The chapter is prefaced by a brief summary of the policy background. Poor health in later life is not inevitable. We live in an era in which society is getting older, and healthy ageing is a common goal across many countries. Nevertheless, as a whole we are more reliant on health and care services as we age. The majority of people over 85 are living with three or more long-term conditions. The NHS often struggles to respond to the needs of people with dementia. Ageism is still widely prevalent, and can have an adverse effect on access to services. There are five stories in this chapter. Robert is in his 80s and has a heart condition and also stomach and joint problems. Rabiya cares for her mum who has dementia and doesn’t speak English well. Rabiya relates multiple experiences of discrimination. James looked after his mother for ten years after her diagnosis of dementia. Sheila cares for her husband who has dementia. She describes the battle to get a diagnosis and care. Kauri’s dad died of pancreatic cancer. She narrates many episodes of excellent care and support given by the hospital and the GP. We invite readers to assess how these narratives compare with the four characteristics of patient-centred care outlined in Chapter 1. As with the other chapters, we pose questions arising from these stories, to simulate thinking and reflection. We have divided these into questions of immediate or operational concern, and those which are more strategic or policy-related.
Healthcare aims to be patient-centred but a large gap remains between the fine words and the reality. Care often feels designed for the convenience of the organisations that deliver it, and not enough around patients and their families, or even around the frontline staff who provide it. Why does this happen? What does it feel like? What can be done about it? This book stimulates reflection on these questions by listening closely to those at the frontline. It provides accounts from patients, carers and healthcare professionals who are patients about what it’s like when services get it right, and wrong, from birth up to the end of life. Quite simply, we want to draw upon the power of storytelling – which is increasingly valued as a tool for learning – to help policymakers and practitioners to understand how to deliver better care. We also hope to enlighten the general reader about how they might go about navigating “the system” while it remains imperfect. There is a growing literature of first-person accounts from patients and from healthcare professionals. This book differs by providing a collection of narratives of experiences of the NHS in England to paint a rich and varied picture. Alongside these narratives we provide some international context, and an overview of the history of moves towards a more patient-centred approach to care. We present the theory and practice of storytelling in the context of healthcare. We also seek to help the reader to draw out the practical learning from the individual accounts.
This chapter contains two stories about pregnancy and childbirth. The chapter is prefaced by a brief summary of the policy background. This includes a rehearsal of some of the enduring challenges around providing person centred care in pregnancy, during childbirth and in the postnatal care period. Persistent and troubling variation in the clinical quality of care is noted, as evidenced by recent public inquiries into maternity services. The first story is told by Cathy, a healthcare professional who became pregnant and then had a rough time, including acquiring sepsis, when she gave birth. In the second story we hear from James about becoming a new dad. We come across James again when he tells of his experiences of caring for his mother with dementia in chapter 7. We invite readers to assess how these narratives compare with the four characteristics of patient-centred care outlined in Chapter 1. As with the other chapters, we pose questions arising from these stories, to simulate thinking and reflection. We have divided these into questions of immediate or operational concern, and those which are more strategic or policy-related.
Narratives of subjectivity alterations in recipients who have received human organs have persisted since the first human heart transplant was conducted in 1967. Reviewing this research in chapter 1 shows that despite anonymity existing between the organ donor family and the recipient, recipients report identity changes post-transplant mainly to do with age and gender, but also lifestyle choices. Several explanations have been offered to explain such a phenomenon and it is not the intention to refute or deny these claims. Rather it is to ask whether, in future, if other kinds of materials (from non-human animals or cybernetic technology) were used, what would the repercussions for human identity be. Because of the persistence of such stories, Chapter 1 questions the modern-day acceptance and reliance of a view of human beings that have an identity that is purely based upon cognitive thought and which is solely brain-centred. Such a view of embodiment – of how a person experiences the relationship they have with their body – is an ideology inherited from the 18th-century philosopher Descartes. Cartesian Dualism stresses ‘I think, therefore I am’ and medical procedures such as organ transplantation as being dependent on a split between a personal identity and body materiality. However, other philosophical positions, such as phenomenology based on the work of Merleau-Ponty, suggests that ‘I am, therefore I think’ and that embodiment is the co-existence of subjectivity and corporeality. Body modification through transplantation (or amputation) also creates a situation when the body, mostly ignored in daily life, becomes present or an ‘absent absence’ (Leder, 1990). Awareness of embodiment as ambiguous may be created as the precondition for separation of the body from the person implies that there was unity prior to reflection ‒ I have a body and I am a body. By centring this in terms of a body that has an inside and an outside in social and cultural terms leads to understanding why some organs are said to be ‘male’ or ‘female’.
If you had to choose between animal, mechanical and human materials to replace, repair or regenerate the human body, what would you choose? If people were made to make such a hypothetical choice, what would their choices reveal about the experience of being embodied? Given that these are socially and culturally meaningful materials, how do such beliefs interact with experiences of embodiment? In order to explore such questions, a small focus group study was undertaken followed by a large-scale representative survey making participants and respondents rank their most preferred options from a list: human 3-D bioprinted organs constructed from cells of the recipient; an organ from a known living organ donor; an organ from a deceased stranger, a mechanical device and finally an organ from a pig (a procedure known as xenotransplantation). Findings clearly show that all the human options are most preferred for various reasons; one of which was reducing the possible risk of subjectivity alteration that came with xenotransplantation. This was therefore also part of the reason as to why non-human animal transplantation was the least wanted option. Using Sanner’s (2001) theory of ‘contamination’ as an important reference helps understand how meanings attached to organic material are porous and transcend biological boundaries between bodies. Narratives about xenotransplantation and human organ donation therefore are able through contamination processes to modify the recipient’s body and alter subjectivity. Despite these narratives of alterations occurring on the inside of the body, this problematizes the individual’s body and her identity; changing what she is inside and altering who she is on the outside. At a point in-between these two extremes of human and non-human animal were mechanical implants, and being ‘for’ or ‘against’ mechanical implants appeared connected to fears about technology breaking and malfunctioning as well as concerns about having a ‘foreign’ device in the body.
Largely going unnoticed there lies a 21st-century identity crisis generated from the overwhelming desire of human beings to repair, replace or regenerate the human body. Embodiment is ambiguous and is a state that becomes particularly acute when technological and organic modifications to the inside of the body alter subjectivity – this is thought to happen because the body and identity are one and the same ‒ prior to an individual’s reflection when the body can be separated. Transplanting organs from humans and non-human animals therefore contaminates the recipient, not only changing their body, but changing who they are. On the other hand, technological modifications are incorporated into the human body and identity and do not cause any concerns about subjectivity alteration. Rather, there can be a willingness to acclimatise with a cybernetic system and its coming to be incorporated into the organism to form a part of their identity in the way that other corporeal structures such as organs are. Nevertheless, the ability of the everyday cyborg to acclimatise to their new techno-organic hybridity is not necessarily a case for celebration. The increasing biomedical reliance of technoscience is generating new vulnerabilities that is creating new strategies of ‘unhealth’ and indeed may be thought of as a new form of (bio)medical nemesis (Illich, 2003).
Using a range of social science methods and drawing on the sociology of the body, biomedicine and technology, Haddow invites readers of ‘Embodiment and everyday cyborgs’ to consider whether they might prefer organs from other humans or non-human animals (known as xenotransplantation), or implantable ‘cybernetic’ technologies to replace their own? In discovering that individuals have a very clear preference for human organs but not for the non-human, Haddow suggests that the inside of our bodies may be more important to our sense of identity than may have previously been thought. Whereas organs from other (once) living bodies can contaminate the body of the recipient (simultaneously altering subjectivity so they inherit traits e.g. gender), cybernetic technology is acclimatised to and becomes part of the body and subjectivity. In organ transplantation the organ has the potential to alter subjectivity – whereas with cybernetic technology it does not alter identity but is incorporated into existing subjectivity. Technologies are clean from previous organic fleshy associations and although they may malfunction or cause infection, they do not alter identity in the way that an organ might. Yet, we are arguably creating a 21st-century identity crisis through an increasing reliance on cybernetic technologies such as implantable cardiac defibrillators (ICDs) creating new forms of ‘un-health’ and a new category of patient called ‘everyday cyborgs’ who have to develop strategies to incorporate device alienation as well as reinserting human agency over ICD activation.
Everyday cyborgs are created through the implantation of a cybernetic device in the form of an ICD that will protect them from a sudden cardiac arrest (SCA). Using their voices and of those that live with them, I relate their stories of cyborgisation, beginning from the reasons why they came to be a techno-organic hybrid mediated through the medical system. With no space inside their bodies to accommodate the ICD, it sits on the in-between of inside but also as a reverse silhouette on the outside. Taking the outside-in, the ICD generates a body whose ‘absent absence’ is caused by invasion and alienation (Leder, 1990). Eventually the ICD sinks into the body, losing its prominence, and acclimatisation to the new bodily hybridity is a process that follows implantation: accepting the ICD as a corporeal structure and becoming an important ‘part of me’. Nevertheless, the presence of the ICD continues to alter the daily life of the everyday cyborg from where they can go to how they interact with others. Spouses and partners of everyday cyborgs are grateful for the ICD that allows them to stand down from their watch offering day and night insurance against SCA. The everyday cyborg complains about the over-protectiveness of loved ones who now see their role as protecting everyday cyborgs from harm they might do to themselves (as opposed to protecting them from the slim possibility of malicious hackers). Indeed, the everyday cyborg reconciles the lack of autonomy they have over the ICD activating through: 1) viewing the ICD as doing something ‘for’ them rather than ‘to’ them, and 2) blaming excessive activities causing the ICD to shock them relocates agency with the cyborg.
Animal, mechanical and me: Technologies that alter subjectivity
Human organ transplantation has never met the demand for organs, and in all probability never will. The answer to the current shortage therefore is not to alter systems of organ procurement but to examine different sources. This book explores the repercussions of using different types (mechanical) and kinds (human and non-human animal) of materiality to do so and how such technologies change the human body, personal identity and relationships with others (and indeed with other species), questioning the turn to cybernetic implantable medical technology and the creation of new techno-organic hybrids called ‘everyday cyborgs’. These everyday cyborgs are not the same as the more well-known cyborg-as-monster representations in film and literature but share some similarities with the original definition of the term, inspired by envisioning what closed loop feedback systems would be required to survive future space travel (Clynes and Kline, 1960). Although the concept of the everyday cyborg shares the ideation of pulling down the binaries that as people we have created (Haraway, 1991) when examining current medical practices of using cybernetic systems such as implantable cardiac defibrillators (ICD), there is social stratification in cyborgisation in terms of who benefits from the technology. But the very question of how this technology comes to be experienced as a ‘benefit’ requires further exploration.
Xenotransplantation and 3-D bioprinting are not yet viable solutions to repairing human organs, however medical reliance on technologies, some implanted and increasingly with ‘smart’ functionalities, is. Some implantable medical technologies such as cardiac devices, cochlear implants and deep brain stimulators are autonomous, intelligent and responsive to the extent that they fulfil the criteria of a cybernetic system as originally defined as a closed loop feedback system. However, ICDs go beyond this functionality and have command-control-communicate intelligence (C3I according to (Haraway, 1991). Implanting cybernetic systems into organisms creates cyborgs. Yet using the term to describe people is highly controversial, mainly because the cyborg is commonly associated with the monsters represented in film and books. Although authors in science and technology studies use the cyborg term in a more nuanced way, little is known about how individuals who experience cyborgisation processes feel or have had their voice listened to. In this chapter, I outline the various cyborg representations, show how they can be used to apply to different people, as well as advocating for the need to reclaim the ‘everyday cyborg’. This is because the everyday cyborg makes the stratification of cyborgisation visible (demonstrating the gendered nature of ICD implantation, for example). But ‘everyday cyborg’ also highlights the existence of unique challenges that may be faced. These challenges relate to acclimatisation after the implantation of the ICD which compromises body image and integrity, affecting identity (so called ‘Triad of I’) and coming to terms with the activation of the device when it emits a shock.