Interviews

3.7.1 Patients

Informal interviews, or ‘unsolicited accounts’ (Hammersley and Atkinson, 2007: 99) in the manner described in ethnographic texts, occurred very infrequently with patients. This was due to the design of the study and access. In the research ethics committee form I specifically stated I would observe staff and my contact with patients would be limited to observing interactions with staff. This was in order to minimise any

disruption to patients and any intrusion on their time. However, this did mean that my direct contact with patients was limited to the contact I made at the time of explaining the study and gaining consent for the observation or for a formal interview. In these interactions patients did, however, give ‘unsolicited accounts’. If they agreed to participate in the study I felt able to record these interactions; if they did not wish to participate I did not include or record details of these interactions.

In addition to these informal interviews, I sought initially to formally interview patients and/or their significant others. These were patients whom I had observed as discussing or receiving sedation. The first two patients I approached in this way both agreed, as did their significant others. However, after agreeing to be interviewed and setting a date

88 both of these patients deteriorated and died. Much thought and discussion has taken place in supervisory meetings about this issue and about interviewing both patients and significant others. I conducted one patient interview successfully; this was a patient who had received sedation for anxiety and was interviewed in relation to this. During the interview, he also expressed his thoughts about sedation at the end of life.

Throughout the interview the patient talked in hypothetical terms about sedation and his wishes for the future; his experience of sedative drugs were those he had been given for anxiety. By this stage in the fieldwork it had become clear that concern about sedation in practice related to sedation of patients who were dying, or about whom there was uncertainty about whether they were dying. Sedation as an end of life practice was only considered in those who were dying; this was a theme which developed strongly

through the observational data and interviews. Therefore considering a patient’s preferences for sedation at the end of life was conceptually a different matter; it asked about future wishes rather than being ground in the present.

I approached a further three patients during the time of the study who had received or were receiving sedation; all agreed however two of these deteriorated before I could interview them, the other was transferred to hospital for further treatment. The time stipulated in the REC application between inviting patients to take part in interviews and carrying them out was to be negotiated between myself and the patient. I did not feel in any of these instances, that the patients wished to participate in the interview immediately. It may, of course, be the case that they did not wish to take part at all and wished simply to ‘stall’ for time. I rather felt, however, that they wanted to have more time to speak to others before participating, and this caused a delay which meant they were unable to participate. Accessing patients for whom sedation was a reality, and who could give accounts of their understanding and wishes, was not possible because: (i) those receiving sedation at the end of their lives lacked capacity; (ii) those who had capacity and for whom sedation was required at the end of life deteriorated rapidly after initial contact.

Others have managed to interview dying patients more successfully (Lawton, 2001), while acknowledging this as a rare voice to be heard. The distinctive feature of this study which presented difficulties was the requirement that patients be able to talk about the issues regarding sedation in the present rather than consider them in hypothetical

89 terms. Concern for the future and presenting wishes for the future is of course of the utmost importance; it does, however, go beyond the scope of this study to consider this alongside the practice of sedation in the present. The present remains the main focus of the study.

3.7.2 Significant others

I spoke to several significant others over the course of the fieldwork; many were happy to chat informally but only one was prepared to be formally interviewed. Many who did talk informally in the corridor were relatives of patients who were not sedated. The one interview conducted with a significant other was an exceptional case, as it took place after the death of the patient. This was discussed extensively with the supervisory team and care was taken to ensure this fell within the terms of the research ethics

committee application. 3.7.3 Staff

Informal interviews with staff occurred frequently throughout the fieldwork however I also sought to formally interview staff in relation to the observed use of sedation. As previously described, those cases which proved to be more problematic were pursued; initially with observation and then followed up with interviews. I observed the course of the use of sedation over time and subsequently interviewed healthcare professionals after the event. All patients whom I observed in this way subsequently died.

Purposefully, I did not interview or seek to interview those involved in the patient’s care while they were still being treated; this may have influenced subsequent decisions. The duration for which I was able to observe, prior to a patient’s deterioration or death, was highly variable, from a matter of hours to many days or weeks. In three instances, while I had been present in the hospice prior to their deaths, sedation occurred when I was not present. Two of these instances occurred at night and the other over a bank holiday period.

Interviews were conducted as closely as possible in time to a patient’s death. This was not always possible due to the nurses’ shift pattern and days off, demands of the ward as well as my other commitments. Interviews were carried out, with two exceptions, within the hospice building. This was to fit around the participants’ wishes and accommodate these as far as possible. The exceptions were consultants who worked

90 both in the hospice and at another site: the interviews were carried out at their

alternative places of work which was more convenient for them. Participating in the interviews within the hospice may have influenced what was disclosed and the nature of this. Participants may have been more likely to have talked about their personal

responses or motivations outside of their work environment. I found that which they did disclose, however, surprisingly honest on many occasions. Only on one occasion did I find a direct contradiction between what I had observed and the account given in interview. The interviews were carried out in an iterative manner, reflecting the previous observations and interviews and following the iterative-inductive nature of ethnography. The nature of the initial interview questions differed little from the original interview topic guide but I allowed the interviews to progress naturally to discuss aspects of the case as freely as possible. I would direct the interview towards more specific issues arising from the observational data as the study progressed and made use of a variety of different interview techniques.

Interviews were digitally recorded and sent electronically for transcription. I initially intended to transcribe at least one interview in full, however, while establishing myself in the field I felt that the time invested in this was more fruitfully spent in the field rather than in transcription. I recognise that transcription itself can be part of

familiarising oneself with the data and a stage of analysis. I did spend time in checking transcripts for accuracy, proof reading and note-taking before re-reading the transcript in full before coding. Transcripts were recorded verbatim for analysis.