Deborah Madden discusses anticipatory grief and end-of-life grief narratives in the challenges of the COVID-19 era
This essay was first presented as part of “Narratives of Illness”, the SELMA Medical Humanities Seminar Series at the University of Turku, Finland, convened by Marta-Laura Cenedese and Avril Tynan.
‘Taking care’, in its broadest sense, means establishing contact so that no one is left alone (Gilligan, 1993). In the midst of Covid-19, however, taking care of ourselves and others involves isolation and digital connection, with physical contact, at least in the UK, limited to prescribed bubbles (Branicki, 2020). Loss of the multisensory, particularly touch, has had a profound impact on the ways we give and receive affection and comfort, compounding isolation, especially during times of grief. It also disrupts ‘embodied learning’ and communication in healthcare settings; social distancing and the barrier of PPE draw attention to the importance of touch as an empathic and diagnostic method, sometimes referred to as ‘body pedagogics’ (De Zuleta, 2020). An absence of tactility, with the hindrance of sensory modalities, means that Covid-19 has heightened an appreciation of multiple approaches practised in end-of-life care, such as presencing, accompaniment and companioning. The affective means of presencing as a form of non-verbal communication in end-of-life care is attested by silence and touch (Candlin et.al., 2014), where skin, as a social organ, can connect and communicate emotion, diminish fear, provide comfort and reduce anxiety (De Zulueta, 2020; Kelly et.al., 2019). Pre-Covid, these modes of interaction complemented and enriched different forms of narrative practice, including the life review, narrative medicine, illness narratives and oral histories (Flanagan, 2020), especially in contexts where representations of grief might not necessarily coalesce into a cohesive narrative whole (Wasson, 2018).
An absence of tactility and reduction of physical presence has seen care teams adapting quickly when adjusting the assistance, activity and resources embedded within end-of-life care (Tavabie et.al., 2020). The rapid switch to digital technologies by way of facilitating communication with patients and families is an obvious example, though this was not without its own difficulties given the sorts of conversations about end-of-life treatment that need to take place. The research here draws on a collaborative oral history project located in the Centre for Memory, Narrative and Histories (CMNH) at the University of Brighton, UK. Although the ‘Everyday Cultures of Grief’ project pre-dates Covid-19, its response to the pandemic was to curate oral histories from a network of palliative and end-of-life practitioners by way of capturing ‘everyday’ subjective experiences and unequal impacts, as well as differing affective scales related to illness, dying, anticipatory grief and mourning.
The professional and personal toll that Covid-19 has exacted on palliative and end-of-life care teams is detailed in the responses, which highlight the unique challenges faced: the volume of patients dying alone, separated from families; the grief felt over loss of physical contact as a form of comfort, communication and presence; poorer levels of communication due to the barriers of PPE; the effects of scaling back complementary and holistic forms of care. Care teams were continually required to implement the UK Government’s changing regulations, which created a lot of uncertainty and higher levels of anxiety. A wider understanding of collective loss was referred to as ‘societal grief’ by respondents, where the interpretation of grief was complex and multifaceted, pertaining to lost time, loss of freedom and an uncertain future.
There were many losses, though a sobering insight came in an observation made by a patient to one of the clinical staff; this patient reported that they’d felt particularly ‘unlucky’ to be dying during the pandemic because this would deny them a ‘good’ death. Developing out of the modern hospice movement, the principles of holistic palliative and end-of-life care, which can attend to the physical, social, emotional and spiritual needs of patients with life-limiting illness, have become enshrined in governmental policies and stated as a human right by the World Health Organization (WHO). Taken together, they’ve come to represent an individualised model of a ‘good death’ in Westernised societies, though for this reason not without critique (Zaman et.al., 2018). Even before Covid-19, stark inequalities were found regarding the aspirations for a ‘good death’, with the most vulnerable not being able to adequately advocate for this (Healthwatch Brighton and Hove, 2020).
The pandemic has shone a light on these longer-term issues, some of which are rooted in the UK Coalition Government’s austerity measures and accompanying reduction in the funding of social care between 2010 and 2015. This has weakened the response capacity to Covid-19, taking place within ‘an already beleaguered sector’ (Glasby and Needham, 2020; Warren, 2020; Madden et.al. 2021). In the interviews, anger about care hierarchies within the Government’s funding priorities was tempered only by a hope that Covid-19 might see a change of direction in policy. That the NHS only funds a third of all palliative and end-of-life care in the UK, with the rest funded by charitable donations, is a staggering testimony to this fact (Clarke, 2020).
Austerity and neo-liberal policies pre-Covid, with the pressure of patient numbers and intensification of target-driven administrative tasks, means that, rather than being able to engage patients via narrative sharing, many staff were already far too pressed for time. Moreover, in the UK it is evident where narrative medicine and patient narratives have become crudely instrumentalised, often underpinning metrics with which to monitor healthcare delivery and measure patient satisfaction. What started as communities of practice advocating for a more empowered ‘patient centred’ healthcare that might challenge medical hierarchies has since been co-opted into the structuring and organisational principles of neo-liberal policies, where the patient is both central and invisible, in what Lizzie Ward sees as the discursive shift from patient ‘voice’ to consumer ‘choice’ (Ward, 2015).
Covid-19 is thus seen as an opportunity to shift perspectives, improve patient experiences of end-of-life care and increase resourcing for palliative care teams. Staff were keen to talk about how they coped during the pandemic, but wanted these experiences to serve as an impetus for addressing longer-term issues. There was hope too that the pandemic might further facilitate more open conversations about death, dying and end-of-life care, thereby changing dominant narratives and popular misconceptions about palliative care. Within end-of-life care settings, ‘anticipatory grief’ is defined as a response to loss, identity and changes in roles, in addition to an impending death. Anticipatory grief is experienced, not only by the terminally ill person, but by family, friends, and caregivers. Yet anticipatory grief, whilst intensifying emotional responses, is also thought to be beneficial inasmuch as it can create time and space to anticipate and prepare for changes to come in the future.
Here, the project makes heuristic use of the term ‘anticipatory grief’ itself (Madden, et.al., 2021), picking up on Florian Mussgnug’s call for an ecological re-thinking of grief, which can reconfigure established attitudes towards death and mourning. He suggests moving away from the idea of narrative as a prolonged, transformative encounter with grief, which offers a stark choice between melancholia and resilience. Although the pandemic has been a powerful reminder of the omnipresence of death, it has also highlighted the generative force of communities and strength of social ties (Mussgnug, 2021). There is much evidence to support his argument and the pandemic has galvanised earlier proposals like the Green New Deal, Universal Basic Income and mutual aid, with the resurgence of a feminist care ethics that embraces interdependency or, as in The Care Collective’s Care Manifesto, a vision of collective care ‘at every scale of life’, be it local, national or global (The Care Collective, 2020).
Emphasis on cultures of grief is also a way of indicating a relational ethics to end-of-life care, not just in terms of clinical or therapeutic applications, but as a broader articulation of the ‘politics of grief’ allied with a politics of care (Tronto, 2013; The Care Collective, 2020). The project’s starting point takes seriously James Stanescu’s claim that mourning is a political act; recognition of the vulnerability and finitude of another (2012, 569). This offers an expanded and politicised sense of multiple reactions and competing discourses beyond the clinically defined symptoms of grief. Definitions of grief have undergone considerable modifications since the early work of bereavement theorists from the 1940s and five-stage model introduced by Elisabeth Kübler-Ross in 1969. Notwithstanding the highly mutable ways that grief expresses itself, there are clear indications emerging from clinical research that the ‘usual’ forms of grief associated with bereavement are developing into cases of so-called ‘complicated grief’ due, not just to Covid-19 deaths, but the added psychological trauma of multiple bereavements within families, loved ones dying alone and funerals taking place with restricted numbers because of social distancing. This also represents a type of ‘disenfranchised grief’ when a person’s grief is not socially facilitated or where public mourning is denied. Indeed, writing in 2012, Stanescu observed that when this happens it entails the denial of ‘tangible, social intelligibility’, linked to questions about who gets to count as human. This is how we ‘constitute the political’ (Stanescu, 2012, 569). Stanescu’s theoretical framing here helps to contextualise the politics and counter-narrative lying behind the National Covid Memorial Wall, an ‘unofficial’ site of mourning located on the South Bank and instigated by bereaved families to mark the loss of those who died during the pandemic. The site draws attention to the number of deaths in care homes, but also those not counted in the Government’s national statistics.
Covid-19 has interpellated all of us as vectors and receivers, survivors and storytellers, revealing our interdependencies and vulnerabilities. The value of the ‘narrative turn’, be it in the fluid genres of illness or grief narratives, the more formalist elements of narrative medicine or semi-structured approach of oral history interviews, continues to be essential in terms of better understanding the processes of meaning-making in the experience of ill health. Whilst this has been the cornerstone of much teaching and research within the medical humanities, it has not gone unchallenged, though debates here have frequently become polarised (Ahlzén, 2019; Woods, 2014). In pandemic times, story-telling about illness, disease and grief have been leveraged in myriad and malleable ways, articulated through audio and video diaries, blogs, Zoom and social media, often in the form of ‘frontline’ narrativised experiences ‘going viral’, further garnering public support and levying charitable funds or resources. By dint of its pandemic scale, we have all been engaged in anticipatory grief and illness narratives of some kind.
Covid survivor stories and personalised grief narratives, as well as different expressions of societal or collective anticipatory grief, have contributed to the cultural reframing of illness, terminal disease, age-related conditions and mental health issues. The emergence of Covid-19 in the UK has seen these being re-prioritised as part of a hierarchy of care within the Government’s directive to protect the NHS. Reflection on this, as well as the phenomenology of illness, disease and grief post-Covid, will doubtless give renewed impetus to the affective power of embodied multisensory experience and experiential narratives as complementary rather than binary processes.
Dr Deborah Madden is a cultural historian and Deputy Director for the Centre for Memory, Narrative and Histories at the University of Brighton, where she leads the area of medical histories and ‘Everyday Cultures of Grief’ project. She has a developing research interest in the historical, cultural and mutable aspects of grief, which is informed by therapeutic practice. She has an expertise in the different narrative approaches within healthcare settings and their critical perspectives. Her forthcoming book, Victorian lives between Empires: Perspectives on Colonial Knowledge, Imperialism and British Cultural Memory, is due to be published in the Palgrave Studies in Life Writing series.
The author would like to acknowledge and thank Dr Sam Carroll for her work conducting the first two phases of oral history interviews and Martha Beard for transcription and thematic analysis.
The ‘Everyday Cultures of Grief’ project was supported by funds from the University of Brighton’s Research and Enterprise Covid-19 Research Urgency Fund and a Research Support Fund from the Centre for Memory, Narrative and Histories.
The author declares no conflict of interest in the research and production of this article.
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 These different models of ‘being with’ patients offer an effective means of engaging patients unable to communicate verbally. They are discussed in more detail in Tara Flanagan’s Narrative Medicine in Hospice Care (2020).