The Forms of Care project was an ESRC-funded ethnographic study examining instances where palliative and end-of-life care staff, either individually or collectively, sometimes decide that the most caring thing to do for a patient is to stop or not begin new treatments.
By drawing on anthropological theories and methods we examined instances of not intervening. We followed two palliative care teams to observe their everyday work, and in the course of this interviewed staff and patients. We analysed the extent to which different values and criteria were being drawn on, and what this meant for the care patients received.
The Forms of Care project was an ESRC-funded ethnographic study examining instances where palliative and end-of-life care staff, either individually or collectively, sometimes decide that the most caring thing to do for a patient is to stop or not begin new treatments. It was a collaboration between London School of Hygiene and Tropical Medicine and the Open University. The project ran from September 2017 to May 2021.
On this website we collated the activities, outputs and resources generated by the project. You can also follow the project on Twitter.
There is currently a great deal of interest in how the NHS as a whole is having to make treatment decisions at both the policy and individual level by taking into account diverse criteria and values. As part of this, a lot of debate has focused on so-called 'over-treatment' and high-profile cases of medical neglect. However, in practice, and between these two extremes, medical care regularly involves more modest practices of simply not intervening or of withdrawing treatment.
The study documented the range of forms and occasions when not intervening emerges as part of everyday practice. This can refer to a particular medication, a general course of action, or broader aspect of care. In contrast to cases of neglect, such practices of not intervening are not only routine but form significant dimension of much routine medical care. Nevertheless, they frequently lead to tensions and clashes with the more dominant clinical logic of active management, and often with patients' and relatives' hopes and expectations.
In contrast to ideas of medical neglect, we explored how these routine practices of not doing, whether they are conscious and deliberate or the result of more distributed social interactions, are nevertheless an active and valuable form of care. We looked at things including how staff interacted with patients, as well as how and when they spoke to family members and staff members. We also looked at how equipment, hospital and home environments, and sometimes everyday objects play an active part in these interactions.
Through observing staff members on the wards and in multidisciplinary team meetings we were able to attend to how different clinical priorities emerged. We showed how the drive to see patients as persons sometimes led to life-sustaining interventions being stopped. We highlighted the ongoing efforts to adjust a patient's surroundings, whether a hospital ward or their home, to make the place as fitting to the patient’s needs as possible. Towards the end of the project, we attended to the ways in which palliative care staff tried to establish a sense of connection and professional intimacy with patients during the Covid pandemic. We also published some methodological reflections on how one might go about researching ‘not doing’ or other forms of absences.
By drawing on anthropological theories and methods we analysed the way ‘not doing’ emerged as an alternative 'logic of care' in practice, and how people themselves differentiated it from both neglect and the medical imperative to act.
The project sought to:
- Describe and examine the multiple occasions and forms when palliative care staff actively do not do something, conceptualising such ‘non-interventions’ as productive and meaningful social and material practices
- Examine if and when ‘non-interventions’ clash with the more dominant biomedical imperative to always intervene, and how individuals, teams, and systems deal with this
- Describe how a sample of patients, and their relatives and carers, make sense of these practices
- Contribute to a growing body of social science research of health concerned with social practice by developing theoretical and methodological approaches that are able to take acts of not doing ‘seriously’
- Invite a range of stakeholders, during innovative workshop sessions, to reflect upon the ethnographic findings and help generate insights into how ‘non-interventions’ are perceived outside the immediate clinical setting or personal experience
- Develop a range of outputs and resources for others to use
The ethnographic study of palliative and end of life care took place in a large NHS hospital and its neighbouring community services.
Ethnography is a method of data collection which involves extensive observation of, and participation in the daily lives and work of individual people and groups.
Through shadowing clinical staff in their everyday work, we sought to develop an in-depth understanding of decision-making processes around care. We paid attention to capture the unspoken and sometimes tacit ways of working.
We observed weekly multidisciplinary team meetings of the palliative care teams from May 2018 – January 2020. Annelieke shadowed staff on home and hospital visits between November 2018 and November 2019.
Through interviewing palliative care staff, as well as patients and their close family members, we compiled detailed case studies of palliative care practices.
As part of the project, a range of workshops we called 'collaboratories' complemented data collection. These workshops and events ensured active engagement of study participants in the research process, as well as joint reflection on research findings and possible translations into medical practice.
The collaboratories we held were:Collaboratory with two palliative care teams to discuss the project and key concerns. 23 May 2018. Collaboratory with two palliative care teams exploring decision making in palliative and end-of life-care. 29 May 2019.
We analysed how ‘active non-interventions’ established an alternative ‘logic of care’, and how people themselves differentiated these from both neglect and the imperative to act. Our work contributed to the re-conceptualisation of instances of medical ‘non-intervention’ as an integral form of care, and to current debates about what appropriate clinical practice and good care is and can be.
Collaboratory with the community palliative care team on communication as care, and care for communication. 26 June 2019.
Collaboratory with two palliative care teams on place of death. 12 February 2020
Online collaboratory with two palliative care teams on end-of-life care in times of Covid19. 8 July 2020
Simon Cohn is Professor of medical anthropology at the London School of Hygiene and Tropical Medicine (LSHTM). He has conducted research on a wide range of health and illness-related topics, including observational research in secondary care settings, large multidisciplinary research projects, and clinical trials.
Erica Borgstrom is Senior Lecturer at the Open University (OU). Erica has been conducting research in palliative and end-of-life care within the NHS and hospices since 2009. This includes ethnographic research about clinical care and interviews with staff and patients about care and care planning.
Annelieke Driessen worked as a research fellow in the Forms of Care project at LSHTM between 2018 and 2021. She previously conducted work on dementia and care in the Netherlands, and has since worked on patient and family experiences of intensive care during the Covid19 pandemic.
Our project partners include the specialist palliative care teams in a large London hospital and community service. Dr Sarah Yardley and Dr Jonathan Martin were the clinical collaborators, and Dr Katie Dumble joined the team as a clinical researcher.
5 November 2019. “The entanglements of doing and not doing and what gets noticed in end of life care.” S. Cohn, A. Driessen and E. Borgstrom. University of Copenhagen.
12 November 2019. “Why does global health need to talk about death?“ S. Cohn. Global Health Lab Discussions, Panel discussion. Centre for Global Chronic Conditions series event. LSHTM.
(See also this comment by Richard Horton in The Lancet, Offline, 23 November 2019)
16 May 2019. “Leading and following: rethinking agency through an ethnography of palliative care teams in the UK.” A. Driessen, S. Cohn and E. Borgstrom. Seminar Series of P6 research collective: Body, Knowledge, Subjectivity. Department of Technology and Social Change (TEMA-T), Linköping University.
18-21 January 2022. "In spite of methods". Mobilising Methods conference, Royal Anthropological Instiute (RAI). Convenors: : S. Cohn and A. Driessen
18-21 August 2020. “‘Not doing’ in times of crisis: Agency and the urgency of pause and restraint“. EASST – 4S, Prague. Convenors: A. Driessen and S. Cohn
13 September 2019. Special Event “Sociological Contributions to Palliative and End of Life Care” with MacArtney, J.; Krawczyk, M.; Driessen, A., S. Cohn, E. Borgstrom and Almack, K. BSA Medical Sociology annual conference, York.
13-15 April 2021. “Folding time: making futures at the end of life”. Driessen, A, Borgstrom, E. and S. Cohn. Remaking the future, British Sociological Association, Annual Conference 2021
4-6 March 2021. “Dying at home: Making vital places at the end of life.” Driessen, A., Borgstrom, E. and S. Cohn. Chronic Living Conference organised by the University of Copenhagen (virtual conference)
4-6 March 2021. “Non-interventions as a form of care: thinking about the end of life”. S. Cohn, Driessen, A. and Borgstrom, E., Chronic Living Conference organised by the University of Copenhagen (virtual conference)
3-4 September 2020. “End-of-life care in England during the Covid-19 pandemic,” Driessen, A., Borgstrom, E. and S. Cohn. Death and Culture III (virtual conference)
18-21 August 2020. “Rethinking ‘doing everything’ at the end of life: an ethnography of “non-interventions” in palliative care”. Driessen, A. and Cohn, S. 4S/EASST (virtual conference)
5 December 2019. “Placing death and dying: On the work of relationships in making place at the end of life.” A. Driessen, S. Cohn and E. Borgstrom. British Sociological Association (BSA), Death, Dying and Bereavement Study Group Annual Symposium, Sheffield
11-13 September 2019. “To lead, to follow, to let happen: An ethnography of (non)-intervention at the end of life.” A. Driessen, S. Cohn and E. Borgstrom. BSA Medical Sociology annual conference, York
1 June 2019. “Control over, and control with – An exploration of examples of tinkering towards control in end of life care.” A. Driessen, S. Cohn and E. Borgstrom. Workshop ‘Caring Control_Controlling Care’. Anthropology department, University of Amsterdam.
24-27 July 2018. “Crafting attachments and detachments in palliative care”. A. Driessen, S. Cohn and E. Borgstrom. In: panel “Crafting attachments, making worlds”. Co-convened with E. Vogel and J.Laurent. EASST, Lancaster. Convenors: E. Vogel, J, Laurent and A. Driessen. EASST, Lancaster.
1-2 October 2018 “Intervening & Influencing”. A. Driessen, S. Cohn and E. Borgstrom. Re-politicising Public Health: A workshop for early career ethnographers. Kings College London & LSHTM, London.
14-16 May 2020.“Multidisciplinary Team Meetings as care in practice: An ethnography of hospital and community palliative care in the UK.” E. Borgstrom, S. Cohn, A. Driessen, K. Dumble, J. Martin & S. Yardley. European Association for Palliative Care (EAPC), Palermo. [Find poster here]
Forms of Care: A stop-motion animation
This short animated video tells the story of a woman and her dying mother, focusing on everyday forms of care. The script is taken verbatim from an interview conducted as part of the Forms of Care project. Made by Charlotte Kühlbrandt and Maayan Matz.
Animation movie "Not intervening as a form of care"
Have you ever heard the phrase “I’m afraid nothing more can be done” in the context of health care? In this animation film we highlight that the problem is that it can suggest resignation or failure, and that in our study, we have identified this as a moment not when everything suddenly stops, but when a different form of care can be offered.
The Forms of Care podcast series, featuring the Forms of Care researchers: Simon Cohn, Erica Borgstrom and Annelieke Driessen. Produced by Amy Thomas. Episodes:
1) Introducing the Forms of care project
2) Turning less into more
3) Living when death is near
Dataset: Forms of Care: Ethnographic Interviews About Palliative Care With Health Professionals in London, 2017-2021 [Data Collection]. UK Data Service, Colchester, Essex, United Kingdom. https://doi.org/10.5255/UKDA-SN-855055]
Poster: Multidisciplinary Team Meetings as care in practice: An ethnography of hospital and community palliative care in the UK
Poster: Placing death and dying: The work of making place at the end of life. doi.org/10.1136/spcare-2020-PCC.76
Webinar: End-of-life care in England during the Covid-19 Pandemic. In the ‘Anthropological Contributions to the Covid-19 Crisis’ series of the Royal Anthropological Institute
Podcast episode: What does it mean to care? In The Being Human Show
BBC Ideas Film: Should everyone have an 'end-of-life' plan? Featuring Erica Borgstrom and Sarah Yardley from the Forms of Care team
Mention in book chapter: The stories we tell and hear: how we can learn from carefully crafting in uncertainty (2021) Sarah Yardley. In: Sean Michael Morris, Lucy Rai, and Karen Littleton (eds) Voices of Practice: Narrative Scholarship from the Margins. Pressbooks.
The COVID-19 pandemic began at a time when the fieldwork was nearing its end. It raised urgent questions about the provision of end-of-life care for health care providers across the health care system. The research team wrote a number of blogs to bring key findings from the Forms of Care project into conversation with these emerging concerns.
Below, you can read:
- Virtual patient visits: bringing into view family member-staff relationships in times of COVID-19
- Dying is a social reality
- A time to reflect on end of life care
- How Covid-19 challenges our notions of a good death
- Non-doing in times of crisis: reflections on Covid-19
By Annelieke Driessen, Simon Cohn and Erica Borgstrom
Physical distancing measures during the COVID-19 pandemic have hindered communication between hospitalised patients and their family members. Sasangohar and colleagues[i] provide insight into use of an existing virtual intensive care unit (ICU) to facilitate online family visits amid Covid-19 visiting restrictions at a large, tertiary hospital in the United States. The paper raises some fascinating issues.
At one level, the authors simply describe the strategic adoption of a telemedicine platform that enables doctors to interact with patients using dedicated technologies, with the assistance of a bedside nurse. The platform was originally designed to allow healthcare systems to cope with the growing number of ICU patients over recent years. But, during the pandemic, the hospital site introduced the opportunity for family members to make use of the system in order to see and, if possible, talk to, a patient in ICU whilst keeping physically isolated. Drawing on pragmatically collected qualitative data, the authors outline the clear value these encounters offered and describe how grateful family members were for such opportunities at a time when visiting face-to-face was largely impossible.
On another level, the authors provide a view of the additional efforts required to make such a platform work for visitors as well as for healthcare professionals. To arrange a virtual visit, family members had to contact the ICU or the system’s operational centre; they then would receive a text or e-mail from a staff member that provided a weblink to enter the system. Even during a virtual visit, a bedside nurse was usually present. The implicit point is that such visits are normally referred to as ‘patient visits’, and in the article as ‘virtual patient visits’, but this belies the fact that there is much more to them than a person outside the hospital simply seeing and making contact with the patient.
So whilst the authors focus on facilitating virtual connections between family members and patients, we want to draw on data from our ethnography of palliative and end-of-life care in the UK[ii] to highlight the additional value of communication between families and staff that the article only mentions in passing. Indeed, the actual content of what is said in these encounters is often not the primary concern; what is significant is that the communication itself occurs. Family members gain a great deal from interactions with staff members that occur alongside seeing their loved ones – whether this takes the form of formal meetings and discussions, or more casual and momentary interactions with staff performing their standard work.
Our research shows that the desire to see a loved one who is critically ill in an ICU is also about seeing that they are being cared for, and making – albeit very fleetingly – relationships with those who are providing the care. It provides a way to develop a sense of trust, so that relatives can gain the sense that the healthcare team is striving to make the very best decisions for those close to them, even in situations that are uncertain, such as during the Covid-19 pandemic.
Relationships are not just sought by family members – they are just as important for clinical staff, especially in situations which are uncertain and perilous. In a virtual interview with us in May 2020, one ICU Consultant, Dr. Braun[iii], recounted that the absence of family members in the initial weeks of the COVID-19 pandemic brought into sharp relief the importance of communication with those close to the patient.[iv] Dr Braun and his team became increasingly aware that uncertainties about the disease were often exacerbated by the inability of patients, families and staff to meet together, face-to-face. Such conversations not only offer a means to glean more personal insight about who their patients are, especially if they are sedated and unconscious, but also allow staff themselves to expand their role from solely technical management to being part of a relationship based on human empathy and care. Not only did Dr Braun’s clinical team begin to proactively call family members, but they came to do this on a regular basis, even if the only update was that the condition of the patient had not changed.[v] Dr Braun saw this increased contact with family members as one of the few gains of the pandemic, and something they were hoping to continue in the future – for the sake of relatives and clinical staff.
The development of a relationship between staff and family members also shapes how relatives then relate to their ill loved ones. Even before the COVID-19 pandemic, we often observed ways in which staff encourage relatives to engage with the patient in specific ways. In one example, Annelieke accompanied Specialist Palliative Care consultant Dr. Clarke on a visit to Francesca, a comatose patient on a neurological ward, who was also being visited by her sister Marie at the time. Dr Clarke invited Marie into the nursing station for a longer chat. Towards the end of the conversation, Dr Clarke suggested to Marie that it was not certain if comatose patients can hear anything, but, “just in case. . .you could perhaps play some music to her that she liked, or you could read to her, if that is something you would imagine doing?” Afterward, Dr Clarke shared, “I am just thinking about the legacy: the way family members are going to look back after the patient has passed away”. In creating an opportunity for Marie to be more actively involved in Francesca’s care, Dr Clarke hoped she might one day look back on this distressing time a little more positively.
Through this lens, the organisation of virtual patient visits as described by Sasangohar and colleagues can also be understood as an opportunity to shape a better legacy. Encounters that are mediated through technology unfortunately cannot enable physical co-presence and touch. Other benefits to patient visits such as learning from patient-family interactions and creating trust will require additional investments into establishing contact with family members. But the visits potentially offer family members more than the memory of seeing their loved one while they were very sick, and in some cases in their last days of life. Through the brief but significant relationships they make with the staff in creating these virtual visits, family members may well also be able to feel that they were actively taking part in providing care for their loved one.
[i] Sasangohar F. et al. Use of Tele-Critical Care for Family Visitation to ICU During the COVID-19 Pandemic: An Interview Study and Sentiment Analysis. BMJ Qual Saf. 2020 Feb 28 [Epub ahead of print]. https://qualitysafety.bmj.com/content/early/2020/10/11/bmjqs-2020-011604.info.
[ii] See for the central premise of the project, Borgstrom, E., Cohn, S., & Driessen, A. (2020). ‘We come in as “the nothing”’. Medicine Anthropology Theory, 7(2). https://doi.org/10.17157/mat.7.2.769
[iii] All personal names have been replaced by pseudonyms to ensure confidentiality.
[iv] Driessen, A; Borgstrom, E; Cohn, S. “Ways of ‘being with’: caring for dying patients at the height of the COVID pandemic.” (Forthcoming). Anthropology in Action. 28 (1) xx
[v] For similar and additional interventions to support family members of ICU patients with COVID-19, see Lissoni, B., Del Negro, S., Brioschi, P., Casella, G., Fontana, I., Bruni, C., Lamiani, G., 2020. Promoting Resilience in the Acute Phase of the COVID-19 Pandemic: Psychological Interventions for Intensive Care Unit (ICU) Clinicians and Family Members. Psychological Trauma: Theory, Research, Practice, and Policy12, S105–S107. https://doi.org/10.1037/tra0000802
"Virtual patient visits: bringing into view family member-staff relationships in times of COVID-19" by Annelieke Driessen, Simon Cohn and Erica Borgstrom was previously published on BMJ Quality and Safety under the creative commons licence CC BY-NC CC 2.0.
by Simon Cohn, Annelieke Driessen & Erica Borgstrom
Once invisible and distant
Many are suggesting that the coronavirus outbreak is exposing the collective reluctance contemporary Western societies have to engage with matters relating to mortality. Typically, it is argued that because of the enormous successes of biomedicine, coupled to wider cultural changes during the last century, taboos about death and the dead extended to even talking about dying. Others, including Borgstrom, have argued that people, in countries like the UK, are not afraid to talk about death and dying per se, but rather about when and how we will die ourselves. Nevertheless, whatever the reasons, the effect is that for most of us, most of the time, death has been kept at a distance and out of sight.
But now suddenly we seem to be confronted with it every day. At the same time as many of us are having to deal with the grief of someone we know having died from the disease, we are being bombarded by multiple graphs, reams of numbers and startling images of death and dying – such as a man lying dead in an otherwise deserted street, or of dying patients saying their goodbyes to loved ones via iPads. All these combine to produce a palpable sense of the proximity of death – even for those who previously felt far removed from this possibility.
From Individual to collective
This shift from invisibility and distance to visibility and proximity is being paralleled by a second change in register. A great deal of existing policy and debate around end of life care is built upon values of the individual person – such as the focus on autonomy and the importance of a patient to make their own decisions about how they will to be cared for. In contrast, responses to the epidemic have rapidly highlighted the interconnectedness of health, living, and dying; between neighbours, within a city, throughout a rural area, and across national borders. For example, in the UK, the need for those who do not work in ‘essential professions’ to stay home has been framed as a responsibility to protect the NHS and to save the lives of others. And, over recent weeks, the somewhat contested debate about wearing face masks has shifted from it being presented as a potential strategy to protect the wearer to protecting everyone she might come into contact with. Abruptly, it seems that the risk to our individual health has spilled over into a renewed awareness of the social.
Responses to the epidemic have rapidly highlighted the interconnectedness of health, living, and dying; between neighbours, within a city, throughout a rural area, and across national borders.
This sense of the collective is also being played out publicly. The initiative to thank carers by clapping on our doorsteps, balconies and rooftops at 8 p.m. on Thursdays for a while united much of the country - a welcome relief from the divisiveness of recent Brexit debates. Analogies are continually being made to wartime – not solely in terms of the devastating suffering the virus is causing, its long-term devastation on the economy, or the references to the heroism of the staff of the National Health Service – but to the rise of a war-time spirit of public solidarity. Indeed, Prime minister Boris Johnson, in a somewhat heavy-handed pastiche of Churchill, deliberately referred to the significance of society, and in so doing made a historical dismissal of the famous claim by Margaret Thatcher that there was ‘no such thing as society’.
Are we now more social?
Historians could no doubt suggest a clear link between capitalism, the rise of Individualism and the concealment of death; that a growing emphasis on property and wealth accumulation also fostered values of self-sufficiency, independence and privacy (see, for example, the work of Tony Walter). But these cultural values have hardly gone away, despite optimistic commentaries pointing out a new sense of the collective and that at least one positive thing coming from this crisis has been a recognition for those who care for us all.
An alternative interpretation is to suggest how the pandemic is foregrounding what has always been the case, but that this has often been ignored because it appears to be paradoxical: that we are individuals because we are social, and that we are able to be autonomous because we rely on others (cf. Tronto 1993).
Of course, a sociologically informed perspective might not see such conclusions as paradoxes at all; how we have come to construct what is social and what is individual serves to do much of the work that ensures that in everyday life they appear distinct and oppositional. So while we are not dismissing the current visibility of the social, that is accompanying the visibility of death and dying, we should not see either as necessarily constituting a radical cultural shift. Rather, it may be that the pandemic is merely making what we take to be our ‘normal’ ways of being visible, opening them up for reflection.
Covid 19 is a social as well as a medical phenomenon.
But there is a further consideration that needs to be taken into account in order to really appreciate the impact of the pandemic on our experience of being social – and that is that it is rapidly becoming clear that the virus is not affecting all of us equally. Like any other contagious disease, Covid 19 is a social as well as a medical phenomenon. Social aspects configure how it can spread, and how it may be contained: Covid-19 aggravates and amplifies existing forms of inequality, whether we are talking about BAME groups, rough-sleepers, or ‘the disenfranchised’. The intractability of enduring health inequalities is a long-standing observation, of course. But we are witnessing the violence of social inequalities in a new overt way; the virus affects certain communities disproportionately by traveling on existing vectors of discrimination, poverty and vulnerability – revealing these as material realities through stark graphs, maps and images. The social, then, is not altogether a positive – it encompasses the ways we are, and are together, for better and for worse.
So, in the midst of all this suffering, as the coronavirus continues to shape the way contemporary Western societies make sense of death as it becomes more visible and proximate, we also need to reflect on the ways we might inadvertently be perpetuating the idea that dying is something that just happens to individuals: we need to recognise that dying is as much a social process as the social is an individual capacity.
Simon Cohn, Annelieke Driessen & Erica Borgstrom
The new visibility of death and dying
The current pandemic is inescapably foregrounding questions relating to death and dying (Woodthorpe, 2020). The number and time-concentration of COVID-19 patients requiring end-of-life care is expanding the remit of palliative care services into new settings. And because it is stretching NHS resources, the care of non-COVID patients is in danger of being displaced.
In these extraordinary times, professionals are having to make rapid and often very difficult decisions concerning who is appropriate for specialist care, the need for planning in advance, and the urgency to talk with patients and their relatives about these issues despite the need to maintain physical distancing. They must invent new ways of making relatives present in their physical absence at the death bed of their loved one.
It is vital to take note of the shifts occurring, and the impact these changes are having on healthcare professionals as they deal with new pressures and competing demands - not only in order to inform current practice and preparedness for the future, but because it is likely many of these changes will be enduring more generally. Although health service research into policy development at national and local levels is clearly highly relevant it is also important to capture the everyday, personal experiences of healthcare providers as they cope with the situation, and are having to accommodate and make sense of these changes.
Anthropology can offer a unique contribution by documenting these shifts via first-hand accounts from a variety of healthcare professionals. Following conversations with front line staff, we present some initial observations here.
Anthropology can offer a unique contribution by documenting shifts in end-of-life care provision via first-hand accounts from healthcare professionals.
Diffusion and distance
In the initial weeks of the pandemic, attention focused on hospitals and the work of palliative care specialists advising and supporting other teams in their dealing with end of life matters. As has been noted, secondary care staff were being forced to undertake ‘emergency palliative care’ at an unprecedented scale (Fusi-Schmidhauser et al., 2020). This approach did not initially reach community services, which focused instead on avoiding hospital admissions and upholding their usual treatment decision frameworks. But as it became more apparent that a large number of deaths were occurring in the community, the remit of palliative care had to expand to other healthcare professionals in primary care and other settings. Whilst policy in England has often proposed that end-of-life care should not just be the remit of specialist services but should be ‘everyone’s business’ (Finlay, 2016; see also Clark, 2018), the pandemic has rapidly forced this diffusion without the agreed procedures, training or resources necessary to ensure staff feel confident and supported.
Across the hospital and the community, staff are now having to deal with end-of-life issues in ways that are more abrupt and wrought with uncertainty. Compared to many of the more typical cases palliative care specialists manage, the end of life for COVID-19 patients is compressed into a much shorter period of time. Dealing with death and dying under such conditions is not easy. Despite these increased efforts for support, professionals we have been working with on the Forms of Care Project tell us that many staff feel anxious, and that the sense of constant change makes them worried they are being inconsistent. As one doctor put it, ‘Everybody is having to give bad news, and how do you do that? People who may not have those conversations or not want them; now have to have them….’
Since stricter physical distancing has become ‘the norm’ routine visits to assess a patient in order to determine where they might be on a dying trajectory, or make referrals to many other services, or adjust medications, is often now impossible. And potentially more significant than this, it is also preventing staff establishing what they feel is a meaningful relationship with the patient, which is normally seen as a core feature of end of life care. Instead, they are having to rely on remote practices – telephone calls, video calls, or depend more on reports from care home staff. Said one consultant, ‘Relatives cannot come in to the hospital because it would put them at risk, so we are having to call them every day. But that means we are trying to reassure people we have never seen before’. If staff do see patients, they try and curtail the length of a visit, and have to wear full PPE.
Many staff are having to cope with tensions when they get home, negotiating with family members over their commitment to go to work, while others are on medication in order to cope.
All these distancing requirements are potentially undermining the very idea that care, and especially care for the dying should be based on close and long-term contact. But there is also a new concern that staff are not used to reflecting on; the risk of contracting the disease and dying not only in relation to themselves but also their immediate family. Although this certainly doesn’t impede what professionals are doing on a day-to-day level, the sense of vulnerability is meaning they must not only establish their own way of working practically, but also emotionally, exacerbating the sense that they themselves are also feeling isolated. This ‘mortal fear’, as one doctor described it, is taking its toll; many staff are having to cope with tensions when they get home, negotiating with family members over their commitment to go to work, while others are on medication in order to cope.
Capturing the irreconcilable
The diffusion of end of life issues across so many different sectors is generating new concerns, both about making contact and keeping distance. It may be seductive to try and seek solutions to these – to devise new guidelines or propose particular interventions. And yet it is clear that actually the majority of these issues arise from the fact there are multiple things going on at any one time, and multiple values at stake. So whilst scientific and clinical knowledge of COVID-19 is essential, the crisis also illustrates the extent to which these must be accompanied by broader understandings of the provision of end of life services and emerging public debates over how, as a society, we might care for others as well as care for our carers (Buffel et al., 2020; Matthews, 2020; Shah, 2020).
The strength of anthropological contributions is not only to describe how health care professionals care for others, alongside their own personal fears and concerns, but to also highlight the different values and concerns which emerge in medical practice and the tensions between them (Borgstrom et al., 2010). These include what is in a patient’s best interests, and how that might be delivered given the many practical constraints; who is responsible for care decisions; and the extent to which staff feel professionally isolated and vulnerable.
The time-compression of many of their end of life trajectories, and the imposed considerations about distance and proximity - will force us all to question what exactly the care in end of life care should be.
The resulting insights are essential for healthcare services to fully appreciate the impact of the pandemic and interrogate how staff have had to respond to these rapid changes. They will also have enormous relevance in relation to the rising number of people requiring end-of-life care in the next decades more generally (Gomes & Higginson, 2008). But more than these, in the midst of the pandemic - personal accounts of the sudden intensity of a large number of dying patients, the time-compression of many of their end of life trajectories, and the imposed considerations about distance and proximity - will force us all to question what exactly the care in end of life care should be.
by Erica Borgstrom
The news of deaths related to Covid-19 both in the UK and globally is our current daily reality. You may even be reading them with your morning coffee and afternoon tea. This article is one of them. The current Covid-19 pandemic has brought death to the forefront, challenging societal ideas of what a good death is and the funerary norms we expect after someone has died.
Some say that death is a taboo in the UK, but along with many other academics, I’d argue that this is not the case. Indeed, these daily – sometimes hourly updated – headlines indicate that we are all engrossed in knowing more about death and that talking, or at least reading, about it won’t cause death per se. Instead, I’d argue that many are concerned about what dying is like and are apprehensive to discuss their fears about when and how it may finally happen to us or those we care about and what kind of legacy one leaves behind. So culturally and socially, to help us make sense of those concerns, we invest in ideals around how death and dying should be– a so-called good death.
I’m not suggesting that there is one archetypical good death that we all strive to have. My own research about end-of-life care in England over the last 10 years has indicated that this is both impossible and also undesirable, especially if people think their deaths should reflect a notion of their individuality. But there are certain cultural scripts for how we societally evaluate some deaths as being relatively good, and these can vary between cultures. And COVID-19 is challenging a lot of those scripts, especially in countries like the UK and the USA.
COVID-19 is challenging a lot of our cultural scripts of a good death, especially in countries like the UK and the USA
Firstly, a timely death is often part of what people think of when they envision a good death. It is neither ‘before one’s time’ or after prolonged dying. Shortly after the first confirmed deaths in the UK from COVID-19 came an article naming the deceased, announcing how their lives were cut short, which continues to be updated. Even the Prime Minster suggested that many people would ‘lose loved ones before their time’; as a social scientist, I think we should be critical of a government that is willing to accept the presumption that some groups of people will – and can – die before their time.
To counter the narrative that it only older people dying, articles highlighting how young some of the deceased have been, serve not only to highlight how COVID-19 can affect people of any age, but also how untimely the deaths may be. As a society, such articles invite us to grieve these deaths of adolescents or of parents with young children, for example, as a way of reminding us how this pandemic is causing tragic deaths rather than so-called good ones.
Another common feature of the good death trope is that the dying person is in familiar surroundings. This is often read to mean their own home, and has been a key policy driver in end-of-life care to increase the amount of people dying at home (rather than hospital) for the past 10 years. It’s reverse – dying in an unfamiliar place, like a hospital – can be deemed undesirable, even if hospital care is needed. With COVID-19, it currently appears as if most of the reported deaths are occurring in hospital. Deaths in ICU are culturally considered to be particularly tragic as it is the site imbued with hope and last attempts to fight off death. If ICU deaths were troublesome deaths before COVID-19, it will be even harder to reconcile them with the concept of a good death now.
Because the coronavirus is an infections disease, the dying person and their dead body are being treated like a site of contagion. This means that those dying from COVID-19 may be doing so alone. Typically, people are judgemental or upset upon hearing if someone has died alone (although some people may prefer this). With restrictions on who can visit in hospital, our response to COVID-19 means that more people are likely to die alone – either from the disease or even from other causes. There are even reports of people dying alone at home, prompting some on social media to encourage others to check on all their friends and neighbours who are self-isolating, not just to provide support but to ensure their dead body is found in a timely manner.
Being a contagion also means that how the body is treated after death has changed. In some places, this means direct cremations has been recommended to minimise the risk of the disease spreading. Rather than a large funeral marking a great life – and good death – memorial gatherings are having to be limited with enforced social distancing, and family and friends live streaming the service. There may also be no family at a service if they themselves are ill. Although we often think of a good death in terms of how a person dies, culturally how the death is marked is another way of determining the value of a person’s death.
We are still in challenging and changing times. We don’t know for sure the long-term impacts dying in the time of Covid-19 will have on the bereaved, our healthcare and death work systems. One thing that is certain is that the current situation is not one many people would have expected for their own death or that of someone they care about.
"How Covid-19 challenges our notions of a good death" by Erica Borgstrom was previously published on Disover Society is licensed under the creative commons licence CC BY-NC-ND 3.0.
Annelieke Driessen, Simon Cohn and Erica Borgstrom
Late last year, in a time now dubbed “B.C.” (before Corona), we wrote an abstract for a panel at the 2020 EASST/4S conference which we called ‘Not doing’ in times of crisis: agency and the urgency of pause and restraint'. We centred the panel around the question, ‘in a time when many are finally responding to the imperative to “act now” in response to all sorts of global emergencies, what is the role and value of not doing as a feature of agency, and potentially a dimension of social and political change?’
By the time the call for abstracts closed on the 29th of February of this year, Covid-19 had become a primary topic in almost every part of the world. Most social events were cancelled, including academic conferences, in order adhere to the rising demands for ‘social distancing’ (or physically distancing which is what it really represents). Our call for papers was retweeted by colleagues, with the comment “This has new meaning now”. The organisers of the conference sent out a notice saying that they were lucky enough not to have to make decisions regarding cancellation yet, as the conference was planned for August. The irony was not lost on us: the organisers, too, were forced to consider and potentially do non-doing at a time of crisis.
But the relevance of our abstract is actually much more specific. The premise that gave the impulse for our panel lies at the heart of our current ethnographic research project Forms of care, conducted with two specialist palliative care teams in London. A great deal of the care they provide does not concern the introduction of new medical interventions, but judging when and how best to withdraw the interventions a patient might be currently on.
Agency and action are considered to be inherently interlinked, and, by definition, are commonly used in combination to define who, and even exactly what, an actor is. But the problem is, because dominant narratives consistently stage action as positive, urgent and productive, forms of non-doing and absences of people, actions, matter or plans, tend to be conceived, by default, as negative. They are relegated to being signs of hesitancy, indecision or simply as failings. And so, during this unprecedented time, as inaccurate reports in the media imply medical care in the UK and elsewhere is having to recommend euthanasia, palliative care is increasingly being positioned in opposition to other medical specialisms. While the latter are characterised as heroically driven by curative aims, palliative care is associated with phrases such as “there is nothing more that can be done”.
Because dominant narratives consistently stage action as positive, urgent and productive, forms of non-doing and absences of people, actions, matter or plans, tend to be conceived, by default, as negative.
The foundation of our Forms of Care project is that this dualism does not adequately capture what palliative care does. Instead, we asked, playfully aware of the inherent paradox in our question: what is “nothing” done? And how can it be defended as a valid and essential form of care for those facing the end of their lives?
This question strongly resonates with many other aspects of the current Covid-19 situation. The number of people testing positive or showing signs of infection (but remaining untested) are increasing by the day. Governments around the world are calling upon their citizens to stay indoors as much as possible, to ‘lockdown’ and only to leave their home if it is absolutely necessary. Given a whole different set of ‘not doings’ are emerging in the face of this crisis what, we wondered, can we say about them based on our current project.
We see three parallels between the things we have learnt from our study and the current situation.
Firstly, in our project, not-doing emerged as a doing in itself, and a difficult one at that. Oftentimes, patients were referred to the hospital palliative care team for complex symptom management, but once involved, the specialist palliative care team initiated conversations with the patient about their wishes and emotional state, and if appropriate, whether the ongoing treatment was still the kindest care available.
During interviews in the summer and fall of 2019, specialist palliative care staff spoke of their task as being twofold: supporting patients in their last phase of life as well as their family members, and supporting other medical staff in reframing having no further treatment options from a failure to an opportunity. The latter enabled them to open up conversations about the end of life as a part of their care. This included a range of not-doings; of not admitting someone to hospital, not starting new treatments, or sometimes halting treatments already underway – all presented in conversations as why, at this moment, they were the best thing to do.
The heightened sense of what was “normal” before the pandemic emphasises that much of people’s ordinary ‘doings’ have come to a halt or have been changed in fundamental ways. In his 16 March address, UK prime minister Boris Johnson said: “We are asking people to do something that is difficult and disruptive of their lives.” So, not leaving the home too proves difficult to do.[i] The unfolding pandemic may offer possibilities to value ‘non-doing’ as an essential and ‘care-full’ feature of acting in the world.
Non-doing as relational
Secondly, we found in our study that the relationships into which a ‘non-doing’ is embedded gives it its meaning; these relationships make non-doing what it is. In a situation where a patient or their family expected more treatment, and were unable to comprehend what the staff were trying to convey – that continued treatment would now do more harm than good – the idea of stopping a particular intervention or medication was regularly interpreted as ‘giving up’.
The palliative team saw their work not merely to explain things aptly, but to engender trust and a sense of shared experience. In this way, appreciating the decision to stop or remove treatment was not conveyed simply through presenting the clinical argument, but was counterpoised by establishing genuine human relationships which provided different forms of connection and care; the fear of absence being complemented by a clear demonstration of presence. Doing so made not providing further treatment a form of care.
A similar set of moves are being played out in the current crisis. Members of the public are being told by government and health officials to stay at home not simply in order to reduce their own risks of infection, but for the good of the society – and, in the UK at least, for the good of the NHS. Staying at home three months ago was just staying at home, but now has become a way to save lives. In this way, we are asked to view compliance as a feature of the collective good, and non-doing as a form of collective action.
Staying at home three months ago was just staying at home, but now it has become a way to save lives.
Non-doing enables other practices
Thirdly, in our study the not-doing of ‘active treatments’ enabled other practices to take place. For example, halting a current intervention or set of tests often opened up a range of other prospects, that previously might not have been suitable or possible, such as being discharged from hospital, having home care, or being able to live with family members.
Similarly, collective inaction in terms of staying at home in lockdown has allowed parts of the "old normal" to be challenged and a wide range of new things to do to emerge. For example, there’s been a rise in virtual meetings including ‘virtual happy hours and a rapid transition to home working (even in companies who previously refused it). These in turn have allowed airplanes to stay grounded and air pollution to drop. These new ways can be instrumental in rethinking which parts of the “old normal” are worth going back to, and which new ways are best sustained instead.
As a minor illustration of this, we received a email from the EASST/4S conference organisers as we were writing this, which said: “We have concluded that it is not reasonable any longer to (techno)optimistically keep organizing the physical event.” But instead of postponing or cancelling, the conference will happen virtually – something that was not offered B.C. New potential ways of doing have emerged from its cancellation. They will need to be tested, trialled and continuously tinkered with, of course – but at the same time, will compel us to rethink what the individual and collective value of such an event should be in the future. In this sense, the current situation – despite its many harms – can potentially give rise to new ways in which we can engage and actively shape our lives though new forms of what to do, and also what not.
[i] Notably, as anthropologist Emily Yates-Doerr points out, the underlying assumption of the phrase ‘stay home’ that everybody has a home, despite homelessness being a pervasive problem. Moreover, not everybody can afford to stay at home.