Ethnography in palliative care

Ethnography has its origins in anthropology and the work of Malinowski (O'Reilly, 2005: 7) and has been used as a means of understanding a wide range of different phenomena. Its methods have been adopted in many fields beyond the social sciences and in more recent years this has occurred especially in educational and medical settings (Hammersley and Atkinson, 2007: 2). Indeed ethnography has widely been used to illuminate aspects of the medical world; from the adaptation of medical students to fit in with their environment (Becker et al., 1961), to the awareness and organisation of dying (Sudnow, 1967, Glaser and Strauss, 1965a) and more recently, patients’ experiences of hospice care (Lawton, 2000). Using participant observation in areas of medicine such as palliative care has been advocated by researchers as a unique way of accessing knowledge, which would otherwise be impossible to obtain (O'Reilly, 2005: 1, Lawton, 2001). Alternative methods such as the sole use of formal interviewing would not be able to contribute the same depth of knowledge, it is argued, especially around sensitive issues such as death and dying (Lawton, 2001).

As previously stated, the comfort and trust of patients was my utmost concern. Patients were admitted for a variety of reasons but predominately they had significant illnesses and many died in the hospice. I was anxious to be able to conduct this research in a manner which was as unobtrusive as possible for not only patients and their relatives, but also for staff. I considered various different roles I could adopt to enable this to be the case. I had previously worked as a palliative medicine registrar for a year in the hospice in which I undertook this research. I had had a period of 18 months away before starting the research, but in a small unit with approximately 50 staff it was not

79 unsurprising that I knew a great number of staff from my previous role. In addition to these previous working relationships I had ongoing relationships with many of the doctors on both a professional and a social basis. Thus it was clear that my role was not only to be negotiated and constructed as a researcher, but also that work would have to been done to renegotiate roles as doctor and friend in the hospice. I had to be clear about where the fieldwork started and finished and who I was in relation to others. This was a constant script in my mind; trying to act reflexively in a dynamic situation where I may be required to move from researcher to friend, from observation to discussion about a social event. This may not be so radically different to the relationships which have been described in other ethnographic work where participants do become friends (Hammersley and Atkinson, 2007: 95); the crucial difference was the pre-existence of my relationships and walking in to start fieldwork with these other roles already playing out.

The work of Goffman in ‘The Presentation of Self in Everyday Life’(Goffman, 1959) is helpful to understand the different roles I was required to fulfil. Goffman states that people ask others to treat them in respect of the way in which they present themselves. The way in which this presentation is conveyed to others is through one’s ‘personal front’, which Goffman separates into appearance and manner. Appearance may concern factors which convey an impression of the individual’s social status, or what they are doing. Manner conveys more of what another person could expect from the individual, something of their attitude towards them. In general, Goffman asserts, we expect appearance and manner to be congruent and when they differ, the person to whom the individual is addressing his performance, may experience uncertainty and doubt about the sincerity of what is being portrayed. In addition, Goffman refers to ‘front’ and ‘back’ - stage performances. The ‘front’ stage, refers to ‘the place where the performance is given’ (Goffman, 1959: 32). Ideas about one’s personal front and presentation of this in dramaturgical form can be useful when considering my role as a researcher in a familiar environment and also the nature of reflexivity.

As a participant observer I had to define my role as participant. I would act as a ‘participant-as-observer’, using Gold’s classification from ‘complete participant’ to ‘complete observer’ (Gold, 1958). Many researchers have taken on different roles as participant observer when undertaking fieldwork, and for valid reasons. Indeed Mead

80 himself argued, to be able to ‘take on the attitudes of the community’ we must be able to ‘take on the role of others’ (Mead, 1934).

In order to understand the environment and processes which one is observing, one must participate and become familiar with the environment and its actors. To continue use of Goffman’s dramaturgical approach, one can consider a number of different ‘stages’ within the hospice, from which I could have chosen to view the nature of sedation. I decided that I would not perform any medical tasks or responsibilities, or be involved in any aspect of personal care for patients. I did not want to cause any uncertainty or ambiguity about what I was doing: I recognised, however, that this decision to be very overt in my role as a researcher would affect the data I collected. Lawton, in her ethnographic study in a hospice, decided to take on a role as a volunteer and engaged in tasks on the ward such as befriending, talking to patients and visitors and serving

drinks. These activities gave her an ‘ideal excuse’ to enter the ward area (Lawton, 2000 p.31) . While she did not take on a medical role, Lawton has referred to some disquiet she felt when realising that a patient had clearly considered her in a role other than of researcher:

during our day-to-day interactions it became very apparent that on some occasions at least, patients perceived and interacted with me first and foremost in my role as a volunteer (Lawton, 2001).

While Lawton attended to this concern by being sensitive about the way in which she handled information in the writing up process, I wished to avoid this confusion by taking a more overt approach which would necessarily put me into more of an ‘outsider’ role. From the research perspective, I was most interested in the attitudes and

perspectives of those who were involved in using and prescribing sedation. I may have been able to access patients more easily had I acted as a volunteer, however may have narrowed my focus to being more of an observer of patient behaviours, rather than participant in a group which was involved in decision-making about sedation. Thus to gain access to nurses (both qualified and unqualified) as well as doctors, and not limit myself to either of these groups, or appear to be changing sides and fitting into neither, I adopted more of a role as an ‘accepted incompetent’,(Hammersley and Atkinson, 2007: 79), a novice, or student. Goffman asserts that it is rare to find a new ‘front’ which has

81 not previously been established (Goffman, 1959: 38). Although this ‘front’ was new to me in this setting, this was a role which would be familiar to both groups of staff. While it may have been incongruous initially, through interaction and modifications,

influenced by those around me, I developed in this role and, I believe, became more accepted through this. I was an interested observer, participating insofar as I would make tea for the group and participate in conversation about both work and more

general matters. For example I would chat about celebrities, Christmas shopping, house buying and a number of different subjects. This ‘mundane small talk’ (Hammersley and Atkinson, 2007: 70) can be seen to help to establish my identity and role as a reasonable or ‘normal’ person, without constant reference or discussion about sedation. This was important in grounding my identity and role in the hospice. While I did not perform role-specific tasks, through which I could be easily identified, I believe this to be justified by being able to take more of a global perspective and allowing me to move more easily between groups. I think there may have been significant inconsistency had I chosen a different approach, and a cynicism about my ‘performance’ which may have undermined the research process. Through being overt and, as far as possible, sticking to the one role as researcher/student, I was as sincere as was possible, while still being aware of projecting myself to appear in a certain light.

When considering this ‘front’ as being similar but not identical to that of a student, it can be seen that my previous experience and others’ preconceived ideas about me, may make my performance insincere. Perhaps, however, my personal front may have assisted this presentation. When considering my appearance, I chose to wear smart clothes rather than another ‘uniform’. Hammersley and Atkinson refer to the importance of different dress codes ‘in the field’; not only to ‘fit in’ to the field environment but also, in other circumstances, to be marked out as not belonging to particular categories (Hammersley and Atkinson, 2007: 67-68). I decided not to wear a uniform which was immediately identifiable with a particular group. I did, however, feel it was appropriate to wear clothes in which I was smart and professional enough, as a researcher, to encounter patients. This may have, in itself, put me into an identifiable group within the hospice – of the non-uniformed staff. Various people wear similar smart clothes, including administration staff, social workers, doctors and students. My manner may also have contributed to an impression of a student at times. I was overtly an interested observer at times, listening and asking questions, as unobtrusively as

82 possible. I would be quiet but appear interested when the business of work was going on, participating more in the times of informality and discussion, especially when this related to matters other than the business of the hospice.

When considering the hospice as a whole to be a stage, the front and backstage performances may illuminate something of my participation. There may be many different ways in which this stage could be constructed: one would be simply to consider the patients’ rooms and the ward to be the front, with the private meeting rooms as being backstage. Here, there may have been a clear distinction in what was said about or to a patient front of stage and that which was said back stage. The stage does not have to be physically bound however; the morning handover meetings may themselves be a front stage performance, while chatting to nurses and reading

magazines may be more of a backstage activity and insight. Clearly this is taken from the perspective of the staff rather than individual patients; indeed this can be seen to be the perspective I was predominately able to access in this fieldwork. In some ways I was able to access the back stage – the:

place, relative to a performance, where the impression fostered by the performer is knowingly contradicted (Goffman, 1959: 114).

I was able to be party to ‘insider secrets’, to observe emotional moments and outbursts and, I felt, share a sense of loss at times when a patient died. This access was, of course, managed and structured by the participants, or ‘performers’ and would be dictated by them. This could fluctuate on a moment by moment basis and I considered myself as almost in constant motion between front and back stage. This movement may have allowed my observations to be considered from different perspectives; whilst moving between front and back stage I was, perhaps, more aware of where I was on stage than if I had been perpetually front or back stage. As an insider, backstage, my observations may have been more acute and contextualised, coming in from an outsider’s perspective.

These concerns about my ‘performance’ link in with the concept of reflexivity. This functions on a continuum between ‘going native’ and becoming autobiographical. In the former one ceases to consider one’s role as an influence; the latter one is so concerned with one’s influence that the work becomes more concerned with the

83 ethnographer’s relationship with the data than about the phenomenon under

investigation (Aull Davies, 2008 : 217). An awareness of self is important and one construct of this is Mead’s separation of the ‘I’ and the ‘Me’ within ‘Self’. He situates Self as inherently a social being, involved in a constant, dynamic process of

construction and interaction with the social world, one which is never a completed product ((Aull Davies, 2008: 25, Atkinson and Housley, 2003: 6-7) The ‘I’ is the aspect of self which is impulsive, while the ‘me’ is aware of culturally and socially accepted norms, and adjusts the presentation of ‘I’ accordingly. This duality, Mead asserted, is what enables us to be able to interpret or take on the role of another; we can react to another individual with respect to the way in which we expect them to view a situation and subsequently act. The changing and progressive nature of the ‘me’ of Self, Aull considers as being informative in developing the reflexive nature of ethnography.

If the self is continually under construction, then ethnographers’ experiences when they participate in social interaction in another society clearly alter their own selves in accordance with the cultural expectations of others. (Aull Davies, 2008: 26)

Thus my ‘self’ changed through this process, in order to adapt to the cultural

expectations of participants; I attempted to fit the model which was required of me, and adapt into a role which allowed me to access backstage while maintaining a sincere and consistent performance myself. In being constantly aware of changing between my Self as researcher and as friend or colleague I was constantly open to and aware of the impact of my actions and words on what was said and done. While initially I was aware of silences or pauses in conversation when doctors or nurses talked about sedation or sedative drugs, this changed as the research progressed. I became more comfortable in my researcher role and others perhaps more familiar with my presence, albeit in a different role to that which they expected. For example, initially nurses and doctors asked regularly, if there was a pause in conversation or I walked into a room, what I wanted to do or see, or if I wanted to ask anything. Later in the fieldwork, this was extremely infrequent and we would engage in small talk rather than default to an overt awareness of me being present as a ‘researcher’.

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