Other's Perception Of The Impact Of Dis-Ease On Da-sein

It was acknowledged earlier in this thesis that advances in technology have

resulted in centralised care. However, the surgery and out-of-town hospitalisation has become everyday for those working in such centres. In contrast, it is not everyday for those affected by such surgery. At some point during the time of hospitalisation the research participants identified that they had priorities outside of the hospital's four walls. At the same time the health professionals' view of the

spouse did not extend to being-in-the-world outside of the hospital. As one

research participant said:

They sent him home too soon . . . They get them all in and shove them all out again as quickly as they can. They should have done more tests and found out that he [needed more surgery] . . . because his heartbeat was not what it might have been. He could have had the pacemaker then instead of having to come back and have another trip

down. It was pretty traumatic (Andrea, p.2).

Findings of the current study are that those who do such surgery overlooked the effect of having to return to an out-of-town tertiary centre for the insertion of a pacemaker. This return is not a simple readmission to hospital, but a disruption of home-life. Furthermore, the outcome of the surgery is predictable for the health professionals who see such surgery every day.

Another couple travelled to the out-of-town centre for the beginning of a week's radiotherapy, only to find that it would not be offered that day, and they would have to extend the number of weeks that radiotherapy was to be offered. The state of being-in-suspense that resulted from this is discussed in Chapter Five. However, the suspension of radiotherapy, because the machine was non­ functional, not only resulted in concern that the delay in treatment could mean that the spouse's health could deteriorate, but also that the delay prolonged the length of time that the spouse would be staying out-of-town:

That was one of the things, you know that, when they said "oh look I am sorry the machine has broken down, just come back next week for your appointment ". And, you say "well, huh, this was our last week ".

.. .1 mean [I don't know] how many times she turned up and they [gave us an appointment for later, saying] "Look we have got an appointment for you in here ". And you are saying "I am glad that you can fit me in, but we 've ... like we 've actually turned our lives upside downfor the last how ever many weeks . . . We planned our whole life [around the given time frame]" (Edward, p.6).

Empathy and the ability to see things from the patient's perspective was essential in determining both the research participant's and the spouse's ability to

manoeuvre around the health system, both physically, and emotionally. For example one research participant felt that the doctors had little understanding of the reality of caring for her husband who was dying, and severely physically debilitated. They proposed further out-of-town treatment:

They were going to take him back [to this out-of-town centre] for palliative care. And that was only decided the day before he died. And I can remember saying to the doctor, I said, " where will he go? "

and he said "to [the hostel]". And I said "Oh that 's fine, we 've been there before ". But William wasn 't walking, and I could remember from the time before that we had to walk across [to the hospital] . And

I said to the doctor " Would you, this time would he be put into the hospital and you would treat him there? " "Oh, you wouldn 't want him to go there ", he said, "[the hostel] is much nicer. Don 't you think you could manage? " And I said "if I had to I would ", but I knew that he wasn 't even [capable of assisting me] . . . He couldn 't even sit up in bed, let alone walk at that stage . . . (Nancy, p.5).

Another described a sense of powerlessness that the specialists wanted her spouse to return to the out-of-town centre for elective surgery, and she was unsure that additional surgery was the correct option at this time. Carol's perception was that Christopher was not well enough to have the surgery, but the couple were

persuaded by the specialist to proceed. Unfortunately, the elective surgical procedure was not successful, and Christopher had a second operation as an emergency. While they were reliant on the specialist's knowledge, they felt that the specialist did not understand the day-to-day reality of living with fragile health:

. . . the next thing they sent us an appointment for [further surgery] . And I got in contact with them, and said "I'm sorry it's too soon ". I said, "he 's not well enough . . . And I think it 's too soon to go putting him through another operation. " So they said "OK. How about you

coming down and seeing us in October? " [So we travelled to have

this October appointment. And the surgeon] said, "I'd like to do the operation in November "... So he had this operation on 4th

got to give him an emergency operation. [The doctor] said to me "I'm sorry, but things are not looking too good. . . . I said "Now you tell me. I said "1 said to [the surgeon] when we came down for the

consultancy that Ifelt, that it's a bit too soon ". [Later in the day, the

surgeon rang] me and said "My God, if I'd have known what was in there ", he said "1 would never have gone in ". I said "don /t you tell me about it ". "Because you knew . . . You knew what he's been through . . . " (Carol, pA).

Other professionals could not seem to understand the impact that out-of-town hospitalisation was having on the entire family, and how bureaucracy added to the difficulty of negotiating the future prospects for these couples. One participant talked about her battle with Work and Income New Zealand2 (WINZ) as they asked for financial assistance, and her husband applied for a sickness benefit. This battle was the final straw for this couple who were juggling an unknown future as well as maintaining the day-to-day:

It was a huge problem because they wanted to see [him] . And I came back [home ] for a couple of days . . . And went to apply for it, had the appointment and everything, and she wanted to see [my husband] . It was no good seeing me. And I was trying to tell her, "that you are not going to be able to for a long time. [He was in hospital in that

place] and he was not going to be well enough after the operation . . . to

[come home and] to see you ". In the end, [he] ended up having

to . . . he came home for a weekend, that 's right, because he was having the operation on the Tuesday, and he came home on a Friday, and we did it all that day. It took the whole day of doing. Yeah. They

wouldn 't take it from me. Even the letter from the GP. They had to

see him, which was just hopeless (Alice, p.3).

Another talked about the difficulty she had in receiving an accommodation allowance when her husband was hospitalised in the tertiary centre for a second time. In this instance the research participant became caught in the bureaucracy of which cost centre within two District Health Boards was going to pay for accommodation:

... 1 had afight with the [service people] . Atfirst, up to the point

where [my husband had been first treated in the tertiary centre, before

he] was flown home, they paid. No worries. When I went back for

[his operation], they weren /t going to pay. And I had afight with

them . . . This time, they [at the first cost centre] had nothing to do with

it, because it was [another health problem] . So, I tried to get some

Their policy is, ifthey 'reflown down with a nurse, andflown back with a nurse, well that's it. There is really no need for anyone to be there. But they are hard-hearted really, because my husband would not have survived if I wasn 't there. And I'd like to get in front of a panel, andjust tell them that .. . (Carol, p.9).

Although the National Travel Assistance Policy had not been approved at the

time of this research, Carol may still not have received financial assistance. Assistance for the spouse to travel to the non-local centre is dependent upon recommendations of the referring specialist. If the current policy of the regional District Health Board is "if they're flown down with a nurse, and flown back with a nurse, well that's it. There is really no need for anyone to be there ", the referring specialist may still not challenge the local policy, and endorse assistance for the accompanying spouse. Transfers to non-local tertiary centres are everyday for referring health professionals.