A shared COVID-19 testimony

Abstract

“Six feet away, a father, a man I am yet to lay eyes on, is dying of a disease only named a month ago.” This unfamiliar clinical territory starts Rachel Clarke's Breathtaking: Inside the NHS in a Time of Pandemic as she describes reviewing Winston, a patient admitted with COVID-19. She relates the effort to communicate care to Winston and his sons while wearing personal protective equipment (PPE) and the anxiety of trying to do her job in a situation unimaginable only a few months before. Clarke worked as a broadcast journalist and continued to write as she trained to become a palliative care consultant. Before the COVID-19 pandemic, she was known for holding the UK Government to account for its handling of the National Health Service (NHS) and for championing the value of compassion and kindness in health care. Her previous book, Dear Life: A Doctor's Story of Love, Loss and Consolation was a personal memoir and exploration of dying. In it, she argued that medics and society in general needed to overcome taboos about death and accept it as an inevitable part of living. Breathtaking is Clarke's account of working on the NHS front lines from January to April, 2020, ending with her reflections in August. The book was partly written in an attempt to make sense of what she was experiencing on the wards. It is beautifully written and Clarke gives an unflinching but tender and compassionate chronicle of the first wave, giving readers an insight into the NHS during the pandemic. Importantly, Breathtaking provides health-care workers like myself with a narrative of events we can recognise. The fear of contagion and how COVID-19 takes away the ability to fulfil the basic human need to connect are themes explored throughout the book. Clarke is particularly attentive to the separation of patients from their loved ones. She observes people sitting in their cars in the hospital car park in a desperate effort to be closer to their loved ones in hospital. She reminds us that “care is inescapably visceral” and considers how PPE can act as a barrier between the patient and the carer. This separation, she writes, has contributed to moral injury among health professionals. “Covid in short, necessarily compromises every instinct to deliver humane and compassionate care”, she writes. It is a feeling of failing to provide adequate and humane care due to systemic factors beyond the control of health-care workers—a feeling I identify with wholeheartedly from my own experiences of caring for patients with COVID-19. Clarke interviews staff in the intensive care unit (ICU). They describe their anxieties about how without visitors, cards, or gifts there is a risk of patients becoming just bodies without character who are faceless to them when put in a prone position. ICU staff strive to bring the humanity back to their patients, being present with them and making sure no one dies alone. I hope Clarke's detailed account of the extraordinary lengths colleagues have gone to during this pandemic to respond with compassion will give comfort to readers who have lost loved ones. As UK cases started to rise, Clarke tells of her apprehension of what was to come and the constant feeling of needing to work to help cope with worry. She reflects on how she had to hide her anxiety to protect her husband and explain the nature of duty—“this irresistible tug to use my training to help in a crisis“—to her young daughter in terms she could understand. She interviews colleagues who said they avoided talking about work when they got home because of how difficult it is to carry the emotional load of seeing so many patients die. In a particularly powerful passage, where she recounts teaching medical students about dying patients, Clarke gives them “permission to feel”, telling them that although they “may have gone through medical school being taught that displaying emotion is weakness. It isn't. It's human.” That our medical education and training may take the humanity out of medicine is something that this pandemic has shown urgently needs to be considered. As with her previous books Dear Life and Your Life In My Hands—a Junior Doctor's Story, Clarke uses case studies to great effect. Like Sirin Kale's “Lost to the virus” series in The Guardian, these are intimate portraits, giving us names and identities, humanising daily statistics. We are offered accounts that show the resilience and courage of patients and their relatives. Clarke also uses these case studies to express admiration for her colleagues who she feels are the core of the NHS, taking pride in “their grit and devotion”. In one chapter, she describes the process of intubating a patient with very low oxygen levels. Pre-pandemic, this was highly skilled work done on a daily basis in the NHS. With COVID-19, the added danger of contagion raises the stakes even higher, but colleagues are able to cope with the pressure. Her anger and frustration at the UK Government's management of the pandemic are evident throughout, including their inconsistent public health messaging and delays in decision making. Particular fury is reserved for the initially mooted herd immunity approach, the decision to stop community testing, and the downgrading of PPE, against WHO guidance. “I am overwhelmed by the thought of all of the dying to come and by how resigned the government appears to be to this”, she writes. Clarke offers a personal example of trying and failing to procure PPE for her hospice from the emergency NHS COVID-19 supply chain, and how she has to rely on a charity instead. She recounts the absurdity of scouts making visors and the offer of “second-hand monkey ventilators” from the local university as a sad indictment of inadequate investment in essential equipment. Her feeling of being let down by those expected to protect us is palpable. The pandemic has been described as apocalyptic. Clarke reflects that the Greek “apokalypsis” relates not to catastrophe but revelation—hidden truths are revealed. What has the pandemic revealed? For Clarke, it has exposed deep-seated social inequalities, our hubris in the belief we can control nature, and shown us what is essential and what is superfluous. In some places there has also been “a quiet revolution” in bringing humanity back to health care—a hidden truth that should be better valued. In one powerful part of the book, Clarke interviews Susan, a woman with terminal cancer who was not taken to hospital when unwell with COVID-19. Susan tells Clarke that “I believed I was effectively being told not to waste NHS resources. I felt as though someone had opened a bin and just chucked me in it.” Clarke does not spare us here, arguing that we are all “to some extent complicit in prioritising the expansion of hospital capacity above protecting the elderly, the vulnerable, the disabled and those with non-Covid diseases.” She laments “We did not protect the NHS so much as turned it off. We cancelled all non-urgent surgery and postponed many cancer treatments”. However, she reasons that there were few options due to the chronic underfunding of health and social care systems and the failure of successive governments to take action to fix them and integrate social and health care. Clarke bravely bears witness with such detail so that we are able to join her in the collective project of understanding some of the lessons that can be learnt from this crisis. In April, 2020, Arundhati Roy wrote that historically pandemics are portals to another world, and asked if we were ready to imagine and fight for something better. Philosopher Achille Mbembe has argued that societal change is necessary and that after the pandemic we must prioritise everyone's “universal right to breathe”. While we are still in the midst of the pandemic, with the inherent uncertainty this brings, it is unclear what lessons will be learnt and what will change. What will be remembered and what will be forgotten from this pandemic? Whose accounts will be prioritised? Will we think of it as a warning and make societal change, such as addressing social and economic inequalities and tackling structural racism, or will we go back to the way things were before? In Breathtaking, Clarke tries to make sense of this, at times shifting between the hope that even in the worst of times, “people, fundamentally are good” and despair at the ways the pandemic has been mismanaged. Having been redeployed to work on COVID-19 wards in this pandemic, I was apprehensive that reading this account of the first wave during a subsequent larger and more devastating wave would be overwhelming, but it has been cathartic. By documenting her own experiences, Clarke has helped me to process mine. Breathtaking makes a compelling contribution towards a shared testimony that represents the lived experiences of many health-care workers during the COVID-19 pandemic. In this way, she has done us a great service and I thank her for it. In the conclusion, Clarke expresses her unease at health-care workers being lauded as heroes for risking their lives at work on a daily basis when they should be better protected and the book is dedicated to all the health and social care workers who have died from COVID-19. Like many others, in this pandemic I have attended the online funerals of colleagues, something I never imagined I would do when entering medicine. Plans for better protection of health-care workers should include ensuring safe working conditions and the consideration of how best to support a generation that has been traumatised by the pandemic.