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Masking emotions & sterilising care: ‘reset’ ethics and the unintended consequences of COVID-19

The coronavirus (COVID-19) pandemic has caused far-reaching consequences for health systems worldwide. In responding to the pandemic, decision-makers have to balance competing interests and difficult trade-offs have to be made. We are told that Government guidance continues to ‘follow the science’, but such guidance must also be values-based. Transparency in the values that underpin those decisions is crucial to support healthcare decision-makers and frontline practitioners during a pandemic, as well as to build public understanding and support for the balances struck.

Pandemics—and public health emergencies more generally—reinforce approaches to ethics that emphasise, or derive from, the interests of communities. Accordingly, in the acute phase of the coronavirus pandemic, attention was focused on saving as many lives as possible. The main focus of discussion was on infection prevention and control measures, and the approach that should underpin resource allocation between patients with COVID-19 in the event that demand for life-saving equipment were to outstrip supply. Guidance on ethical responses to the acute phase of a pandemic is readily available. In the UK, for example, the Pandemic Flu Ethical Framework was available to guide decision-making.

In April 2020, as the first wave of the COVID-19 pandemic was subsiding, the UK Government declared that non COVID-19 clinical services must resume, alongside maintaining the capacity to manage subsequent waves of COVID-19.  This created a unique ‘reset’ context in which it became critical to consider how ethical considerations did, and should, underpin decisions about how to restore and recover (or ‘reset’) health services in a changed operational context shaped by new infection control measures and continuing waves of COVID-19.

Our ‘Reset ethics’ research explores the ethical issues faced by those working in the NHS as it attempts to ‘reset’ normal services alongside coping with the coronavirus pandemic.  We are focusing on paediatric and maternity services: paediatric services because while children have been relatively unscathed by COVID-19 itself, the suspension of many paediatric services to ensure that the wider NHS system could continue to cope has undoubtedly had a significant effect on children and their families. Maternity services obviously could not be suspended, but had to adapt quickly to the pandemic, for example by limiting home visits and in some cases birthing options. Doing so, again, seriously impacted pregnant people, their partners and wider families.

Researching ‘reset’ ethics

The reset phaseincorporates elements of recovery and of re-imagining future health services. It operates alongside and continues after the crisis phase of the pandemic. In the reset phase, tensions between the ethical orientations of ‘usual’ and ‘crisis’ phases have to be mediated. This necessitates a balance between values of patient-centred care, underpinned by clinical ethics, and public health concerns, underpinned by public health ethics. This mediation presents ethical challenges that characterise – and are unique to – the reset phase.

The decision-making context in the reset phase is challenging, with emerging evidence and uncertain outcomes, rapid adjustments to healthcare policies and practices, and uncertainties around personal risk. In the context of emerging variants of SARS-CoV-2 and further waves of COVID-19 infection, as well as the substantial backlog of cancelled and delayed care, it is clear that the need to balance clinical ethics and public health ethics in this way will continue for some time.  Yet, no nationally recognised ethical framework exists to guide decision-making in the reset phase.

The absence of such a framework has left healthcare decision-makers in a difficult position. While a plethora of rapidly changing guidelines was promulgated during the acute phase of the coronavirus pandemic, our rapid review of guidance published by, amongst others, the Government and the Royal Colleges, found that most did not assist with the ethical issues healthcare decision-makers were grappling with. 

The public good versus the patient as first concern – understanding ‘reset’ care

Many healthcare professionals want to offer compassionate care, where care is a relational, multi-directional activity. In the reset phase, our participants reported that care and caring have been divorced from the delivery of treatment. Incorporating norms from public health into clinical care meant that an individual patient’s interests, rather than being core to clinical management, had to be balanced with the interests of the wider community. Infection control priorities, in discouraging close physical proximity and impeding verbal and non-verbal communication, created broader ethical challenges and affected the emotional and social support for patients and staff at critical times.

Policies have changed rapidly over the last year, but some examples help to illustrate the impact of these policies. In paediatrics, initially only parents were allowed on wards and were not allowed to attend together. One particularly distressing outcome of a strict application of this rule was that a baby could be born and die without ever meeting its grandparents and siblings. Another was that both parents were only allowed to be by the cot together when care was withdrawn from their baby.

Keeping staff physically safe in maternity services meant that, for many months, someone attending for an emergency antenatal scan had to attend, and possibly receive distressing news, alone. Those giving birth were generally able to have a birthing-partner present, but only when active labour was confirmed. Rigid interpretation of the criteria for confirming active labour, coupled with the time it takes to put on full personal protective equipment (PPE), meant that birthing-partners sometimes missed the birth. In these, and many other cases, measures that prioritise physical safety came at significant emotional cost.

At the same time, the reset phase has been described by healthcare professionals as a period of innovation and invention. Telemedicine platforms were rapidly developed and deployed and largely welcomed by healthcare professionals. They have helped to lessen the impact of visiting restrictions. Video calling allowed family members to visit virtually and actually ‘see’ their loved one and ‘meet’ a new grandchild for the first time. But virtual care is generally experienced, and described, by healthcare professionals as mechanical and two-dimensional. Something personal is missing when you ‘meet’ someone virtually.

Our research also shows that there are some situations in which there are concerns associated with the use of telemedicine. When home ‘visits’ are online, for example, paediatric staff have described being aware that they cannot be sure who might be behind the computer, and midwives have voiced concerns about domestic abuse. Mindful of the potential safeguarding consequences of the periods of national lockdowns, healthcare professionals tried to create safe spaces for disclosures about harm or abuse in the (socially distanced) face-to-face appointments that still took place.

Treatment, Care and Caring

Our research has highlighted that the caring aspects of treatment – an essential component of patient-centred care -have been an immediate casualty of the reset phase, due primarily to continuing requirements for strict infection prevention and control measures. We understand care as an ethically important dimension to healthcare delivery which embraces the interpersonal relationships between the patient (and their family) and the healthcare professional. Our participants, for example, reported that while treatment delivered wearing PPE can largely meet a patient’s clinical treatment needs, there are significant barriers to offering or demonstrating care.

Care from behind a mask or a ventilated hood is experienced differently by healthcare professionals and their patients. Thus, balancing public health concerns with the ‘human’ aspects of patient-centred care raises tensions about what ‘care’ means for healthcare professionals during the reset phase.

It is here that the distinctive ethical tensions arise for healthcare professionals and decision-makers aspiring to ‘gold standard care’ in a ‘silver standard’ context. Public expectations of what care should look and feel like under the constraints of a pandemic (or a virulent strain of influenza) need to be realistic. Our research suggests that healthcare professionals are burdened by their experiences of offering treatment that they believe is ethically lacking because it fails to attain the relational, caring, and human dimensions of healthcare. The implications of de-humanising care are significant. Crucially, there are implications for failing to care for healthcare professionals. As well as opening the door to moral distress, failure to support and protect frontline healthcare professionals might create a work-life imbalance, such that the personal and relationship costs of working in healthcare outweigh its rewards, and people will choose to leave the profession.

‘Reset’ ethics – discussing the duty of (good enough) care

Where does the balance sit between the duty to provide (good enough) care to an individual patient (as first concern), and the public health duty to inhibit viral transmission? This is an issue brought into focus by the pandemic, but the ethical questions it asks are, of course, just as relevant to the management of the seasonal viral surges that cause serious disruption to the NHS and delays to elective care every winter.

Any guidance in this area needs to flexible, to take into account new evidence and a greater understanding of how Covid is transmitted, for example, where the risk in particular circumstances is known to have changed (e.g. infection prevention). Further, now we have more evidence on the effects of Covid restrictions on parents and children (such as mental health difficulties, social circumstances, or child development), guidance needs to reflect these wider considerations.

Clarity is required about how values inform policy – and what that means in practice

We – the public, patients and members of NHS staff – are all stakeholders in the NHS. As such, we would benefit from a national consultation involving ethical discussion to consider how the tensions between the interests of the ‘wider community’ (in terms of infection control) and the patient (as the ‘first concern’) should be balanced. Policy-makers have, to date, been reluctant to address the fact that ‘gold standard’ care is simply not possible in the context of the pandemic. If it is not accepted that excellence is about doing the best that can be done in these challenging circumstances, healthcare professionals will be set up for failure, and their efforts to date demonstrate that they deserve better than that.

These are the less visible effects of importing public health measures of infection control, PPE and social distancing, into routine health care. As stakeholders in the NHS, we all need an understanding of what caring means in a pandemic, and a clear articulation of what is ‘good enough’ care in these situations is overdue. We suggest it is time for policy makers and healthcare decision-makers to be explicit about the values that (should) underpin our continuing reset of healthcare services.

It is not only resources and waiting lists that require values-based engagement. Transparency about the principles underpinning policy is key to understanding our values as a society.  The vaccination programme, although itself fraught with values-based challenges, offers the promise of change, but infection control measures will be needed for some time to come. A clear analysis of the values that inform any continuing infection prevention measures and support the kind of care that people want and need, remains critically important. It is imperative that public consultation and engagement to address these important ethical questions form a central part of deciding what happens next in our pandemic response. This is needed to promote transparency and maintain public trust in NHS organisations.

The Reset Team – Caroline Redhead, Lucy Frith, Heather Draper, Sara Fovargue, Anna Chiumento and Paul Baines.

The Reset Ethics research project is funded by the UKRI AHRC Rapid COVID-19 call.

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The Arts and Humanities Contribution to Covid-19 Research and Recovery: a snapshot

by Pascale Aebischer, Des Fitzgerald, Sarah Hartley, Rachael Nicholas and Victoria Tischler

In this blog post, we present a snapshot of what we have learned about the distinctive Arts and Humanities contribution to Covid-19 research and recovery and the positive impacts this research has had on society, culture, health and decision-making. The Pandemic and Beyond team has reached the end of the phase of work dedicated to bringing the researchers across the Arts and Humanities Research Council’s Covid-19 rapid response portfolio into dialogue, organising projects into thematic clusters, and mapping their work.   

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Still not Seen or Heard: The voice and experiences of people with learning disabilities during Covid-19

By Professor Matthew Reason, Principal Investigator of the ‘Creative Doodle Book’ project. The Creative Doodle Book project is a collaboration between Matthew Reason of York St John University, learning disability arts company Mind the Gap and Vicky Ackroyd of Totally Inclusive People.

A recurring feature of the UK government’s guidance during Covid-19 concerned ‘shielding,’ giving advice for people identified as clinically vulnerable from coronavirus to stay at home and self-isolate. This included many people with a learning disability or autism, such as adults with Downs syndrome.[1] This guidance was accompanied with recognition that, as well as being more vulnerable, people with learning disabilities may also require more support in understanding restrictions and managing changes to their lifestyle.[2]

Despite such measures – or more accurately, according to the Health Foundation, because the support provided to enable the measures was inadequate – 6 out of 10 people who died from Covid-19 in the UK have been disabled.[3] Figures from Mencap suggest that people with a learning disability have died from Covid ‘at up to six times the rate of the general population.’[4]

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Masking uncertainty on the bus: risk and responsibility after ‘freedom day’

By Emma Roe*, Paul Hurley*, Charlotte Veal** and Sandra Wilks***.

Project: ‘Routes of infection, routes to safety: Creative mapping of human-viral behaviours on the bus to understand infection prevention practices’

On a day heralded by some, including members of the UK government before it took a more cautious tone[1], as ‘freedom day’, the Prime Minister, Chancellor and Health Secretary are self-isolating having either tested positive for or been exposed, to Covid-19. Boris Johnson’s announcement[2] a week ago that Monday 19th July would mark the move to Step 4 of the Roadmap – when coronavirus regulations exercising restrictions on our daily lives, and crucially on our bodies, come to an end – has sparked conflicting and inflammatory debate. An object at the forefront of many of these discussions has been the face mask. Part of the shift in the government’s approach “from one of rules and regulations, to one of guidance and good sense”[3] is the end of the legal requirement in England to wear a face covering on public transport[4], in shops and in other indoor spaces[5]. Understanding this approach and its implications means understanding the social and cultural dimensions of a pandemic, and getting to know the matter (the SARS-CoV-2 virus, emotions, human interactions) and materials (masks, space, and air) through which it is communicated.

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Music and Poetry in the Pandemic

As part of the Pandemic and Beyond project we are working in collaboration with a Lived Experience Panel, a group of people whose lives have been impacted in different ways by the Covid-19 pandemic, to help us shape how we communicate the work of the research projects to ensure that we reach communities who might benefit from the findings. In this audio post Ronald Amanze, a member of our Lived Experience Panel, speaks about what music and poetry has meant to him during the pandemic. Ronald is a musician and music producer who uses poetry and music to record and explore his experience of living with dementia following a stroke.

You can read more about Ronald’s work here, and you can also follow him on Twitter. You can listen to his Dementia Diaries here. Ronald has recently presented and co-produced an episode of Music Memories, which is available on BBC Sounds.

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Digital dissemination and visual communication in the time of COVID-19

Digital and visual communications are a crucial method in disseminating information during the COVID-19 pandemic. From slice-of-life diary pieces to public health information on guidance and symptoms, visual storytellers are using their platforms to share their stories and disseminate information. While digital platforms have the capacity to facilitate misinformation, they have also been utilised to ensure the spread of important, and potentially lifesaving, information. Following on from our Knowledge Exchange Workshops, in this blog post Shannon McDavitt, Research Assistant on ‘Comics in the time of COVID-19’, explores some of the AHRC-funded projects that are researching media communications and health messaging during the pandemic.

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Research on Museums and Collections in the Pandemic

A central aim of the Pandemic and Beyond project is to connect researchers working on similar Covid-19 research problems so that projects can share knowledge, data and findings. Our first Knowledge Exchange Workshops were key to achieving this, bringing team members from each research cluster together to present their work and to discuss the connections between projects. In this blog post, Mark Liebenrood, researcher on the ‘Museums in the Pandemic: risk, closure, and resilience’ project, reflects on the group of projects focused on the impact of Covid-19 on Museums and the work they are doing to ensure resilience in the heritage sector going forwards.

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On-line means global: The essential role of communication and emotions in the digital transformation of the Creative and Cultural Industries

Communication and emotion have been crucial challenges of the Covid-19 pandemic, which has forced the Creative and Cultural sector to turn to the digital world and operate online. Although not over yet, learning from the lessons of the pandemic has enabled creative communities to stand together and collaborate in shaping the post-pandemic future. In this blog post, Dr Kamila Oles, Research Assistant on the AHRC-funded Covid-19 project “Online Teaching and Learning with Digitised Collections in Higher Education Contexts” responds to the Cultural Industries and Creative Practice Knowledge Exchange Workshop organised by The Pandemic and Beyond project by reflecting on the role that communication and emotion have played in the digital transformation of the creative and cultural industries.

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The Pandemic and Beyond Plan: Connect, Coordinate, Amplify

We are now approaching three months of working on the Pandemic and Beyond project; our activities started at breakneck speed, and our work of coordinating, connecting and amplifying Arts and Humanities Covid-19 research is well underway. This blog post provides a brief overview of what we have been doing and looks forward to our plans for the next 21 months.

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A Human Rights Perspective on COVID-19 Triage

Covid-19 has forced governments and healthcare workers around the world to make difficult and painful decisions about whose care to prioritise and how. Arts and Humanities researchers provide vital insight and scrutiny into the ethical dimensions of these decisions. In this blog post Dr Vivek Bhatt, Postdoctoral Research Associate for the AHRC-funded project ‘Ensuring Respect for Human Rights in Locked-Down Care Homes’, outlines some of the findings of the Essex Autonomy Project’s work investigating triaging decisions from the perspective of human rights.

By Dr Vivek Bhatt, 10th May 2021

The COVID-19 pandemic has seen many hospitals around the world run out of ICU beds and critical supplies such as oxygen, with frontline workers forced to decide who should be prioritised for potentially life-saving treatment. This decision-making process is referred to as ‘triage.’ The practice of triage began during the Napoleonic wars and developed further during the two world wars, with the implementation of systems for sorting and prioritising wounded soldiers for treatment. As recent events have shown, triage decisions are equally difficult, and just as often painstaking, in the context of COVID-19. In Ontario, Canada, a spike in ICU admissions for COVID-19 treatment may soon force doctors to activate triage policies that provide a matrix for deciding who should be allocated the few remaining ICU beds in the province. And hospitals in India, where oxygen is in short supply, have set up ‘war rooms’ in which clinicians try to decide who should be prioritised for ventilation.