Given their 24 hour responsibility for care in many settings, nurses are the main arbiters of the privacy afforded or denied to patients. In this article the author delineates four aspects of privacy, namely: bodily privacy, space privacy, information privacy, and privacy of individual behaviour. He draws on a range of recent evidence that points to people's experiences of health care being unsatisfactory in terms of privacy, and offers explanations as to why much patient privacy is impossible. He argues that the patients’ need for privacy is to a large extent in competition with the professional need for surveillance, noting that while nurses and others do maintain some patient expectations of privacy, these expectations are artificially low on the part of nurses, who are predisposed to invade privacy as an unconscious aspect of their maintenance of professional power. The author provides a discussion of the theoretical basis of this viewpoint, drawing on important insights from Foucault and Goffman, and concludes that an awareness of these issues can help to re-balance the tension between the need for privacy and the need for surveillance.
Key words: Foucault, Goffman, nursing, power, privacy, surveillance
In this paper I will argue that whilst many nurses take privacy seriously at an individual level, nursing as an activity is at its most effective when it maximises the opposite of privacy, namely surveillance.
What Does Privacy Mean?
| ...whilst many nurses take privacy seriously at an individual level, nursing as an activity is at its most effective when it maximizes the opposite of privacy, namely surveillance. |
In nursing we think we are good at privacy. Back and Wikblad (1998) argued that privacy is a basic human right which must be seen as a key concept in nursing. Yet quite recently Street and Love (2005) suggested that little analysis has been conducted into the meanings that health professionals attribute to the notion of privacy. They argued that although a range of works can be found which address the concept of privacy, meanings attached to privacy vary widely. In a study of older people in five European countries Schopp et al. (2003) suggested that the maintenance of privacy allows for a feeling of personal control, opportunity for self-evaluation, and release from societal expectations and the situational context for sharing information. Woogara (2004) agreed that the concept of privacy is ill-defined among academics, but suggested that ordinary citizens have little difficulty with the idea. Street and Love reviewed several texts which enabled them to suggest that privacy can mean: ‘the state of being alone,’ ‘having the right to keep one’s personal matters and relationships secret,’ and ‘protecting personal information in the public sector’. They found these meanings insufficient, however, and argued that privacy is not just about information or relationships, but also includes a physical dimension, one that patients in general are more concerned about. This physical dimension is emphasized in what Lawler (1991) termed a ‘somological’ (focused on the body) approach. In her influential study privacy "means all of the following, either individually or in combination – a lack of audience, no unnecessary exposure of the body, minimizing the possibility of embarrassment, maintaining a person’s dignity, and an aspect of personhood" (p. 166).
What Are Patients’ Experiences of 'Privacy?'
As suggested above, privacy is a concept with many aspects. This section will highlight four aspects of privacy, specifically privacy of the body, space, information, and personal behaviour. Each will be discussed in turn.
Bodily Privacy
Walsh and Kowanko’s (2002) small, qualitative study of a self-selecting group of patients (n = 5) and nurses (n = 4) in South Australia gives further primacy to Lawler’s notion of the body as the focus for concerns about privacy. In this study, patients felt very much that having their body exposed and being treated as an object were threats to their dignity. In particular, one patient complained of being dressed in an operation gown which flew open at the back. She described her experience of being seated on a commode for transport to the bathroom in this manner:
...They don’t bother to do it up and you’re sitting in this chair, your bottom going through the hole and you say to them, "Well look cover me up, I don’t want to go out like this..." and they (nurses) just say, "Oh you’re in a public hospital now"...you’re taken out in front of visitors, maintenance people, cleaners, doctors walking around...(p. 147).
This theme of indignity through a lack of privacy of the body during elimination and hygiene care is a prominent, if relatively recent, addition to the literature.
| ...in the UK, society can still be said to be stratified in relation to which toilets one may use. |
A larger qualitative study by Woolhead, Calnan, Dieppe, and Tadd (2004) of seventy two older people in the United Kingdom (UK) demonstrated that older people’s dignity was often violated by hospital staff exposing patients’ naked bodies to strangers when, for example, a hoist was used for lifting. In one situation a person in a stroke rehabilitation unit said, "[I was] on the hoist and I used to say ‘can I cover myself up’ and they just pulled your nightie down over you but the back view was wide open to anybody" (p. 167 ). In these situations in which patients were being taken to the toilet, the act of elimination was far from private, as is the case in much health care today.
Whatever strides may have been made towards a ‘classless society’ in the UK, society can still be said to be stratified in relation to which toilets one may use. The higher one’s status, the more private the facility. In UK National Health Service Hospitals, it is commonly the case that staff would never use the patients’ toilets and the converse would rarely be allowed. One reason given is that, like many public conveniences, the patient’s toilets are never sufficiently clean. Granted, this is a period when there are major concerns about Methicillin-Resistant Staphylococcus Aureus, and the staff view can at least be partly understood in these terms. Of even greater interest in this inequity, however, is the fact that many ward or other patients’ toilet facilities offer insufficient privacy. Littlewood (1991) argued that social position appears linked with bodily functions, with the structure and functioning of the human body providing a physical locus on which to place meanings and status. There are particularly strong prohibitions in western societies on the ‘free’ passage of urine and faeces. This means that in the hospital, the requirement for patients to request permission to use the toilet, bedpan, or commode puts them under the control of staff and often results in patient humiliation. For nurses to share the same lack of privacy in these matters as patients would irretrievably weaken their personal professional authority to control those in their care.
In an ethnographic study of a medical ward in a British Hospital, I found patients who would go to great lengths to avoid embarrassing invasions of their bodily privacy (Johnson, 1997). ‘Kevin’, a young man with the severe spinal condition, ankylosing spondylitis, was undergoing X-Ray therapy and was required to provide three faecal specimens for analysis for occult blood. He went many weeks without doing so, despite regular reminders and threats. Whilst these were ‘clinically necessary’ he saw little reason to subject himself to the humiliation of providing faecal material in a transparent polythene pot to nurses of his own age and with whom he would, outside of the hospital, see himself as a peer. In that context he was unable to give up his usual privacy in the disposal of the products of elimination. If we doubt the need for such privacy in elimination, we might ask ourselves in what context would we provide such specimens to our peers without embarrassment?
It is useful to remember that in ordinary social life our bodies and their contents are normally ‘bounded.’ We spend considerable efforts with the young in toilet training for this ‘boundedness.’ Indeed the inappropriate release of body contents in incontinence, flatulence, or vomiting are sources of immense embarrassment. Despite societal norms governing the release of bodily contents, the concept of ‘boundedness’ as an aspect of our personal privacy has only recently come to some prominence.
In Lawton’s (2000) brilliant and emotive discussion she described the extreme difficulties faced by patients in the dying process even in hospices. She developed the notion of ‘sequestration’ in relation to the idea of ‘normality’ of continence of body excretions. Lawton showed how as one woman was dying from pelvic cancer, the secretions of bowel, bladder, and vagina combined to create suffering beyond physical pain, for her, for her relatives, and for the carers and other health professionals present. Such unboundedness of the smells and secretions challenged all to maintain their personal and professional dignity, and made privacy in these matters impossible within the confines of the hospice itself. Lawton argued that, as earlier with other stigmatising illnesses, those dying in the most distressing ways are increasingly sequestered in hospice care or hospital side wards. Lawton argued effectively that whilst the sequestration of people with these distressing consequences of their illness might relieve some embarrassment, this isolation can contribute to a loss of patients’ personhood which leads in turn to disengagement from relatives and friends.
Concerns regarding initiation of nurses into body care were described powerfully by Lawler (1991). Her work partly compensates for the inadequate way in which textbooks did, and continue, to deal with the difficult issues surrounding the exposure of the body and maintenance of privacy and respect for persons and their bodies. I suggest, however, that we still have a way to go in respecting this bodily privacy.
Space Privacy
| ...this recapture of a strategy to improve privacy in the ward is...arguably a feature of women's increasing assertiveness in matters of childbirth. |
Burden (1998) did very interesting work in identifying patients’ desire for privacy of space. Burden’s participant observation study of a midwifery unit demonstrated an interesting strategy for increasing privacy of space and perhaps body. This study found that increasingly women were drawing their curtains round their beds; and this behaviour was leading to deterioration in the quality of interaction between the staff and the women. Burden found that without doubt curtains were being drawn in attempt to replicate the privacy afforded by single rooms. She speculated that this increased need for privacy stemmed partly from today’s more rapid turnover of patients, which meant that women did not get to know each other so well, and partly from the lack of confidence that many women had in dealing with any problems. Burden further suggested that the positioning of the screens or curtains was quite subtle. For example, semi-closure of curtains was an invitation to staff to engage with the women. Whilst clearly irritating to the staff, this recapture of a strategy to improve privacy in the ward is interesting, and arguably a feature of women’s increasing assertiveness in matters of childbirth.
It is worth commenting that the methodological paradox in such studies is that in order to study privacy one must invade it. Burden (1998) admitted to having this dilemma, conceding that she undertook a mixture of ‘covert’ and more open observations during her fieldwork on the grounds that: "Obviously it was inappropriate to gain consent to participate from individuals as the advantage of observing natural settings would have been lost" (p. 18). Whilst I might argue that the modern fashion for rather strict codes of informed consent has been ignored to some degree here, Burden’s pragmatism worked in favour of her participants because at all times she was working to improve care. Burden noted, "On more than one occasion it became necessary to drop the role of researcher because of the need to practice midwifery care, in order to maintain the health of the woman" (p. 18). Her goal was to provide the best care, whether in the role of researcher or the role of the care provider. This illustrates well the difficulty of applying absolute rules of conduct in the real world research setting. Whilst decisions such as Burden’s should be made with caution, she has done little obvious harm and has probably done some good. Research ethics in the field must be practical and transparent (Johnson, 2004).
Information Privacy
| ...curtains may provide visual, but certainly not auditory, privacy. |
Although issues of the body and space are of great importance to patients in their experience of privacy, informational privacy also is important. As Jacelon (2003) noted, "In the hospital, privacy is a scarce commodity"(p. 548). Reporting a grounded theory study of older people’s dignity in an acute hospital, Jacelon described privacy as the interface between self-dignity and interpersonal dignity. She also showed how curtains are used to demonstrate a spurious privacy in caring actions, but reminded us that curtains may provide visual, but certainly not auditory, privacy. In one example in her study a young patient was discussing his drug abuse history with a medical student and was audible to anyone who was passing.
At the level of national policies, informational privacy is the aspect of privacy currently receiving most attention and legislation (United States Department of Health and Human Services Office for Civil Rights, 1996). Lowrance (2003) reviewed recent changes in the policy and legal context which, from the European perspective, include the European Union Data Protection Directive (Centre for Democracy and Technology, 2005) and in the UK, the Data Protection Act (The Stationary Office, 1998a), the Human Rights Act (The Stationary Office, 1998b), and the regulations under Section 60 of the Health and Social Care Act (The Stationary Office, 2001). The dramatic increase in interconnectivity between computers and databases has presented interesting possibilities for the analysis of data collected for one purpose and used for another (Haigh & Jones, 2005). This raises the question whether carefully anonymised clinical data can, and perhaps should, be used for research.
More focused on the patient experience, is the question of privacy of information in different contexts. It is clear that in most developed countries much energy is expended in the protection of the privacy of clinical and research information by health professionals. In research reports, units, hospitals, respondents’ names, and sometimes even demographic facts are changed and anonymised to protect the privacy of participants from assumed but often unknown harms of the release of these data. If, however, we watch the television, we can regularly see the most intimate details of named individuals’ health history and their illness trajectory, whether fortunate or otherwise. Whilst it might be argued that health research and television journalism are completely different things, in many ways their similarities outweigh their differences. Nurse researchers are increasingly using video to improve the validity and accuracy of their interpretations (Latvala & Vuokila-Oikkonen, 2003). In digital formats these data can be disseminated widely and even inserted into journal articles. One might reasonably ask, at a common sense level, why the level of protection of privacy afforded to patients in one context approaches exhibitionism in a different one.
Privacy of Individual Behaviour
Patients have concerns that in many health care settings they cannot ensure privacy of their intimate social relations with relatives, friends, and others. These issues are nowhere better illustrated than at the end of life. Whilst death is said to be part of life, most reasonable people would wish to ensure that the last days of life are of the highest possible quality. I have discussed how Lawton (2000) brought sharply into focus the unbounded nature of bodily function and personal space in a UK terminal care setting. Street and Love (2005) similarly illustrated the degree to which nurses act as gatekeepers making judgements in those final days about who should and who should not share the intimacy of a relative’s dying process. In long stay settings and hospices this intimacy is often extended to residents by virtue of their relationship with the dying person. However, the limited amount of resources available to deal with this intimate form of emotional labour means that it is often carried out in corridors as noted by Street and Love (2005):
A lot of times I deal with families in corridors. They kind of tend to want to do their business and talking wherever they are and it comes out that the wards don’t have rooms that you can go to, so you use corridors, at the bedside, in the lounge that belongs to the whole ward, or just wherever it is (p. 1759).
Comments such as this raise the question of why maintaining privacy is so challenging in health care settings. The next section will address this question.
Why Much Patient Privacy Is Impossible
Health care is based on surveillance which, in many ways, is the opposite of privacy, and nurses are experts in surveillance. Florence Nightingale knew about effective surveillance in all its forms. She was a self-taught expert statistician who used her analytic powers to demonstrate how simple hygiene measures would greatly reduce deaths from infection in the Crimea. A regular confidant of Florence Nightingale, John Stuart Mill was typically prescient on the subject of privacy:
The ancient commonwealths thought themselves entitled to practice, and the ancient philosophers countenanced, the regulation of every part of private conduct by public authority, on the ground that the state had a deep interest in the whole bodily and mental discipline of every one of its citizens: a mode of thinking which might be admissible in small republics surrounded by powerful enemies, in constant peril of being subverted by foreign attack or internal commotion... (Mill,1975/1910, p. 19).
| Health care is based on surveillance which, in many ways, is the opposite of privacy... |
Mill’s concern a century ago reflects a similar situation today which recent world events have brought even more sharply into focus. There is a policy tension between the individual’s rights to ‘privacy’ of thought and action and the authorities’ need for information and control over these. Mill’s mentor was Jeremy Bentham who described the ‘Panopticon,’ a circular building in which prisoners would be able to be surveyed continually by a minimum of staff so that they could be controlled (Bosovic, 1995). Whilst not often circular (although some are), the ‘Nightingale’ wards exhibited similar principles in that virtually all patients could be seen by just one nurse present in the ward. Privacy was the last thing on Nightingale’s mind. Rather, the ill were to be observed in great detail, and regular reports were to be made to senior nurses, matrons, and the doctors. Today, structural, clinical, and research factors all contribute to the lack of privacy in health care. These factors will be discussed below.
Structural Factors
| Privacy was the last thing on Nightingale's mind. |
As I have shown, recent literature that investigates patients’ experiences of health care shows that aspects of privacy which are highly valued by many patients may sometimes be compromised. Apart from certain parts of the aptly named ‘private’ sector, where those who can afford it get the physical and social privacy afforded by a single room, health care even in the developed nations is a remarkably ‘public’ activity. Indeed it is often argued that wards are like a ‘theatre’ where one is subject to an almost ceaseless ‘gaze.’ Halford and Leonard (2003) examined this lack of privacy from the perspective of the nursing staff. They illustrated how, although nurses could occasionally ‘hide’ in sluices and offices, nurses generally, like the patients, had little or no personal, private space in the ward. Two very detailed recent papers in the United States context illustrate the virtual impossibility of providing privacy in the context of the Emergency Department, because of a lack of suitable space, overcrowding, and the presence of visitors and other agency personnel, such as law enforcement officers, students, and even film crews (Moskop, Marco, Larkin, Gelderman, & Derse, 2005a, 2005b). These papers examined a number of practical suggestions to decrease threats to privacy in this setting. Many of these suggestions seem rather obvious, such as ‘keep doors and partitions shut’ and ‘obtain the patient’s informed consent before filming especially for commercial purposes.’ Yet the fact that these guidelines are needed makes the point that privacy is under major threat. Indeed, the peculiarly ‘public’ nature of this part of the hospital makes unobtrusive observation particularly easy for researchers (Dingwall & Murray, 1983).
Clinical Factors
The role of the nurse has always been to observe. However, for a hundred years these observations were fairly circumscribed to a small range of clinical variables like temperature, pulse, blood pressure, appearance, urine output, and bowel habits. Now, thanks to the ‘nursing process’ and detailed nursing models of assessment, we collect more information about more aspects of the patient’s life than ever before. We have become interested in their expression of sexuality (Holland, 2003), interpersonal dynamics (Peplau, 1952), and worship (Henderson, 1977).
| ...we collect more information about more aspects of the patient's life than ever before.
|
Research Considerations
I have already referred to the paradox of ‘studying’ privacy. We have to invade it to investigate it. At least Burden (1998) was reflexively aware of the dilemma of secretly studying patients’ privacy. Lawler (1991) was similarly fascinated by ‘behind the screens’ behaviour and focused somewhat on the lack of privacy afforded to many patients. Even within an explicitly feminist perspective (where Lawler suggests exploitation is discouraged), she discusses resorting partly to covert collection of data about these private matters. Such dilemmas are common. In an earlier paper I discussed how one researcher worked on a ward as a nursing assistant and secretly studied the care that dying patients received (Johnson, 1992). She (Mary Knight) concluded that the staff ‘conspired’ against the patients to deceive them about their diagnosis and prognosis, whilst failing to recognise that she herself had ‘conspired’ to invade the privacy of dying patients. In that paper I took the view that such invasions of privacy had little moral foundation. More recently I have been persuaded that a libertarian view may have something to offer. When a given behaviour may seem to have been wrong, we must ask ourselves, what harm was done and what benefits were possibly or actually accrued (Johnson, 2004). In the context of dramatically increased bureaucratic scrutiny of the proposals and methods of health researchers, we must recognise that almost all research is in some sense an affront to privacy in its purest form.
Discussion
The notion of the ‘gaze’ was most eloquently described by Foucault (1991) who may seem to have had something of a pessimistic view of the role of professionals. He argued that professional power is derived from the intimate knowledge of subjects, expressed though the ‘clinical gaze.’ Strategies of surveillance employed in this respect include ‘hierarchical observation’ in which the behaviour, attitudes, physical features, and medical condition are carefully ‘examined,’ classified, recorded, and transmitted to those for whom this information is useful. People are ordered in terms of priority for action (most obviously by triage in emergency departments) and assessed for status. Of special interest is Foucault’s notion that people under this form of control or disempowerment soon adopt ‘self-surveillance.’ Examples might be reporting changes in their health status to nurses, and engaging in ‘self care’ by monitoring and reporting their own blood sugar. This process disempowers patients even more when there is a need to report more embarrassing conditions like unpleasant discharges or, in the case of fertility treatment, a detailed and day by day sexual history.
‘Normalising judgement’ is a process that furthers the exercise of power beyond mere facts or criteria. People are labelled in terms of their social worth, often for reasons less related to the medical or demographic facts than the impression they have formed in health professionals’ minds (Johnson, 1997). Indeed here we can hypothesise a cyclical process. Detailed professional knowledge of the patient’s place in the world allows them to be classified and judged socially worthy, or otherwise, of a certain level of privacy. For example, people of the higher professional classes (or other health professionals) might be allocated to side wards. With this additional privacy their status is further enhanced by the increased safety from some aspects of the ‘gaze.’ Normalizing judgment includes monitoring the behaviour of those in our care, executing penalties for ‘infringements,’ such as leaving the ward without permission or failing to collect specimens by eliminating waste in the ‘wrong’ receptacle. On this view, such behaviour might limit the perpetual gaze and should be discouraged.
| A range of studies shows that 'absolute' privacy is currently unattainable in providing nursing services. |
Foucault argued that, however much professionals like nurses might protest that the strategy is not deliberate, much of the power that is exercised over their charges derives from the customary humiliation, largely though a lack of privacy in intimate matters, which patients experience. Littlewood (1991) and Lawton (2000) echo the view that the lack of boundedness of personal space, of bodily excretions, and of interpersonal relations for patients is profoundly disabling. It undermines claims that modern nursing and nursing research are consensual, egalitarian, and emancipatory, whatever our intentions.
We might say that Foucault was right to remind us that the historical evolution of social forces has allowed a decline in the use of more brutal means to control or engage the compliance of people to maintain social order in work or health care. We no longer detain those with leprosy, and have experimented with mixed success with the liberation from institutions for the mentally ill. However, this liberalisation of health and social care simply means that the technologies of surveillance have become more sophisticated. Although the research I have referred to here in this article is confined mainly to the ‘general hospital’ field of acute and chronic physical illness, Foucault (1989) developed his ideas primarily in Madness and Civilisation. He demonstrated the historical importance of observation of new inmates quoting from the procedures used by the Quaker and reformer Samuel Tuke at the renowned ‘York Retreat’:
The observation Tuke instituted as one of the great elements of asylum existence... pursued in the madman the least perceptible signs of his madness, in the place where madness becomes secretly distinct from reason, begins to detach itself from it... . ...nothing else circulated except the observation that would spy out any incongruity, any disorder, any awkwardness where madness might betray itself (p. 236).
Here Foucault shows that the context of a more benevolent approach to the treatment of the mentally ill did not undermine the authorities’ need for detailed, and surreptitiously gained, information. He argued that this provides just as much power to control as physical restraint and punishment. Goffman (1991) also illustrated the absolute necessity for examination and hierarchical observation in the control and disempowerment of any inmate:
We generally find staff employing what are called admission procedures, such as the taking a life history, photographing, weighing, fingerprinting, assigning numbers, searching, listing personal possessions for storage, undressing, bathing, disinfecting, haircutting, issuing institutional clothing, instructing as to rules, and assigning to quarters (p. 25-26).
Goffman was originally writing fifty years ago; yet recent evidence of patient experience shows that health professionals are no more inclined to make privacy vital to the patient experience than they were fifty years ago. A range of studies shows that ‘absolute’ privacy is currently unattainable in providing nursing services. On matters of body care we can say that patient’s experiences are frequently still very poor. In matters of personal space and interpersonal relations something can be achieved with tact and care, but structurally most health care facilities still are wholly inadequate to modern demands for privacy. One only has to visit a relative who has been in the hospital for a day or so to receive a detailed briefing on the most intimate details of diagnosis, prognosis, care, and family circumstances of those nearby in the ward. This situation must change if we truly respect those in our care.
| True empowerment of people in our care requires both procedures and structures that affirm patient privacy in as many of its forms as possible. |
Privacy of body, space, information, and personal behaviours is the patients’ defence against surveillance, or the gaze. True empowerment of people in our care requires both procedures and structures that affirm patient privacy in as many of its forms as possible. In the matter of bodily privacy much can be achieved by a simple raising of standards of the care we give or supervise. No one should be asked to use a toilet we would not ourselves use, take a bath in less private circumstances than we would demand, or have to provide truly personal information with mere curtains for soundproofing.
In relation to data, medical, demographic, and otherwise, the best that can be achieved is that we treat it with the respect its original owners deserve. Kept safely and if necessary in a suitably anonymous form I have no doubt that such data neither disempowers the person nor risks other serious harms (Johnson, 2004). Great benefits may be gained from the detailed analysis of such information, not least the improvement of nursing care.
It is clear that despite the apparent paradox of ‘studying privacy’ much can be achieved by investigating the patient’s experience of health care and learning from that. We should look into what can be done to maximise privacy without rendering clinicians powerless to provide effective interventions. Some of the improvement of opportunities to provide privacy depends on resources, but a good deal more depends on commitment to what people want and expect from health care. Despite good reasons why patient flow and efficiency can be improved by having mixed-sex wards, many patients find their personal privacy invaded greatly by sharing a clinical, toilet, or other area with the opposite sex. Certainly, when new facilities are developed, access to the highest standards should be equal for patients and staff. That is to say, that everyone (patients, relatives, staff, and others) should have the same access to high standards of privacy and cleanliness.
Conclusion
| The best that can be achieved is that nurses and patients mutually agree upon an acceptable level of invasion of privacy, a level that maintains patient safety and quality care. |
Privacy as a concept is hard to define. Clearly it has bodily, space, and interpersonal aspects, along with informational aspects which may need to be considered separately in some circumstances. Moreover social constructions are likely to vary by culture and context. Recent research, however, shows that patients regularly express concern that privacy in health care is commonly inadequate, or worse.
It is clear that some patients even have quite low expectations of privacy, being accustomed to the low standards offered in much health care. When we direct patients to use bathrooms, toilets, commodes, and other facilities, we must also ask what would we want for ourselves, and our relatives, in the same situation.
Whilst more research should be done to examine the standard of care in this regard, we must recognise the paradox which confronts such studies, i.e., that we must invade some privacy in order to study it. However, such investigation is likely to throw up yet another paradox, one that is irreconcilable. Health care, and nursing in particular, depends for its effectiveness upon observation, assessment, diagnosis, classification, and reporting, in other words surveillance or ‘the clinical gaze.’ Privacy is, if not the exact opposite of this, certainly in tension with it. Indeed, privacy is a defence against surveillance. Drawing on Foucault and Goffman it is possible to theorise that the roots of the general lack of privacy, which lie in the need for surveillance, underpin many aspects of professional power.
| If anyone can make the health care experience less distressing for patients, nurses can.
|
Awareness of this deep-seated dynamic can lead us to re-appraise the need for information, for physical resources, and for keeping the invasion of privacy in balance with the harms and benefits which they produce. If anyone can make the health care experience less distressing for patients, nurses can.
Acknowledgements
I am indebted to Rosie Kneafsey, Alison Johnson, Carol Haigh and to the anonymous reviewers for help with this paper and to Hugh McKenna for the opportunity to present this paper.
Authors
Martin Johnson RN, MSc, PhD (Manch)
E-mail: m.johnson2@salford.ac.uk
Martin began nursing at the Manchester Royal Infirmary in the North of England gaining post-qualification experience in acute, intensive care, haematology, and finally mental health nursing. Martin’s publications have dealt with his interest in philosophical issues such as the origins of nursing knowledge and the ethical issues behind various research methods. He recently chaired a group producing the (UK) Royal College of Nursing’s (RCN) new "Guidance on Research Ethics in Nursing." His work also includes an examination of the social context of a hospital ward, offering insights into the way that nurses and their patients negotiate, or struggle, for the power to achieve their goals through judgmental labeling. Martin now heads the Salford Centre for Nursing, Midwifery, and Collaborative Research, and is the Editor of Nurse Education Today, available at: http://intl.elsevierhealth.com/journals /nedt/t_blank. He is also an elected member of the RCN Research Society National Executive.
Article published May 31, 2005
References
Back, E. & Wikblad, K. (1998). Privacy in hospital. Journal of Advanced Nursing, 27, 940-945.
Bosovic, M. (Ed.). (1995). Jeremy Bentham’s Panopticon letters. Retrieved April 11, 2005 from http://cartome.org/panopticon1.htm
Burden, B. (1998). Privacy or help? The use of curtain positioning strategies within the maternity ward environment as a means of achieving and maintaining privacy, or as a form of signaling to peers and professionals in an attempt to seek information of support. Journal of Advanced Nursing 27, 15-23.
Dingwall, R., & Murray, T. (1983) Categorisation in accident departments: 'Good' patients, 'bad' patients and 'children'. Sociology of Health and Illness, 5(2), 127-147.
Centre for Democracy and Technology. (2005). Briefing materials on the European Union directive on data protection. Retrieved April 11, 2005 from www.cdt.org/privacy/eudirective/
Foucault, M. (1991). Discipline and punish. Harmondsworth: Penguin.
Foucault, M. (1989/1964). Madness and civilisation. London: Routledge.
Goffman, E. (1991/1961). Asylums. Harmondsworth: Penguin.
Haigh, C., & Jones, N. A. (2005) An overview of the ethics of cyber-space research and the implications for nurse educators. Nurse Education Today, 25, 3-8.
Halford, S., & Leonard, P. (2003). Space and place in the construction and performance of gendered nursing identities. Journal of Advanced Nursing, 42(2), 201-208.
Henderson, V. (1977). Basic principles of nursing care. Geneva: International Council of Nurses.
Holland, K. (Ed.) (2003). Applying the Roper Logan and Tierney model to practice. London: Elsevier.
Jacelon, C.S, (2003). The dignity of elders in acute care hospital. Qualitative Health Research, 13(4), 543-556.
Johnson, M. (1997). Nursing power and social judgement. Aldershot: Ashgate.
Johnson, M. (1992). A silent conspiracy? Some ethical issues of participant observation in nursing research. International Journal of Nursing Studies, 29(2), 213-223.
Johnson, M. (2004). Real world ethics and nursing research. NT Research, 9(4), 251-261.
Latvala, E., & Vuokila-Oikkonen, P. (2003). Videotaped recording as a method of participant observation in psychiatric nursing research. Journal of Advanced Nursing 31(5), 1252-1257.
Lawler, J. (1991). Behind the screens: Nursing, somology and the problem of the body. Melbourne: Churchill Livingstone.
Lawton, J. (2000). The dying process: Patients' experiences of palliative care. Routledge, London.
Littlewood, J. (1991). Care and ambiguity: towards a concept of nursing. In P. Holden, & J. Littlewood (Eds.), Anthropology and nursing. London: Routledge.
Lowrance, W. (2003). Learning from experience: privacy and secondary use of data in health research. Journal of Health Service Research Policy 8 (Supplement 1), 2-7.
Meerabeau, L. (1999). The management of embarrassment and sexuality in health care. Journal of Advanced Nursing, 29(6), 1507-1513.
Mill, J.S. (1975/1910). Utilitarianism, on liberty and considerations on representative government. Oxford: Oxford University Press.
Moskop, J. C., Marco, C. A., Larkin, G. L., Gelderman, J. M., & Derse, A. R. (2005a) From Hippocrates to HIPAA: Privacy and confidentiality in emergency medicine - Part 1: Conceptual, moral and legal foundations. Annals of Emergency Medicine, 45(1), 53-59.
Moskop, J. C., Marco, C. A., Larkin, G. L., Gelderman, J. M., & Derse, A. R. (2005b). From Hippocrates to HIPAA: Privacy and confidentiality in emergency medicine - Part II: Challenges in the emergency department. Annals of Emergency Medicine, 45(1), 60-67.
Peplau, H. (1952). Interpersonal relations in nursing. New York: Putnam.
Schopp, A., Leino-Kilpi, H., Valimaki, M., Dassen, T., Gasull, M., Lemonidou, C., et al. (2003). Perceptions of privacy in the care of elderly people in five European countries. Nursing Ethics, 10 (1), 39-47.
Street, A.F., & Love, A. (2005). Dimensions of privacy in palliative care: Views of health professionals. Social Science and Medicine (in press, corrected proof).
The Stationery Office. (1998a). The Data Protection Act 1998. Retrieved April 11, 2005 from www.hmso.gov.uk/acts/acts1998/19980029.htm.
The Stationery Office. (1998b). The Human Rights Act 1998. Retrieved April 11, 2005 from www.hmso.gov.uk/acts/acts1998/19980042.htm.
The Stationery Office. (2001). The Health and Social Care Act 2001. Retrieved April 11, 2005 from www.legislation.hmso.gov.uk/acts/acts2001/20010015.htm.
U.S. Department of Health and Human Services, Office for Civil Rights (1996). Summary of the HIPAA Privacy Rule. Washington, DC: U.S. DHHS.
Walsh, K. & Kowanko, I. (2002). Nurses' and patients' perceptions of dignity. International Journal of Nursing Practice 8, 143-151.
Woogara, J. (2004). Patients' rights to privacy and dignity in the NHS. Nursing Standard 19(18), 33-37.
Woolhead, G., Calnan, M., Dieppe, P., & Tadd, W. (2004). Dignity in older age: What do older people in the United Kingdom think? Age and Ageing 33(2), 165-170.
