thornton 2011]. But they have to do with the idea that illness in general is an evaluative notion. Illness is bad for the sufferer and that notion of badness is essentially evaluative. (Thus VBP is committed to the failure of programmes to reduce the notion of illness to value-free notions such as a failure of biological or proper function. But, first, there is grave doubt as to whether the pattern of explanation in which functions are deployed really is value-free [See Thornton 2000]. Second, even the foremost contemporary philosopher of psychiatry who defends the use of failure of function to capture the idea of disorder explicitly combines that with the value, harm, to analyse illness and disease [Wakefield 1992, 1999].)
The second step to articulate Values Based Practice is the rejection of both the sufficiency and the fundamental importance of moral principles in guiding medical practice. The first follows from a feature which is present even in Tom Beauchamp and James Childress’s attempt to relate medical ethical reasoning to a set of principles [Beauchamp and Childress 2001].
Principles of Biomedical sets out four general principles to guide medical ethical reasoning: autonomy, beneficence, non maleficence and justice. As is familiar, these four do not derive from any single higher principle and can conflict. Beauchamp and Childress describe two methods for dealing with such conflicts: specification and balancing. Specification is a way of deriving more concrete guidance from the fairly abstract higher level principles. It ‘is a process of reducing the indeterminateness of abstract norms and providing them with action guiding content. For example, without further specification, do no harm is an all-too-bare starting point for thinking through problems, such as assisted suicide and euthanasia. It will not adequately guide action when norms conflict.’ [Beauchamp and Childress 2001: 16]
Balancing and complements specification thus: ‘Specification entails a substantive refinement of the range and scope of norms, whereas balancing consists of deliberation and judgement about the relative weights or strengths of norms. Balancing is especially important for reaching judgements in individual cases.’ [Beauchamp and Childress 2001: 18]
Neither balancing nor specification simply unpacks the content of the principles themselves. Nor, like deductive nomological explanation in the physical sciences, do they combine general principles with particular circumstances in a deductive argument. Both require an extra element of judgement. Thus even according to the Four Principles approach, the four principles are not sufficient for medical ethical judgement.
Values Based Practice goes further than this, however. Although it concedes that there can be sufficient agreement about some values that they can codified to provide the basis for ethical codes and guidelines and other agreed elements for any thinking about healthcare, these remain just a small part of the values that have to be taken account of in guiding medical practice which include individual preferences, desires, wishes, firmly held faith and convictions and so forth.
By stressing this multiplicity, it stresses the standing possibility of disagreements and clashes in thinking about particular circumstances. But if values are ubiquitous and if, agreed framework aside, disagreement is both to be expected and legitimate, how can the process of assessing the competing ‘pulls’ of different values be managed? To repeat, within the framework, guidance by principles is of limited use. There are three key suggestions.
First, rather than aiming to arrive at the right outcome in a conflict, VBP aims instead at there being a good process. That is, it rejects the idea that a particular accommodation of values might be the right result in any particular context in favour of a method. Correctness, if it applies at all, applies to the method followed. Fulford summarises this idea thus: ‘conflicts of values are resolved primarily, not by reference to a rule prescribing a ‘right’ outcome, but by processes designed to support a balance of legitimately different perspectives (the ‘multi-perspective’ principle)’ [Fulford 2004: 206].
Second, ‘communication skills have a substantive rather than (as in quasi-legal ethics) a merely executive role in clinical decision-making (the ‘how it’s done’ principle)’ [ibid: 206]. This again reflects the idea that correctness attaches not to an endpoint but to a process. Thus there is equal stress on methods of raising awareness of values by attention to language use (the ‘values-blindness’ principle) and for improving knowledge of other people’s values (the ‘values-myopia’ principle).
Fulford characterises VBP using ten principles or pointers.
Ten Principles of Values Based Practice
1: All decisions stand on two feet, on values as well as on facts, including decisions about diagnosis (the ‘two feet’ principle)
2: We tend to notice values only when they are diverse or conflicting and hence are likely to be problematic (the ‘squeaky wheel’ principle)
3: Scientific progress, in opening up choices, is increasingly bringing the full diversity of human values into play in all areas of healthcare (the ‘science driven’ principle)
4: VBP’s ‘first call’ for information is the perspective of the patient or patient group concerned in a given decision (the ‘patient-perspective’ principle)
5: In VBP, conflicts of values are resolved primarily, not by reference to a rule prescribing a ‘right’ outcome, but by processes designed to support a balance of legitimately different perspectives (the ‘multi-perspective’ principle)
6: Careful attention to language use in a given context is one of a range of powerful methods for raising awareness of values (the ‘values-blindness’ principle)
7: A rich resource of both empirical and philosophical methods is available for improving our knowledge of other people’s values (the ‘values-myopia’ principle)
8: Ethical Reasoning is employed in VBP primarily to explore differences of values, not, as in quasi-legal bioethics, to determine ‘what is right’ (the ‘space of values’ principle)
9: In VBP, communication skills have a substantive rather than (as in quasi-legal ethics) a merely executive role in clinical decision-making (the ‘how it’s done’ principle)
10: VBP, although involving a partnership with ethicists and lawyers (equivalent to the partnership with scientists and statisticians in EBM), puts decision-making back where it belongs, with users and providers at the clinical coal-face (the ‘who decides’ principle)
Despite these pointers, however, Values Based Practice is theoretically minimalist. That is not to say that it is not based on theoretical considerations. It draws heavily on Fulford’s analysis of the evaluative nature of diagnosis which in turn is based in the ordinary language analysis pioneered in Oxford in the 1950s and 1960s, especially Hare’s early work on the logical properties of value terms [Fulford 1989; Hare 1952]. But that theoretical articulation is used to defend a theoretically-light approach to forming value judgements.
By contrast with what Fulford calls ‘quasi-legal medical ethics’, in which value judgements are derived from a rich body of principles or the equivalent of case law, VBP leaves them to a process of exploration, self- and other-knowledge and discussion. It accepts ‘dissensus’ as a likely outcome. It is a liberal approach to the values in question. Aside from the framework values, all and any values have equal merit prior to the process of local debate.
But that theoretically minimalism is made possible in part by taking one thing for granted. As the fourth pointer says: VBP’s ‘first call’ for information is the perspective of the patient or patient group concerned in a given decision (the ‘patient-perspective’ principle). That principle militates against a slippage of discussion into a paternalist imposition of values on, or against, the patient or service user. But it assumes that the question of who is the patient or service user can be decided independently of the application of VBP to value judgements. This is a reasonable assumption in the paradigmatic case of clinical decision making where the identities of patients, clinicians and other members of a healthcare team are fixed by local contingencies. But things are more complicated in the case of the identity of ‘users’ of a policy.
Values based practice, social policy and service user identity: the underlying logic
In clinical decision making, Values Based Practice can start from the particular patient and his or her clinical team. Thus the question of who is the patient or service user can, to a first approximation, be taken for granted prior to the application of VBP. But that is not true to anything like the same extent in cases to which VBP may be extended and applied: the investigation and evaluation of social policies concerning healthcare.
In the case of the application of Values Based Practice to a particular patient and their pre-existing clinical team, the question ‘Who is the service user?’ is not, typically, a pressing problem. But what of the case of the assessment of existing or the development of new health and social policies?
The problem in a nutshell is this. Any practical health or social care policy has a number of effects or consequences, both positive and negative. A policy designed to reach members of a community unwilling to report their mental health problems, for example, might have such people as its service users. But if it addressed them by addressing families, then healthy family members might also be count as service users. And if the aim were to improve social inclusion within the community, other members of the community might count as service users. Given that VBP prioritises the ‘patient or patient group concerned in a given decision (the ‘patient-perspective’ principle)’ this raises the question: who should count as the patient or service user in such complex cases?
This is not to say that such a question is unanswerable. But answering it will involve assessing the competing claims of different potential groups for priority. Since that is an evaluative (as well as a factual) matter it might have been thought that it could be settled by an application of Values Based Practice. But it turns out that VBP presupposes a prior answer to it. In other words, the question of service user identity is an evaluative matter which, whilst vital, cannot be addressed by VBP as it is applied to clinical decision making.
Although we have outlined the problem as one of principle (VBP both requires but cannot assume an answer to the question of service user identity before its application), there are also practical problems which follow from assumptions which are typically made about the likely identity of service users. One problem is that the potential therapeutic value of social networks in particular go unnoticed and thus their worth is neglected. We will illustrate this through the following detailed vignette (though name s and details have been changed to ensure anonymity).
The case of Mrs E
Consider the case of Mrs E, a woman of 96, living, as she has since 1920, in an un-modernised Edwardian house in inner London. Though she has no significant cognitive impairment or difficulties with communication, Mrs E has breast cancer, diabetes, arthritis and hypertension (resulting episodically in serious nose-bleeds and fainting) for which she requires some eight forms of medication daily. She lives alone having been long widowed and has a daughter of 60 who lives 250 miles away and whose scope for maintaining contact is hampered also by her own health problems. Mrs E’s mobility and hence her self-care is severely limited by her arthritis. She can feed herself but cannot prepare food. She can dress herself but with such difficulty that she usually remains in her night clothes throughout the day. With its original coal fired heating and plumbing system, her only access to hot water in the summer months, when the boiler is off, is by way of a kettle, so she cannot bath or shower for much of the year. Mrs E is frail. Life is a daily struggle to retain independence. That she has retained it in these circumstances is due to the specific and extensive commitment of a neighbour who has provided daily assistance with personal care for some years – and who has de facto become Mrs E’s carer – a number of other neighbours who provide informal support and help with specific tasks as required and two established friends, each of whom visit monthly.
The members of this network are crucial to Mrs E. They have used their own agency to optimise her resilience, scope for independence and hence agency in two key ways. Firstly, in having been responsible for securing Attendance Allowance, ‘Telecare’ and adaptations to the home environment (including installation of the stair lift by which means Mrs E is able to get to bed) they have articulated and secured otherwise unmet practical needs and financial entitlements. Secondly, they have established a form of social engagement based on shared identity. One of the two established friends is, as Mrs E herself has always been, a keen gardener and so shared gardening narratives have become a critical aspect in shaping over time a form of support which is reciprocally informative, appreciative and, therefore, sustainable. In addition, through the multiple dimensions of shared experience associated with their engagement with Mrs E and each other, this network has generated new and diverse forms of knowledge and accordingly, collective identity. In addition to being the group of individuals who support Mrs E, they might be considered with Mrs E to constitute a form of neighbourhood capital both with continuing potential for mutual support based on the needs of Mrs E herself, and, in the context of what may be thought of as the ‘core economy’ [Cahn 19**] of the locality, with emergent potential for the wellbeing of other members of the community and therefore, the community itself.
In relation to Mrs E though, while this network has therefore been instrumental in enabling her independence, it has reached the limits of its capacity to meet a level of personal need that deepens a little each week and has sought advice from the local Adult Social Care Department. Until this point, the only health or social care service which Mrs E had received was that provided, as required, by her GP and a Community Nurse working from the Practice. The Social Worker who visits Mrs E is experienced and specialises in older people. She sees her role as one of assessing the individual needs of Mrs E, as a putative service user, against a criterion framework for service entitlement. In part because of the effectiveness with which she has utilised the network interventions to date, Mrs E fails to meet any of the criteria for a service to be provided. Moreover, the social worker’s professional modus operandi provides no space for an account either of the impact of the decision on the network or of its contribution to date and in the future. Fidelity to an individualised or personalised definition of who the service user is has eliminated the need to understand the problem systemically as one in which a number of people are, in effect, joined to the challenge of meeting individual need. In excluding any evaluation of the inter-dependency impact that these relationships, for all their complexity, might represent, we see an approach to seeking to protect individual independence which contains the means for its own failure, with all that this entails for the costly and inevitable demise of Mrs E’s health and wellbeing.
To privilege the identity of an individual community member as service user as the key organising principle in the design of services that incorporate a values perspective may be necessary to reframing the way in which power is seen and used in the relationship between professional service provider and recipient. It is certainly the sine qua non for a service seeking to be consonant with the precepts of contemporary policy on personalisation. As the example has shown, however, it can also reinforce a conceptualisation of this relationship as bilateral: one in which some nominal redistribution of power takes place between two players in a clinical engagement rather than one that draws on the rich capital that a systemic approach can engender if it brings to bear instead the ‘real life’ analysis of social possibility revealed in the multiple identities of people who may – or may not use services.
The case of Mrs E reveals one danger in a too hasty assumption about the identity of the users of a health or social policy. A typical focus on individuals neglects the importance, and value, of social networks which might properly be thought of as users of services. Such networks, however, need not themselves be mere agglomerations of individuals but may be structured and supported by social relations.
Such a case contrasts with the paradigmatic view of VBP applied in a clinical setting in which the question of who is the service user seems, at least, more clear cut. That is not true, we have suggested, of the policy case. But it might be assumed that identifying service users in the latter case can be modelled on the former through a slippage between the idea of identifying service users to the idea of a service user identity. (Think of the difference between using the word ‘identity’ to mean having an answer to the question ‘Who is the tallest person in the room?’ and using it to mean the self-conception that someone might have. The tallest person may not think of themselves as the tallest person, their height may be of no importance to them.) So it might be thought that there is a shortcut to picking out who the service users are of a mental health policy, eg., from the community of service users, those who take on that as their identity. There are, however, reasons to be wary of the very idea of a service user identity which we will now outline.
The contingent perils of a service user identity
We will outline four reasons to be cautious of the idea that a community of service users can be picked out through a service user identity.
First, the very idea of a service user identity, based on shared experience could, ironically, limit relationships with other disadvantaged communities whose own complementary claims could be an resource. To privilege the collective voice of common interest over other perspectives and communities may encourage such communities to turn inwards.
Second, it circumscribes the context within which individual capabilities can be understood and appreciated. Behind the case for equity of opportunity is an implicit argument for the recognition of capability. The right to participate is driven by an assertion of personal capability to participate. A categorical approach to defining community may place limits on the way in which its members and their diverse capabilities, both individual and shared, will be expressed and perceived externally, thereby limiting the effect of that aspect of empowerment concerned with the proper recognition of what people can do. This links to the third problem.
Third, in practice, the right to be equally valued irrespective of difference is likely to be realised only in a social context in which the capabilities of people with disability are recognised and the potential for defining people principally in terms of disability are eradicated. The positive perception of disability necessary to actions that support empowerment are associated with the idea that the nature and value of an individual’s activity should be seen as a function of their multiple identity. A service response to the needs of people with disability which incorporates their role as citizens with contributory assets alongside that of service users with needs, is conditional on the notion of multiple identity being understood by public agencies. This understanding may not be best served by retaining, as the basis for service organisation, a model of community characterised by a singular definition of membership especially in a service environment governed by a contemporary concern with community health and civic engagement.
Fourth, the potential for individual recovery, whether defined at the level of the individual or at a population level, is usually calibrated against an assessment of the response of other people. For example, how successful a person with a mental illness might be in holding down a job in an open plan office is likely to depend on an assessment made of the anticipated or actual response of office colleagues (‘the work community’), while policy on employment for people with mental health problems is likely to take this into account, deploying study data (or not!) in which examples of such individual experience is aggregated as an evidence base for the existence, and therefore policy relevance, of stigma and discrimination as factors to be considered in service model development. It is important therefore to give these external social accounts some descriptive weighting in order to advance social recovery prospects and, to the extent that such discourse is conducted within the conceptual framework of ‘the community’ (which is the case for policy and practice in public mental health as well as that for services), it is important to provide for an understanding of community perspectives associated with ‘the other’ that has some equivalence to those associated with that of illness experience.
Service user centrality and theoretical minimalism
As we outlined in the first section, when Values-Based Practice is applied to individual clinical cases, it is theoretically minimalist. With the parties to a clinical decisions identified, VBP imposes a background of shared values – necessary for it to function at all – but then leaves the management of rational and legitimate disagreement about values to a discussion in which highlighting the values involved, including hidden and implicit values and communication skills play a central role. By adopting a form of theoretical minimalism, VBP can avoid having to settle contentious global debates about competing moral theories and approaches. Providing that there is sufficient agreement about framework values, VBP can leave the discussion of competing values to a local context. The particular participants can examine their values relevant for the particular decisions concerned.
Such discussion is not, however, entirely free. A safeguard against paternalism is the ‘patient-perspective’ principle: the ‘first call’ for information is the perspective of the patient. But, as we have argued, the combination of this principle and theoretical minimalism cannot be carried over in to the context of health and social policy.
Identifying the claims of groups to count as service users, to count as having more say than others, cannot be taken for granted. If not, it must itself be subject to a value-laden debate and judgement. If VBP is identified with a minimalism, then this issue cannot be settled by VBP alone. If it is not so identified, then the application of VBP to policy debate will call for a more structured approach to weighing the opinions and values of those who may be affected. The cost of the application is giving up minimalism. Some values will have more values than others.
There is, however, a benefit from this cost. We will illustrate this by refrring back to two earlier sections. First, in the discussion of Mrs E, we highlighted the danger of assuming that the proper answer to the question ‘Who is the service user?’ picks out an individual or even an agglomeration of individuals. In some cases, at least, a better answer may be that a social network or community is the service user (where one distinction between an agglomeration and network is that individuals can enter or leave the latter without changing its identity).
Second, in the penultimate section, we drew attention to some contingent but typical dangers from approaching the question of the identity of service users in the policy case with the same simple mindedness which seems to work for the paradigmatic clinical case. If one thinks of service users as those picked out by having a service user identity – as a particular community fixed prior to potential policy developments – then this will encourage the isolation and permanence of that community. But if instead, identifying the service user community or communities depends on the policy under scrutiny and its particular consequences, these dangers can be diminished.
To count as a service user – relative to a particular policy – will depend on fitting a role, or characteristic. This follows from the idea that so counting will flow from an argument which will have to be couched in general terms such as why having such and such a role puts one in a position to have an expertise in so and so. Thus a sufferer from a mental illness may also be a tax paying citizen, a family member, a carer, a member of a particular ethnic grouping etc. Thus the individual can properly count as a member of any number of differing communities relevant to a policy initiative and thus merit a number of different voices.
Thus service user identity may include social networks as well as individuals and can be shifting and multiple rather than fixed and single. Neither of these corrections to the paradigmatic case is inconsistent with the main thrust of VBP: with the claim that values play a key role in debate about health and social care in a way that reists codification in ethical principles. But since both kinds of debate about identity are grounded in reasoning concerning the, sometimes competing, values in play, they are inconsistent with the assumption that service user identity can be assumed before VBP is put into play.
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