Community support

In order for someone to have a ‘good’ death, the patient and their FCGs need to feel supported. Gwen’s daughter felt that the large number of friends who visited the RACF, helped Gwen to accept the placement. Gwen had been an active member of the

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She had so many people that popped in and that was a really positive thing about her being here too, is that people could do that…if she wasn’t mixing with people I don’t think she would have been as accepting of the situation. (Louise, daughter of Gwen)

Daniel also appreciated the support he received, not only from the local community, but also Leanne’s international and interstate friends:

I was just amazed. But yeah [a friend] from the Sunshine Coast and [friends from Canberra] and you know different ones that… spent time here over the eight to ten weeks. Just reflecting on it, it was a good time for us as well. I mean I guess we formed a closer friendship and you know Leanne was here for most of it and she was up for just as much fun while she could still have fun when they were here and… and I guess everyone was making the effort to make it as good a time as possible for her and… and yeah as sad as it allwas, it was still nice that we all went through that together. (Daniel, partner of Leanne)

Friends also offered practical support, especially for those who had stored up social capital before they became unwell:

Elaine had a lot of friends in Cooma, and she did a lot of community work. You know she was really well known by parts of the community, and those people were queuing up to do something. I’d have to send them away all the time, there were far too many people. You’d hear a knock on the door, and open the door and there’d be a meal left there. And that sort of thing happened many times. People turned up one day and said, “Right, we’re going to clean your windows for you,” and they went through the house and cleaned all the windows, you know. It was amazing. (Andrew, husband of Elaine)

All of the participants spoke of the essential support required from health care

professionals in making a ‘good’ death. This support was not just medical advice and management, but also came in the form of friendship, practical support, a listening ear, and often just being there:

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I think for someone to feel they’d had a good death would mean that they felt supported through every step of the way, whether that means they’d chosen to die at home or in a facility or in a hospital. (Community nurse)

7.2.5 Autonomy

Autonomy, and respect of patients’ choices, were cited as factors contributing to the ‘good death’. Most FCGs concurred with Susan (daughter of Kevin), who considered it her responsibility to “respect [Kevin’s] wishes as much as we can.” Many patients described how the scope of their autonomy narrowed as the disease progressed. Early in the illness, most patients indicated it was important to participate in decisions regarding treatment options and place of care. For Gwen it was important to undergo surgery in Sydney.

All of the participating patients and FCGs expressed their personal preferences, wishes, goals and priorities. One of the benefits of remaining home was to retain autonomy:

[At home], you can do what you feel you should do, whereas if you’re in an institution you’ve got to abide by the rules of that institution. (Gwen)

For some, the fear of losing control caused much distress, “I’ve lost control [of my body, the disease and my life] and I’m an emotional wreck” (Marianne). Likewise, the disregarding by HCPs of patients’ and/or FCGs’ wishes, was also met with frustration and disappointment.

While most patients and their FCGs accepted the move from home, as death

approached, participation in the decision making was important. Gloria accepted the move to the aged care facility, providing she could continue with physiotherapy. Once settled in the facility, Gloria and her daughter rejected the recommendation that she move to a room closer to the nurses’ desk:

I asked Mum and she didn’t want to move. She’s already had to come to hospital and then here [aged care facility]. She’s just got this room, and I think moving her again is not really fair, especially as she doesn’t want to go. [Louise, daughter of Gwen]

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For others, respect for their decisions regarding the final PoC and PoD contributed to a ‘good death’. It was Barbara’s decision to return to Cooma, despite it being

inconvenient for her son to visit, “[Sydney] was getting her down, and she says, “I want to get out of here” (Rodney). Ivan’s decision to leave the oncology isolation ward and return to the farm, was respected, as was Gordon’s family decision to transfer him from the tertiary hospital ICU to a ward bed in the rural hospital.

For some FCGs, the quality of dying was negatively impacted by the pursuit of

respecting patients’ choices. While some FCGs indicated they would leave the decision making to the patient, “I think we would leave [the decision to go to hospital] up to him” (Susan, daughter of Kevin), some were not given this opportunity as patients became incapable to make decisions. Marianne’s family were intent in respecting her previously stated wishes to remain home. As will be discussed in the following chapter, according to Peter, (husband of Marianne), “her ideas were never realistic… I had to do everything to keep to our plan.” This sentiment was supported by her community nurse, and unfortunately, “the unrealistic expectations set up [the family] for failure.”

While patients, FCGs, and HCPs preferences were often at odds with each other, and preferences changed over time in pace with changing circumstances, a sense of autonomy was maintained providing patients were listened to, and participated in the decision making.