Continued Confinement of Those Most Vulnerable to COVID-19
Suerie Moon, Eva Maria Belser, Claudine Burton-Jeangros, Pascal Mahon, Cornelia Hummel, Settimio Monteverde, Tanja Krones, Stéphanie Dagron, Cécile Bensimon, Bianca Schaffert, Alexander Trechsel, Luca Chiapperino, Laure Kloetzer, Tania Zittoun, Ralf Jox, Marion Fischer, Anne Dalle Ave, Peter G. Kirchschlaeger, and Samia Hurst
[This is an advance copy of an article that will appear in print in September 2020 as part of the KIEJ’s special double issue on Ethics, Pandemics, and COVID-19.]
ABSTRACT. Countries deciding on deconfinement measures after their initial lockdowns in response to the COVID-19 pandemic often include, as a matter of course, the continued confinement of those most vulnerable to the disease in these plans. Such continued confinement, however, is neither innocuous nor obviously justified. In this paper, we systematically examine issues such as: the requirements to sustain and protect vulnerable persons, the situation in institutions, legal implications of confinement, and the role of self-determination. Based on this exploration, we recommend that continued confinement cannot be the only measure in place to protect vulnerable persons. Protections are needed to enable the participation in the public sphere and the exercise of rights for persons particularly vulnerable to fatal courses of COVID-19. The situation in long-term care homes warrants particular caution and in some cases immediate mitigation of lockdown measures that have isolated residents from their caregivers, advocates, and proxies. Vulnerable persons should retain the choice to place themselves at risk, as long as they do not impose risks on others. Vulnerable persons who choose to remain in confinement should be protected against loss of their jobs or income, and against the risk of discrimination in the labor market. Associations and lobbies representing the views of groups of those particularly vulnerable to COVID-19 should be consulted and involved in outlining deconfinement measures. Moreover, most vulnerable persons are autonomous and competent and should be allowed to voice their own opinion.
INTRODUCTION
Continued confinement of those most vulnerable to COVID-19—e.g., the elderly, those with chronic diseases and other risk factors—is presented as an uncontroversial measure when planning exit strategies from lockdown measures. Policies for deconfinement assume that these persons will remain confined even when others will not (see, for example, European Commission 2020). This, however, could last quite a long time, and for some this could mean that they will remain in confinement for the rest of their lives.
In a policy brief on the ethical, legal, and social issues of transition strategies, the Swiss National COVID-19 Science Task Force stated that:
Specific interventions should target the risks associated with isolation and immobilization in the >65 population: put in place “safe spaces” for the elderly (clubs, gym classes, walks); support local shopping options, without queueing, or maintain provision by volunteers while allowing some contacts (move away from the zero contact of dropping bags behind a door and no interactions between volunteers and elderly people); allow older persons who are willing to take the risk of becoming infected to not quarantine themselves from persons in low-risk groups (for example grandchildren). (Swiss National COVID-19 Science Task Force 2020)
When discussing the option of continued confinement of those at particular risk of morbidity and mortality from COVID-19, the elderly (i.e., those over sixty-five) and those with chronic conditions and/or multimorbidity are the usual target groups that are now largely understood to be (medically) vulnerable. Defining entire categories to determine who is vulnerable, and determining public policy based on these categories, is, however, problematic. Considering all people aged over sixty-five, for example, as vulnerable is simplistic. Social scientists have regretted that it has long been assumed that those over sixty-five represent a homogeneous category. People over sixty-five, however, represent a very heterogeneous category, with varying socioeconomic statuses, family circumstances, and health conditions. The distinction between three global health statuses—independent, frail, dependent (Spini et al. 2007; Lalive d’Epinay and Spini 2008)—has been coined to underline the heterogeneity of the so called 65+ category and the multiplicity of health trajectories therein (Spini et al. 2016). The same consideration applies to persons with pre-existing conditions placing them at differential risk of dying should they contract COVID-19. Protections need to take this heterogeneity into account.
From a legal standpoint, a strict age criterion for continued confinement is problematic as well. According to many national constitutions (and international law), age discrimination is prohibited. Strict age limits can only be ethically and legally permissible if they are based on highly convincing reasons (e.g., adulthood as a condition for marriage). The fact that health risks generally tend to increase at the age of sixty-five is insufficient to apply strict age limits. Healthy sixty-six-year-old people cannot be bound by the same legal rules as people with multiple additional risk factors without violating the principle of equality. People have a right to be treated equally if they are equal regarding the matters at stake, and they have a right to differentiated treatment if there are relevant differences. Furthermore, the diseases bringing people into the group of “vulnerable people” must also be clarified. Current lists tend to be vague and explicitly not exhaustive. Here again, further differentiation is crucial.
While the protection of those most vulnerable to morbidity and mortality from COVID-19 is a duty, we content that it is far from obvious that this duty requires continued confinement. Moreover, confinement alone cannot provide such protection. In this paper, we explore what such protection requires, outline legal implications, and sketch some practical implications in our conclusion.
REASONS FOR THE CONTINUED CONFINEMENT OF THE VULNERABLE
Four reasons can be put forward to maintain confinement of those particularly vulnerable to morbidity and mortality from COVID-19: (1) protecting them as equally worthy of life in a situation where their life is more at risk; (2) preventing health system shortages; (3) protecting others in case the particularly vulnerable are also particularly likely to pass on the disease to others; and (4) protecting others from the risk of complicity in making those most vulnerable more likely to become ill, and thus risk severe disease and death.
Regarding the first reason, protection of vulnerable persons themselves cannot justify compelled confinement if they are the ones at risk. They should have the right to protection, but should be able to choose freely whether or not to place themselves at risk. State authorities are prohibited from discrimination and are obliged to take active measures to reduce inequalities. Persons with a high risk of morbidity or mortality from COVID-19 have a right to be provided access to special protection. Whether state authorities may limit their rights and freedoms in order to protect them is an entirely different question. Protecting people against their free and informed choices is not justified from a human rights perspective. The rights of vulnerable people may thus only be limited to protect the health system or other human rights holders, such as caregivers.
Regarding the second reason, vulnerable people are more likely to need special or even intensive care. Should there be a shortage of such care, this would indeed provide a prima facie reason to confine those who are most likely to be in need of it more strictly. This justification exists when intensive care structures are at risk of becoming overwhelmed, but ceases to exist when case numbers are sufficiently controlled to avoid this.
Regarding the third reason, it must first be noted that no evidence currently points to a heightened risk of contagion on the part of those most vulnerable to morbidity and mortality from COVID-19 as compared to other population groups. While their risk of becoming seriously ill or dying is increased in case of illness, their risk of becoming infected with the virus does not seem higher than that of others (NCPERET 2020). An exception exists in long-term care institutions, where the number of people living in close quarters could pose a risk and this could justify continued confinement, provided it were expected to protect other residents. Outside long-term care facilities, continued confinement may still protect healthcare professionals, since increasing the number of COVID-19 cases in hospitals would increase their risk of infection, even if structures are not at risk of being overwhelmed. This may be particularly true in the case of those most vulnerable to COVID-19, since other groups would be less likely to require hospitalization when ill and thus less likely to become a risk for healthcare providers. However, this argument is not specific to those most vulnerable to COVID-19: it would also apply, albeit with lesser weight, to anyone at risk of becoming ill and requiring hospitalization. Where personal protective equipment is available, however, this risk to health professionals can be mitigated (Jefferson et al. 2020).
Finally, if those most vulnerable to morbidity and mortality from COVID-19 are not confined, it could make the rest of us very likely to be complicit in increasing their risk of becoming ill. Avoiding such complicity in the absence of confinement could significantly change what is allowed for the rest of us. It could mean that barrier measures, such as wearing masks, performing hand hygiene, and maintaining six-feet’s distance, could remain required in public spaces for much longer in order to limit the risk of contagion to particularly vulnerable individuals who may be there. It could also mean that we should all limit close contacts to as few persons as possible to decrease the overall risk of viral circulation and thus, again, protect particularly vulnerable individuals in the public sphere. In this case, we may have to forgo the services of hairdressers, for example, avoid parties where people mingle and distances are more difficult to keep, or going to restaurants or nightclubs, where masks would interfere with some of our central reasons to be there. Continued confinement of those most vulnerable to COVID-19 would thus protect the rights of others to access a greater part of the components of life while COVID-19 is still in circulation.
None of these justifications, however, is sufficient on its own to justify continued confinement. Rather, when they are pertinent, they must be taken into account and balanced against the rights of the vulnerable to everything that confinement takes away from them.
PROTECTING THE VULNERABLE
Confinements and lockdowns are commonly accepted anti-pandemic measures on the basis of their effectiveness in protecting life and health (Thunstrom et al. 2020; Zhang et al. 2020; Douglas et al. 2020), and in particular for those who are more vulnerable to serious illness and death. Consistent concern for the protection of life and health for those who are vulnerable cannot be limited to confinement, however. Special accommodations also need to be made for vulnerable individuals during court and administrative procedures, including asylum procedures—where their presence is required, other protections must be provided. Similarly, protective refuge should be available for their family members who become ill with COVID-19 and do not require hospitalization, in order to avoid the risk of contagion within the home for these persons. Vulnerable persons should also be considered for early release from prison, as the risks of contagion are greater there. When protective measures, such as masks, are recommended, they should be free of charge. As the elderly may place themselves at risk if they take care of their grandchildren, free access to childcare for parents should also be part of an overall protection strategy, and this should be the case for all on equity grounds. Those who are vulnerable are also listed by the Swiss pandemic plan among the populations that should receive priority for a vaccine once it becomes available (SFOPH 2018). Protection should not be a privilege dependent on income for vulnerable persons, but a right.
Risks are also associated with confinement itself. Early signs of the adverse effects of confinement are being observed by professionals (Miller 2020). References have been made to the ‘failure to thrive,’ a condition that includes four aspects: weight loss, decreased appetite, poor nutrition, and inactivity (Robertson and Montagnini 2004). It can be expected that long-term confinement will lead to an increased number of deaths as a result of isolation, lack of exercise, and limited access to basic resources among the elderly. The balance of benefits and risks of mitigation measures is thus uncertain. Protection against exposure to the virus comes at the cost of other components of health when the balance between biological, psychological, and social factors is taken into consideration (Engel 1977).
In exploring components of a good life, the influential Capabilities Approach lists ten elements: life; bodily health; bodily integrity; senses, imagination and thought; emotions; practical reason; affiliation, including social interaction and the social bases of self-respect; contact to other species and the natural world; play; and control over one’s political and material environment (Nussbaum 2003). Particular attention should thus be paid to maintaining equal protection of life in all circumstances, but also equal political rights, equal possibilities for social interaction, for play, and, perhaps most importantly, equal access to the social bases of self-respect—the image mirrored back to us by society, which constitutes an important part of our assessment of our own worth. Social distancing should mean neither social exclusion, nor social devaluing. This is important, since official recommendations to continue confinement only for those vulnerable to morbidity and mortality from COVID-19 could result in stigmatization and grievous harms to the social bases of self-respect. Robeyns (2016) proposes the addition of further capabilities—sensory comfort, communication, being understood, being loved, and receiving attention—several of which are at risk during the present confinement, especially in populations unaccustomed to communicating through digital technologies. In the absence of sustained communication, those who remain confined must rely entirely on others to tell their story and cannot sustain their narrative identity (Hurst 2020; Lindemann 2014).
Since vulnerability in the face of COVID-19 is both a diverse and shifting condition, no single trade-off between these components can be described for them all. Decisions about confinement of the vulnerable should include their needs and own definition of the situation—either directly or through representation such as, for example, Pro Senectute for the elderly in Switzerland. Their perceptions of risks are likely to be different from those of other segments of the population, and from those of health professionals. Concurrent perceptions of risks thus need to be taken into account—and note, this holds for all vulnerable groups—especially in a context characterized by high uncertainty and in which trade-offs might be difficult to calculate.
Protection should be a right, not a duty. Individuals vulnerable to severe illness from COVID-19 should be afforded the same liberties and personal choices as others, and these include placing themselves at risk, as long as they do not unfairly increase the risk to others.
In situations that would pose a risk to others, such as a risk to health professionals when personal protective equipment is scarce or a risk of complicity by heightened exposure in public spaces, there is clearly a balance of rights. Far from being an obvious component of deconfinement strategies, then, continued confinement of those most vulnerable to morbidity and mortality from COVID-19 is a difficult political trade-off between types of risks and rights for different populations. Taking dignity, equality, and vulnerability seriously implies that we cannot just ask the most vulnerable to bear any burden, however great, to allow more total rights fulfillment for others during a pandemic. It also cannot, however, imply that others must make any sacrifice, however great, to enable the vulnerable more total fulfillment of their rights either.
How might this balance be struck? A first attempt could start with an attempt to rank the importance of different rights. This is likely to be thwarted by moral pluralism regarding how rights ought to be ranked, but this may not apply to the whole endeavor. For example, we are likely to agree that the right to be in the presence of family members is more important than, say, the right to stand close to another person at a non-crowded bus stop. Rather than a ranking of rights themselves, however, this sort of consensus is more likely to result from agreement on the ranking of transgressions of these rights. In the example above, seeing family members could be based on rights to family life, belonging, or proxy representation in case of incapacity. Standing at the bus stop could be based on rights to freedom of movement. In this case, however, agreeing that having to keep a distance at the bus stop is less severe than having to refrain from seeing family does not commit us to considering the right to freedom of movement to be less important than the rights to family life, belonging, or representation, or indeed any combination of these rights. All we need is to consider that the transgression made by control of standing positions while waiting is a lesser one, as compared to the transgression made by banning visitors from seeing the vulnerable.
A second approach could start by identifying where the rights of the particularly vulnerable and of the less vulnerable could be made more compatible. Rather than continued confinement, for example, protection could require that those particularly vulnerable maintain protective measures in the public sphere: distance, masks, and hand hygiene. It could also require collective efforts to decrease the risk of contagion through test-trace-isolate-quarantine strategies. Giving those particularly vulnerable the possibility to participate more safely in the public sphere would certainly require some inconvenience to others, but it is unlikely to require outright infringements of their rights. In many situations, then, the balance of rights could be resolved.
The requirement to balance rights would remain in situations where such precautions were not feasible, such as restaurants or nightclubs. Where personal protective equipment is scarce, these places may have to be off-limits to the particularly vulnerable in order to protect health professionals down the line. The problem of complicity would then remain. Complicity, however, requires some form of participation or proximity to wrongdoing, Lepora’s account of complicity in healthcare is helpful here (Lepora and Goodin 2013). Patrons of restaurants and nightclubs do not go there with the intent of placing vulnerable persons at risk. Rather than complicity, their action is closer to what Lepora calls contiguity—remaining close to the wrongdoing, when you could have avoided it. More importantly, however, what exactly would be the wrong involved in such a case? Vulnerable individuals who come to a restaurant in circumstances where there is no scarcity of personal protective equipment are not wronging healthcare providers, who can protect themselves. Are they wronging themselves? That we even can wrong ourselves, particularly when we make conscious and deliberate choices, is controversial (Ogien 2007). Even if such a wrong to ourselves is recognized, and complicity in this wrong therefore conceivable, contiguity may not, on balance, be important enough to warrant banning vulnerable persons from restaurants if they choose to come.
The Situation of Institutions
Persons who are more vulnerable to dying of COVID-19 and who also reside in institutions can become at greater risk of contracting the disease not necessarily due to their health condition, but due to the funding, staffing, and infrastructural weaknesses of these institutions (Oliver 2020). Special protections ought to be extended to them Accommodations, including adequate personal protective equipment for staff and, where appropriate, for residents should be put in place to decrease this risk.
In many places, protections have included bans on visitors. This has had the unfortunate consequence of making residents inaccessible to their family, and also to their advocates and legal representatives, resulting in an increased vulnerability to suffer violence and abuses of power (Gardner, States, and Bagley 2020). This situation must be corrected and solutions developed to enable contacts with these persons while still limiting the risk of contagion. Strategies enabling this should be shared among institutions in order to facilitate the diffusion of successful processes. Residents who are capable of decision-making must also be allowed to take risks if they so choose, as long as they do not endanger others.
Currently, explicit provisions exist in certain cases to discourage, restrict, or even prevent the referral of residents from nursing homes to hospital. This is a striking inequality if the actual place of care (and not the medical condition and needs) is the sole condition for (denying) admission. In any case, concepts of care compatible with accepted standards of care (both curative and palliative) must exist on site. Legal representatives must be actively involved in the case of a lack of mental capacity. The possibility to contact the guardianship authorities and “see behind the curtains” of those confined in institutions must be proactively granted by these institutions. The authorities must monitor these measures. These institutions have to be staffed with adequate resources to fulfill this task, which is assigned to them by the civil code.
Those confined in long-term care institutions should also continue to have access to some forms of social contacts, as well as daylight, sun, and fresh air daily—similar to the rights of persons under detention. Especially if conditions have to change in order to decrease the risk of contagion, accommodations need to be made to enable the maintenance and continuation of people’s meaningful daily activities, their “engagements” that have existential values. Many of these activities have complex functions.
Finally, residents of institutions have the same rights to clear, loyal, and truthful information regarding the pandemic situation and the reasons why measures are in place as the rest of the population. This will require active engagement by the staff in order to overcome sensory and cognitive impairments when they are present, and to inform residents on measures taken by the institution itself and their reasons.
While some institutions kept visitors out and residents in, others shut down entirely, leaving elderly and dependent individuals to the care of family members. As a consequence, they were either very isolated with only sporadic visits from professional caregivers and family members—who were afraid of bringing a risk of contagion with them—or left only with the option of living with a relative for whom the burden was suddenly very heavy (Young and Fick 2020).
LEGAL IMPLICATIONS
If confinement for specific groups should continue, there would be a great need for clarification: Is the confinement a government recommendation or a legal obligation? What exactly does confinement involve? What are confined people allowed or not allowed to do? Who exactly is concerned? Is there one category of vulnerable persons or several? Who decides whether a person falls in the category or not, and how can such a decision be challenged? What is the situation of people living in the same household with confined people?
All these questions would need to be clarified in order to provide such continued confinement on a legal basis. The legal implications of an obligation would also be considerably different from those of a recommendation.
Legal Implications of an Obligation
A legal obligation would involve very numerous and serious legal issues. Some of the legal problems involved are so great that we would qualify them as insurmountable. As the restrictions to fundamental rights would be severe, the legal basis would have to (1) be a law made by parliament (federal or cantonal, depending on competencies), as the decision would have to be made by an authority with the legitimacy to strike a balance between the competing rights outlined above; (2) be based on an overriding public interest (which cannot be to protect vulnerable people against their will); and (3) be proportionate. Human rights limitations cannot be justified by the political will of protecting people from themselves. Persons who are capable of judgement enjoy the right to self-determination, which includes the right to take unreasonable and risky decisions. Any person capable of judgement, vulnerable or not, has the right to accept health risks.
Mandatory confinement could only be justified in three situations:
- The vulnerable person is not capable of decision-making (because she suffers from dementia, depression, etc.). In such a situation, the civil law rules on the protection of adults, and an agency or legal representative decides what is in the best interest of the person.
- The person fulfills the requirements of a mandatory care accommodation (Art. 426 Swiss Civil Code) and is deprived of liberty because no other means guarantee the person’s health and security.
- There is an overriding public interest other than protecting the confined person, such as a risk to the rights and freedoms of other people, or a need to protect the overall health system from becoming dysfunctional. In our view, this is the only public interest on which confinement policies could be based.
Even if one of these situations is given, all confinement measures would still have to be proportionate. Even a person incapable of decision-making could thus not be confined without ensuring that this measure is necessary to protect her and that the confinement is reasonable given her overall situation. Family members or legal representatives would have to make the necessary decisions. If the confinement is established to protect the overall health system, only a flexible system (reacting to the situation in the hospitals, to the number of available intensive care beds and ventilators) would be proportionate. In addition, it would not be proportionate—and hence would not be constitutional—to confine vulnerable people who have renounced the use of intensive care/ventilators in an advance directive.
The European Court of Human Rights (ECHR) case law is quite clear on this issue. Deprivation of liberty, according the ECHR, involves the following:
Taking the above principles into account, the Court finds that the essential criteria when assessing the “lawfulness” of the detention of a person “for the prevention of the spreading of infectious diseases” are whether the spreading of the infectious disease is dangerous to public health or safety, and whether detention of the person infected is the last resort in order to prevent the spreading of the disease, because less severe measures have been considered and found to be insufficient to safeguard the public interest. When these criteria are no longer fulfilled, the basis for the deprivation of liberty ceases to exist.
Confinement measures can thus only be examined under the criteria of contributing to the prevention of disease spread and when this is the last resort. Where other preventive measures can prevent disease spread, such as distancing or test-trace-isolate-quarantine strategies, confinement measures become unjustified.
Numerous aspects of the situation of mandatorily-confined people would have to be determined, such as: work, social security, health services, political rights, religious rights, tenancy, family, social, and cultural life, and more. Appeals procedures would have to be in place. The government, severely limiting fundamental rights and freedoms, would have to take special responsibilities for all concerned people and be obliged to make best efforts in order to limit harm and to enable maximum human rights enjoyment. Such confinement could not take place at home without negating the entire aim, since others living with the confined individual could still transmit the virus outside the home.
Overall, then, a legal obligation for continued confinement of the vulnerable seems to entirely lack feasibility and justification. We conclude that this path should not be pursued.
Legal Implications of a Recommendation
A government recommendation would raise very different questions than a legal obligation. As long as vulnerable people are not legally bound to stay at home, the government can use its soft power to protect specific groups and the health system. As long as people are free to follow or not follow a recommendation, freedom rights are not limited. The issuing of recommendations as such is thus not a legal problem. A recommendation may not be enforced, not even by soft measures.
However, numerous questions would need to be clarified. What is the legal situation of vulnerable people deciding to follow the recommendation? And what would be the situation of people not following it? If negative legal (e.g., financial) consequences are attached to such a decision, a recommendation can turn into a de facto obligation. This is to be prevented, as it blurs rights and obligations.
In Switzerland, for example, employers are obliged to allow persons at-risk to work from home. If their presence is indispensable, the employer must take necessary measures to protect these persons. Still, a particularly vulnerable person may refuse to work if he or she considers the health risks to be too high. If working at home or from the workplace is not possible, the employer must allow the person to stop working while continuing to pay wages. This regulation, as it stands, is not fully clear (when is working from home or from the workplace “possible”?). In addition, the individual employer can be overburdened by it. She or he can take all necessary measures at the workplace and the vulnerable person is still allowed to refuse to work. The refusal to work might be caused by the risks of commuting, or the fear of endangering other vulnerable persons living in the same household, etc. The obligation of the employer to continue to pay wages is currently not limited—in contrast to the rules that normally apply.
If people vulnerable to COVID-19 are allowed to opt out of work obligations, the duty of the employer to pay wages would have to be limited in time as well. After this period, social security would have to step in. Otherwise, there is an (increased) risk that employers stop employing vulnerable people or terminate work contracts. The continued confinement would then further disadvantage vulnerable people in the labor market.
The situation of vulnerable persons without a work contract (e.g., the self-employed) would also need to be clarified.
The effects on families and on childcare would have to be taken into account as well. Of all grandparents in Switzerland, 40% take care of their grandchildren weekly. Overall, they spend about 160 million hours a year looking after children. If there is a recommendation (or an obligation) not to do so, young families (and childcare institutions) will have to carry new burdens. These burdens would have to be borne collectively, at least in part. If grandparents are prevented from looking after children—they (and their families) would then be obliged to make special efforts to protect the health system in the interest of all and should not have to shoulder the financial costs of it.
SUSTAINING THE VULNERABLE
What is our responsibility to take certain actions so that the more vulnerable can have more freedom to participate in social and public life without exposing themselves to unacceptable levels of harm? Individual rights that are balanced with safety during a pandemic do not go away. Rather, they are balanced against the right to life and health during exceptional circumstances. When the situation is acute and leaves no time for measures other than confinement, this balance can be justified. When the situation persists for a longer time, however, providing safe spaces and measures that re-enable the exercise of individual rights becomes necessary. Societies are adapting to living with COVID-19 and re-organizing many activities. This reorganization to re-enable life and the exercise of individual rights, then, needs to happen for everyone and not only for those who are professionally active and not particularly vulnerable to COVID-19.
Examples could include reserved times in shops, museums, libraries, or cinemas, where fewer people would be allowed in at any one time so that those particularly vulnerable to dying of COVID-19 could interact without placing themselves at risk. It could include safe transports for those at particular risk: as the lockdown measures ease and more people move around, it will become more problematic for high-risk persons to go out (in order to get regular cancer treatment, for instance). In a situation where distance is being promoted, special measures aimed at re-establishing social ties will also be needed. And so on.
When assessing whether to make such accommodations—and whether to accept the attendant costs—it should be remembered that everyone’s freedom is assisted and that this always has a cost. We have collectively invested in transportation infrastructure to allow us to come, go, earn a living, exercise our social and political rights, etc. We need to invest in such institutions for the benefit of everyone, not of some only. Responding to the COVID-19 pandemic has forced us to reorganize many aspects of our collective life. It should also force us to reorganize the possibilities for everyone to participate. Equal regard for the dignity of all persons, considered to be the basis for all fundamental rights, would seem to require it.
Inevitably, however, trade-offs will arise. The question then becomes one of balancing the rights and interests of different groups against others. It seems unjust to disregard the rights of the ‘vulnerable’ or the ‘non/less-vulnerable’ entirely, meaning neither confinement of vulnerable groups nor total freedom to engage in any action by non/less-vulnerable groups is acceptable. This must be informed by science and public health principles, but ultimately these are decisions that must be made in a democratically legitimate manner.
SELF-DETERMINATION
From a risk management perspective, the COVID-19 pandemic does not appear as a riskier situation than many of the other—sometimes serious—health problems facing the elderly or those with chronic conditions. Where confinement aims to protect the vulnerable themselves, then, there is no justification to withhold the choice from them. If the pandemic can be sufficiently controlled, then an individual should have the right to decide how much risk they are willing to take. For many, the level of acceptable risk is above zero. The health system is there to care for those who become ill, in the same way that it cares for those who get into ski accidents or develop chronic illnesses linked to personal choices. A low-level, sustainable steady rate of cases may be inevitable and tolerable, in the same way that a low-level, steady rate of car accidents happens every year, despite reasonable precautions by the state.
This means that it is important to distinguish situations where choices made by individuals actually harm others (for example, a resident in long-term care who insists on holding a birthday party with all the other residents and invites her family) from situations where these choices do not harm others (for example, a resident in long-term care who insists on receiving a visit from her seven-year-old granddaughter, who can visit without crossing paths with anyone else).
It also means that taking away the choice wrongs the vulnerable in two distinct ways: first by limiting their self-determination, but also by sending the implicit message that vulnerable individuals are not competent to make their own decisions.
A prolonged confinement based on age will mean age segregation and could reinforce current negative reactions towards those who do not follow the ‘stay-at-home’ message. Messages advising for self-determination could undermine such stigmatization. They would also limit intra-family conflicts of younger generations being overprotective towards their parents and grandparents as a result of official messages.
CONCLUSION
Far from being an obvious component of deconfinement strategies, then, continued confinement of those most vulnerable to morbidity and mortality from COVID-19 is a difficult political trade-off between types of risks and rights for different populations. Confinement cannot be the only measure in place to protect vulnerable persons. Protections are needed to enable and sustain participation in the public sphere and the exercise of rights for persons particularly vulnerable to COVID-19.
Many long-term care homes have currently banned visits from residents’ next of kin and legal representatives. Solutions must be developed to enable contacts with these persons while still limiting the risk of contagion for residents. Such strategies should be shared among institutions in order to facilitate the diffusion of successful processes. Concepts of care compatible with accepted standards of care (both curative and palliative) must exist on site. Institutions must be staffed with adequate resources to fulfill these tasks. Those confined in long-term care institutions should also continue to have access to some forms of social contacts, as well daylight, sun, and fresh air daily. Residents of institutions have the same rights to clear, loyal, and truthful information regarding the pandemic situation and the reasons why measures are in place as the rest of the population. The authorities must monitor these measures.
Vulnerable persons should retain the choice to place themselves at risk, as long as they do not impose risks on others. Vulnerable persons who choose to remain in confinement should be protected against loss of their jobs or income, and against the risk of discrimination in the labor market. If people vulnerable COVID-19 are allowed to opt out of working obligations, the duty of the employer to pay wages must be limited. After this period, social security should step in. If confinement persists, retraining through invalidity insurance may have to be considered in these cases. As the elderly may place themselves at risk if they take care of their grandchildren, free access to childcare for parents should also be part of a protection strategy.
Risk and crisis communication stresses the importance of listening to the people themselves, and to set up participatory approaches. Associations and lobbies representing the views of groups of those particularly vulnerable to COVID-19 (both the elderly and those with diseases placing them at particular risk) should be consulted. Most vulnerable persons are autonomous and competent, and should be allowed to voice their own opinion.
DISCLAIMER
This work was initially developed for a policy brief by the ELSI group of the Swiss National COVID-19 Science Task Force. Five of the authors (CBJ, EMB, SM, PM and SAH) are members of this group. The views expressed here do not necessarily reflect the positions of the Swiss National COVID-19 Science Task Force, or of the Swiss government.
ACKNOWLEDGMENTS
The authors wish to thank an anonymous reviewer, whose insightful comments helped us to substantially improve this paper.
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