Bodies and Suffering

Emotions and Relations of Care

Ana Dragojlovic, Alex Broom

• Publisher: Routledge
• Year: 2017
• Print ISBN:
  9781138885264
• eBook ISBN:
  9781317504375
• Topic: Social Sciences
• Subtopic: Health Care Delivery
• Index: Social Sciences

This book is a critical response to a range of problems – some theoretical, others empirical – that shape questions surrounding the lived experience of suffering. It explores how moral and ethical questions of personal suffering are experienced, contested, negotiated and institutionalised. Bodies and Suffering investigates the moral labour and significance invested in actions to care for others, or in failing to do so. It also explores circumstances – personal, political and social – under which that which is perceived as non-moral becomes moral.

Drawing on case studies and empirical research, Bodies and Suffering examines the idea of the suffering body across different cultures and contexts and the experience and treatment of these suffering bodies. The book draws on theories of affect, embodiment, the phenomenology of illness and moralities of care, to produce a nuanced understanding of suffering as being located across the assumed borders of time, space, bodies, persons and things.

Suitable for bioethicists, medical anthropologists, health sociologists and body studies scholars, Bodies and Suffering will also be of use on health science courses as essential reading on suffering bodies, mental health and morality and ethics issues.

Part 1

Suffering, bodies and disease

1 Who’s suffering?

Professional care and private suffering

Introduction

As we outlined in the Introduction, suffering presents as an affective assemblage, of which relations of care (both formal and informal) are an inextricable part. Suffering is necessarily about care and in this way, it is also necessarily about others, and about the intersubjective realm. This includes consideration of what caring (or non-caring) relations may or may not offer to ‘us’ (carer) and ‘them’ (patient/person). And crucially, for this chapter, it raises questions of where suffering is, or lies, in the context of caring relations. In the context of affliction or even the dying process, suffering has generally been explored simply through the experience of the person who is ill. Or, in the context of work on bereavement, through the experience of loved ones, carers or families who are themselves suffering. The ‘caring’ professions, as it were, including nurses and doctors, who are tasked with ‘treating’ and ameliorating suffering, have not figured in these explorations to any meaningful extent. This is an artefact of the tendency to construct the carer/care for dichotomy within the context of the institutionalisation and professionalisation of care in modernity. But what do those working in the ‘caring’ professions experience, and what is their contribution to the inter-subjectivity of suffering? Are they merely distanced, dispassionate, ‘professionals’ and being supportive? Or is there much more to, and underlying, (formal) caring encounters than the carer and the sufferer duality? Where does suffering really lie within this caring assemblage? What does suffering do, exactly?

The suffering of doctors and nurses, we posit here, reflects enduring problematic divisions and erroneous distinctions within the formal caring dynamic (e.g. cared for, caring; in pain, treating pain; see Chattoo & Ahmad, 2008). We seek to challenge and unravel the (in this case formal) affective relations of care, and the moral, ethical and affective struggles that being in and being with suffering may induce. We ask, where does suffering really lie in this encounter? Who is holding it, sharing in it, and acting in relation to it? To answer these questions, we offer an analysis that pursues a relational ontology of being in care (rather than offering or receiving it), and how feelings move across persons to create particular atmospheres (i.e. dread, hope, hopelessness). In this way we aim to explore care as the relational context of – and for – suffering. Of particular importance here is how the silence of clinicians (as feeling) has reified such exchange models (carer/cared for), and dualisms of care as being ‘provided’ and ‘received’. This, in turn, locates suffering erroneously within the realm of the ‘cared for’; an assumption that is not only inaccurate, but potentially undermines the care provided and viability of caring practices.

We focus on a particularly challenging site of caring relations and affective exchange – those at the end of life – to explore how being with suffering is in fact being in suffering for healthcare professionals. That is, we aim to ‘out’ the feelings of clinicians in order to illustrate the circulation of affect within healthcare professionals’ own relations of care, and the co-production of suffering as an affective assemblage. As Sara Ahmed argues, affective dynamics have generative qualities: ‘We are moved by things. In being moved we make things’ (2010, p. 25). This is in turn the case in medicine, and that it does indeed produce ‘things’.

In this chapter, we draw on a particular field of medicine and nursing to explore the inherent relationality and inter-subjective character of suffering during and in care. We examine the particular context of medical futility and the (challenging) transition to the end of life. This is a challenging relational moment in the therapeutic landscape, unsettling the (multifaceted) desires of its subjects (e.g. doctor–longevity/core; patient–hope/recovery), and thus offers a prominent site of interpersonal tension, tussle and often suffering (MacArtney et al., 2015, 2017). This moment also challenges all actors in the assemblage of care, including doctors, nurses, families, and the person who is dying. As we will show in the narratives offered below, in the context of negotiating treatment and care in oncology, palliative, and end-of-life settings, doctors and nurses themselves engage in what is often known as ‘sentimental work’. This work involves intense interpersonal relations, and it raises questions around who is suffering, for what reasons, and to what end (i.e. survival, longevity, denial). Thus, this chapter will focus on the ‘labour of caring’ for the dying, and the character and underpinnings of suffering therein for doctors and nurses in particular.

We argue that while the person who is dying is rightly recognised as an important ‘suffering subject’, there are other individuals and affective dimensions that have been often unappreciated in this moment. These include subjects who cannot be separated from the experience of the person who is dying and their suffering. The affective atmosphere, in the context of advanced cancer, futility and the end of life, holds (and is held up by) many actors in the life (and death) of the individual person. These actors include doctors and nurses, who, in seeking to professionally ‘manage’ suffering, suffer themselves, experiencing enmeshment, melancholia, dissociation, and many other conditions in their relational attempts to ‘deal with’ the suffering of an Other. We will use this moment to illustrate how suffering is a collective act, as well part of an individual narrative/experience. We interrogate this by asking: what lies beneath the surface of therapeutic social relations and professional acts and performances?

In exploring suffering as a relational assemblage, this chapter places the clinician (whether doctor or nurse) at centre stage in suffering as well as the ‘delivery’ of care. This aim augments Chapter 2, which focuses on suffering amongst informal carers (family members and partners) for people who are dying; and Chapter 6, which focuses on the experiences of people living with advanced cancer. In the current chapter, we emphasise the importance of an understanding that suffering ripples across institutional, interprofessional, and interpersonal social relations. Moreover, we emphasise that clinical/psycho-social notions are often used to make sense of the affective dimensions of care for health professionals who evade the relational dynamics of care and collective suffering. The ‘good professional’ is often conflated with the distanced, yet compassionate, provider of care (Broom et al., 2016).

A good example of the reductive conception of care and suffering, regularly used in the therapeutic literature is ‘compassion fatigue’ (e.g. Abendroth & Flannery, 2006). This concept aims to normalise a withdrawal from ‘feeling things’ on the part of health professionals. The concept of ‘compassion fatigue’ does little to account for the affective entanglements of professional (medical and nursing) work. Nor does it account for the intensities circulating between bodies (Dragojlovic, 2015; and see also the Introduction to this book). In fact, such notions reinforce spurious assumptions that suffering lies with the patient (in this case, the patient who is dying), and that a unilateral professional compassion (which waxes and wanes) operates in relation to a non-specific Other (who holds and experiences the suffering). In unsettling this persistent representation, we focus here on how suffering, and the affective dimensions therein, lie across persons at the end of life.

We also posit here that it is more than merely clinicians being part of suffering; rather, they offer things to these social relations including: a sense of their own failure to help or master disease; their anticipatory grief of a loss of therapeutic alliance; and, an anticipated loss of personal relationships with patients. These affective dimensions are often encoded in the rationalities of the therapeutic encounter, and (we argue) produce forms of suffering. These forms include the need to ‘hold on’ to life even in the ‘face of death’; and a collusion between doctor and patient that articulates the frustrations across persons (doctor, patient, family) (McNamara et al., 1995; Melvin & Oldham, 2009; Zimmermann, 2012). For these reasons, and others outlined below, we posit the urgent need for clinicians to become viewed as part of, and experiencing suffering; that this should be articulated and conceptualised in relational terms, and in turn be seen as produced by the micro (i.e. relationship loss, anticipated disconnection) and the macro (i.e. the ambitions of professionals and the failure of professional projects for life prolongment).

Suffering as a therapeutic and inter-subjective relation

The problematic ‘treatment’ of suffering within the therapeutic encounter has emerged from a complex history of the clinical milieu separating ‘professions’ from their (and others’) emotions. It makes sense that the language of much clinical training and practice guidelines, whether in medicine or nursing, is based primarily on the amelioration of the suffering of a dying other. Work in palliative and end-of-life care has explicitly or implicitly articulated suffering in relation to the person who is dying rather than the collective potential experience or role of the clinician in perpetuating or creating suffering (Denier et al., 2010; Mol, 2008; Morita et al., 2004). The premise of the hospice movement was to better address the ‘total pain’ of the individual who was dying, in all its complex intermingling facets, including the physiological, spiritual, social, relational and psychological (Broom, 2015; Morris & Thomas, 2007). The clinical literature has thus tended to portray suffering as being located within a singular person rather than dispersed across persons (those paid and unpaid, those sick, dying, bereaved or ‘well’) (e.g. Back et al., 2009; Denier et al., 2010; Friedrichsen & Strang, 2003; McSteen & Peden-McAlpine, 2006). The assumption here is that understanding and ‘managing’ suffering should necessarily be directed at the patient and their family/ carers. This assumption, we posit, is erroneous, and may also be (at least partially) responsible for suffering itself.

Presuming that suffering lies securely with the ill or dying person, or with their carer, and is strictly about ‘the threat of imminent death’ results in the concealment of important interpersonal ‘exchanges’ including transference, counter-transference, and projection (Broom & Kirby, 2013; MacArtney et al., 2015a, b). The classic psychoanalytic dynamics of enmeshment and dissociation thus become part of the relational attempts to ‘deal with’ suffering that actually produce suffering. The multiple facets of suffering at the end of life, however we name them – whether ‘loss’, ‘grief’, ‘hopelessness’, ‘care’, ‘compassion’, ‘hope’, ‘sense of failure’ – are each dependent on a set of social ties, and relational experiences, and are necessarily about the potential for these to be disrupted or broken (in the context of dying). There has been little consideration of what the professional’s ‘sentimentality’ and (often implicit) suffering may contribute or offer to the dynamic. Here, we posit that suffering is experienced, embodied and co-produced by health professionals, who are themselves struggling with the challenges of the limits of human life, and the limits of their professional projects. This is differentiated according to the values of different professional groups (both self-imposed and externally ascribed) and the extent to which they are allowed, and able to, express forms of suffering emergent both from these perceived limitations of their role/capabilities.

Current logics of practice and care: ‘denial’, ‘compassion fatigue’, ‘burnout’

There is no shortage of available psycho-social concepts seeking to capture forms of professional and lay affect in the context of futility, death and dying. Whether referred to in terms of patient ‘denial’ or ‘anticipatory grief’, or (for professionals) in terms of ‘compassion fatigue’, or ‘professional burnout’, there is an affective industry of sorts reifying the binary understanding of suffering (Kellehear, 1984). What these concepts have in common is they emphasise suffering as located within the person – not across persons. Anticipatory grief, for example, captures the anticipated loss of the person who is dying, whether from the perspective of the person themselves, or the significant other (in the future), again locating suffering firmly as about the individual’s death (Cheng et al., 2013; Nielsen et al., 2016; Sweeting & Gilhooly, 1990). Compassion fatigue refers to the supposedly diminishing returns of compassion in highly emotional contexts, of which hospice care is a good example (Abendroth & Flannery, 2006; Slocum-Gori et al., 2013). Health professionals faced with continual patient pain and suffering, develop various affective dispositions including hopelessness, lack of compassion or capacity to ‘properly care’ (Ablett & Jones, 2007; Adamle & Ludwick, 2005; Graham, 2006). Often linked with professional burnout (see Broom, 2015), compassion fatigue reflects a psycho-social framing of why (some) professionals seem to care less over time and as they are exposed to others’ suffering (Potter et al., 2010; Sprang et al., 2007). This firmly positions suffering as located with the dying Other (that is, the patient) rather than acknowledging the forms of relational suffering that the clinician might be experiencing.

Such concepts, and others in the palliative care literature, are based on an assumption that the ultimate source of suffering lies in the total pain of the person dying (e.g. Boston et al., 2011). This fundamentally misrepresents what and how professionals experience and contribute to suffering. In fact, suffering moves across persons, is multifactorial, embedded in inter-personal and professional ambitions, and is the product of a series of contradictory expectations for formal care/rs (technical...

Table of contents

• Cover
• Title
• Copyright
• Contents
• Introduction: Bodies and suffering – affect, emotions and relations of care
• Part 1 Suffering, bodies and disease
• Part 2 Suffering, the lived body and mobility
• Part 3 Sites of care, self-help and coping with suffering
• Conclusion: Suffering and caring assemblages
• Index