Under pressure: Care,capacity and organ donation

Introduction

Pressure is a palpable and recurrent propensity in organ donation. It occurs intracranially and fatally in bodies that become brain dead (Settergren, 2003) and it extends beyond the contours of the body, building in the families who make end-of-life decisions for which they are not prepared (Darnell et al., 2020; De Groot et al., 2015; Sque et al., 2006). Pressure permeates professional spaces too. The deaths of organ donors occur almost exclusively in intensive care units where mechanical ventilation can maintain viability of organs: where critical care teams work in ‘systems under pressure’ (Buchbinder et al., 2023), grappling with staff shortages. With not enough resources. With wait lists and unsustainable workloads. This paper necessitates a deviation from conventional ways of academic writing. In it I seek to evoke the palpable emergence of pressure in participants’ words and social worlds. Following pressure in and outside of bodies, beyond its neurological occurrence to its permutations in infrastructures of care, is an attempt to think with and through pressure – its interconnected materialities and affects – to convey the charged intensities that limit capacity in bodies and in institutions. The usage of the term ‘pressure’ and the material and affective registers it engenders is an attempt to bring together the biological, social and institutional processes that contour untimely death. Departing radically from imaginings of the ‘good death’ and discourses of preparedness, end-of-life decision-making and advance care planning, the deaths of organ donors occur suddenly, unexpectedly, sometimes violently, through traumatic brain injury, strokes and heart attacks, and in accidents, suicides, murders, or a fatal blow to the head or chest.

Since 2020, these deaths have been affected by the pandemic and its entailing consequences and curtailments to care (Navuluri et al., 2003). As sirens blared and ambulances ramped at the doors of underfunded public hospitals, overstretched and over-exposed health teams mobilised in response to the pandemic. Now, in 2024, we continue to witness the cascading and compounding interrelated crises of care in COVID and the unfolding of neoliberal agendas; in the squeezing out of time and space for health systems to attend to the needs of those with mental illness, chronic disease and other medical emergencies (Buchbinder et al., 2023).

Against the backdrop of COVID-19, physical contact with dying patients was compromised (Johns et al., 2020). In Australia, as elsewhere, virus-related hospital visitation restrictions kept family members apart from each other and their loved one, sometimes even as they died, preventing them from saying goodbye or from knowing their loved one's last words (Buchbinder et al., 2023; Hernández-Fernández and Meneses-Falcón, 2022; Rodriquez, 2023). In these clinical spaces, physical presence became mediated by personal protective equipment (PPE); the barriers of face shields, masks, and gloves leaving some relatives unable to touch their partner, mother, father, or child for the last time. ¹

In this project, I meet families shortly after their harrowing experiences of untimely and unimagined loss. Oftentimes when their loads are made heavier as they struggle with unanticipated costs alongside the legal and bureaucratic labour of form filling for finances and funerals, but also in a majority of cases the police and the coroner. Many talk to me about deaths that were preventable. Deaths that occurred because of infrastructural decay: the potholed cycling path or stretch of road that is a ‘death trap’. Others speak about lives ‘cut short’ by hardship; how health can be out of reach in impoverished communities. Many criticise health institutions that are under-resourced: the ‘lack of access’ to GPs and other health services, extended wait times for an ambulance, or the ‘failure to act’ in acute medical settings. And, time and again, in cases of suicide, substance overuse, and self-harm, parents and care-givers tell me that their loved one ‘slipped through the cracks’ of health systems long before their arrival in emergency departments.

In states of profound grief and loss, some make freedom of information requests to health care services, requests that are sometimes rejected (and sometimes appealed) alongside coronial proceedings. Some read and research hospital notes. Make calls. Wait on the line. Their lives on the line as they wait for coroner's reports. Some ask, ‘should we go to court’, ‘do we go to the media’, ‘can I afford a lawyer’, ‘should I risk my house’. Many are too traumatised to return to work. Many return to work traumatised. They cannot afford not to.

Yet, in spite of multiple intersecting crises, care persists. And this paper speaks to both the spaces where care is curtailed and where it endures, even in the most tragic and harrowing of circumstances. Examining how care can circulate differently, it reveals how more capacious forms of care offer potential to reduce the pressure that builds in bodies and in medical systems.

Theorising pressure

I will soon bring to the fore an ethnographic vignette that speaks to the manifold pressures that course through bodies and institutions. But first I want to convey that my focus on pressure marks a shift from previous social scholarship on organ donation. I attempt to bring together a Baradian analysis of intra-action (2007) with care scholarship on the politics of interdependence (Chatzidakis et al., 2020a). In doing so, this work departs from research on organ donation and transplantation in the social sciences that has prioritised other conceptual frames. Previous research has presented critical analyses of ‘the gift’ discourse used to promote donation (Fox and Swazey, 1974; Healy, 2019; Shaw, 2015; Sque et al., 2006), new embodied intimacies and transformations (Manderson, 2011; McCormack, 2021; Sharp, 2006, 2001; Shildrick, 2008), the biomedicalisation of death (Lock, 1996, 2002; Sharp, 2001, 2006, 2007) and transplant inequities (Cohen, 1999; Crowley-Matoka and Hamdy, 2016; Kierans, 2011; Kierans and Cooper, 2011) which propel practices of organ trafficking and ‘transplant tourism’ (Scheper-Hughes, 2006, 2000). It is not that pressure is entirely absent in these studies, but rather that pressure is backgrounded in the prioritisation of other conceptual apparatus. In both the health and social sciences, pressure materialises in the medical aetiology of brain death. The catastrophic rise in intracranial pressure that precedes donation after neurological determination of death is part of the everyday lexicon of clinical communication in critical care literature, organ donation guidelines and medical practice. Entangled with technological devices, this pressure is measured and monitored by clinicians (and anxious family members) via intracranial pressure monitors (Haddow, 2005: 100; Jensen, 2016: 384). While the category of ‘brain death’ has received significant attention by social researchers who highlight how death and dying are understood and practised differently within and across multiple cultures and medical contexts (Haddow, 2005; Jensen, 2016; Kellehear, 2008; Lock, 2002; Sharp, 2006), critical engagements with intracranial pressure elude their analysis.

In developing a social theorisation of pressure, I want to stress porosity and pervasiveness; pressure extends beyond bodies and brains. Social science researchers have touched on socialities of ‘pressure’ in analyses of the ‘gift of life’ discourse used by government and donation agencies to promote organ donation. These studies suggest the need to ‘expand the conceptual toolkit’ beyond altruism (Shaw, 2015), pointing to ‘social obligations’ that may, sometimes inadvertently, place ‘pressure’ on families, clinicians and recipients to ensure the success of donation and transplantation (Fox and Swazey, 1992; Lock, 2002; Sharp, 2006: 25). Pressure is also conceived temporally in relation to a sense of urgency or ‘time-pressure’ in organ donation decision-making and processes (Ahmadian et al., 2019; Cooper, 2023). And it appears in the vernacular of systemic pressures that result from neoliberal health systems. Indeed, in what is well documented as a ‘care crisis’ (Dowling, 2022), hospitals and those who work within them are ‘under pressure’ (Buchbinder et al., 2023; Smith et al., 2014); pressure pervades the places where organ donation occurs. Or, more explicitly, pressure builds when the capacity for care contracts within austerity measures and neoliberal logics of contemporary health and social systems. And in systems under pressure, care becomes increasingly hard to access, especially for those who need it most (Chatzidakis et al., 2020a). Intensive care units, like emergency departments, might be conceived of as particularly pernicious pressure points, locations where the effects of reduced primary and acute healthcare expenditure converge; where the differential distribution of care (re)materialises in the bodies of the poor and marginalised, in comorbidities and increased mortality.

Systemic pressures resound in our everyday vocabulary – hospitals under pressure, health budgets under pressure, financial pressure, housing pressure, inflationary pressures. Circulating widely in public discourse and news and social media, they similarly call for, but have not yet received, ethnographic attention. Recent anthropological work examining pressure on hospital staff and health budgets instead engages terminologies of stress and tension, and refrains from thinking with and through the material semiotics of pressure. Seeking to move beyond the focus on individual care workers and patients, Buchbinder et al. (2023) draw on Cribb's notion of ‘moral stress’ to attend to the moral challenges that ‘broken systems’ pose on health workers who become complicit in the production of health disparities. Stress, the authors note, ‘conveys pressure or tension, both on the system and on the workers themselves’ (Buchbinder et al., 2023: 4). Ethnographic work conducted in ICU settings in the United States during COVID-19 foregrounded an analytic of ‘distressed work’ (Navuluri et al., 2023) to communicate the crisis of care work experienced by clinicians in under-resourced medical systems that are under continuous pressure. In these studies, as with earlier ethnographic research on ‘idioms of distress’ (Nichter, 1981, 2010) or conceptualisations of ‘tension’ (Cohen, 1998), pressure is part of the panorama. In his work on ageing in India, Cohen writes that ‘tension’ is part of a ‘semantic network’, a ‘hydraulic physiology’ linked to bodily and blood pressure. But pressure itself is not prioritised as the central analytic. ²

In foregrounding pressure, I seek to place emphasis on volume and capacity, to ask what happens to bodies and systems when they reach their limits. This involves thinking beyond tension and stress, and the ingrained psychological framing that all too readily lends itself to individualist discourse that promotes the cultivation of resilience, well-being and self-care in response to structural problems (Hobart and Kneese, 2020; McGee, 2020). There is a need, as Chatzidakis et al. (2020a) insist, for more collaborative approaches to care and for more generative vocabularies that reimagine care while offering a critical understanding of its continued contraction in contemporary social worlds. I contend that an ethnographic attention to pressure might be better equipped than earlier analytics to speak to the current crises of care and to convey the ‘affectively charged engagement’ (Singleton and Mee, 2017: 133) in which sudden and untimely death occurs.

To be clear, pressure in this paper is more than metaphor. Following Barad (2007), I attend to pressure as an affective semiotic and material intensity consisting of heterogeneous elements that assemble and reassemble to produce situational and relational realities. Like other (biomedical) phenomenon, pressure is multiple (Mol, 2002), and this paper engages and extends feminist and care scholarship (Barad, 2007; Chatzidakis et al., 2020a) to bring together different versions of pressure and to consider specific intra-actions that emerge within bodily, social and institutional processes. In their shift from inter-action to intra-action, Barad (2007) unsettles the notion of individually existing entities that act upon one another. Instead, what may usually be taken for granted as independent – whether it be a body, brain or system – actually, on closer inspection, does not pre-exist but materialises in intra-action. Intra-action, for Barad, is an entanglement of agencies: an ongoing, iterative reconfiguring of material and semiotic matter. In intra-action, bodies, their interiorities, and their social worlds are mutually constitutive. They are not closed, bordered entities. With a nod to Barad's (2012) question ‘what is pressure?’ in their paper on touch, I attend to the permeations and permutations of pressure not as properties of bounded bodies and their interactions with other bodies or environments but as an intra-active and transmissive force. ³

Orientation to the study

In what follows, I draw upon ongoing Australia-based research conducted between 2022 and 2024 with those who are personally or professionally involved in organ donation: clinicians who communicate determinations of death and requests for organs to families, and families who make decisions about donation. Families who are weighed down by the compounded grief and burden that suddenly losing a loved one in traumatic circumstances entails. And clinicians who perform the difficult and demanding emotional labour of ‘death brokering’ (Timmermans, 2005): communicating determinations of death and requests for organs in ways that seek to make untimely and unexpected deaths manageable and understandable for bereaved families. Fieldwork has taken me into donation agency office spaces, public events and clinician training days, and to the homes of recently bereaved families – to their loungerooms and around their kitchen tables and the photographs of their deceased relatives.

Recruitment of families has occurred with the assistance of metropolitan South Australian hospitals and via an existing ICU follow-up service for recently bereaved next of kin. In cases where organ donation was offered, these relatives, and their wider families, are invited to participate in this project and to discuss their experience around organ donation via an interview, in person and at a time and place of their choosing. Although the hospitals that implement the ‘follow up’ are located in or near Adelaide, ICU patients and their families may live regionally, interstate or overseas. Unexpected deaths can happen on overseas holidays, in international airports, or on desert highways where emergency services airlift the critically injured and transport them to hospital while family members drive across the country or scramble to find emergency flights to be by the bedside. As such, the research to date has extended beyond Adelaide to regional homes in South Australia and to other rural, remote and city locations in Victoria and Queensland. Ethnic heritage and family relations among participants in this study, and the deceased, is similarly diverse – spanning Chinese, Indian, Bangladeshi, Vietnamese, Italian, Maori, Indigenous Australian and Anglo-Australian backgrounds. ‘Family’ in this study is a broad category that has included parents, adult children, siblings, spouses, friends, employers and advocates from a range of household configurations (single parent, intergenerational, heterosexual, gay, widowed, retired, working, under- and unemployed).

Although all research interviews begin with conversations around experiences of organ donation, they invariably extend outside of the critical care settings where organ donation occurs. Interviews often reveal complicated trajectories of (dis)engagement with care infrastructures or complex histories of social inequality. It is in these stories that pervasive and systemic pressures emerge. I turn now to present an ethnographic vignette and to convey the recurring theme of pressure in this work before attending to possibilities to defuse pressure via capacious forms of care. Finally, I turn to stories often untold, stories of refusal and resistance, to ask what a social analysis of pressure can offer and how might it compel us to make more space for care.

Under pressure

Here is one mother's story.

Emma was away from home with her husband Jack. They were a few hours’ drive from Adelaide when they got the text from their daughter. Aged in her early thirties, Jessica was unable to speak, move, to coordinate her body. Her head was throbbing, in pain. Her text said, ‘Mum, I’m on the floor. I’m dying, headache and vomiting.’

Emma tells me ‘I rang her while we were on the road. And I said, “Jessica, how are you?” And her speech was slurred, and she was like, “Oh mum”. And I said, “Jessica, just get to the front door and open the front door and I’ll call an ambulance”. And so, I hung up, rang the ambulance and told them, and the lady said, “I’ll call and talk to her until the ambulance comes.” So that lady was talking to her until the ambulance came. And then later, probably an hour later, hour and a half later I texted her “Jessica, what's happening?” And she replied “talking, taking me home, dropping me home”. And I thought, what? You’re supposed to be at the hospital?’

An ambulance arrived but did not take Jessica to the hospital. The paramedics took her, instead, to a GP clinic as part of a ‘hospital avoidance service’ established in South Australia during COVID-19, as an alternative to emergency departments. Just months earlier, these new ‘efficiencies’ in the system were being applauded by politicians and senior bureaucrats for ‘taking the pressure off hospitals'.

In our interview, Emma recounted a succession of what she termed ‘red flags’ and her accompanying descent into shock as a fractured system failed to provide care to her previously healthy daughter. Red flags. That early discharge from the clinic; waiting the whole following day in a hospital emergency department; delayed neurological tests; delayed transfer to another hospital for specialist services; waiting 7 h for an ambulance; that young male doctor in the clinic who did not listen, who told her dismissively ‘it's just a migraine’ to take her daughter ‘home, to rest’. She talks about the lack of space in hospitals. The lack of space in the system to care.

Finally, two days later, Jessica had a brain scan and Emma was given the news: ‘there's a bleed in the brain’. Jessica had had a stroke. An intracranial haemorrhage. A blood vessel in Jessica's brain had ruptured, causing bleeding. As the blood pooled, it thickened to produce a clot. Surrounding tissues became compressed, deprived of oxygen. This build-up of blood increased pressure inside her brain. With limited capacity inside the cranium, there was no room for movement, nowhere for accumulated blood and swelling tissues to go. Intracranial pressure was building.

Pharmaceutical and surgical interventions could not stop the haemorrhaging. Blood thinners, routinely used to dilute clots, increased bleeding. And clot retrieval procedures failed to restore blood flow. Ideally performed in the first three hours of a stroke, these treatments were unable to stop or slow the bleeding. Full of angst, Emma recounts, ‘you’ve only got so many hours [but Jessica had] been like this for days now’.

The only remaining option was a rare form of craniectomy, a neurosurgical procedure to remove part of the skull to allow the swelling brain room to expand. Jessica's family were asked to make the difficult decision – for Jessica to undergo this surgery to relieve pressure but chance the very high risk of her living in a permanent vegetative state, and institutionalised for life, or to wait for the pressure to build and for Jessica to become brain dead. Emma tells me, ‘we waited for brain death to occur.’

Emma agrees with the words of politicians, health workers and the media. She says, ‘there is pressure on the system’ and a need to ‘take the pressure off’. But she calls into question the capacity of current solutions, and under-resourced GP clinics, to reduce strain on hospitals. Akin to Dowling’s (2022) ‘care fix’, these strategies appear when something has to give, providing ‘a temporary comforting balm whilst failing to address the deeper structural crisis’ (Chatzidakis et al., 2020b). Imbued with neoliberal logics – a market-driven quick fix, where health care deficits in one space, the gaps created by the dismantling of state responsibility, are plugged by health care workers elsewhere (Chatzidakis et al., 2020b).

These care fixes are pressure valves. They simply and unevenly transfer pressure, redistributing it to health care workers, families and the bodies (and brains) of patients. Decades of ‘organised neglect’ and underinvestment in health and public services have become all the more visible since the pandemic (Broom et al., 2023; Chatzidakis et al., 2020a). From the systemic failures in public health, the logjam in emergency departments, and the lack of beds for patients to be admitted to, we are witnessing a ‘care crisis’ (Dowling, 2022). In hospitals, this presents in a language of capacity, pressure and flow. Emergency departments are overflowing. A lack of resources means patients cannot be moved into hospital beds, and because they cannot be transferred from emergency departments, patients in ambulances remain ramped outside of hospitals for many hours and paramedics cannot respond to patients they need to see in the community. While South Australia aims to get 90% of patients transferred from the ambulance to the emergency department within 30 min, in the year that Jessica died, like all other Australian states and territories, it was far from reaching this goal with only 43% of timely transfers (Health Performance Council, 2023). Consequently, the Ambulance Employees Association took to the streets, and to news and social media, saying, ‘COVID positive patients currently ramped’, ‘ED over capacity’, ‘Our system is under resourced and unprepared’ and there is ‘simply not enough bed capacity in our hospitals’ (Twitter, December 2021). More recent media reports detail storerooms being converted to emergency department treatment spaces, and the dangerous levels of depression, anxiety and burnout among health and nursing staff who report being ‘stretched’, ‘exhausted’ and feeling ‘tipped over the edge’ (ABC, 2022; Crouch, 2024).

Under pressure. Under pressure burnt out bodies break. In their Care Manifesto, the Care Collective (Chatzidakis et al., 2020a) approach this moment of rupture as a systemic carelessness that demands we attend to how bodies, environments and infrastructures of care are intimately entangled. Extending their ‘politics of interdependence’ (Chatzidakis et al., 2020a) to what happens when pressure builds to such an extent that there is no capacity left in bodies and in institutions, Barad's intra-action pushes beyond articulations of separate bodies and systems, demonstrating how the social and biological are co-constituted. Expanding beyond a temporal and spatial ecology of social and political forces that press on bodies through geographies of care (Bowlby, 2012; Bowlby and McKie, 2019), Jessica's death reveals how these mutually constitutive terrains intra-act to contour and constrain the interiority of bodies and social worlds.

Tracing this infrastructural and intracranial circuitry of pressure reveals uneven flows and constrictions to care. Pressure concentrates in some spaces and some bodies more than others. Costs of systemic failures are inequitably distributed along gradients of gender and class. For months Emma sought to make formal complaints about the lack of care her daughter received. She constantly found herself up against roadblocks, telling me these complaints ‘are not going anywhere’. They get stopped by policies and processes in the very institutions that, she says, ‘are supposed to care’. Emma laments, ‘We are powerless’, ‘Nobody listens’, ‘It's very much hierarchical power.’ And she asked, ‘would Jessica still be alive?’ had their voices been heard, had they spoken from a more elevated social position.

Care, capaciousness and capacity

A few months after Jessica's death, I sat with Emma in her daughter's flat where she then lived. The walls were adorned with Jessica's art works and, on the fridge, Emma displayed the letters and birthday cards she’d received over the years from her daughter. Clay and embroidered pieces of hearts and other symbolic motifs of generosity adorned bookshelves and countertops. From the living room, Emma drew my attention to a photograph of Jessica. Poised in a gesture of giving, she is at a party. Her outstretched arms place a homemade cake on the table for friends and family to enjoy. ‘This is how I remember her’, Emma says, ‘always giving to others.’ It is here in this space that Emma posits a version of care that resonates with feminist theorisations of radical and collective care. This is a care that is expansive and indiscriminate, and one that she saw as enacted in her daughter's final gesture of giving. Jessica was registered as an organ donor. And among the letters to Emma on Jessica's fridge was a handwritten card from the anonymous recipient of Jessica's liver, with thanks for the chance to be with their family for many years to come.

In this project, my attention has been drawn to these recipient relationalities. Some families talk of the recipients, who they will most likely never meet, as ‘transplant brothers’ or ‘children’, and many treasure the letters they receive, via donation agencies, from these ‘transplant kin’. For Emma, these communications stood in stark contrast to the letters from bureaucratic institutions, which were read as ‘harsh’, ‘mean’, ‘lacking humanity’ and as papering over mistakes. Intentionally worded to evade accountability and forms of responsibility, they presented institutional forms of harm (Broom et al., 2023) that Emma saw as discordant with her daughter's embodied generosity and the care practised by the intensive care clinicians and specialist organ donation nurses who provided end-of-life care and who made donation possible. Incorporating the care and reciprocity missing from these systems, donation and transplantation and the communications shared between recipients and donor families might speak to a ‘relational ethics of … promiscuous care – [one] that proliferates outwards to redefine caring relations from the most intimate to the most distant’ (Chatzidakis et al., 2020a).

In their Care Manifesto, Chatzidakis et al. (2020a) extend AIDs activist Douglas Crimps’ theorisation of promiscuity in which he described the concept ‘not in the sense of “casual” or “indifferent”’ but in terms of the ‘experimental intimacies’ of care practised by gay men during the AIDS epidemic in ways that went on to save lives through safer sex initiatives. This notion of promiscuity and the reimagining of ‘the limits of familial care to encompass more expansive or “promiscuous” models of kinship’ (Chatzidakis et al., 2020a) is resonant with some donor families’ sense of kin with recipients (Sharp, 2006; Shildrick et al., 2009) and the new relational potentials made possible through transplantation (Murphy et al., 2022). A promiscuous care also emerges in the many ways that ICU staff expand spaces for care, even within the confines of institutional logics. I turn now to the forms of care practised by individual clinicians and care teams alongside constraints to its provision. Care is not an either/or. It shifts and circulates, co-existing with and within the limited capacity of emergency departments or lack of hospital beds, paramedics and ambulances, and the many medical challenges that occur due to structural forces beyond any individual clinicians’ control. In fractured infrastructures gestures of care are compromised and they recur, as fondly and frequently recalled by family members who participated in this project.

Efforts to coordinate care did not go unnoticed by Emma. Notwithstanding the lack of care encountered across multiple health services, she felt comforted by the words and actions of the ICU clinicians who cared for Jessica in her final days and supported the family, making up a bed in the hospital room to enable them to remain close to their daughter. It was often in vernaculars such as ‘going above and beyond’ or ‘they did everything that they could’, and through streams of tears, handfuls of tissues, and glistening eyes, that bereaved relatives communicated clinicians’ acts of tenderness and compassion. Such as those serendipitously witnessed when staff are seemingly alone with the dead or dying. As one son in his thirties said as he broke into tears recalling the care provided to his father, ‘it was the way they spoke to him and cared for him when no one was watching’. Or the grieving widow, aged in his forties who wept as he recounted the kind doctor who explained everything in detail, without ever rushing ‘like he had all the time in the world for us’. Or the bereaved wife in her sixties who was grateful to the doctor who physically rearranged the furnishings and equipment in her husband's room, drawing the curtain to enable her to lay down with him in a final private intimate embrace. Or the sister who recalled with much gratitude the nurses who stayed beyond their shift to support her young niece and nephew, delicately bandaging her brother's head after a fatal fall, applying glitter and sequins so that he ‘looked beautiful’ and his children could be with him in his last moments. Or the many other accounts of nurses who have worked out of hours to support the dying and their bereaved kin. Or those staff ‘who turned a blind eye’ to hospital visiting restrictions enabling families to be together and to support each other during trauma and terrible loss. Or when staff stop to create a ritual ‘guard of honour’ for the donor as they are taken to theatre for organ retrieval surgery.

Care cannot be disentangled from the structural inequalities, neoliberal logics and inadequate dispensation of public resources that curtail it (Hobart and Kneese, 2020). Yet, care practices can and do emerge within institutional fissures, in the creative manoeuvres of clinicians who expand capacities and possibilities for care, sometimes via detours or deviations from institutional rules and logics (De Certeau, 1984). These acts of care enable affective registers; and they leave traces in the memories that relatives hold on to, that help them ‘to endure’ (Kleinman, 2016), especially in their darkest moments when they feel anger and rage about lives cut short and the things that went devastatingly wrong. When their ‘blood is boiling’, when the pressure gets too much. The many times that they feel unable to go on. It is often in these moments of unbearable pain and suffering that these gestures are recalled, leaving traces of care that help make lives liveable.

Stories of refusal

Although care may afford opportunities to diffuse pressure, pressure persists and it creates important sites of resistance. In contrast to Emma, some families do not want to engage in communication with transplant recipients. Many others – 45% – decline or refuse consent to the donation of their loved one's organs for transplantation into another person. This is not to say that pressure is not present in their stories too. Indeed, refusal can be a powerful way to assert autonomy (McGranahan, 2016) in the face of intersecting crises of care and infrastructures under pressure. As the following examples will show, refusal can emerge relationally as a response-ability for others, in shared or referred decision-making that may reduce pressure through resistance.

I can tell you about Vicky, the mother of Hunter, a young car crash victim aged in his twenties. As we sat together on her lounge suite facing an empty wooden urn, she told me about escalating financial pressures; how the funeral parlour would not release her son's ashes as she’d been unable to afford the final payment for the service. Multiple variants of pressure emerged in her narrative. In the ICU, she anxiously watched the numbers rise on the intracranial pressure monitor affixed to her son, with the understanding that values beyond 20 meant there was too much pressure inside the brain, that severely high numbers would be fatal. Vicky experienced an escalation of pressure in her own body and surrounds too. She felt unable to contain her anger, like she would ‘blow up’, when she received inconsistent information in the ICU, or in response to the tone in which it was delivered. With more than 20 years’ experience as a care worker, Vicky said she could relate to the nurses, who were ‘supportive’ and ‘respectful’ in the way they spoke to her and looked after Hunter, but in front of the doctors, she tells me, she felt like ‘nothing’, saying that they were ‘very arrogant’ and ‘sort of looked down on ya … It was like we were irrelevant.’

Pressure intensified, she struggled to breathe when, in the ICU, she was hoping treatment would be continued but was given a form to sign ‘to identify the deceased’. Breathing was made more difficult by the mask and the PPE she was asked to wear. She was unnerved and overwhelmed when doctors asked about organ donation. Despite her son's intention to donate recorded on his driver's licence, she tells me her response was immediate. She said no. Sympathetic to the heightened emotions in the room, Hunter's friend spoke up announcing that Hunter had told him he no longer wanted to be a donor and planned to change his registered intention to donate when he renewed his licence. Sobbing, she exclaimed, ‘then as soon as we said that they were like, well, you better go in now and say goodbye to him. It was sort of like, if you’re not going to do that, we want him gone.’ Relieved that the request was stopped in its tracks, Vicky's experience points to how and why families may override decisions and decline donation. In the unfolding pressures of critical care, donation decisions can be made and unmade.

I can tell you about Khaleel, a Bangladeshi refugee and one of Australia's longest serving asylum seeker detainees, who died suddenly in his late forties following cardiac arrest. A diabetes-related complication and a direct bodily violation by the hands of the state as the diabetes was a side-effect of the antipsychotic medication he was prescribed in (a lack of) state care. Born an orphan, then recruited at a young age into a rebel group, Khaleel had been a child soldier, his life at risk, forcing him to flee the country, eventually arriving on the shores of Australia where he was handcuffed and spent the next seven years in detention. Chronic and cumulative post-traumatic stress disorder and many years on a removal pending visa followed. Khaleel's health deteriorated with the escalating pressure that he could be deported at any time. Alison, his closest confidant, a long-standing friend and advocate, acted as his next of kin. Where the state failed Khaleel, Alison stepped in and she believed Khaleel would have wanted to donate ‘anything that is good in him’. Though he never attended the mosque, as a practising Muslim, decision-making about donation was referred to a representative of a local Imam who declined since Khaleel hadn’t expressed any intent to donate during his lifetime, a decision that Alison feels, with a tinge of regret, would not reflect Khaleel's preferences had he had the opportunity to speak for himself. Decisions to decline donation might not always reflect agentic refusal; they may also be experienced as extending restrictions to capacity in lives not afforded scope for freedom.

I can tell you about Peter, aged in his early fifties when he had a brain haemorrhage and was in the ICU for almost a month before treatment was withdrawn. His wife Elena explained that Peter came from a large Italian family and she had the role of coordinating their visits to fit with the strict hospital restrictions imposed since COVID-19, which meant only two people could visit per day and she or their children would often miss out. Resultantly, her already strained relationship with her mother-in-law experienced increased pressure, which escalated further when organ donation was raised. As a Catholic, Peter's mother was opposed to organ donation due to a religious belief that the body should be kept whole. Peter, however, had intended to be a donor. He’d selected the option to donate on his driver's licence but when he renewed his licence, he’d forgot to tick the box, something he’d planned to rectify. So, when organ donation was raised in a team meeting with family members, including her mother-in-law, Elena knew this was something Peter wanted to do, but, she said, ‘I had all this extra pressure’. Pressure here circulated in family relations and hierarchies, ‘the fear of being judged' by in-laws and being ‘on tenterhooks’. In hindsight, Elena wishes the doctors made more time for her, to ask who should be in the room for these critical conversations. Reading the familial and cultural sensibilities in the room, Elena's friend, Vanessa, saw the mother-in-law shaking her head, telling me ‘you’re kind of thinking alright, she's already against it, she's gonna grill her, she's gonna kill her’. And Vanessa explained that she spoke up to decline donation since Elena and her adult children were ‘actually staring down the barrel of a gun if you say “yes we’re going to take his organs out”’.

There are other stories that I cannot tell, such as the many families who declined donation and participation in this study. Some of these potential donor families and participants offered reasons for their decline. Parents, spouses and adult children communicated that they are overwhelmed and exhausted by the financial and institutional pressures and administrative labour involving (in)different bureaucracies (including insurance companies, government and welfare agencies, banks, and health networks). Others reported that they do not want to assist the health care system be it through organ donation or involvement in research, when the system had not helped them or their relative. These are stories from mothers, fathers and partners who sought help for their loved one's health issues, addiction or suicidal ideation but found no capacity in the system for their care.

How should we understand these varied acts of refusal? Ethnographic research has explored refusal as a political act, demonstrating that refusal is ‘not just a matter of refusing, but also of being refused’ (McGranahan, 2016). For those on the fringes of society, who have been under-resourced, excluded and marginalised, refusal may be a way to assert one's autonomy in a world that has been cruel and unkind. At the same time, refusal can offer fertile soil for rethinking the ‘false assumption of agency and choice’ (Hobart and Kneese, 2020), especially in lives afforded few opportunities. Organ donations and the sudden unexpected deaths that precede them do not take place in a vacuum; they extend beyond the ICU and are always part of a longer trajectory of engagement, or disengagement, with medical and social systems. I do not want to undermine families’ decision to decline donation as an act of resistance – an active opposition to ‘patterns of exploitation and power’ (Ortner, 1995: 179) that contour social and health inequalities, and contribute to premature deaths. Yet most families who refuse donation do so not as a struggle for liberation or against domination, but rather in the vicissitudes of relational social worlds (McGranahan, 2016): in the context of family, clinical and, for some, religious hierarchies and interactions.

Ethnographic attention to refusal thus points to its agentive and relational potentials (McGranahan, 2016; Sobo, 2016). In her analysis of vaccine refusal, Sobo (2016: 343) follows Biehl and Locke's Deleuzian anthropology of becoming, diverting ‘attention from foreclosures to openings’. Rejection of vaccination is theorised not simply as an act of resistance against social and medical norms, but rather an ‘opting in’ to shared beliefs, practices and alternative socialities (Sobo, 2016). It is this attention to openings that I wish to emphasise here. Unlike vaccine refusal, declining donation is not woven into the social fabric of a community. There is no ‘donor refusal’ movement or collective that has gained traction in the public discourse or domain. However, declining or refusing donation may similarly ‘entail association and becoming’ as a generative act that creates, rather than obliterates, affiliations (Sobo, 2016: 347) in moments of crisis, when under pressure. Whether it be the affirmation and maintenance of social or familial ties vis-à-vis referred decision-making or opposition to clinical processes and communications, the stories of refusal documented above emerge in reciprocal relation with pressure. They can take shape in gestures of care and distributed decision-making that seek to relieve pressure when bodies, families and systems are pushed beyond their limits.

Conclusion

Situated in biomedical understandings of bodies, pressure produces the conditions for organ donation to occur. It is the central or defining force in organ donation after neurological determination of death. Measured by intracranial pressure monitors and depicted in brain imaging, pressure is evaluated and envisioned as a neurological occurrence. But in researching organ donation (during COVID-19) it became apparent that intracranial pressure intra-acts with other spaces – within and outside of the settings where donation occurs. This paper is an attempt to follow these multiple variants of pressure and to think about what happens to bodies and systems, and how they intra-act, when pressure builds to such an extent that capacity is depleted.

It follows, then, that this is a paper about care as much as it is a paper about pressure. Bereaved relatives in this study revealed how variants of pressure may rise or dissipate through practices of care. Whether it be making rooms or beds available for family members to be together, feeling that doctors and nurses were not rushed, witnessing nurses gently talk to or stroke the hand of the deceased, or the relief when visiting hours were stretched to enable ‘more time’ or ‘more visitors’, it was in the loosening of restrictions, the expansion of time and spaces for care, that care was best practised. This was a generous care described as ‘making the unbearable, bearable’ or ‘bringing some comfort during my worst nightmare’, and it often involved working with and around systems and structures in ways that resisted neoliberal logics that seek to curtail care. In short, this was a way of offering more care, not less. Care was also something that could be enacted by families and donors in the giving of organs to save other lives, or the making of decisions to relieve the burden on others. Such acts of care do not create structural change to how care infrastructures are resourced. However, they help to ‘take the pressure off’, to make life bearable amidst harrowing and unexpected loss. The families and clinicians in this study, who do care and who do care work, would advocate for these more expansive and capacious forms of care. A care that offers possibilities for diffusing the calamitous force of pressure that builds in bodies and in health systems.