The handling of the deceased during the COVID-19 pandemic, a case study in France and Switzerland
Gaëlle Clavandier, Marc-Antoine Berthod, Philippe Charrier, Martin Julier-Costes, and Veronica Pagnamenta
The COVID-19 pandemic has brought about an unprecedented global crisis. To limit the spread of the virus and the associated excess mortality, states and governing bodies have produced a series of regulations and recommendations from a health perspective. The funerary aspects of these directives have reconfigured not only the ways in which the process of dying can be accompanied, but also the management of dead bodies, impacting on the dying, their relatives and professionals in the sector. Since March 2020, the entire process of separation and farewell has been affected, giving rise to public debates about funeral restrictions and the implications for mourning. We carried out a study in France and Switzerland to measure the effects of this crisis, and in particular to explore whether it has involved a shift from a funerary approach to a strictly mortuary one. Have the practices that would normally be observed in non-pandemic times been irrevocably altered? Does this extend to all deaths? Has there been a switch to an exclusively technical handling? Are burial practices still respected? The results of the present study pertain to the ‘first wave’ of spring 2020 and focus on the practices of professionals working in the funeral sector.
Liliana Sanjurjo, Desirée Azevedo, and Larissa Nadai
This article analyses the management of bodies in Brazil within the context of the COVID-19 pandemic. Its objective is to examine how the confluence of underreporting, inequality and alterations in the forms of classifying and managing bodies has produced a political practice that aims at the mass infection of the living and the quick disposal of the dead. We first present the factors involved in the process of underreporting of the disease and its effects on state registration and regulation of bodies. Our analysis then turns to the cemetery to problematise the dynamics through which inequality and racism are re-actualised and become central aspects of the management of the pandemic in Brazil. We will focus not only on the policies of managing bodies adopted during the pandemic but also on those associated with other historical periods, examining continuities and ruptures, as well as their relationship to long-term processes.
Presumed black immunity to yellow fever and the racial politics of burial labour in 1855 Portsmouth and Norfolk, Virginia
Michael D. Thompson
Epidemic disease regularly tore through nineteenth-century American cities, triggering public health crises and economic upheaval. These epidemic panics also provoked new racialised labour regimes, affecting the lives of innumerable working people. During yellow fever outbreaks, white authorities and employers preferred workers of colour over ‘unacclimated’ white immigrants, reflecting a common but mistaken belief in black invulnerability. This article chronicles enslaved burial labourers in antebellum Virginia, who leveraged this notion to seize various privileges – and nearly freedom. These episodes demonstrate that black labour, though not always black suffering or lives, mattered immensely to white officials managing these urban crises. Black workers were not mere tools for protecting white wealth and health, however, as they often risked torment and death to capitalise on employers’ desperation for their essential labour. This history exposes racial and socioeconomic divergence between those able to shelter or flee from infection, and those compelled to remain exposed and exploitable.
The chapter is prefaced by a brief summary of the policy background. Urgent and emergency care is, by its very nature, different from planned care. The diagnosis is not always easy to nail down, the patient might be in considerable pain, distress or shock, and the trajectory of care can be uncertain. Cancer care raises issues of its own. Emergency, planned and cancer care all have waiting time targets in the NHS in England. These were successful in significantly reducing long waits. However, the system was already coming under increasing pressure before the COVID-19 pandemic, with performance deteriorating and an inexorable rise in waiting times. Coordination of care with GPs and other primary care services remains an issue. This chapter contains four stories in which hospital was a significant site for care. The stories cover planned care, emergency care and a story about cancer. The first story is about what happened to Jill following an accident involving her knee, including her follow-up care. The second is about a planned operation to remove Andrea’s gallbladder. The third concerns Lucy’s experience when she was hospitalised with sepsis. The final story concerns Shona’s journey to recovery from breast cancer, and what helped along the way. We invite readers to assess how these narratives compare with the four characteristics of patient-centred care outlined in Chapter 1. As with the other chapters, we pose questions arising from these stories, to simulate thinking and reflection. We have divided these into questions of immediate or operational concern, and those which are more strategic or policy-related.
The chapter is prefaced by a brief summary of the policy background. A number of child health outcomes in the UK lag behind those in other comparable countries. Children from deprived areas or with a black or other minority ethnic family background are twice as likely to be obese and this inequality is widening. Children with complex needs and disabilities are often under-served. Four contrasting stories are presented here. Dan is a normally healthy teenager who was hospitalised with an acute bacterial infection from which he has now recovered. His father Jonathan tells the story from his perspective. Dan’s illness took place during the COVID-19 pandemic. Jim was a severely disabled young man from birth until his death aged 36. His parents Justin and Lucinda cover his entire life – and death – in their account. In a story fragment, Eve remembers as a child how she came to be diagnosed with type 1 diabetes. Finally, Eileen tells of her experiences as a carer for a teenage son with a diagnosis of scoliosis, including the length of time taken to get an appropriate tertiary referral. She found a support group was helpful. We invite readers to assess how these narratives compare with the four characteristics of patient-centred care outlined in Chapter 1. As with the other chapters, we pose questions arising from these stories, to simulate thinking and reflection. We have divided these into questions of immediate or operational concern, and those which are more strategic or policy-related.
In this concluding chapter, we examine how far William Osler’s injunction – to just listen to the patient – is heeded in today’s NHS. We assess the value of gathering stories in this way as a contribution to truly listening to patients and their families. We reflect on the extent to which the spirit of the NHS Constitution is being upheld, especially in relation to whom the NHS belongs. From the stories we identify five dimensions to care which is organised around patients: kindness, attentiveness, empowerment, organisational competence and professional competence. We compare these themes with the case and the evidence for patient-centred care outlined in Chapter 1. We consider what the stories tell us about the things that patients value, the extent to which these things are put into practice, and what the obstacles are. We reflect on the five themes as the basis for a call to action for improvement. We discuss vital questions of context: in particular, straitened funding and workforce shortages in the NHS, and the experiences of COVID-19. Finally we touch on future trends, for example the rise of digital healthcare, and consider the implications for better organising care around patients.
We explain what we mean by organising care around patients and our alternative term patient-centred care. We set out the key characteristics of patient-centred care. These are summarised as: understanding and valuing what matters to patients; seeing the whole person; respecting people’s rights and autonomy; and being customer focussed. We go on to provide a brief history of developments in patient-centred care, in policy, attitudes and practice, comparing the record and performance of the NHS in England with other countries. In light of this history, we review whether and to what extent the NHS can be viewed as patient-centred and the obstacles to further progress. Our approach to storytelling as a means of eliciting important truths about patient-centred care is outlined. We provide information about how we sourced the storytellers, the ethical and methodological issues we encountered, and what we learned from the process of listening to the stories. Finally, we summarise the structure of the rest of the book and suggest how the reader might engage with and learn from the stories it contains.
The chapter is prefaced by a brief summary of the policy background. People with long-term conditions account for a very high proportion of all health service usage. Yet those services often struggle to provide what is needed. Accurate diagnosis, medicines and treatments matter, but so does an approach that is sensitive to your preferences and your experience of living with your condition; continuity of care and the joining up of different services; being empowered and supported to live a fulfilling life. There are five stories in this chapter. Katie has had type 1 diabetes for around twenty-five years with gradually increasing painful and distressing complications. Tim is in his 30s and has epilepsy which developed during his teenage years. He talks of the stigma attached to the condition. Joanna has various health problems, including Ehlers-Danlos syndrome, which is a rare condition, and which her son also suffers from. Jasmin has lupus which took a long time to be correctly diagnosed. Venetia lives with chronic fatigue syndrome which has significantly affected her quality of life as a young adult. We invite readers to assess how these narratives compare with the four characteristics of patient-centred care that we outlined in Chapter 1. As with the other chapters, we pose questions arising from these stories, to simulate thinking and reflection. We have divided these into questions of immediate or operational concern, and those which are more strategic or policy-related.
The chapter is prefaced by a brief summary of the policy background. Mental health problems are widespread, at times disabling, yet often hidden. In the UK, nearly half of adults think that they have had a diagnosable mental health condition at some point in their life. Since the 1960s, punitive and stigmatising attitudes have largely given way in most countries to a more community-based, human rights-informed approach. Nevertheless, mental health services in the UK have not had the priority given to physical health. Recent national policy is aimed at boosting provision. This chapter contains five stories. Audrey is a healthcare professional. Hers is a story fragment, describing struggles to get access to the right services for her family member. Stanley arrived in the UK from Zimbabwe and had his first breakdown and diagnosis of bipolar disorder in 1997. Alan has also been living with bipolar disorder for over twenty years and now works as a patient ambassador. Nathan is a teenager with various mental health issues. Finally, Lucy is a retired hospital psychiatrist with lived experience of a severe and enduring mental illness. We invite readers to assess how these narratives compare with the four characteristics of patient-centred care outlined in Chapter 1. As with the other chapters, we pose questions arising from these stories, to simulate thinking and reflection. We have divided these into questions of immediate or operational concern, and those which are more strategic or policy-related.