Data collection the interviews

This research used open-ended interviews. I refrained from using a structured interview format, as I wanted to explore deeply the views, perspectives and experiences of the participants (Patton, 2002, p. 4), and wanted to be sufficiently flexible to allow the participants to set the direction of the discussion. I did however, have a set of prompt questions, adapted from those described by McCall and Rice (2005)(Appendix 5) to assist in the interview process. On a few occasions, I referred to the prompts early, especially if the interviewed stalled; however, it was more common for me to glance over the list at the end of the interview, to ensure all major points had been addressed.

The interview topics were based around the patients’ illness, care, needs and support (what was good, what could be done better), where they would prefer to be cared for in the last weeks and days, and if they had a preference for PoD. As the interviewing stage progressed, my approach to the interviews became more iterative and more focused, as I would specifically ask questions surrounding an issue raised by a previous participant. I wanted to determine if the issue raised was specific to one participant or more

generalised. As I became more confident, and where appropriate, I asked specific questions relating to the ‘good death’. “You have no doubt heard of someone living a good life, what do you think would make a good death?”, and in the bereavement interviews “did….die well?” or “did … have a good death?” In some interviews I asked more general questions around the topic, as I had a sense the concept may not have been readily received. I also asked about the benefits and challenges of rural residency on EoLC and PoD.

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Table 4.2: List of participants anddemographic features of the patients (interviewed and identified in obituary notices).

Patient Sex Age Marital Diagnosis

Residence Place of death Interviewed family care- giver Interviewed health care professional #1 Gwen

F 81 Widowed CRC Town RACF- respite Daughter (Louise); Lived 500km away DON #2 Cheryl F 56 De facto GBM Town, RACF RACF (LT)

Partner (Pat) NIL

#3 Marianne

F 62 Married Myeloma Farm Home Husband (Peter)

GP , CN

#4 Kevin

M 75 Married Sarcoma Town Home Wife (Deedee) Daughter (Susan) PCN #5 Ray

M 74 Married Lung ca Town CDH Wife (Clare) PCN

#6 Ryan

M 56 Married Lung ca Rural residential

Home Wife (Carol) PCN

#7 Barbara

F 92 Widowed Frailty Town - RACF RACF (LT) Son (Rodney) Lived 400km away NIL #8 Bruce

M 85 Married CRC Farm RACF EoLC

Wife (Diane) NIL

#9 Dorothy ** F 84 Married Pulmonary Fibrosis Town- RACF RACF (LT) Daughters x2 (Rhonda, Simone) NIL #10 Ivan

M 83 Widowed Leukaemia Farm Home Son (Paul); daughter (Amanda- interstate) GP CN #11 Stuart M 55 Single Pancreatic ca Town BMPS Brother (Fred); lived 500km away; retires and stayed with Stuart for last weeks)

PCN

#12 George

M 62 Divorced Lung ca Village BMPS Sister (Betty); lived in separate dwelling on property NIL #13 Leanne *

F 55 Partner Breast ca Farm CDH Partner (Daniel)

NIL

#14 Elaine*

F 60 Married Breast ca Town Hospice Husband (Andrew) NIL #15 Gordon * M 72 Married; wife in RACF Cerebral lymphoma Town CDH; transfer from TCH for EoLC Son (Nathan) NIL

* Patient not interviewed (identified in obituary notice); ** Patient not interviewed as too unwell;

Abbreviations: RACF=residential aged care facility; LT= long term (permanent resident); HCP= health care professional; CRC=colorectal cancer; GBM= Glioblastoma multiform; DON= director of nursing; GP=general practitioner; CN=community nurse; PCN= palliative care nurse; CDH= Cooma hospital; ca= cancer;

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Where possible, interviews were conducted at the place of residence (private home or RACF); however, a few interviews were conducted in hospital. On one occasion, a patient was admitted to hospital on the morning of my pre-arranged interview. Despite my hesitancy to interview the patient and his wife, on what was a distressing day, both were eager to keep to the interview schedule. I kept the interview with this patient as short as possible (15minutes). Two bereavement interviews, identified through obituary notices, were conducted at my place of work. I had not met the men before and felt it more professional to conduct the interviews in a more ‘public’ space. With the

exception of three bereavement phone interviews, all interviews were conducted face to face, as meaning is not just the words but also the non-verbal clues, the facial

expressions, gestures in response to the words spoken, details that can only be observed in interviews. This meant for one outlier I travelled 270 km round trip from my home to conduct the interview.

In total, 42 interviews, lasting a total of 22.8 hours, were conducted, between 20th April 2015 and 24th November 2016. The interviews lasted from six to 78 minutes, (average 33 mins). The time spent with patients was determined by their physical condition. Time spent with FCGs was determined by their availability. For example, a follow up interview with Gwen’s daughter lasted just eight minutes, as she was concerned about leaving her mother on her own. The interviews were mostly individual, with two joint interviews with both patient and FCG present. I had intended to conduct a follow up interview with each patient; however, most patients became too unwell, or it was not possible to find a mutually convenient time, especially those living further away from Cooma. Two patients died while I was overseas on holidays.

At the start of each interview, I re-affirmed that the interviewee consented to participate, and for the interview to be audio recorded. Participants were reminded they could stop the interview at any time. I did not take any notes during the interview; however, wrote an entry in my personal journal (my feelings, the environment, physical condition of the patient, interruptions) once back in my car.

The interviews were conversational and open-ended, however, became more focused as I wanted to explore further issues raised in previous interviews. At the completion of the interviews I gave the participants’ opportunity to raise any issues they felt had not been

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covered, and to delete anything they did not want recorded. All interviews were audio recorded, and transcribed verbatim. After transcribing, participants were assigned an alias. Recorded interviews were deleted from the recorder after transcribing.

Downloaded interviews, transcriptions and notes are kept on my password protected laptop. A backup copy is kept on an external hard drive. As per the standard ANU policy, these files will be kept for five years after publication.