Continuidad en los servicios de capacitación y asesoría

Most patients, including the permanent RACF residents, stated ‘home’ to be their preferred place of care and place to die. While patients and FCGs identified home as the physical building, the words and gestures suggested home was more than that and was a place of security, memories, identity and control. Many of the interviews were

conducted at people’s homes, and just visiting where people live gave me an appreciation of what ‘home’ meant. Often I could hear the birds singing, the sheep bleating in the paddock, the neighbour mowing the grass or the sound of silence. Hearing his son on the tractor gave Ivan a sense of connection to the everyday running of the farm:

Ivan: I like lying here in this bed. I’ve got a lovely view out the window, and the garden. I've got my cat. And I got my two dogs with me. And my chooks there. So it's a perfect set up. And then I can ring Paul [son] up and say, what have you been doing Paul [on the tractor today]?

Interviewer: So even though you're in bed you're still part of the activities on the farm?

Ivan: Very much part of it.

For Ivan and Bruce, home was the generational family property where they and their FCGs felt a connection to the land and a continuity with the past:

It’s sort of about who we are really, which might sound silly, but a city person wouldn’t have that connection with place that we have. We’ve been here six generations now, so when we look at things around the farm, like if I look out there I can see a pine tree, I know my great grandfather planted that. I go to the post office and the holly trees out the back, my great grandmother planted those…. Yeah, so we’ve got connections all over the place. (Paul, son of Ivan)

For others, home was also the place for keeping important memories, “if anything important was done it was always done here [on the farm]” (Bruce). After regular home visits, spanning more than two years, the community nurse observed that

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Marianne’s identity as a mother was embedded in the home. The farmhouse was full of memories of children growing up:

That property was where she’d done her mothering, where she’d educated her children, because she didn’t send them to school, so for her that was her world really, so for her dying in that setting was I would imagine very important to her. (Marianne’s community nurse)

At times the words used to describe ‘home’ were paradoxical. On one hand ‘home’ was described as peaceful, unregimented and yet it was a place where patients, like

Marianne, felt in control:

[Home is] a controlled space that Peter [husband] and I have control of, where as soon as we go into a hospital we’re in somebody else’s controlled spaced. That’s what immediately springs to mind. (Marianne)

Proximity to town contributed to the ‘controlled space’ and the security of home. While living on a farm had disadvantages, as will be discussed in chapter 8, Peter appreciated the isolation that the farm provided.

This is a good location because it’s a nice place to be, if you’ve got to be sick, you know, you’re not in suburbia, stuck in a street with people calling in all the time. I mean, you can manage the visitors [at home]. (Peter, husband of

Marianne)

For most patients, quality of life was maintained if they could compensate for the loss of control over their disease, and its effect on their bodies, with some degree of stability and ‘normality’ in other aspects of their life. Many participants, like Ray and Carol, spoke of being able to continue normal activities at home:

Well probably being in surroundings that you know, not having to depend on too many people to do things, like going to the toilet and things like that, just little things. (Ray)

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We spend a lot of time at night just talking in bed. Just cuddling and talking. We’ve always done that anyhow but more intense now. (Carol, wife of Ryan)

The close connection to a ‘place of memories’ facilitated the representation of home as a place of independence and individuality, two qualities that Gwen fiercely protected before her physical deterioration forced her to transfer to a RACF:

Home means everything to me… I’m a homely person, I’ve always been home and family, and it is more personal, its more… it’s more intimate and I think that you can, when I say relax I don’t mean relax, but you can feel more comfortable at home, you can do what you feel you should do. (Gwen)

Home was not simply the physical building, and did not refer to a ‘private residence’ for all the patients. Three of the patients were permanent residents of a RACF; two were short term residents. The presence or memories of family did not necessarily define ‘home’. For Barbara, who had left and then returned to the local RACF, the facility was her physical, emotional, and spiritual ‘home’, a place where she felt she was treated as an individual. Her family did not visit regularly, and yet when she left Cooma to be more accessible to her son, she pined for her former ‘home’:

At first she was doing very well and we thought [we’ve] found the right

place…Big relief… but we noticed her health started to deteriorate and it wasn’t so much her physical health, … it was getting her down, and she said, “I want to get out of here.” (Rodney, son of Barbara)

So after “a couple of weeks … I thought, no I don’t have to put up with this kind of nonsense, I’ll go back home. I call this [Cooma RACF] home… this is home to me.” (Barbara)

Morris and Thomas (2005) observed that while home is a familiar place, where patients and their FCGs strive to maintain a sense of normality, it becomes ‘less normal’ as the familiar space is altered to accommodate the various supports required to keep the patient at home. Kevin’s community nurse observed that Kevin and his family accommodated the ‘new normal’:

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Because Kevin had been so sick for such a length of time it was normality for them… to have him… at home. I know it sounds a bit bizarre. But it was normal, it was part of their normal life, he’d been like that for so long (laughs). The progression to end stage was very normal, not much had changed. He might not be responding as much, but the physicality of having him in a bed and caring for him in a bed, normal. And maybe that’s why it [went so well] … it was what he wanted and that’s what Deedee said to me. She said “thank you, that’s what Kevin wanted and thank you for being able to help us with Kevin and provide his wish.” So she was certainly very grateful of that. (Kevin’s community nurse)

Home was often idealised and portrayed as an unproblematic place, and while the primary preference for most, home was also offered as a default from unacceptable alternatives or places considered problematic. For Gwen, institutions were viewed as impersonal; for Kevin’s daughter, hospitals were too noisy; Peter was concerned about the loss of control in a hospital setting and the staff’s inability to manage his wife’s medications:

I have thought about [the alternative to home] but it does not appeal to me in any way, because it’s not personal. If you go to a nursing home, or where ever you go to, it’s not personal...If you’re in an institution you’ve got to abide by the rules of that institution. (Gwen)

[Dad] likes quiet, peace and solitude, so I think a hospital where people are in and out and it’s busy, [means] he wants to be [at home]. (Susan, Kevin’s daughter)

There are so many things about hospital care that don’t suite this disease state, unless she was completely unconscious, and then it wouldn’t matter, but whilst she was conscious she would suffer terribly with the anxiety and worry about “will my medication be on time, will I have someone to do this and do that?” We’d be at the point of having a family member sitting with her in hospital when we could be doing it at home. (Peter, Marianne’s husband)

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However, home is not without problems. Morris and Thomas (2005) observed that normality, security and personal control found within the familiar environment of home can quickly become disrupted. When symptoms escalate and access to medical help is not readily available, especially after hours, or the burden of care becomes too great, the safe home can quickly become an isolated place, where patients and FCGs feel

abandoned, and FCGs become overwhelmed with the responsibility of caring. Even when things seem to be working well, caring for someone at home is exhausting for the carers. In the following quote, Ivan’s son describes the exhaustion faced by his sisters in providing the physical care for their father. He also illustrates the challenges faced by FCGs in making medical decisions without a clear understanding of the medical details:

There is stress on family relations, everybody’s under pressure, exhausted. It is exhausting, there’s no let up. Dad would be up six times a night… I eventually worked out a roster. One [sister] would do night shift, one would do day shift. They were doing eight hour shifts toward the end, to try and rest, so it’s physically exhausting from that aspect. Another difficulty is managing all the information, so who’s right and who’s wrong, medicine’s not a perfect science – should we be doing this? Should we be doing that? What’s got to happen here? What’s got to happen there? And managing that is difficult…One of the biggest issues was just understanding what’s going on, the information from

[everywhere], trying to process it without the background and being able to speak the language, let alone understand. (Paul, son of Ivan)

Symptom management is often more difficult at home, especially in rural areas where medical and nursing backup is often not available, especially after hours. While

Marianne settled in the last few hours before her death, her GP considered hospital to be the only option had her terminal agitation persisted:

I think the fact that they didn’t have medical staff there to provide reassurance and intervention as necessary was certainly challenging… She became more agitated over the next few hours and there was no medical person there to intervene and help them with that…. If we hadn’t been able to [make her

comfortable], she would have had to have come into town. I mean you couldn’t have her distressed in her last hours. That would have been awful. I mean that

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would be a very distressing thing… you couldn’t possibly have kept her at home in the discomfort and the distress. No that would have been cruel to do that to her and to the family. (Marianne’s GP)

Ryan and Carol were both keen for Ryan to be cared for and to die at home. From past experience, through caring for a relative, they had the image of Ryan slowly slipping away, peacefully at home with friends and family all around. The tranquillity of this image unravelled when Ryan became acutely confused and agitated.5 The palliative care nurse describes a scene of chaos and distress when she arrived at their home on the morning Ryan died:

Things were going well leading up until his death. They…had seemed to manage well, and I think his wife was quite controlled. But the morning of his death, when he became agitated, extremely breathless, the oxygen that we had in place wasn’t enough, the pain, he had pain, extreme pain. I think everything... all his symptoms exacerbated at about early morning. I think they had been like that for quite some time, probably maybe from about two a.m. until we got there …about ten o’clock…We had anticipated ...so the drugs were all there….I think [Carol] was quite frightened at his agitation, so if we’d both not been able to be there and start the drugs I think she would have been relieved to have gone back to hospital, because she would have been... relieved to see him more

comfortable, wherever that took place.

I spoke to [Carol] on the phone the next morning, and I said, “I’m so sorry that Ryan died on the floor.” But, I was very happy when we got [Ryan] back into bed because he looked really peaceful and [Carol] was then able to lay with him. And [Carol] said, “I was just so happy to be able to lay there all day with him, and that is what I’m remembering.” So that made me feel better. (Palliative Care Nurse/Ryan)

5 _{This was one occasion that I was present at the death in my role as the palliative care doctor. I also}

lived down the road, and as luck would have it I was home when Ryan’s sister phoned me to visit urgently.

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Most participants spoke of the importance of continuing social engagement with extended family and friends. This was often considered a vital support for the patient and the FCGs. In the following quote, Carol expressed the important role played by maintaining social contact at home, and the challenges of

maintaining this support if Ryan was hospitalised:

When you’re home you can have a house full of people and they can come and go at different times. Not all the time, but then you’ve got the support with you the whole time. Where in a hospital you haven’t…and you’re more aware of making noise and disturbing other patients. Where at home, you know I can have family in their caravans come and stay in spare rooms, put mattresses on the floor. You could have the house full. Not necessarily disturbing his sleep, but they can pop in from time to time, but they’re also there for me when I need a bit of a break as well…you just can’t do that in a hospital. (Carol, wife of Ryan)

Not all participants wanted their home to be “full of people.” A few months before Marianne died she became gravely unwell. At the time, all the family were called home. Their home was full of adult children, their partners and Marianne’s grandchildren. With no one with medical or nursing experience, the home became chaotic. Marianne did improve, and life returned to normal for another few months. On reflection, Marianne’s husband said:

The home can’t become the social hub, it has to become a private hospital where there is only one family member and they’re here to care for her, not to talk to others, or to socialise with other family members or catch up or anything like that so that Marianne only has to cope with one person coming and going and looking after her…if I’m not here. (Peter, husband of Marianne)

While most participants identified home as their preferred PoD, the decision was complex, dynamic, and often required much negotiation between the patient and their FCG. In many instances, the role of the HCP was to help navigate through the options. The meaning of home, as described by the participants, was consistent with the ten features identified in Despres’ (1991) literature review, and is more than just the material structure. For the research participants, home was a place of security and

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control; a reflection of one’s self, value and status; a place of permanency, continuity, and a place to belong; a place of memories; relationships; the centre of activity; and a refuge from the outside world. All 15 research patients remained home for some time during their illness, yet only four died in their private residence. The following sections of this chapter describe the alternatives to home.