Probabilidad frecuencial

Being-in-suspense was exacerbated when the research participants felt that treatment was required, but they could not get the health professionals to take

any notice. Although Melanie and Y oland spent six years returning to the

doctor before Melanie was finally diagnosed, Zoe and Trevor were not going to be so patient with the health professionals. Zoe was frantic with worry,

which gave her the drive to be detennined that the GP would make a specialist

referral:

[He] kept going back. And he [the doctor] did [tests] . . . and said "There is nothing wrong .. . " and then finally you [Trevor] said to me "there is something really wrong ". And I said, " Right. I'm coming with you this time, because I think that you have got [this]

problem. And that is when we saw the doctors. And I said to him

"I think there is something wrong ". And he said " Well his [tests]

show there is nothing up ". And I said "but he has got [disease]

history, history of [these] problems in his family. And I am not leaving here until you refer him [to a specialist)". And he said "I am telling you there is nothing wrong ". [We got the referral and saw the specialist; Trevor did have this condition] (Zoe, p.2).

While projecting forward to a future of supporting a sick spouse occurred at all stages on the disease continuum, being-in-suspense was intensified by the uncertainty of when the spouse would be transferred to the non-local tertiary centre. The lack of knowing the time of treatment, or waiting for the condition to deteriorate, resulted in some of the research participants perceiving that they were unable to hand over the care of their loved one to the health professionals, and they needed to maintain watch. It was not the medical disease that caused this need to maintain watch; it was the dis-ease that led to the constant being-in-suspense and being-in-a-state-of-not­ knowing:

[The non-local tertiary hospital discharged him and said], "let 's just see how you go on your medications ". And they put him on the usual medications. But he kept getting [continued signs and symptoms]. He would wake up in the middle of the night in pain. I kept a little graph of what was happening ... (Jan, p. l ).

It was not only the inability to convince the health professionals that the spouse was unwell, the uncertainty of the time frame for treatment added to the

literature that indicates waiting for surgery has a negative effect on couples' well-being (J6nsd6ttir & Baldursd6ttir, 1 998; Mulgan & Logan, 1 990), with those waiting for surgery reporting that life is put on hold as couples struggle with a faceless bureaucracy (Sj6Iing, Agren, Olofsson, Hellzen, & Asplund, 2005). The findings of the current study identified that not having any control over the time frame for the operations or treatment in the non-local tertiary centre affected ten of the couples who waited each day for their spouses to be sick enough to warrant transfer and additional treatment. Each day the couples measured time until treatment was offered, with the couples

wondering whether this would be the day of transfer. Not only did awaiting3 transfer compromise the immediate and long-term future, the couples also had to prepare work, children, and the household for the possibility of transfer that could occur at any time. The unknown associated with awaiting added to the anxiety and distress. Furthermore, they could not envisage how their world would be as a result of the out-of-town hospitalisation. The research

participants spent this time in anticipation and wondering what else would be occurring in the world as it was becoming for them.

The couples also adjusted their lives to minimise the effects of the medical condition, and to gain some control over their world. One couple, who had a long waiting-time before treatment was offered, did not tell their children that their father required treatment for cancer. The spouse wanted to have all information before he informed anybody else. Life, for these research participants, alternated between being-in-suspense, and falling back into being-in-the-world as they continued with living.

And 1 think then we actually had to wait ... 1 suppose for the [test

results] to come back which took a wee while. That was quite

stressful ... This was March/April when we first found out about it, so we had about a six-month wait (Nancy, p . l ).

Although Nancy knew that treatment was to be offered, and other research participants, such as Jan, waited for the spouse's medical condition to worsen, health professionals and research participants had different ideas about how 3 I have used the expression awaiting, rather than waiting, as awaiting better describes the waiting for. . . (diagnosis, treatment, transfer, positive or negative outcomes of the disease, or

urgently this treatment should be provided; couples being told that treatment was required "but there is a long waiting list" (Jan, p. l ). It has been

acknowledged in the literature that distance from service (Cass et aI., 200 1 b; McDonald & Russ, 2003), and funding systems (Cass et aI., 200 1 b; Degeling et aI., 1 999; MacCorrnick & Parry, 2003 ; McDonald & Russ, 2003) add to the burden of managing illness and can delay referral and treatment options (Arnesen et aI., 2002; Cass et aI., 2002). None of this literature discusses the correlation between distance from service and stress as each research

participant waited for treatment. As two of the research participants said:

. . . We were told that she was on the urgent list, and they said it

would be quick; she would be in the hospital real quick. And I think she had to wait a couple of months . . . it was quite a long time. I remember them talking about urgent, and for me urgent meant the next day ... When I questioned the surgeon, he said, "oh in actual fact that was pretty quick". So my idea of urgent was the next day, and their idea of urgent was in the next couple of months ... We really didn 't know quite what was going on at that stage (Paul, p.2).

Well he was diagnosed about four months earlier, and that he would need [this surgery] . But we waited and waited ... [About two years earlier, he was visiting family and developed

symptoms. The regional hospital he was admitted to] had wanted

him to go to [a tertiary centre], but [the centre] didn 't want him because they were busy, and because of the funding (Andrea, p.4).

Waiting leads to a loss of situational control (Merz, 1 998). In the context of the current study, situational control refers to opportunities the couples had to anticipate treatment in the non-local tertiary setting, and expectations of the transfer. In contrast, awaiting occurred when the couples not only faced uncertainty, but perceived that they had minimal control over the situation. Awaiting the outcomes added to the state of being-in-suspense. Being-in­ suspense oscillated between stages of awaiting, anticipation and expectation,

as the research participants and their spouses entered stages of the unknown throughout this time.

The relationship between being-in-the-world and the potentiality-for-being underpins the sense of powerlessness in awaiting treatment and the outcome

of the non-local tertiary hospitalisation. Being-in-the-world means Da-sein

closes off from the potentiality-for-being, because there is no conflict between

what one is doing and what one ought to do (Heidegger, 1 962). In the case of the current study the couples' anticipation and expectations of the non-local

hospitalisation were also closed off to the potentiality-for-being. However, in

contrast to Heidegger's explanation that Da-sein is closed off because self­

understanding is congruent with being-in-the-world, the research participants

were closed off because the world, and therefore the potentiality-for-being,

was surrounded by uncertainty.

The transfer to the out-of-town centre did not guarantee treatment, thus

prolonging the state of being-in-suspense. Not only was there a loss of

situational control, the couples also wanted to minimise what they saw as unnecessary delays that would cause the spouse to have prolonged periods of time in the non-local tertiary centre. As one research participant said:

And we had to hang around [the tertiary centre] probably for about a good week before they decided what they were going to do, which was hard; not knowing whether they were going to operate (Alice, p. l ).

This time was particularly difficult for the research participants if the delay in surgical intervention was not to stabilise the spouse's medical condition, but a wait for the opportunity to operate, or for treatment such as radiotherapy. Any delay in treatment resulted in the research participants awaiting and not being in harmony with others' concepts of time. Not only did the delay in treatment cause them to fear the long-term ramifications of cancer, heart disease, or the other conditions that caused the non-local hospitalisation, the delay also resulted in extending the length of time that the spouse was hospitalised in the non-local tertiary centre. The research participants' perceptions were that the medical conditions were severe enough that transfer was required. However, if there was no immediate action in the tertiary centres, the couples questioned why the centre had accepted the patient at that time. The participants of the current study tried to maintain control of the situation by comparing their spouse's medical condition to other patients in the ward, to ensure that no one 'jumped the queue' .

[My husband] seemed to be getting further and further down the list ... So I went and spoke and said, "I am going to be really upset if that man goes before my husband. We have been here for five days " (Zoe, p.6).

Because the spouses had medical conditions that could not be treated at the area hospitals, they were reliant on technology available in the non-local centres for their treatment. Two of the spouses found, however, that their treatment was delayed because the radiotherapy machines had broken down. Not knowing whether the radiotherapy machine would be operational in time for her treatment stressed one research participant's spouse, and consequently the research participant as well. Their world, that was already chaotic, became a continual state of suspense:

. . . once the day is out, they can 't reschedule, you just have to go back a week [in the schedule of treatment]. And you got all this, "well I'm sorry, what else can we do? " And it didn 't just happen once, there were two or three times, where an appointment [was broken because the equipment was not working] . And [her] point quite often was "You know they tell you that you have got to relax and keep calm. But you always . . . There is always something to get me ". There was always something that kept you anxious. And you didn 't, you couldn 't rely on the fact that this was going to happen ... You sort of went hoping each time that this is what it was going to be (Edward, p.6).

The potentiality-for-being was constantly oscillating between anticipating the further unknown, and adapting to the everyday in a strange environment. The research participants were in a state of suspension within the world as it was at that time, and closed off from a potentiality-for-being. As two participants said of this time in their lives:

It was just the waiting. And the fear of the unknown. You are going into a phase, if you like, of something you had never experienced before .. .It is always the unknown of what 's going to come ahead. Of whether the operation is going to be successful. Is there going to be some after effect that we are going to have to deal with, or .. . ? Is it not going to be successful or .. . ? I suppose, yeah, it is all those things really. But I tried not to think about them too much because I kept making day-by-day conversations. And wejust lived day by day . . . (Zoe, p . 1 6).

But you didn 't know from day to day exactly what was happening. You would tell the family one thing, and the next day it would all change again. It was a lot of work (Andrea, p.3).

The research participants were in a state of being-in-suspense of the present, because their previously understood interpretive frameworks did not enable them to make sense of being-in-the-world; they could not be there, as they did not know which direction the future would take them, or what would be the outcome of having a spouse with the specific medical condition.