Identifying ethically defensible options

Given that there are no universally recognised standards for determining what is morally right, the question of what is ‘better’ or ‘best’ in a given context may give rise to legitimate disagreement.5 In the face of such disagreement, an appeal may be made to ethical frameworks and well-established ethical principles, such as fairness, autonomy, equity and solidarity, to identify ethically acceptable courses of action, scrutinise the values at risk, and guide analysis of harms and benefits.6 In conjunction with principles drawn from philosophy and bioethics, the public defensibility of the decision-making process also rests on procedural values such as proportionality, transparency, consistency and accountability.7 While frameworks and established ethical principles play a crucial role in justifying decisions, the procedural values that underpin the process by which decisions are made are equally important (table 1).

Maximising benefit and minimising harm

Over the course of the past 20 years, visitors have come to be seen as an integral part of healthcare delivery.8 As Collier et al 4 observe, visitors in healthcare organisations are not ‘passive bystanders’ but often assume the roles of companion, translator, navigator and planner. Positive benefits of integrating visitors into the provision of healthcare include assistance with feeding and self-care and, most importantly, emotional support.9 Negative consequences of visitation restrictions during the pandemic included increased patient loneliness, agitation, depression, decreased nutrition and daily activity, increased reports of pain and other symptoms, increased stress and anxiety reported by family members, and staff moral distress.10–14 Context, however, is important. The harm caused by restricting visitors had to be balanced against the benefit of protecting patients, residents and healthcare workers from the disease. At the beginning of the pandemic, COVID-19 was seen to pose a threat to the functioning of healthcare systems; knowledge of the mechanisms by which the virus spread, including the role of asymptomatic carriers, was sparse and there were concerns that supply of personal protective equipment (PPE), even hospital beds and ventilators, would not be able to meet demand8 10 11 (images of nurses in New York City wearing bin bags in place of PPE and the issuing of new guidance to reuse previously single-use N95/FFP3 masks highlighted the scarcity of PPE at the time). In the face of enormous clinical uncertainty, there was a strong utilitarian rationale for limiting visitors to hospitals and nursing homes as cases of infection multiplied across the globe. Not only were healthcare workers required to assume additional risk working in extenuating circumstances,8 many of them taking on the emotional labour of staying with patients who were dying and facilitating virtual goodbyes with loved ones,15 but they were also instrumentally valuable as a resource to provide care for future patients who would contract COVID-19. The imperative to protect patients, healthcare workers and members of the community against the virus and the need to maintain functioning healthcare systems provided the ethical justification for prioritising the safety of the broader community above the needs of individuals by restricting visitors to hospitals and nursing homes.9

It is clear, as Collier et al 4 point out, that the restrictions on visitors resulted in substantial harm to patients, their loved ones and to staff.11–13 Any intervention that has the potential for harm requires ethical scrutiny, deliberation and justification, with efforts made in advance to mitigate foreseeable harms.8 9 Decisions about balancing harms and benefits which are difficult to quantify should not be made on an ad hoc basis. Collier et al 4 draw attention to the need for policies governing visiting rights which are attuned to the tension between the quality and safety of care provision and the need to protect patients and residents from harm in pandemic situations. These findings raise important questions about the process by which visitation policies and other pandemic-related policies were developed, and the consistency with which they were implemented. In their analysis, Jones-Bonofiglio et al call for ‘explicit and transparent processes’ to provide those affected by decisions an opportunity to understand the rationale for those decisions, even if they are not in agreement with them.8

Importance of procedural values

In response to the outbreak of the pandemic, national frameworks were published in many jurisdictions to guide ethically defensible public health decision-making at local levels. Such frameworks rest on and promote values which are publicly accepted as valid, such as reasonableness, fairness, inclusivity, equity, proportionality, accountability and flexibility.7 9 12 16 The challenge for local decision-makers was to devise and implement visiting policies informed by these more general ethical frameworks and to understand the potential for conflict among the ethical principles on which they were based. Central to the implementation at local level of higher-level guidance is transparency about how different harms and benefits are understood and weighted in specific contexts. Absolute consensus about what constitutes a harm in a given context does not exist. Minimising harm, for example, may be interpreted either in terms of protecting vulnerable patients or residents against infection, or in terms of ensuring that they have the support of close family and friends in times of serious illness. It is therefore vital that a principled rationale for how decisions are made is publicly available.

It is generally accepted that in times of crisis, policies designed to promote public health and safety prioritise collective well-being—such as protection from the spread of disease—above individual rights such as autonomy. Nonetheless, policies developed within hospitals or at the level of health districts or Trusts must balance consistency and flexibility in their implementation; they must be fair but capable of accommodating the needs of individual residents in specific circumstances, and their implementation must not create or exacerbate inequity.12 One example is the ‘practical’ framework put forward by Jones-Bonofiglio et al.8 The authors suggest that during times of surge capacity, loved ones could be asked to supply their own PPE but this has the potential to put families with less resources, who may be unable to source their own PPE, at a disadvantage, thereby violating the principle of equity. The same framework includes the provision of a healthcare worker ‘support companion’, which in times of conventional care would ensure support for visitors. However, in times of surge capacity where nurse-to-patient ratios are so stretched that the quality and safety of care are diminished, the justifiability of this suggestion may be questioned. In proposing a more flexible approach to visitation restrictions, Jones-Bonofiglio and colleagues8 raise further questions which highlight the challenges of developing and applying ethical frameworks fairly, equitably and consistently. Decision-making in relation to compassionate exceptions generates challenges stemming from conflicts between avoiding harm and maximising benefit, promoting autonomy and ensuring fairness—and should be based on an explicit, transparent and defensible process, rather than being the responsibility of individual clinicians working under crisis or contingency conditions15 17 (Morley et al 15 found that intensive care unit nurses felt responsible for the implementation and enforcement of visitation restrictions and for decision-making regarding compassionate exceptions, such as end-of-life visitation; see also Brewer et al 17).

Finally, review is an integral component of sustainable policy development and visitation policies which are perceived by patients, family members or healthcare workers as disproportionate or unfair require scrutiny. While the constraints on working conditions imposed by the pandemic meant that opportunities for policy review and consultation were sparse, this does not remove the obligation to revisit the most restrictive elements of policies which limited visitation with a view to achieving a more proportionate balance between harm and benefit in line with emerging evidence.

Collaborative decision-making: the role of clinical ethics support services

Collier et al 4 draw attention to the importance of proportionality and transparency in the implementation of visiting policies that have the potential to cause harm to those who will be affected by them. They argue that patients, families, clinicians, ethicists and community leaders should be involved in the development of visitation policies at the local level which are transparent, consistent, publicly available and evidence based and which ‘balance compassionate care and human rights with public health principles’.4 At the height of the pandemic, Fritz et al called for formalised and properly resourced clinical ethics support structures to assist healthcare professionals in interpreting and applying national guidance.18 Clinical ethics support services are increasingly recognised as a mechanism for enhancing the clarity, consistency and defensibility of healthcare decision-making and may have had an additional role to play in lessening ‘the substantial burden of making urgent and complex [decisions]’ during the pandemic.18 While clinicians are adept at balancing harms and benefits in a medical context, ethicists are trained to determine the defensibility of interventions by balancing harms and benefits at a more general level in accordance with decision-making frameworks which take account of the empirical data, principles and values at play.

Explicit scrutiny of values, fair process and transparent criteria for decision-making are as important in public health ethics as they are in clinical ethics, given the potential for conflict in the pandemic context between individual autonomy and more community-oriented principles such as solidarity, reciprocity or harm minimisation. One of the lessons learnt from the pandemic may be that it is time, not only to invest in clinical ethics support services in the acute care setting,19 but also to recognise a broader role for clinical ethics expertise in public health decision-making.