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 phase incorporates 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.