The emergent theme of recovery milestones that was signified by the informants in the findings represented the third phase of recovery. This was most recognisable when the participants contemplated their present situation and linked it to their return home. Being discharged home from hospital was the most important milestone within the recovery construct of this group of patients as it represented a step-wise (but perhaps incomplete) separation from the medical gaze. This was synonymous with the patients regaining some (but not all) of the control of their lives thus achieving a balance between their independent private lives and the necessities of the medical gaze. As this finding was not evident within the extant literature, it is possible then that patient
determined recovery milestones have not been considered as reliable markers of recovery and it may be that recovery milestones have been viewed as minor, trivial issues rather than important steps incorporated into a persons generalised resistance resources. Whilst the importance of recovery milestones determined by patients has been recognised in other disciplines within the medical gaze, such as stroke recovery (Glass, et al, 2000) and within the palliative care field (Pinnock, et al, 2011), it has not been done so in significant detail.
Regaining independent mobility and being able to control their own body
recovery target. However, this marker was not only framed by the physical act of mobility, it had a number of psychological manifestations. The issue of mobility
commenced during the existential crisis and persisted throughout the hospital phase of recovery and for some, influenced their post-discharge anxieties. The identification of mobility as a recovery milestone gave patients purpose, direction and determination during their interactions with the medical gaze. With varying degrees of success, their developing generalised resistance resources provoked them to manipulate the medical gaze to their advantage in achieving their desired goals. It was noticed by a number of patients that the medical gaze had also placed significance against their ability to
mobilise, this appeared as a rare, shared goal for both the patient and the medical gaze as a clear signifier of their readiness for discharge from the hospital.
7.3.1 Returning home and to normal life
The ultimate recovery goal that emerged from the data was that of a return home. Whilst most of the participants were strongly positive, others retained concerns, whilst the return home was considered a sign of recovery progress, they harboured
reservations and insecurities about leaving the perceived safety of the hospital. The diversity of the responses may have been a reflection of the variation of their respective personal circumstances coupled with their perceptions of their psychological safety, which may have been further determined by their abilities to cope (using their GRR’s). Two patients, who had prior experience of recovery from major surgery, were able to benchmark their important recovery milestones during this recovery. They both referred to their previous recovery experiences frequently and argued that this provided them with important and helpful insights as to how things were likely to proceed and they considered that they were better prepared (psychologically) than previously to endure their recovery.
If the medical gaze is genuinely concerned with the provision of holistic, patient centred compassionate care, as would appear evident within contemporary national political (and professional) healthcare policy statements (The Mid Staffordshire NHS Foundation Trust Public Inquiry, 2013; National Advisory Group on the Safety of Patients in England, 2013; Keogh, 2013), then listening to the patient narrative is crucial. The rationale that led patients to view their discharge from hospital as the most
significant recovery landmark contained a range of interesting and informative
components that deserve the considered attention of all of those who are responsible for the safe delivery of healthcare. This was not evident from the reported experiences of the participants.
Participants frequently mentioned simple quality of life issues, such as regaining control of their own personal space and being amongst the familiar comforts of home as key recovery milestones. Quality of life is a subject area that is well represented as a reliable and desirable outcome metric within the literature. Within the objectivised world of the medical gaze a range of simple survey instruments have been developed and frequently utilised to measure quality of life (Moulaert, et al, 2009; Elliott, et al, 2011), however none of these measures were derived from a patient’s perspective.
Other similar simple but problematic quality of life issues were raised by the informants and these acted as positive motivatory drivers for recovery and to return to the privacy of home. Experiences such as the disturbed nature of hospital sleep, the noises of neighbouring patients in the ward or being woken by nurses to take medicines featured prominently in the participants accounts. Some questioned the purpose of remaining in the hospital, seemingly doing very little whilst receiving little or no attention from the medical gaze.
The re-establishment of their independence and regaining control of their own lives was an important recovery milestone that was part of the return home and the return to the routine order of their lives. However, the patients detailed a range of challenges that they needed to overcome for this to happen and some indicated that meticulous
planning and preparation would be required for their discharge home. In this regard, the medical gaze appeared to be miss-aligned with the needs of the patient, some patient’s felt patronised, poorly understood and significantly under-supported. The net effect of these experiences of the inadequacies of the medical gaze left participants feeling psychologically vulnerable and perhaps not in full control of their situation. This may have been a reflection of under-developed coping mechanisms (GRR’s) but in any case the medical gaze considered that they were medically fit and should be discharged from hospital care. In light of this dissertation, this represented another significant failure by the medical gaze to provide patient-centred, holistic care, and this placed a challenging
(retrospective) burden upon my dual role as the outsider conducting the research and an insider that recognised the problem.
7.3.2 Recovery and the return to working life
The medico-sociological preposition that placed illness as a societal deviancy (Parsons, 1951) that requires control and input from the medical gaze (Foucault, 1977) has been discussed in detail in chapter two. Within this construct, the detrimental effects of biographical disruption that illness has had on the working life of people and society as a whole is widely recognised. Five of the participants in this study were of working age and in employment at the time that they experienced their heart problem and
subsequent cardiac arrest. Two of those five participants raised the issue of potential or actual financial compromise and one participant identified their financial vulnerability as a concern. However, amongst the remaining individuals, who all expected to return to work, there were a range of expectations, anxieties and concerns regarding when they would return to work and how their job role might be affected. The issues of returning to work and the associated financial challenges are evident within the literature
(Arawwawala & Brett, 2009 and Puβwald et al, 2000) as was the provision of
appropriate, patient-centred support (Prinjha, Field and Rowan, 2009). Herein lies a paradox in that the medical gaze appeared indifferent to such concerns, at least that was the experience of patients in this study.
The key milestones identified by patients were centred on functional mobility, returning home, independence and returning to work. It appeared that the use of milestones as progress markers provided a useful structural framework for patients as they recovered. It would be reasonable therefore to consider that the development of individualised recovery milestones form a critically important part of their generalised resistance resources that strengthen the sense of coherence and sit within
Antonovsky’s model of salutogenesis (1996). Having awareness of patient derived recovery milestones and the value they have in promoting a positive recovery is likely to inform healthcare professionals and influence the nature and quality of psychological and physical support provided in the course of their duties. The next section of this chapter discusses this in context with the structure and function of the Foucauldian concept of the medical gaze (1973).