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Primary Care – time to get ethical
Stephen J. Humphreys is the Practice Manager in a five-partner GPs’ surgery in Hertfordshire and in the second year of the NHS Clinical Governance Support Team’s national Practice Manager Development Programme.
Abstract: Developments in UK primary healthcare indicate a corresponding and urgent need to both debate and develop the ethical framework that must underpin general practice. The utilitarian approach is already relatively strong in the NHS, but, it is argued, a deontological approach is more appropriate to the traditions and sentiments of British general practice.
Keywords: autonomy, confidentiality, deontology, ethics, evidence-based medicine, general practice, utilitarianism
This paper attempts to update, due to a perceived increasing urgency, the message of a paper by Martin published some three years ago. Whilst time has moved on, the threat to Britain’s primary healthcare, especially in its general practice base, has now reached such a point that if intervention does not come soon it may be too late for Britain’s healthcare system.
Martin (2004) identified three developments that she then felt made it timely to reconsider which body of ethics theory had most relevance for primary care in the UK. She suggested that government policies on health care which favoured primary care led provision coupled with increased patient choice; the development of evidence-based medicine (EBM); and the introduction of the Human Rights Act 1998 were of such cumulative magnitude as to make “[a]n ethical framework devoted to the particular needs of primary health care practitioners…essential to the implementation of an effective modern primary health care system” (Martin, 2004: 326). Implicit in this of course is her belief that extant ethical frameworks are essentially inappropriate for the role of helping today’s primary care workers. Whilst at best there may be
“an assumption that primary health care ethics comprise a branch of the more developed body of secondary care ethics, and that experience of ethics in the secondary sector can be used to provide a resource for emerging primary care ethics” (Martin, 2004: 326)
in reality, the differences between primary and secondary healthcare are too marked for this. Primary care concentrates on the individual (e.g. allocating time to patients, providing contraceptive services, inappropriate use of services, lack of resources (Bowman and Spicer, 2007; Rogers, 1997)) and secondary care emphasises the disease.
I understand by “the more developed body of secondary care ethics” that Martin had in mind the fact that many hospitals have ethics committees and do therefore deliberate on matters having an ethical dimension. Such deliberation may be virtually unheard of in primary care – but the Hippocratic oath certainly demonstrates that medical ethics is not an inappropriate consideration for primary care practitioners. Thus, there are ethical frameworks suitable for providing a basis for primary care ethics, the problem is in stirring such frameworks into motion in the primary care setting.
Current events assailing primary care – not least the beginnings of its dismantling as big, even multinational, for-profit organisations begin encroaching on the territory (HSJ 22 March 2007; Pulse 22 March 2007; GP 23 March 2007; Doctor 27 March 2007) - make it timely to do as Martin suggests. It is time to develop an ethical debate in primary care about what the real values of primary care are, and how they should best be nurtured.
In this paper I thus intend to reinforce Martin’s view that primary care in the UK needs a richer, active, more vocal ethical discourse by suggesting that primary care must learn – and now - to stand against those who would take on its patients purely for profitable purposes.
To help start the debate I want to introduce a polemic by suggesting that utilitarianism, which the NHS administratively and strategically seems (almost inevitably) to favour, is probably the least suited of all ethical approaches to the fundamentals of primary care. Accordingly, I discuss this approach at some length in order to attempt to dismiss it from the general practitioner’s (GPs) ethical canon. (I then stand aside in anticipation of the answering salvo.)
Primary Health Care
Before we get there however, it is only proper that we do better justice to Martin’s arguments. Quite rightly, she firstly discusses the varied meanings of ‘primary health care’ in order to situate her arguments and whilst this is a laudable objective it is inherently problematic, and for some, ultimately, self-defeating. Heywood for example notes the term ‘primary care’ has several meanings such that “within one definition, general practice is a part of primary care and in another, primary care is a feature of general practice” (1998: 112). For the purposes of this paper, I summarize the term ‘primary health care’, as meaning the location for, and the activity of, the clinical management of self-presenting non-emergency conditions.
The significance of this definition is really two-fold: it attempts to position primary care in general practice whilst incorporating the fact that others (other GPs, practice and community nurses, counsellors, pharmacists and the like) may also encounter the patient. Thus, generally the primary care provider will be considered the general practitioner, supported by others. A secondary feature that I wish to emphasise is that the presenting patient may not have anything physically wrong with them. They may just be lonely and seeking advice from the only person they feel they can turn to for help. Quite what their position will be in a ‘marketized’ primary care setting, which seeks profit rather than quality of care, is unclear. They cannot be cured and will need to be seen regularly but in this delay others from getting timely appointments.
It is government policy to develop a primary care led NHS (DH 2005), and practice based commissioning (e.g. DH, 2004, 2005, 2006, 2007) is presumably the main tactical approach it is deploying in its attempts to arrange that the majority of health care should eventually be provided in a primary care setting. In fact, philosophically,
“These initiatives could be argued to be an illustration of a conceptual shift from a biomedical model of health to a biopsychosocial approach. Under the biomedical model the patient is seen as a diseased body part and treated accordingly, the patient’s social and personal circumstances are of limited importance in the treatment regime and the hospital becomes the most appropriate place for providing health care. The biopsychosocial approach attempts to see the patient as a complete individual with biological, psychological and social elements that all impact and influence the patient’s health” (Dowrick and Frith, 1999: 1).
Thus, the person presenting is to be treated as a patient even if not mentally or physically ill. The current GP contract for example requires that GPs manage any patients presenting who are ill “…or believes themselves to be ill…” (NHS Confederation/BMA, 2003: para. 2.8 (i)). Thus, the GP is tasked with responsibility of last resort and must be there for the care (be it physical, mental or even social) of everyone without exception – this very much suggests that ethically the GP has a covenantal rather than a merely contractual relationship with the patient.
It is this all encompassing and indeed life-long care for the person, which additionally recognises the familial, and socio-economic circumstances affecting the individual, that forms the special role that GPs have, as recognised by the award of a royal charter to the College of General Practitioners in 1972. The crux of general practice is that it exists to care for the person rather than any disease of the person. This creates the supreme ethical underpinning of the general practitioner’s role and given this we can now identify autonomy as the deontological principle, espoused most principally by Beachamp and Childress (2001) within their four principles approach to medical ethics, as the cornerstone of primary care medical ethics. It is the ethical duty of the GP to promote the patient’s autonomy – helping them get the best from what life has dealt them, and according to their individual views, beliefs, competences and so forth. This is not new. What it does do though, I believe, is to relegate the utilitarian ethic from primary care – and I shall return to this theme. Neither does it mean just doing what the patient wants; sometimes it may be necessary to urge a patient to do something in their own best interests even when they resist (e.g. treating some forms of mental illness or contagions).
Martin however points to the development of evidence-based medicine coupled with patients’ rights (as for example now more clearly supported by the enshrining of the European Declaration of Human Rights into UK law) as potentially conflicting with the ethical goal of autonomy.
She argues that the development of evidence-based medicine threatens to determine a patient’s treatment, with the GP’s knowledge of the patient counting for less than formerly. Given the weight of ‘evidence’, if the patient was to seek to exercise choice, and take a role in managing their own condition - as apparently encouraged by government policy (e.g. DH, 2001) - then the patient may need to confront the ‘evidence’ perhaps by seeking recourse to such legislation as the Human Rights Act 1998 to enforce her will over the GP and the evidence. This is likely to damage the doctor-patient relationship. All this for Martin indicates a need to develop an explicit, widespread, ethical approach in primary care to help primary care practitioners manage these predicted relationship difficulties.
However, evidence-based medicine is not so much new as a different way of assessing treatment protocol choices in arriving at a clinical decision. Instead of relying on the opinions of local consultants (experts) and perhaps on ‘case reports’, the GP is encouraged to look at evidence from trials – preferably randomised control trials, and not just one either but to seek a meta-analysis of results in order to identify not just a truth but the whole truth. Such information may suggest that drug X is best for condition Y. However, as everyone is different, and the fact that X is only available as a tablet and Mrs Z is very forgetful, it would be more appropriate to ensure she had drug Q which has to be injected weekly but at least then the district nurses will be able to ensure it is given. Z’s son P though may feel that drug F, which is much more expensive but is licensed for Y and is available as a transdermal patch, would be the best option. P, being a barrister, may threaten to take the GP to court to fight for Z’s ‘rights’. But this is neither a new scenario for the GP, nor need it be an ethical dilemma. Mrs Z can discuss the matter with her GP, and probably with P present too if she has no objections. The GP can also discuss the matter with his colleagues, his medical defence body, and even the local PCT (he need not give Mrs Z’s details in order to do any of this). The GP will have acted in the way that he feels is correct and in the best interests of his patient. If he prescribes according to his conscience and not in conjunction with a pricelist then this fact prevents an ethical problem arising even if there is a disagreement between the GP and P (Z’s son). Only if the GP avoided the disagreement by prescribing something he did not believe to be in his patient’s best interests would there be an ethical problem.
Equally, EBM could serve to establish a base position from which it could facilitate a discussion of care between the doctor and the patient and so promote autonomy.
The current government’s trajectory in health care is towards an increased role for the commercial sector (e.g. Leys, 2003). This policy of ‘contestability’ in the NHS seeks to provide/commission services at certain standards whilst seeking increasing cost-effectiveness. Cost-effectiveness may be in terms of, for example, better access (surgeries open longer hours for the same level of reimbursement) and/or in terms of reduced costs. Neither, admittedly, is it merely just the current government’s policy. Rather it is part of an internationally agreed agenda for signatories to the 1995 General Agreement on Trade in Services which intends to eventually open up public services, such as health care, to international trade (Pollock, 2004) and so is likely to be a policy of whatever shade of government. Nevertheless, it is such a policy that will create the very climate for ethical dilemmas: prescribing that is influenced by price rather than by patient need will be disastrous for patient-doctor relationships.
As generally with any such neoliberalist approach, the policy shift is likely to be a slow process (but seems to be entering a higher gear now Virgin group has expressed a desire to move into primary health care) as it is really an almost reluctant response to globalisation’s effects of emasculating governments. The specific policy of dismantling (‘commodifying’) the NHS has to be managed incrementally because it is likely to be unpopular if introduced blatantly, but it can be seen to be emerging quite clearly now in the UK. Primary Care Trusts (PCTs) are encouraging GPs to refer patients along particular pathways, arguably skimping on quality in order to save money. GPs must make a stand for their patients. They must not waste resources but should not refer on the basis solely of costs. Probably the biggest obstacle for getting commercial organizations involved quicker is the difficulty of access to primary care patients. Patients should enjoy having trusted access to a family doctor with whom they can build a relationship from childhood – someone who knows them, their family and their social and economic circumstances. The patient-list and the associated patient notes in particular are the key to this access. The NHS’s multi-billion pound investment in computerisation to create a national patient data repository (the ‘spine’) is intended however to allow access to patient records virtually wherever and by whomever.
The ethical problems will arise when the big commercial organisations are really to offer to provide a primary care service at reduced costs. They will surely seek to employ sessional GPs who may be foreign (for whom the first language might not be English), who may not be so skilled or experienced, and who may even have been ‘struck off’ in other European countries. Presently there is no “legal duty or regulations across the EU to exchange registration and disciplinary information and to act on it” (The Times 23 January 2007, pp. 8 and 16). Such GPs will know little if anything about the family or social situation of the patient; they will be paid to work set hours (or be paid premium rates) and to provide a specified service at minimal cost – they will work to a contract rather than to a covenant arrangement. The same GP may not be available a few months later as she might have moved on to headquarters or to another office, perhaps in another country or continent in order to see the world and further her career. She will not be particularly interested in the patient because she knows she will not be there when the condition deteriorates. This is in sharp contrast to the traditional family doctors who are there throughout all the patient’s problems. They tend to stay in the same practice for the whole of their careers building up rapport with their patients, and whose acceptance that they will have to explain things to the patient or the patient’s family should anything go wrong is a guarantor of care.
Yet, confidentiality is properly part of autonomy – because only if the patient can trust the GP to maintain confidences can the patient fully reveal all her true problems and so hope to get the help that she needs in order to live her life authentically. Martin for instance notes that autonomy – respect for the patient – also entails respect for the patient’s privacy, including the confidentiality of patient information. It is this aspect of primary care that this writer sees as coming most under ethical threat from the government’s strategy to privatise primary care. The introduction of a national patient database will, as the government claim, allow a doctor who is unfamiliar with a patient to identify underlying medical conditions that may be helpful in managing the patient in an emergency. However, the same technology will allow an awful lot of people (there are in excess of a million staff working in the NHS) to look up medical or demographic data on anyone. Privacy will go out of the window. True, whenever someone accesses the database they will need a smartcard, a password, a ‘legitimate right’ to look at the record, and an audit trail will be instantly created. Patients will be able to obtain a list of who looked at their records, when, and in theory action can be taken against those who looked without good reason. But in practice this will be impossible to police.
If they can even be traced months after the event, temporary clerks will easily be able to claim they ‘mistakenly’ looked at the wrong record. Or that they looked at it for an administrative reason: to check on Read-coding; to identify when a patient was last seen; to see if the patient has had the influenza vaccine regularly; or whatever, the specifics of which they have long-forgotten the details of. They certainly did not reveal the details to the accused, or the newspaper, or the ex-spouse.
The government’s strategy bears the hallmarks of a simplistic utilitarian approach seeking the greatest benefit for the majority, and in order to arrive at this ignores the concerns of any individuals who may be affected. Yet, those individuals are all of us. It is a shortsighted approach. Once the commercial providers are established with their feet secure under the consulting room desk, they will surely want to increase their contractual demands and prices will rise so that overall costs will become greater than they would have been under the existing arrangements (why else would the commercial providers even want to enter the marketplace?).
That utilitarian approaches are not untypical of NHS managerial/administrative approaches can again be illustrated by a fairly recent event concerning the new general practitioner contract, which commenced in England and Wales in April 2004. Local Primary Care Trusts (PCTs) began their quality assurance visits in October of that year and were intended to enable verification of the record keeping and attainment claims made by family doctors’ surgeries, and to advise GPs about contract performance issues. Immediately the visits were due to commence the medical press filled with warnings from concerned GPs that patients’ details should not be revealed to the visiting PCT staff without the express informed consent of the patients. The confidentiality of patient records is traditionally considered sacrosanct because, it is believed (or at least hypothesized pending evidence, see e.g. Halpern, 2005), only with the understanding that their revelations will be kept private will patients adequately unburden themselves, and so reveal the information the clinician needs in order to treat them most appropriately (Campbell et al., 2001).
Local Medical Committees advised that the PCTs should seek the necessary consents from patients, as the quality assurance visits were not to be unreasonably burdensome for the practices involved. However if the PCTs were to have obtained such consents they would either have had to contact the ‘random’ patients whose records they proposed to check, in which case the practice would probably become aware of whose records would be checked, as patients might well query the matter with their doctor. Alternatively, the PCTs would have to write to every patient asking for explicit consent and only select from those (few) who did give such consent. The process seemed unwieldy, and the bureaucracy involved threatened to tip easily into the farcical.
GPs made a fuss nationally and the matter largely died down – what seemed to happen was that GPs from another practice came along as part of the PCT inspection and it was the GP member of the team who looked at certain elements of anonymised patient records. PCT staff themselves did not get to see patient identifiable information. The clinicians had collectively challenged the ‘NHS’ by insisting on patient rights to confidentiality (an example of their applying their deontological ethical beliefs). NHS managers by contrast had envisaged looking at a few patient records to ensure there was no cheating. They considered that this slight slippage in terms of respect for confidentiality could be justified because it was the only way to properly check that public money was being properly earned. The theoretical breach of confidentiality in a very few cases was to be justified because public funds were to be seen to be properly spent (a utilitarian ethical approach which can easily override the interests of the few for the benefit of the many). Again, in 2006/07 many GPs withdrew their practices from the Designated Enhanced Service for Access foregoing the associated payments rather than allow DH sponsored software to extract patient details from practice computers in order to create a data set from which patients could be sampled.
Varieties of Utilitarianism
The utilitarian normative ethical perspective it could be said, was almost designed for those with a public duty: typically it asks ‘What should we do, collectively?’ rather than ‘How should I live, personally?’ (Goodin, 1993). The access to records dilemmas reveals the NHS’s ethical perspective and contrasts this with the, almost instinctive, ethics of the majority of general practitioners.
Utilitarianism is a teleological approach concentrating on the likely consequences of acts or decisions in order to decide if they are morally right. Utilitarians broadly seek the greatest good for the greatest number when exercising their moral choices. If their intention is to achieve that goal therefore then the outcome of their choice should be as they expect or their goal may be missed.
Benthamist utilitarianism in essence argues for a criterion of a pleasure-pain continuum by which the consequences of actions may be assessed: consequences, it holds, can either give rise to pleasure (happiness) or pain (misery).
Benthamism is perhaps most famously associated with the idea of ‘the greatest happiness for the greatest number’, and applying this notion to the ethical problems we have discussed might suggest that the decision to release information could be supported if a consideration of the social benefits suggested they outweighed any personal disbenefits that might occur. Thus, the PCT’s (society’s) ability to check that the surgery has not falsified information would ensure that the practice’s results revealed the true state of how healthcare is delivered by the surgery and progress could be tracked over time to society’s benefit. This possibility would need to be considered against other possibilities including that patient confidentiality might be considered as compromised (although as the PCT would be bound by confidentiality clauses too, the issue, it could be claimed, is only a theoretical one which patients are not much concerned about). Unless confidentiality is strictly adhered to, then in future patients could become reluctant to divulge all necessary information with a consequence of more untreated illnesses and greater misery. Thus, the utilitarian scale here swings to favour either disclosure or a denial of access depending upon what the actual outcome might be. And we cannot know the future. Crude Benthamism’s tendency to ignore minority rights as it attends to the majority’s benefit can mean an individual’s health care needs would be ignored, as under this ethical perspective there would be a tendency to favour general, almost theoretical, and certainly impersonal approaches to healthcare rather than to address the needs of any particular patient.
Moral behaviour however is not always about conforming to what is socially popular but of acting out of convictions, which may not always lead to obvious happiness. A Kantian deontological approach contrasts with utilitarianism by looking to the intrinsic features of an act to decide its moral value: it concerns itself with one’s duties in the situation; it emphasises the rights and autonomy of others, and the need too to treat others never as means to our ends. Such Kantian categorical imperatives still require the interests of all affected rational agents to be taken into account and so, as Gillon (1986) points out, Kantians would not say that even medical confidentiality was always an absolute. Thus the Kantian approach would surely be to consider the patients’ expectations, the need to treat all in the way one would wish to be treated oneself, and the fact that the breach of confidentiality to allow a payment check is a blatant means to an end.
Kantians would probably not allow the PCO inspection team into the surgery. Utilitarians in this case are more likely to do so – but such a decision is likely to vary between even act utilitarians. If the (act) utilitarian for example believes the consequences of an act are such-and-such, then s/he is likely to consider the greatest benefit based upon that expectation. Another utilitarian of the same ilk however may expect a different outcome and so perceive the benefit to move in the other direction and thus different utilitarians may seek completely different courses of action. As Mill himself acknowledged: “Utility is an uncertain standard, which every different person interprets differently” (Mill, 1863 [2002: 291]). One problem with utilitarianism is thus simply that it is consequentialist – and we rarely know the outcome of potential behaviours. The utilitarian approach thus depends as much upon anticipating correctly if the intention is to have any chance of achieving its teleological goal. A deontological approach by contrast may mean that we are more likely to achieve the moral outcomes we seek, largely because we tend to know our duties a priori and with them we can act consistently.
Connecting for Health’s proposals for an implied consent to having a Summary Care Record on the National Patients’ Record System is another clearly utilitarian approach to health care management, which overrides the wishes of patients.
Utilitarian ethical approaches have little to offer general practitioners or their patients. Individuals would be best served if their doctor concentrated on the doctor-patient relationship and the promotion of patient autonomy. Commercial organizations wishing to deliver healthcare are far more likely to act with a utilitarian basis in their overall attempts to secure profits. Patients of such organizations will be re-commodified as disease harbouring entities rather than individuals. Primary health care practitioners would thus do well now to begin to debate these issues and perhaps better get across the message that what they want most is to provide the best for their patients and thus they must be seen as the patient’s advocate – not the NHS’s tools.
Primary care seems likely to sink under the threat from big commercial companies. GPs now need to grasp an ethical framework - as Arthur grasped Excalibur to save Britain of old - and use it to protect the tradition of primary health care. Martin may not realise it, but in calling for a development of primary care ethics she may have stumbled on Excalibur – and now it only needs a rightful Arthur (MB, ChB) to brandish it aloft and gather an army under it.
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Copyright Priory Lodge Education Limited 2007
First Published August 2007