Aprendizaje desde la sistematización

As patients are transferred to a step-down ward they gradually learn about the illness that has consumed their body. Time had stood still for the patients; it is not measured by days. They are in a temporal place of past, present while trying to make sense of

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the future and their lost time. Through the trajectory the shape of time was altered by suffering, confusion, anxiety, hallucinations pain and discomforts.

Their journey of piecing it all together began when patients became physically and mentally well enough to process the information told to them by family and healthcare professionals. Because patients feel so physically unwell initially, their attention is fully focused on dealing with their immediate physical problems including fatigue, pain or a dry mouth.

I didn’t actually realise….it was sometime afterward…I think after I came to [the ward] and on several occasions they [healthcare

professionals] said when I was over there [in ICU] I was a very sick man…but I don’t think I was conscious of that aspect…my main concern was … I was conscious I was kept so long nil by mouth and not allowed to eat or drink…my main concern on being nil by mouth was the dry mouth, the roof of my mouth and the dry lips which seemed to be cracking up but I’d completely lost any appetite. (C1,

Patient interview)

Apart from the immediate physical needs that prevented patients realising how sick they had been, patients could also choose to psychologically separate themselves from needing to understand their illness or the consequences of it. They waited until they were well enough to cope. Firstly, they need to put all their energy into healing. For a patient who had a relative die in the car accident, which caused her admission to the ICU, she explains how she had to try and not think about the death of her relative:

I was surprised I didn’t get more badly injured [in the accident] …but I think I put it behind me until I’m out of hospital…I put the fact that [relative] died behind me so I don’t worry all the time…because… [you have to concentrate on getting better]…that takes all my energy. (C2, Patient interview)

It’s like journeying through uncharted territory as patients try to comprehend what

family tell them about their illness. Discovering how sick they were and what the family have experienced gives them a sense of concern in terms of what family have endured:

The children…they kept telling these things and I couldn’t take it in because I have never been a sick woman…and these experiences and they said “Mum we nearly said goodbye to you”…it was a difficult time for my children. (C3, Patient interview)

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Making meaning of being critically ill occurs through the recovery process. Patients try to discover the gap of weeks to months which is missing from their memory. As they recover they learn about their illness. These stories are intertwined with the distorted experiences they have of their critical illness. This can mean patients are reluctant to learn about what has happened in the ICU and avoid some conversation about it.

Patient: I begin to wonder whether some of the images I have in my mind are true or not because I lost all track of where I was so if the surrounds are true …I somehow doubt it…

CM: You should go back to ICU to have a look where you were.

Patient: No – I don’t think so…no…I don’t want to remind myself… that part is over and done. (C1, Patient interview)

The distorted memories patients have after a critical illness are well described in the literature (Palesjö et al., 2015; Rattray, Crocker, Jones, & Connaghan, 2010). Without acknowledgement of these distorted experiences, patients have difficulty dealing with this phenomenon (Rattray & Hull, 2008). The need to debrief and support patients post-ICU to deal with these memories improves their psychological wellbeing (Harvey & Davidson, 2016). In a study of patients four to six weeks after ICU discharge, predictors for post-traumatic stress symptoms were found to be memories about pain, lack of control and the inability to express needs (Myhren et al., 2009).

As patients become well enough to understand their illness in enough detail there was a realisation they could have died from their illness. This intensified their emotional burden and they needed a lot of time to process and come to terms with this new knowledge:

I have figured out my illness enough to know that I am still here

[starts to cry]…my wife has told me the stuff I need to know…how bad I really was, which is probably a good thing, I can’t remember, and how it affected my family, that was bad [becoming tearful]…my niece nearly passed out…my brother choked every time. (C6, Patient

interview)

As they comprehend what has occurred, this is marked with profound sadness at the thought that they nearly died, what their family has endured and the aftermath it has taken on their body:

Family member: We’ve done a lot of talking about it [being sick] …it was quite emotional and raw…but we have moved on a lot…I

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took photos…once a week and over time I’ve shown him those photos and explained what part of his journey he was at, at the time…so yeah we relived all that…

Patient: …it’s like six months of my life that’s been taken from me.

(C6, Patient interview)

Coming to terms with the possibility of dying during the person’s critical illness brings sadness and distress. It changes who they are with the realisation they have faced death and survived. It is a difficult and painful process that is experienced during this time.

ICU has been described as the ‘holy ground’ where people’s experiences of ICU are carried with them and have a crucial significance in how their lives are shaped thereafter (Egerod et al., 2015b; Papathanassoglou & Patiraki, 2003). As the patients’

illness trajectory progressed their physiological functioning was greatly affected afterwards and, for most participants, they were not able to go home for up to six months after their discharge from the ICU. Physical, mental and social problems after ICU are well documented in the literature, with recovery being long (Rattray, 2014; Rattray & Hull, 2008; Storli et al., 2008; Svenningsen et al., 2015). Although the case

of a prolonged critical illness comes to an end for this study, patients’ work continues

as they attempt to rebuild their bodies and lives beyond the confines of the ICU.

Aligning to the Corbin and Strauss Trajectory Framework

The trajectory of the case of a prolonged critical illness demonstrates similarities to the Corbin and Straus (1988) chronic illness model as seen in Table 15. Corbin and Strauss argue that through new research a greater understanding of a particular disease, new emergent diseases or particular phases could occur. The phases of a prolonged critical illness set the ground work for further work into the complexity of illness as technological advances change the course of an illness with critically ill patients. The course of a prolonged critical illness does not end with an inevitable downward trajectory. Although at times throughout the illness course, it appeared that this could be a possibility. The possibilities of these patients returning to their pre-critical illness health status was not studied, but it appeared to be unlikely that this was going to occur. Corbin and Strauss (1992a) emphasise that with any chronic illness, people have to come to terms with the illness and symptoms, regimes and side effects. But the trajectory model reminds us of how healthcare professionals, family and the patient themselves work to manage and lessen the impact of symptoms, side effects and the impact on their identities and future well-being.

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Table 15 Comparison of Corbin and Strauss phases and prolonged critical illness Corbin and Strauss Trajectory

Framework

Trajectory of a Prolonged Critical Illness

Corbin and Strauss

Phase

Corbin and Strauss

Definition Prolonged critical illness within this chapter Phases presented 1. Pre-

trajectory

Before the illness course begins, the preventive phase, no signs and symptoms present Co-morbid conditions; severity of physiological assault 2. Trajectory onset

Signs and symptoms present

Severe signs and symptoms 3. Crisis Life-threatening

situation Sudden admission to ICU

1. An

overwhelming pre-set

trajectory 4. Acute Active illness or

complications that require hospitalisation Illness progression in the ICU 2. A long wavering trajectory 5. Stable Illness course/

symptoms controlled by regimen Weaning from life-sustaining treatment Transfer to ward Rehabilitation 3. Emerging with a failed body 4. Working to piece it together 6. Unstable Illness course/

symptoms not controlled by regimen Conclusion

This chapter has presented the four phases of a trajectory of a prolonged critical illness as experienced by patients in the ICU with the New Zealand public health system. Common to all patients were these four phases that defined their illness. Each phase was defined by common physiological and psychological characteristics and issues that shaped the trajectory for the patient. These four phases have been aligned with the Corbin and Strauss illness trajectory framework.

The following chapter presents the trajectory which the family endured throughout

their family member’s critical illness. Their trajectory is shaped by the patient’s

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Chapter 8 – Relentless Uncertainty – The Family