Is patient involvement possible when decisions involve scarce resources? A qualitative study of decision-making in primary care

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Social Science & Medicine 59 (2004) 93–102

Is patient involvement possible when decisions involve scarce resources? A qualitative study of decision-making in primary care Ian Rees Jonesa,*, Lee Berneya, Moira Kellya, Len Doyalb, Chris Griffithsc, Gene Federc, Sheila Hillierb, Gillian Rowlandsd, Sarah Curtise a

b

Faculty of Health and Social Care Sciences, St George’s Hospital Medical School, Cranmer Terrace, London, SW17 0RE, UK Human Sciences Barts and the London, Queen Mary’s School of Medicine and Dentistry, University of London, Mile End, London, UK c Department General Practice and Primary Care, Barts and the London, Queen Mary’s School of Medicine and Dentistry, University of London, Mile End, London, UK d Department of Community Health Sciences, St George’s Hospital Medical School, Cranmer Terrace, London, SW17 0RE, UK e Department of Geography, Queen Mary, University of London, Mile End Road E1 4NS, UK

Abstract Greater patient involvement has become a key goal of health care provision. This study explored the way in which general practitioners (GPs) in the UK manage the dual responsibilities of treating individual patients and making the most equitable use of National Health Service (NHS) resources in the context of the policy of greater patient involvement in decision-making. We undertook a qualitative study incorporating a series of interviews and focus groups with a sample of 24 GPs. We analysed GP accounts of decision-making by relating these to substantive ethical principles and the key procedural principle of explicitness in decision-making. GPs saw patient involvement in positive terms but for some GPs involvement served an instrumental purpose, for instance improving patient ‘compliance’. GPs identified strongly with the role of patient advocate but experienced role tensions particularly with respect to wider responsibilities for budgets, populations, and society in general. GPs had an implicit understanding of the key ethical principle of explicitness and of other substantive ethical principles but there was incongruence between these and their interpretation in practice. Limited availability of GP time played an important role in this theory/practice gap. GPs engaged in implicit categorisation of patients, legitimating this process by reference to the diversity and complexity of general practice. If patient involvement in health care decision-making is to be increased, then questions of scarcity of resources, including time, will need to be taken into account. If strategies for greater patient involvement are to be pursued then this will have significant implications for funding primary care, particularly in terms of addressing the demands made on consultation time. Good ethics and good professional practice cost money and must be budgeted for. More explicit decision-making in primary care will need to be accompanied by greater explicitness at the national level about roles and responsibilities. Increased patient involvement has consequences for GP training and ways of addressing rationing dilemmas will need to be an important part of this training. Further research is needed to understand micro-decision-making, in particular the spaces in which processes of implicit categorisation lead to distorted communication between doctor and patient. r 2003 Elsevier Ltd. All rights reserved. Keywords: Patient involvement; Rationing; Decision-making; Primary care; United Kingdom

*Corresponding author. Tel.: +44-20-8725-5492; fax: +44-20-8725-0146. E-mail address: [email protected] (I.R. Jones). 0277-9536/$ - see front matter r 2003 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2003.10.007

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Introduction Patient involvement in medical decision-making is being promoted in a range of health care systems as an ideal form of the doctor–patient relationship (Jadad, Rizo, & Enkin, 2003). However, the conceptualisation of patient involvement is not clear. Ambiguities have been highlighted with respect to the concept of patientcentredness (Mead & Bower, 2000) while differences have been identified between methods of patient-centred communication and shared decision-making (Elwyn, Edwards, Gwyn, & Grol, 1999; Wensing, Elwyn, Edwards, Vingerhoets, & Grol, 2002). Furthermore, research involving primary care physicians in the USA suggests that the complexity of decision-making is an important factor in determining the extent to which patients are involved (Braddock, Edwards, Hasenberg, Laidley, & Levinson, 1999). In the UK, patient involvement has become a key feature of recent changes to the organisation and delivery of health care (Department of Health, 1999, 2000). The Health and Social Care Act 2002 (The Stationery Office, 2001) made public involvement a duty of Health Authorities and Trusts. In addition, the National Health Services Reform and Health Care Professions Act 2002 (The Stationery Office, 2002) made provision for setting up The Commission for Patient and Public Involvement in Health to promote involvement of members of the public in health care decision-making. Patient involvement in the NHS includes an emphasis on patients’ duties to use services responsibly (Department of Health, 2001). In parallel with these developments, general practitioners (GPs) have been drawn into decisions about allocation of resources. Primary Care Trusts (PCTs) now commission a range of health care services from community care to hospital treatment. The new GP contract (accepted by GPs on 20th June 2003) appears to recognise that GP time is a finite resource (BMA, 2003). How resources are allocated in the NHS however, remains the subject of considerable debate (BMA, 2001). Doctors are required to treat individual patients to the best of their ability; simultaneously, they are expected to fulfil a duty to society to make the most equitable use of resources overall. The Royal College of Physicians recommends that doctors be involved in setting NHS priorities along with other stakeholders and that the lack of affordability of some medicines that are currently available should be discussed openly within the context of the doctor–patient consultation (Royal College of Physicians, 2000). Within primary care, tensions arise from the dual responsibility of providing for the needs of individual patients and the needs of society, perhaps most clearly manifested in the conflict for GPs between the role of commissioning care for populations, and the

role of patient advocate (Royal College of General Practitioners, 1999). Participation in health care decision-making has not been adequately evaluated (Charles & DeMaio, 1993) but it is useful to distinguish between public and private participation. Private participation refers to the involvement of individuals in their own care and treatment while public participation refers to involvement in decision-making processes concerning service planning and delivery, service evaluations and consultations over future service provision. It refers to a democratisation of decision-making with the public assuming greater responsibility for decisions regarding the wider aspects of health and social policy (Anderson, Florin, Gillam, & Mountford, 2002). There is limited research on the way in which funding constraints influence the decisions of doctors, or about the criteria used when allocating scarce resources to individual patients. While there is a considerable literature on prioritisation of health care resources at a macro level (Klein, Day, & Remayne, 1996; New, 1997), there has been relatively little empirical research at the level of the doctor–patient relationship in primary care. Consequently, we are largely ignorant about communication between GPs and patients about resource allocation (Light & Hughes, 2001; Ayres, 1996). Furthermore, although there has been considerable debate about the relative value and efficacy of explicit and implicit decision-making, there is as yet no consensus on whether and how patients should be involved in health care rationing (Doyal, 1995, 1997; Coast, 1997). Recent research suggests that opinion is divided on the need to be explicit and that there is some dissonance between health workers and the public. The former perceive rationing as inevitable while the latter focus on the lack of political will to increase funding and the ‘waste’ associated with unnecessary bureaucracy in the NHS (Coast et al., 2002). In a study of the views of UK citizens, a majority wanted to know about rationing of their health care and to be given an explanation for the decisions that had been reached (Coast, 2001). The researchers concluded that policies promoting increased explicitness with the public about the rationing of health care would be welcomed but added that greater explicitness goes hand in hand with a greater potential for conflict between patient and practitioner. Our study explored the way in which GPs manage the dual responsibility of treating individual patients and making equitable use of NHS resources in the context of the push for greater patient involvement in decisionmaking (including the actual and potential role of the patient in the decision-making process). The fieldwork for the study was undertaken during a period of considerable change in UK primary care, such as new funding arrangements introduced with primary care

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groups and primary care trusts (PCGs/PCTs), clinical governance and demand management.

Methods Between September 2000 and November 2001 we undertook a series of interviews and workshop focus groups with a sample of 24 GPs. Sample We selected GPs purposively from the lists of two greater London health authority areas (A and B). Area A is relatively deprived and Area B is relatively affluent. Three selection criteria were used: deprivation, workload (based on practice list size and number of wholetime equivalent GPs), and gender. Our sampling strategy was based on previous research indicating that medical decision-making is influenced by characteristics of the patients, characteristics of the doctor and features of the practice setting (McKinlay, Potter, & Feldman, 1996). Equivalent information on local general practitioners was not available in the two areas. In Area A the sample was selected from data on deprivation and workload available from a local general practice database. In Area B, the sample was selected through available data on GP workload, and ward-based data on deprivation. We recruited our GPs from 23 different practices. Thirteen were from Area A, and 11 from Area B. There were equal numbers of male and female GPs. The mean age was 44 and the number of years as a GP ranged from 3 to 41, with a mean of 14. Thirteen of the practices had previously been fund holding and there were two singlehanded GPs. We asked GPs to participate in two in-depth interviews, and two focus groups. All 24 GPs participated in the first in-depth interview, 17 GPs participated in the focus groups and 22 GPs participated in the second indepth interview. The research was conducted after ethical approval was received from two Local Research Ethics Committees. Written consent was obtained and the data was made anonymous to maintain confidentiality. The first interview asked GPs to reflect on: *

*

*

*

the main resource allocation issues which arise in day-to-day practice, their views on involving patients in the decisionmaking process, the influence of current organisational factors on decisions, and their views on equity in decision-making.

To gather more detailed information on decisionmaking, GPs were also asked to provide examples from their own experiences. In most cases, GPs felt unable to

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remember a specific case but could describe what they considered to be a typical situation. These were often a composite of individual consultations. Some GPs however, were able to give specific examples of dilemmas they had experienced with patients. These examples were, in the main, presented as stories or narratives. When presented and analysed in this form the data had two important uses. First, they provided an opportunity to develop typical case vignettes from GP accounts. These were used in the GP focus groups to structure discussions concerning decision-making. Second, most narratives contained evaluative statements and this allowed our analysis to relate GP criteria for decisionmaking in the abstract to practical examples of decisionmaking. We also conducted interviews with a convenience sample of 18 patients (registered with different GP practices to those participating in the study) to generate a set of anonymised vignettes that illustrated patient aspirations for involvement and patient experiences of rationing. These were used to frame discussions in the second focus groups with GPs. The issues addressed in the focus groups included: * * * * * * *

determining the extremity of need, criteria used in priority setting, choosing between areas of treatment, ‘trade-offs’ between different groups of illnesses, unmet need, non-clinical criteria used in decision-making articulate and demanding patients.

Finally, in the second in-depth interview GPs were asked to reflect further on their approach to patient involvement, factors that might influence patient involvement and the influence of patient characteristics on patient involvement. Each stage of data collection informed the subsequent stage. Analytic framework The theoretical framework used was based on Doyal’s (1998) work on explicitness in resource allocation. This contends that if patients are to participate in decisionmaking then explicitness is a necessary prerequisite for involvement. This means explicitness in the patient encounter but also (and most importantly) explicitness in the mind of the GP. That is to say, that GPs have to be clear both to themselves and the patient about the criteria they draw upon when engaging with a patient in decision-making. Furthermore, patients should be given equal access to care on the basis of fair waiting and need. Care should be free at the point of access. The substantive principles for ethical decision-making are: (i) Health care needs should be met in proportion to their distribution within the population.

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(ii) Within areas of treatment, resources should be prioritised on the basis of extremity of need. (iii) Those in morally similar need should have an equal chance of access to health care. (iv) Scarce resources should not be provided for ineffective health care. (v) Lifestyle should not determine access to health care. The procedural part to Doyal’s framework states that: (i) The public should advise but not determine policy concerning the allocation of health care. (ii) Health care rationing should be explicit. These procedural and substantive ethical principles were used to frame the analysis of GP accounts of decision-making. They were also used to guide the selection of vignettes for the focus group discussions. The interviews and focus groups were transcribed, coded and data were analysed using the constant comparative method. The data were based on second order accounts from GPs of their experiences and feelings. This raises a number of questions about how the vocalising of particular motives, actions, beliefs and intentions could be interpreted (Deutscher, 1966; Mills, 1940). This ‘vocalising’ problem was addressed by means of analysis being validated by different members of the team. Preliminary coding was undertaken by MK and LB using the software package NUDIST. These codes and themes were then presented at regular meetings of the research group where disagreements about coding and interpretation were discussed and resolved. This process was based on previous research in general practice that has used a team-based approach to the analysis of qualitative data (Barry, Britten, Barber, Bradley, & Stevenson, 1999).

Findings General practitioner’s perceptions of patient involvement GPs saw their role as one of professional advisor; there to provide information to patients. For example, one GP talked about discussing options and the various outcomes that such options may lead to. I suppose if you give people options and they make a decision based on the options that you present them with, you could argue I suppose that they are all shared. You could also argue that they are all oneway because the doctor holds the reins on what the options are. It depends which way you look at it, really, and how PC [politically correct] you are

when you look at it, as well (interview, GP, male, 37, Area A). Involvement was viewed by some GPs as a useful tool that assisted them in their attempts to modify patient behaviour and improve patient concordance or, in some cases, compliance with treatment regimes. It was felt that where a treatment decision had been arrived at by doctor and patient together, there was a greater likelihood of a successful outcome to the treatment episode. Involvement was thus a means to an end. For example, one GP related involvement to what she termed better patient compliance. I think if people are involved in decision-making I think compliance is better with treatments, doctor– patient relationship can be better’’ (interview, GP, female, 34, Area B). In the main, GPs emphasised their role as patient advocate but the pressure of other roles was also apparent as in the case of this GP from area A. I think our role as advocate is quite strong in the sense of giving the information over and I guess we do have a role in not giving misinformation or overstating the case which I suppose is possible, that we might do that (focus group, GP, female, 37, Area A). GPs were aware of the possibility of maintaining silence as a way of avoiding dilemmas and potential conflicts with patients. Indeed, understating the case, in this instance not raising the option of an expensive drug, was recognised as a dilemma. But the other things like Zyban and whatever that you get all middle class patients coming along asking you about it. Because there are cost implications in that do you offer it to patients that haven’t heard of it?y And that’s the costing thing, you think well this person hasn’t heard of it and therefore shall I just keep my mouth shut and not mention it? (Interview, GP, female, 43 area A). In some areas, the role of advocate was clear. In other circumstances however, the gatekeeping role of the GP was more strongly emphasised. Although GPs had an idealised sense of engaging in shared decision-making, they were also aware of the extent to which their role was sometimes paternalistic, involving patient surveillance, patient education and reform. For example, this male GP contrasted the role of advocate with a policing role. There is a conflict bit with (being) the patients’ advocate and also their policemen then, you know it’s a conflict which has always been there (interview, GP, male, 37, Area A).

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Decision-making was referred to as a game of ‘ping pong’, with GPs trying to convince patients of the rightness of the GP’s position. GPs spoke of needing to ‘educate’ new or demanding patients into the relationship. This manifested itself generally in terms of seeing the patient as having the ‘problem’ and, as in the case of the following GP, negotiations leading to changes on the side of the patient. What I’m saying is that I don’t believe in confrontation at the consultation. It doesn’t do any good yourself and it doesn’t do any good to your patient as well. So the first patient you mentioned, I will definitely obviously try to melt him down a little bit. I will say ‘we will negotiate, we’ll discuss and negotiate’, and then I will bring him down to the level. And then we can make the joint decision (focus group, GP, female, 43, Area A). It is useful to distinguish between involvement in the sense of patients being informed of the background information required for rational decision-making and involvement in the sense of patients having responsibility for the shape of final therapeutic or rationing choices. Our data suggest that GPs had a strong sense of their role as advisor but although patient involvement was generally considered to be a good thing, it was mainly seen in instrumental terms. Furthermore, scarce resources could affect the extent to which GPs were willing to be open with patients. Practice populations and practice resources There were differences between practice populations in the two study areas and two contrasting themes arose: ‘diversity’ and ‘stability’. Whereas Area A GPs tended to give a lot of detail about their practice populations, Area B GPs provided much briefer descriptions. Descriptions of practice populations in Area A were of ethnically diverse, and frequently changing patient populations with a range of non-medical needs. In Area B, descriptions indicated relatively stable populations, predominantly affluent, with some pockets of deprivation. GPs felt that the local context (demography and levels of service provision in primary and secondary care) had profound consequences both for patient involvement and managing scarce resources. For example, in Area A, GPs put the pressures to control spending on ‘demanding patients’ in context. It’s all very well for the PCG to tell us that (GPs should cut prescribing costs) but you try telling a mother who has got 3 children on income support: ‘so I am not going to give you Calpol you can go and buy it from the counter’. She is going to turn around and say ‘I don’t pay for my prescriptions so why

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should I? I am entitled to it.’ (interview, GP, male, 50, Area A). In contrast, in Area B, demanding patients were more likely to be seen in a different light. Here they were referred to as ‘well-educated’, ‘assertive’ and ‘knowledgeable’ about current treatments. Not infrequently, because my patients are better educated and so on, I’ll get them, and they’ll say quite frankly, ‘This is not as good as the other stuff that I was getting, why did you give me that one? (Interview, GP, male, 54, Area B). Area differences were also apparent in the extent to which GPs felt comfortable with discussing insurance and private health care with patients. GPs spoke of making assumptions about their patients’ resources and opting not to inform them of certain treatment possibilities on the grounds that they assumed the patient could not afford to pay for such treatments. Sometimes I think it probably is a bit judgmental but sometimes I’ll think oh they haven’t got insurance, I won’t ask them because I won’t want to embarrass them or something or make them feel that they’re getting second rate care. I don’t know why I don’t say it (interview, GP, female, 34, Area B). In the relatively affluent sample area however, raising the issue of private medicine was seen as less problematic. Some GPs spoke of patients being unaware that they actually had private cover and that in encouraging patients who had the option to go private to do so was in some way taking pressure of NHS resources. I would just be completely open about that and suggest to people if they can afford to go privately to an osteopath then they should (interview, GP, female, 39, Area A). For GPs, decisions that involved scarcity ranged from prescribing of drugs, referrals to secondary care and access to practice resources. The data indicate that the demographic make-up of practice populations interacting with levels of service provision at a local level may have an impact on the form of patient involvement in GP-patient decisions. Ethics, and implicit/explicit understandings Among GPs there was general agreement with the ethical principle of being explicit with patients. However, there was ambiguity, anxiety and disagreement when GPs discussed the practice of ‘saying no’ to patients, particularly where this involved rationing decisions. Here there was a strong sense of inconsistency of practice and a search for solutions that would legitimise what were often seen as messy, disorderly,

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unpredictable decisions that were deeply contingent on the ‘situatedness’ of each new case. To justify such decisions, GPs talked about using guidelines, about the importance of intuition and about not being able to tie down decision-making to an ‘exact science’. GPs talked about ‘bending the rules’, of taking a ‘pragmatic approach’ of, at times, ‘giving in’ to a ‘demanding’ or ‘stroppy’ patient at the ‘end of the day’ or ‘on a Friday night’. Agreement, in general, on explicitness as an ethical principle therefore appeared to be accompanied by a general sense of anxiety over variable application in practice. This ‘theory/practice’ gap was sometimes bridged by the search for legitimisation or the ‘dressing up’ of decisions. GPs in this study sometimes appeared unable to rationalise the decision-making process for themselves let alone patients. For example, one GP found it difficult to be clear to herself about the reason for prescribing or not prescribing a drug. Well I was trying to sort of separate out the strands of what was making it difficult for me to prescribe. I felt very uncomfortable about prescribing it and I couldn’t decide in my own heart whether it was the cost or the danger of the prescription which was taking the upper hand (interview, GP, female, 37 area A). GPs were aware of the extent to which the quality of the relationships between GPs and patients develop over time and how they influence the form decision-making takes. GPs talked about having strong personal feelings toward some patients, even of having favourite patients. In focus group discussions for example, GPs referred to treating certain patients in a special way. GP1: ybut I don’t do it for everyone, just to make this patient happy GP2: Make them feel better, yes GP1: It makes you feel better because ‘my doctor is doing something special for me’ [focus group, GPs, (1 female, 43 area A, 2 male 37 area A)]. There was recognition of a dynamic to the consultation that was difficult to reconcile with consistent ethical practice. For example, GPs spoke of the drive to have a happy patient and a satisfactory consultation. GPs related this to their own feelings of self worth and a confirmation of their role. Signalling to the patient that the doctor was providing a scarce resource was an important part of cementing the doctor–patient relationship and confirming the dominant power relationship. For example, a GP in area B talked about the meanings associated with highlighting the expense of a drug to a patient. I mean if I was to give Zoviraxy I might say, ‘look, this is a very expensive drug you know. I’m giving it

to you because you’re worth it’ (focus group, GP, female >40, area B). GP decision-making appeared sometimes to involve artifice in terms of what was discussed in the consultation and how that was then translated by the GP into a description of the patient for referral purposes. The subtlety involved in wording of the referral letter was considered to be a very important aspect of the GP’s role as in the case of this GP. I think we do have quite a power to be involved in the rationing in our referrals and howy urgent we make them andy whether we say, ‘this nice 46 year old gentlemany’ (focus group, GP, male 50, area A). The use of delay and deflection to discipline patients was clearly an important part of the GPs strategy for managing decisions and managing patients. In this respect, GPs engaged in typification and implicit categorisation of patients, referring to patients as ‘difficult to wean’, patients with ‘an established routine’, patients as ‘performers’, ‘good’ and ‘bad’ patients. This implicit categorisation involved combining social problems and narratives about patients with clinical data. For example, here is one GP talking about a pregnant patient: Can I do aerobics? Should I have marmalade on my toast because I feel sick? All those questions. No mum locally, probably got no sister, husband is at work until eight o’clock earning the money. The midwives did not want to see them. They made it absolutely clear they did not want to see them. So they kept coming back to the doctor and my partner and I got a little fed up with having had an appointment with ‘I felt sick this morning, what should I do’, because we didn’t see this as our role (interview, GP, male, 46, Area B). In this sense, ethical principles were vulnerable to the vagaries of individual doctor–patient relationships and encounters and the nature of the patient’s condition as perceived by the GP. This raised a problem of ethical inconsistency that GPs justified in different ways. An important factor in this justification was to treat every new patient as a ‘blank slate’, to give everyone a chance, though even here GPs would refer to the warning signals accompanying new patients who had thick medical records. They exhaust you. They come and take your time and exhaust you before the real genuine case comes where you actually need more concentrationy (focus group GP, male, 56, Area A). GPs expressed a sense of the irrationality of much of their decision-making and noted the inconsistency of attempts by them or attempts to encourage them to be

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rational in one particular area when decisions in other areas were not based on any discernibly rational criteria. Concerns were raised about national decisions to fund particular treatments (e.g. nicotine replacement therapy) which some GPs opposed as irrational and politically driven. GPs expressed frustration with contentious policy decisions such as these to the extent that some seemed to be reluctant to engage with rational decisionmaking at a local level and to withdraw into the patient advocate role. I mean, my personal view since this was announced is that look if the government is not going to worry about all these sorts of things, why do I fight on a day to day basis, try to ration, try to argue with my patients, you can have this, you can’t have it. I might as well give up and say well ok you have the free hand, whatever you want you have it done. It may come to my mind (interview, female, 43, area A). Time as a scarce resource Across both study areas, group and single practices and younger and older GPs, time was seen as one of the scarcest resources in general practice and it was felt that there was no easy solution to the problem. Some GPs spoke about the way that time pressure varied throughout the day and week and how that influenced their level of involvement with each patient. GPs in our sample appeared to be aware that the perception of them as busy might influence the way in which patients present. They referred to the problem of dealing with ‘passive’ patients. GPs spoke about rationing their time. This was seen as something easier to do in contrast to rationing drugs, treatments or referrals. I think we ration our time more than anything else and, yeh, I think that’s probably where it’s easier to be unequal (focus group, GP, male, 42, area A). GPs referred to using time as a form of withdrawal, control and punishment. In contrast, patients who appeared aware of the time pressures on doctors or who fitted a ‘well behaved’ profile were referred to as ‘favourites’. GP1: ‘‘I think most of these patients, you’ve established some kind of routine with them, almost. They know exactly, they’re well behaved if you like. They know exactly what is acceptable and what will not stress you so exactly. So they will say, ‘oh you’re busy doctor’, after the little chit-chat, whatever.’’ GP2: ‘‘They’re performers’’ GP1: ‘‘Yes. The patients that I like are the ones who will actually not spend ten minutes with me!’’ [Focus

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group, GPs, (1, female , 39 area A; 2, male 42, area A). GPs were aware that their behaviour in this respect did not conform to the abstract notion of treating morally similar patients equally but seemed to be more tolerant of this inconsistency if it was manifested in terms of time rather than the prescribing of drugs or referrals to services. For example, while GPs maintained a strong sense of not withholding treatment on the basis of lifestyle or patient behaviour, they did feel able to withhold their time in such circumstances. GP1: ‘‘There can come a point where maybe your cycles of prescribing might elongate’’ General: (laughter)y Facilitator: ‘‘So there’s going to come a point, you’re saying when you would regard his non-compliance as increasingly justifying some strategy of withdrawal?’’ General: ‘‘No’’ GP2: ‘‘No. Not withdrawal of the drug. You’re talking about withdrawal of your time.’’ GP1: ‘‘I mean that I wouldn’t be seeing him every two or three days.’’ Facilitator: ‘‘So it would be your time rather than the drug?’’ General: Yeh. GP3: ‘‘But it wouldn’t be the treatment itself’’ [Focus group, GPs (1, female, 34, area A; 2 female, 39, area A; 3 male, 42, area A)]. The study suggests a paradox however, in that time was also sometimes seen as difficult to ration, something that cannot be turned on and off at will. This can be interpreted as the tension between working with clock time in conjunction with the temporality of the consultation (Frankenberg, 1991; Adam, 1995; McKie, Fennell, & Mildorf, 2002). There appeared to be some disagreement over how and when it was acceptable to close down time in the consultations, with some GPs seeing their colleague’s strategies as ‘brutal’. These GPs recognised that ‘difficult’ patients, as they were sometimes called, were seen as such because of a mismatch between the doctor’s agenda and the patient’s agenda. I would never be so brutal as what you say I, again I would use strategies which is, ‘obviously that’s important but I think we really need the time to talk about that’ [focus group, male, 42, area A].

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Discussion This study suggests that if patient involvement in health care decision-making is to be increased, then questions of scarcity will need to be taken into account. GPs saw patient involvement in positive terms but for some GPs, involvement served a more instrumental purpose and was used as a ‘tool’ that assisted them in managing or persuading patients. It remained the case, however, that most GPs tended to identify strongly with the role of patient advocate. However, they experienced role tensions particularly with respect to wider responsibilities for budgets, populations, and society in general. Local variations in populations and the availability of resources had an impact on the capacity of GPs and patients to engage in shared decision-making. The GPs in this study appeared to understand the key ethical principle of explicitness and the other substantive and procedural principles set out by Doyal (1998). They took these principles seriously and tried to work towards them. There were however, clear distinctions between professed allegiance to substantive ethical principles and the interpretation and implementation of these in practice. Availability of GP time played an important role in this theory/practice gap. Some researchers suggest that patients want to be involved in decision-making but little is known about the ways in which they can become more involved and even less is known about the benefits of their involvement (Guadagnoli & Ward, 1998). Other work has been undertaken on user perceptions of treatments that are rationed in the NHS (Joule, 1998) and this has identified a need for clarity on patients’ rights, for openness and honesty with patients and greater patient participation in decision-making. Recent research has shown that there are variations in the willingness of members of the public to be involved in decisions regarding health care. Litva et al. (2002) found varying levels of desire for involvement at different levels of the health care system. There was also a clear separation between informing and actually being responsible for decisions, with the public being keen to inform policy at higher levels but leaving responsibility to health professionals who were felt to have the relevant expertise. Certain competencies are seen by some as prerequisites to shared decision-making (Towle & Godolphin, 1999) while others have emphasised the need to build consensus in the medical encounter (Charles, Gafni, & Whelan, 1997). Research by McKinstry (2000) with patients attending surgery appointments found variations in patient desires for involvement. Although these variations appeared to be related to the type of presenting problem, the age, social class and smoking status of patients, patients appeared to prefer their own doctor’s style (whatever that might be). Where patients were allowed to express their ideas and concerns, this was related to higher levels

of patient satisfaction and ‘compliance’ with treatment. However, McKinstry suggests that patients want the final choice on treatment to be made by the doctors and that doctors have to make sophisticated analyses of individual need for involvement. When discussing their practice, the GPs in our study appeared to engage in implicit categorisation of patients, sanctioning this process through reference to the diversity and complexity of general practice. This categorisation appeared to be part of a process of combining social problems and clinical data that at times supported the re-asserting of medical dominance and at other times legitimated the blurring of ethical principles. This resonates with other research suggesting that the ‘voices of medicine’ maintain an asymmetrical relationship between doctors and patients (Mishler, 1984; Waitzkin, 1991; Scambler & Britten, 2001). If GPs are to take on roles that accompany devolved responsibilities, then the principles by which these responsibilities are organised need to be made explicit to doctors and patients. Equally, if GPs are to support increased patient involvement then this has resource consequences, particularly in terms of the length of the consultation. Strengths and limitations of our approach The methods employed allowed relationships with GP research participants to develop over time. This helped gain levels of trust and encouraged more in-depth discussion on a number of issues. As with all qualitative data it is important not to over-generalise. Although we attempted to address the vocalising problem using a team-based approach to analysis, the possibility of over interpreting second order accounts remains. However, data analysis and collection were undertaken concurrently and this allowed certain issues to be revisited at a later stage and for data collected in earlier interviews and focus groups to inform and frame data collection at later stages. Data collected in different settings and at different times were used to validate both analysis and interpretation. Implications for policy and further research Time appears to be one of the most scarce resources in primary care. If strategies for patient involvement are to be pursued then this will have significant implications for funding primary care, particularly in terms of addressing the demands made on consultation time. A maxim of contemporary moral philosophy is that ‘ought’ implies ‘can’. It is contradictory for the UK Government to insist that GPs improve their professional practice with patients in specific ways without finding the resources for these improvements to be practically possible. To do otherwise is to engage in

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empty moral abstraction, in this case about patient participation and involvement in professional decisionmaking. Without the potential for practical delivery, this can only serve to confuse and further to undermine the morale of both GPs and patients. Good ethics and good professional practice cost money and must be reflected in budgets. Further research is required into the specific increases in resources required to fulfil the aspirations of GPs (e.g. for more time to communicate more effectively) and patients (e.g. to understand more about decisions affecting their care). More explicit decisionmaking in primary care will need to be accompanied by greater explicitness at the national level about roles and responsibilities. Increased patient involvement has consequences for GP training and ways of addressing rationing dilemmas will need to be an important part of this training. Such training will require gaining further expertise in the ethico-legal foundations of the principles of equity on which the NHS is supposed to be based, along with appropriate communication skills to ensure where appropriate, patients can help to ensure that their health care needs are equitably met. The training should support equitable use of the resource of GP time and discourage its use as a reward or punishment. Such training should also be mindful of the different roles that GPs have and the possibility of improving patient involvement through working with other health care professionals such as nurse practitioners. This study suggests that, at present, within primary care there is a gap between abstract ethical principles and practice. Further research is needed to investigate how resources for general practice are rationed on a macro-level, specifically within PCTs where many of the same problems about transparent decision-making may continue to dominate the management of scarcity. At the same time research is needed to understand microdecision-making, in particular, the spaces in which processes of implicit categorisation lead to distorted communication between doctor and patient. Such research will need to incorporate direct observation and analysis of consultations.

Acknowledgements The study was funded by the Department of Health, Health in Partnership Programme and NHS R&D support funding. The latter was administered by the East London and Essex Network of Researchers (ELENoR). We would particularly like to thank the GPs and patients who participated in this research. We would also like to thank the following for their advice and support Kambiz Boomla, Nicky Britten, Colin Campbell, Yvonne Carter, Caroline Davies, Chris Derrett, John Eversley, Christine Farrell, Tim Foster,

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Jonathan Graffy, Ursula Hawgood, Clare Highton, Dione Hills, Clare Lister, Jeannette Naish, Pippa Oakshott, Sangeeta Patel, Anthony Riley, Emma Russell, Chris Sinclair, Alison Smith, Elizabeth Smith, Fiona Stevenson, Andrew Twist and Martin Underwood. All authors contributed to the design of the research. IRJ, MK, LB, LD, GF, and CG took part in focus group data collection. Interviews were conducted by LB and MK and piloted by LB, MK and IRJ. LB, MK and IRJ lead on analysis of the data. IRJ led the drafting of the paper with all other authors contributing to its revision.

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