Abstract
This paper discusses confidentiality as a routine issue of concern to British general practitioners participating in a qualitative study as well as in contemporaneous practice literature. While keen to reflect on routine issues, such as confidentiality, participants who professed a lack of expertise in medical ethics also perceived reluctance or inability to access educational resources or ethics support. Such lack of ability might include a perception of non-entitlement to access advice and support, a fear of criticism, or simply that resources fail to be advertised. Participants' insights are set alongside a concurrent debate in the professional literature over whether problems with maintaining confidentiality should be rigorously discussed in a public forum. A preliminary suggestion is that confidentiality may be emblematic of the negotiation between academic and professional ethics.
Introduction
Ethics has long been recognized as an important aspect of primary health care. 1,2 It has often been seen as part of an academic discipline in which experts deliberate good and bad, right and wrong, in order to solve complex moral questions. 3 Although the ethical decisions made in primary care are often less dramatic than those in high-technology medicine, approximately 400.3 million primary health-care encounters took place in England in 2008 alone. 4,5 There has been a resurgence of interest in the ethics of the ordinary and the everyday in the ethics of primary health care. 1,2 In this paper, I discuss confidentiality as an emerging theme from an ongoing study conducted as part-fulfilment of a PhD. The idea that we can learn a good deal from situations in routine settings from analysing circumstances in which those circumstances are radically disturbed (described by Giddens 6 as ‘critical situations’) seems intuitive in ethics, where conflicts and dilemmas are used to discuss the aforementioned complex moral questions. This paper and my study take a different approach in order to encompass the idea that some situations are of interest even though they are either perceived as artificially critical or not critical at all by participants. I have, instead, used ‘boundary work’ as a conceptual lens to examine academic and professional ethics as the creation and maintenance of essential social demarcations. 7,8 The boundaries between acceptable and unacceptable behaviour that are defined and negotiated in general practice ethics may be studied as such as an area of demarcation. In this paper, the abbreviation GP is used to denote either ‘general practice’ as a medical specialty or ‘general practitioner’, unless the meaning is unclear in which case the full term is used.
Method
This paper offers one emerging theme from a qualitative study in order to provoke discussion. It represents a field-note more than it does a final addition to theory, a hint worthy of comment rather than an empirical claim. The study from which this paper originates seeks to map the relationship between ethics scholarship, ethics education and moral thinking in general practice. The notions, what is ethics and what is ethical, are variously interpreted and, far from universally agreed, mitigate against use of a quantitative method. This study is concerned with meanings and participants' interpretation of situations and decisions. A qualitative method is thus the preferred choice.
This study examines ‘general practice ethics’ as a field by examining the literature and by talking to three types of actor: academics, educators and practitioners in relation to the same, while taking into account the influence of, and the influences on, the researcher. I chose to use a ‘modified’ snowball sample with a theoretical sampling element. This approach is based on the notion that one may be ‘purposive’ about convenience and snowball sampling 9,10 by selecting participants from the sample according to emerging theoretical gaps in the data. For example, I wanted to know how ethics was perceived and considered in practice, and so I talked to practitioners. I wanted to know how theoretical concepts and ideas from research were communicated to practitioners, and so I talked to people involved in the commissioning and delivery of general practice education (including participants specifically involved in teaching general practice ethics). I also spoke to GP trainees. I wanted to understand how practice might influence ethical theory, and so I spoke to senior academics with links to both general practice and medical ethics. Participants were assigned a random letter in lieu of a pseudonym.
The data presented here and the ensuing discussion derive from 19 semistructured interviews with GP trainees, practising GPs, GP educators and university academics, and a focus group of five GP trainees. I used a similar topic guide with both the interviews and the focus group, allowing participants to talk freely. I started with general questions, such as ‘Describe the setting in which you practice,’ and ‘What kind of situations do you think of when you hear the phrase, “Ethical issues in general practice”?’ More specific questions revolved around sources of ethical guidance and support, including the question, ‘If there was such a thing as a centre for primary health-care ethics, what do you imagine it might do?’ For example:
AP: If there were such a thing as a sort of fictional centre of primary care ethics, what do you imagine it might do?
Dr F (GP-Trainee): It would do research.
AP: What kind of research?
Dr F: It would do research on primary care ethics, it would do studies looking into, you know, how doctors are and … [pauses]
AP: So you're talking about empirical research?
Dr F: Yes. I think that's what would be one of the things. I think that it would offer, you know, if it was good, it would offer advice, it would be somewhere that doctors could turn to and – for help with ethical dilemmas. And I think that, I just imagine it would, you know, the doctors or the researchers within this fictional centre would write books on ethics and …
AP: Do people read books on ethics?
Dr F: No, not people I know.
Although this study contains no formal element of observation, I have become immersed in my field: practising as a GP, facilitating ethics and communication skills at a medical school and co-leading a module in primary health-care ethics for a Masters degree qualification. During this time, I attended further medical ethics training, participated in ethics education for GPs and attended general practice conferences. While some participants were very happy to talk to me, whether they perceived a kinship with me, saw some benefit to taking part or had an opinion they wished to voice, others were more wary of someone who they perceived as knowing both general practice and ethics and therefore in a position to criticize at best and report them to the professional body at worst (though in no case was this actually necessary); metaphorically, some potential participants saw me as an ambassador and others saw me as a spy. I also had an internal ethical tension – the desire not to interview anyone over whom I might be seen to have undue influence, for example, as a clinical supervisor or tutor, reduced participant availability. This study has approval from the Royal Free Hospital NHS research ethics committee, reference: 09/H0720/126.
Confidentiality as a topic for ethics discussion
Confidentiality itself came up as a frequently recurring ethical topic in my discussions, whether with senior academics or GP trainees. It has been identified as a core feature of general practice. 11,12 It is of particular interest as it sits at a convergence of professional, philosophical and legal principle: a theoretical basis for confidentiality can be justified in terms of deontology (we have a duty to respect autonomy), consequentialism (if doctors keep confidences, patients trust doctors and disclose more relevant details), virtue ethics (virtuous doctors are sensitive and respectful and therefore keep their patients’ private details confidential) as well as other ethical theories. On a professional level, the UK General Medical Council asserts that ‘Patients have a right to expect that information about them will be held in confidence by their doctors’, and ‘Confidentiality is central to trust between doctors and patients’. 11,13 The legal basis has been described as a public interest duty, but is protected by both the Data Protection Act 1998 and article 8 of the European Convention on Human Rights.
The practical importance of confidentiality in general practice is usefully highlighted by a recent education article published in InnovAIT, the Royal College of General Practitioners' (RCGP) trainees' journal, which has as its explicit mission the provision of educational material towards meeting the RCGP curriculum. The article argues that GPs face particular challenges in relation to confidentiality for a variety of reasons:
Information about one patient may be relevant to another family member who is also the GP's patient. GPs … are more likely to be aware of the social dimension of their patients’ lives, for example, to know if their patient with epilepsy is driving. The GP patient record is displayed on the computer screen during a patient consultation and is visible to anyone who has accompanied the patient without the patient necessarily realizing it. These and other examples illustrate why GPs need to be aware of the ethical and legal requirements governing patient confidentiality and its implications for their work in day-to-day practice.
11
Some examples of confidentiality cases (actual and hypothetical) raised by participants
Whether to keep the confidentiality of a ‘slave’ whose ‘owners’ held her passport and beat her, but feared loss of her otherwise good lifestyle and her life if she went to the authorities; Whether to keep the confidentiality of a patient whom police suspected of a serious violent crime – police requesting information in order to secure a conviction; Whether to respect the confidentiality of woman suffering repeated significant domestic abuse, who did not wish to call the police; Whether to alert the police to local drug dealing described by drug users during the consultation; Whether to divulge confidential medical details to carers or family members of a patient with diminished capacity; Divulging sensitive information on behalf of a patient when confidentially could no longer be realistically maintained; Whether talking to a qualitative researcher was in breach of confidentiality.
As can be seen above, most discussions about disclosure concerned whether to disclose confidential patient details to public authorities (mainly the police). An interestingly ‘routine’ example was provided by Dr Q, a salaried urban GP with no special interest or advanced training in medical ethics.
Dr Q: On a regular basis we have a hostel that we provide a medical service for which is mainly a sort of stop house for rehabilitating alcoholics, and the managers, who are two very nice people, who are not medically trained, sort of run the shop and I seem to convey a lot of medical information to them … And they're not family … they're very responsible people and very good and I've met them on a number of occasions – but the question is, should I be divulging that much information about these people? And do they [the patients] always know that I'm talking to them [the care workers] about them? But on the other hand they seem to run the show very well …
The first interesting feature is that this example represents a routine interaction for Dr Q. He had already considered the ethics of the situation, primarily as part of a reflective exercise – itself a component of a professional qualification. The problematic aspect of the scenario for Dr Q was that he could perceive no professional (not medically trained) or legal (not relatives) entitlement by the carers to access confidential data. He was also not sure that the patients had given, or were indeed capable of giving, permission to discuss medical information. Yet, sharing information appeared the right thing to do:
Dr Q: So … talking to the care workers, am I breaking confidentiality or am I, is it OK because I'm looking out for the welfare of the person? … What is right and what is wrong there? Because at the end of the day I am technically looking after the welfare of the patient, but am I going about it in the right way?
The reason for sharing the information with carers was that it appeared in the relevant patients' interests to do so, irrespective of any formal consent arrangements. Dr Q was interested in going about things in ‘the right way’ and his method of understanding the issues was not giving him the answers. In the quotation below, Dr Q particularly illustrated the metaphor of professional ethics as a boundary that is taken for granted:
Dr Q: The ethics … I think it's almost assumed that you know all of this … You know the ethics and confidentiality … which is not necessarily true. I would assume that fitness to work would not only be clinically capable but also to be able to be aware of ethics I suppose and what's right and what's wrong.
Dr Q appeared to define ethics as a set of rules about right and wrong, which came from those in authority, and therefore one might surmise that discussion might not occur until a conflict arose or the rules changed.
At roughly the same time that I conducted the interviews, the main issues described as ethically problematic by Dr Q and other participants were in the 2009–2010 top 10 requests for advice received by the British Medical Association (BMA) ethics committee. 14 ‘Under what circumstances can confidential health information be disclosed?’ and, ‘Who can apply for access to a patient's health records?’ were first and second. ‘Does a patient have a right to see a medical report written about them?’ was the sixth most common issue that doctors raised with the BMA ethics committee advice line.
The BMA had published their top 10 issues on a webpage with each item linked to ethical and legal advice. 14 It may not be the best example of an available resource: none of the participants I asked had heard of it; Dr F (a GP trainee) simply responded, ‘I've cancelled my subscription recently’. None of the participants who were not engaged in teaching or studying medical ethics were aware of resources other than those they had been obliged to use – illustrating a key point made by Hurst et al. 15 that ethics support services need to raise awareness of their existence, especially if they are to reach those who need their advice most.
Might there be institutional reluctance to examine confidentiality?
While participants in my study seemed eager to discuss confidentiality, as did callers to the BMA ethics department, I was fascinated to find a concurrent debate across two ‘official’ RCGP publications, over whether problems with confidentiality existed and whether they should be discussed openly. Members of the RCGP ethics committee led a series of articles on ethics in the RCGP newspaper with a discussion piece about the challenges to maintaining confidentiality and handling patient data, provocatively entitled ‘Is confidentiality a con?’
16
The RCGP ethics committee chair and one of the committee members were careful to state that their article did not reflect the views of the committee or the college, but asked whether current professional ideas relating to confidentiality are conceptually ‘leaky’ and paternalisistic. Their discussion piece concluded:
Confidentiality means everything and nothing. It is impossible to promise and to practise and continuing to pay ill-defined lip service to it may simply distract GPs from thinking about the need for a new, dynamic and more thoughtful, if more careful, ethical relationship with patients … Engaging in this kind of relationship on the assumption that information will be widely shared may well not damage the patient-doctor relationship. Indeed, it should deepen and clarify it.
16
Sir Denis Pereira Gray, Vice Chairman of the Ethics and Confidentiality Committee of the National Information Governance Board and Patron of the National Association for Patient Participation responded in the British Journal of General Practice (BJGP).
12
A retired GP and former editor of the BJGP, he re-asserted the ethical promise that instils confidence in general practice:
This doctor-centred article, published in the medical press from two prestigious authors, may mislead and worry patients, especially those who read it via one of the approximately 2000 patient groups now associated with British general practices … … Patients often come to GPs in distress, and unburdening themselves can be, and often is, therapeutic. This response seeks to support such patients and to assure them that their legal, ethical, and ministerial safeguards remain in place.
The deliberate removal of ethical discussion from public fora, or the ‘encryption’ of ethics, avoids revealing weaknesses and inconsistencies. The idea of encrypting medical ethics seems to go against the notion that the UK General Medical Council and other professional bodies worldwide have now recognized that medical ethics needs to be explicitly taught, rather than remaining a ‘hidden’ subject in medical education. 17 However, the key difference between curriculum and code of practice is that a code of practice, used in an unreflective manner, is an encrypting process. It may represent a deliberate construction of a set of ethical boundaries by one or many elite groups, and one needs a special set of intellectual tools if one is to understand those boundaries sufficiently to critique them.
Discussion: ethicality and an inverse care law of ethics support
This paper does not seek to argue that greater availability of ethics education and support can improve patient outcomes in primary care, but rather to explore the relationship between academic and professional ethics.
Marshall and Pattison suggest that questioning a routine concept such as confidentiality is ‘possibly dangerous’ 16 and Pereira-Gray echoes this when suggesting that both the public access and the tone of their discussion piece may ‘mislead and worry patients’. 12 The personal and institutional reluctance to explore disagreements, conflicts, difficulties and inconsistencies may be examined using a social theory that Friedson calls ‘ethicality.’ Freidson argues that a profession claims autonomy over the content of its work through a claim to service-orientation. 18 Patient-centredness, the notion that all medical activity should revolve around the interests of patients (and not doctors), represents an uncontroversial commitment to service orientation. The reassurance that ‘safeguards remain in place’ carries the implicit argument that more safeguards are not needed.
Whether it is in a Balint-group (groups generally conducted in GP education where a small number of doctors who know each other meet for discussion led by a trained facilitator to discuss the non-biomedical person-centred aspects of recent consultations
19,20
), an appraisal, or other reflective exercise, guided introspection may be viewed warily on a personal level by British GPs. Opening up behaviour to ethical scrutiny can raise the fear that behaviour will be deemed by peers to be deficient, that one will fall foul of ‘ethicality’.
18,21
This is reflected in my data-set, for example:
AP: Have you ever sort of picked up the phone to ask an indemnifier for advice?
Dr O: Oh, like the MPS?
AP: Yes
Dr O: Yes, yes. Yes, in fact frequently, that makes me sound like a shocking doctor!
Dr O, like all of the participants, was thoughtful and reflective and did not give the impression of being ‘shocking’. This idea that opening practice to ethical scrutiny is ‘dangerous’ is implicit in professional frustration 22 and fears 23 around revalidation. General physicians and GPs find help useful in facing ethical difficulties but reported having used the available services infrequently and, paradoxically, doctors with greater confidence in their knowledge of ethics were more likely to have used available services. 15 This situation is faintly reminiscent of Tudor-Hart's inverse care law, a ‘rule of thumb’ describing the idea that people with the greatest health needs are the least likely to access health care. 24 Whether this is a problem of non-availability of services or a lack of ability to access those services, 25 the analogy may apply to postgraduate ethics education and ethics support in primary care. That lack of ability might include a perception of non-entitlement to access advice and support, a fear of criticism or simply that resources fail to be advertised.
It has been argued by others that ethics education may allow GPs to engage with support and scholarship. 15,26,27 Regardless of the sufficiency or insufficiency of ethics education, it is worth asking whether there are institutional disincentives to a meaningful discourse between theory and practice.
Footnotes
Acknowledgements
I would like to thank the participants in this study for their time and their candid and reflective thoughts. I am also grateful to Professors Clare Williams and Steve Wainwright, Sharon Gewirtz and Alan Cribb as well as the peer-reviewers of this journal for their comments on earlier drafts of this paper.