Discussion Week 4

OR I G I N A L P A P E R

COVID 19: Ethical dilemmas in human lives

Smadar Bustan PhD1 | Mirco Nacoti MD2 | Professor Mylene Botbol-Baum PhD3 |

Katherine Fischkoff MD4 | Professor Rita Charon MD, PhD5 | Laure Madé MSc6 |

Jeremy R. Simon MD, PhD7 | Meinhard Kritzinger MD8

1Institute of Humanities, Sciences et Societies,

University of Paris Diderot, Paris, France

2Department of Anesthesia and Intensive

Care, Pediatric Intensive Care Unit, Papa

Giovanni XXIII Hospital, Bergamo, Italy

3Bioethics Center, University of Louvain,

Woluwe UCL, Louvain-la-Neuve, Belgium

4Department of Surgery, Columbia University

Medical Center, 177 Ft. Washington Ave.,

New York, New York

5Department of Medical Humanities and

Ethics, Columbia Vagelos College of

Physicians & Surgeons, Columbia University,

New York, New York

6Department of Infectious and Tropical

Diseases, Hospital Bichat Claude Bernard,

Paris, France

7Department of Emergency Medicine,

Columbia University, 622 W. 168th St., New

York, New York

8Department of Anesthesia and Intensive

Care, City Clinic Hospital, Waltraud Gebert

Deeg Strasse 3G, Bozen, South Tyrol, Italy

Correspondence

Smadar Bustan, PhD, University of Paris

Diderot, Institut Humanités, Sciences et

Sociétés, 5 Rue Thomas Mann, 75013 Paris,

France.

Email: [email protected]

Abstract

On 7 May 2020, Columbia University Global Centers hosted an online international

symposium on ethical dilemmas during the COVID-19 pandemic. This interdisciplin-

ary engagement between philosophers and Covid medical professionals reports the

challenges as well as the discrepancies between ethical guidelines and reality. This

collection of presentations identifies four key ethical dilemmas regarding responsibil-

ity, fairness, dignity and honouring death. In looking into accountability and consis-

tency in medical humanities, it examines whether the contextuality of coronavirus

across countries and cultures affected the ethical decision-making processes. This

work aims to provide a seminal resource for the development of a high-quality

roadmap in medical ethics for future health crises.

K E YWORD S

epistemology, healthcare, humanity, medical ethics, philosophy of medicine, public health

1 | GENERAL INTRODUCTION

Dr Smadar Bustan, Philosopher

The novelty of the global outbreak of the highly contagious coro-

navirus disease brought the entire world together as it shared a collec-

tive experience, while at the same time, it pulled us apart with closed

borders, home lockdowns, extreme social distancing, and isolation.

This coronavirus threat presented a unique set of features: everyone

had to be treated as potentially positive as it is possible to be infec-

tious while being asymptomatic. Consequently, the disease often

became a death sentence since there is no treatment or vaccine.

Moreover, our contemporary evidence-based medicine was chal-

lenged as the notion of knowledge became in transitu, knocking the

solid bottom of the entire healthcare practice. Decisions need to be

grounded in science but there was no science to rely upon. Informa-

tion has been confirmed and refuted on a daily basis: face masks were

publicly announced as protective measures but then their viability

was debated; medical protocols at hospitals changed continually, con-

fusing the frontline medical staff trying to save lives while feeding

substance back to the experiential knowledge of medical care. Nations

became indistinguishable by the worry and grief that joined hands:

the long lists of hospitalized people shared on social media, the death

Received: 8 June 2020 Accepted: 11 July 2020

DOI: 10.1111/jep.13453

716 © 2020 John Wiley & Sons Ltd J Eval Clin Pract. 2021;27:716–732.wileyonlinelibrary.com/journal/jep

tolls portrayed by endless lines of military fleet transporting bodies of

coronavirus fatalities for burial in northern Italy, the mass graves in

Latin America or the extent of reported cremations of the COVID-19

victims in China, as well as the alarming cry of healthcare personnel

worldwide.

The risk and prevention, required to limit the coronavirus

spread and rapidly work out the most efficient containment mea-

sures, divided the tasks between the political, medical-scientific,

public, and industrial sectors. Despite their exceptional collabora-

tion, we seem to have turned back to population-oriented medicine

after an accomplished era of personalized medicine, looking at the

mass instead of the ill human being. In addition, when the whole

world seemed to be coping as one, differences emerged in regard

to national or even regional anti-COVID-19 management strategies,

including sanitary and medical forms of intervention. Since the

onset of the outbreak, while keeping people alive has certainly

been the immediate and primary imperative, healthcare profes-

sionals have been overwhelmed by pressing ethical challenges, hav-

ing to make hard decisions for which they were accountable and

to provide reasons for their actions and omissions. Clearly, clini-

cians are trained for ethical decision-making, but in view of the

pandemic chaos paired with the incredible shortage of medical

resources, ethics committees or advisory groups had to help by

providing specific guidelines such as those endorsed by the

“COVID-19 ethical decision-making tool.”1

The reality was and still is represented as being constituted in

the same fashion as that of decision-making in times of war where

the urgency, scarcity of medical supply or critical care beds, rapid

spreading of new cases, time-sensitive procedures, and fighting

the unknown during a public health emergency continue to weigh

efficiency (Is it the most effective? What will be the end result?) over

the ethical (Is it the right thing to do?). The sensitive issue of medi-

cal rationing raised very important questions about “fairness” in

the context of broader social injustice and was particularly notice-

able during this global healthcare urgency. The dramatic phrasing

regarding “the war against COVID-19” announced by politicians

and health organization directors-general became integrated into

the healthcare system. It forced challenges that no longer strictly

applied to individual patient care (allocation of limited resources

such as ventilators, the sharing of patients' confidential informa-

tion with relatives or even the media, denying opportunities for

families to say goodbye before a death) but also applied to the role

of practitioners who found themselves in a newly created chain of

command.

The essential service of medical ethics and its decision-making

process, as I see it, consists in allowing for one part of the decision

to lean upon another part of the decision in order to become unam-

biguous. In this way, each one of the several aspects in which the

ethical decision may be considered, assures the fundamental values

of the right and the good. Such deliberation is based on having a

choice regarding which end to pursue. However, moral dilemmas

put us in a situation of conflict where a difficult choice has to be

made between different options where neither resolve the issue in

an ethically ideal acceptable fashion. Medical ethical dilemmas cre-

ate even more conflict because they touch upon human lives. The

COVID-19 pandemic obliged us all to handle many dilemmas, some

of which we took upon ourselves as philosophers, ethicists, doctors

and nurses to discuss during the online symposium COVID-19: Ethi-

cal Dilemmas in Human Lives, held on 7 May 2020, and hosted by the

Paris Global Center of Columbia University and the Columbia Global

Centers. We may not provide ready-made solutions here, especially

as the epidemics storm still rages. This discussion testifies to the

ongoing pandemic emergency and its difficult challenges while eval-

uating whether the ethical guidelines in the official healthcare rec-

ommendations were able to meet the lived reality. Looking at

accountability and consistency in regard to the context of this global

health crisis, it seemed equally important to examine, through an

international exchange, whether the contextuality of COVID-19

across countries and cultures affected the ethical decision-making

processes. The following collection of the symposium's presenta-

tions maintains the original discussion format, whereby each

dilemma is addressed by a COVID clinician and then analysed by a

philosopher or an ethicist, who, at times, is also a practicing physi-

cian. I organized the discussion around four notions depicting four

key ethical dilemmas with leading questions, even though others

clearly come up in the various discourses.

1.1 | The four ethical dilemmas

The following are the identified four key ethical dilemmas:

1. Responsibility: Can medical responsibility change in times of

pandemic?

2. Fairness: In times of emergency, scarce healthcare resources, and

risk of infection to the medical staff, how do we decide where we

draw the line of whom we treat, who will live and who will die and

how to ration treatment without denying care (triaging resources)?

3. Dignity: Does the need for increased awareness of public harm in

a pandemic justify impinging on patients' rights to bodily and per-

sonal dignity and privacy?

4. Honouring death: Does public interest in social distancing out-

weigh the patient's right not to die alone and the family's right to

be with their dying relative?

The challenging questions raised here are intended to reinforce

our ethical values and speak of the well-being of the sick human

being, the dignity of the dead person, and refer to a patient as a per-

son to be cared for rather than a critical case or a contaminating

agent. And while the coronavirus continues to widely spread across

the globe, we hope that our discussion can serve as a resource for

advanced care planning, helping medical providers and other special-

ists to consider the shared important aspects of medical ethics in

times of great uncertainty.

For the symposium video, please view https://www.youtube.

com/watch?v=07Nup9eMROA.

BUSTAN ET AL. 717

I would like to thank the Paris Global Center of Columbia Univer-

sity and their wonderful team for hosting the symposium in these

exceptional times along with the Columbia Global Centers in Amman,

Nairobi, and Istanbul. And last, I would like to thank all the healthcare

and essential workers worldwide for their daily engagement to over-

come the COVID-19 virus.

2 | FIRST ETHICAL MEDICAL DILEMMA: RESPONSIBILITY

Can medical responsibility change in times of pandemic?

2.1 | Responsibility: Mirco Nacoti, Clinician

Mirco Nacoti, MD (Italy), is an emergency, anaesthesia and intensive care

physician at Bergamo Hospital, Italy. He has extensive field experience in

humanitarian crises and community approach to vulnerable people.

Two months after the beginning of the crisis, I still have major

problems sleeping.

I have dragged the corpse, from the bathroom to the bedroom, of

a 50-year-old man who had died at home.

I have seen dozens of people piled up in emergency rooms with

severe dyspnoea and frightened eyes.

I have spoken on the phone to a friend of mine and said to her:

you must choose between your father and your mother.

I have run at night to my hospital, taken a drug for sedation and

come back to look after an old man dying, as my hospital was too

crowded.

I have obeyed an order to transfer to Germany by flight an

intubated man and he has died on his way. I have never spoken to his

parents.

I know many young anaesthetists in my hospital who have

decided alone who were to live and who were to die.

I feel a persistent smell of people suffering on my skin.

The pale light of an old humanitarian actor, with some studies in

bioethics, is now a fire. Forty years later, the Alma Ata definition2 of

primary health care seems vital to me.

I have done and watched a lot over these past 2 months. But my

night-time question is: have I thought enough? That is why I am very

grateful to have this occasion to think.

Bergamo is a rich and populous city of northern Italy (1 000 000

people) and one of the epicentres of the worldwide COVID 19.

Despite the generosity of health workers, we are undergoing a severe

humanitarian crisis that is stressing every aspect of daily life.

From outside it is very hard to understand, because houses are

closed for lockdown and are not destroyed as they would be in an

earthquake. Furthermore, in regard to the dilemma of moral responsi-

bility, the World Health Organization (WHO) figures do not represent

the reality. WHO is doing a great job, as usual, but the figures pro-

vided are a dilemma, as usually occurs during an outbreak. Today

WHO shows about 3 500 000 confirmed cases with 240 000 deaths3

worldwide and in Bergamo 13 000 confirmed cases with about 2500

deaths.4 Unfortunately, the actual deaths reported by town halls are

about 6000 to 7000 (nearly 1% of the population).5 Considering that

a fatality rate of 20% is a non-sense, because the Chinese experience

(even in Hubei province) reports a rate between 1% and 3%,6 the

number of people contaminated in Bergamo is likely to be between

250 000 and 500 000 (which means 25%-50% of the population).

More than 2000 people with mild-severe hypoxia, at the peak of the

outbreak, stayed home because all the hospitals were overcrowded.

These are the real figures. This is the picture of Bergamo's disaster.

For this reason, we wrote a paper, which appeared in the New

England Journal.7 In regard to the dilemma of moral responsibility,

when the global medical community is called on to face a pandemic of

unprecedented scale, with little scientific evidence and “crazy num-

bers” describing the situation, honest and forthcoming advocacy is an

ethical duty, and that paper was a wake-up call for those involved in

system preparedness and strategic planning.

An outbreak is neither a simple disaster casualty incident like an

earthquake nor a “simple” disease, but it is a social phenomenon. His-

torical and social elements are key factors for development (eg, inten-

sive promiscuity between animals and humans) and spread (eg, health

workers and ambulance rapidly become vector of the virus) of an

epidemic.7

A first consequence of this translation into a social horizon con-

cerns the theme of responsibility. And in regard to the dilemma of

moral responsibility, how much does the social narrative about the

infection numbers weigh, for example, on the decisions to be taken

and on the concepts that guide them (eg, that of proportionality)?

How do inaccurate narratives, from an epidemiological point of

view, affect the “judgement in situation,” that takes place in triage or

in prevention strategies in other countries? How many shocking

images are needed if figures are not reliable?

Another aspect of the dilemma of moral responsibility concerns

the care of decision-making process and the fragmentation of respon-

sibility. Modern Western medicine has centralized the care of patients

in the hospitals (and our region does represent this process),

preventing the community from being the main actor in the sphere of

public health and putting into practice an “expropriation of health,” as

Ivan Illich says in Medical Nemesis.8 Body has been progressively frag-

mented in small pieces by super-specialized doctors and responsibility

has ended up being a question of legal responsibility, an economic

matter, and not an ethical one. In this fragmentation, it has been

acceptable for us to execute orders, even if epidemically dangerous or

not ethical, because we were living an urgent situation, and during the

fight against COVID 19 the mantra was “to do and not to think.” It

seems, as Hannah Arendt writes in her “Banality of evil,” that “nobody

was responsible, or rather, nobody felt they were; they just did their

job.”9 Would it have been useful to have a mechanism of control of

decision makers in close contact with territories? Only the awareness

that the weight of a decision is to be shared can prevent us from turn-

ing the triage into a moment of irresponsible superhomism.1

A further aspect of the dilemma of moral responsibility is the

ethics of the research in urgent situation. As Derek C. Angus wrote in

718 BUSTAN ET AL.

a JAMA view point,10 one stark example is the debate over prescrib-

ing available drugs, such as chloroquine, or testing these drugs in ran-

domized clinical trials. At the heart of the problem is one of the oldest

dilemmas in human organizations: the “exploitation-exploration” trade

off. Exploitation refers to the “just do it” option. Exploration refers to

the “must learn” option.

During his captivity in the 1940s, Archibald Cochrane treated

many prisoners, often ill with tuberculosis, by observing how the

disease benefited more from a good caloric intake than from drugs

of uncertain or zero efficacy. The germs of Evidenced Based Medi-

cine arose from those observations. Eighty years later, in regard to

the dilemma of moral responsibility, how many helmets to deliver

respiratory assistance have been placed without any enteral feed-

ing in Bergamo? Chloroquine, antiviral, anti-IL6, anti-complement,

steroids, and antibiotics have been distributed without a real meth-

odological approach, without monitoring, with people arriving at

the hospital worn out after days of dyspnoea. What data, what

ethical research can be produced in such a mess, what if you pub-

lish on an important indexed medical journal but the “garbage in,

garbage out” approach is still considered the right one11? Further-

more, in regard to the dilemma of moral responsibility, what about

signatures extorted for consensus from a dyspnoeic patient with

no family member nearby? Such a touchy a matter would require

competence and experience, and yet it was often managed by resi-

dents instead of specialists. Not everything is lawful in urgency

and there is an ethics of research even in urgency.

Derek C. Angus suggests at the end of JAMA view point10 that

an integrated approach of “learning while doing” is essential in a crisis.

Nevertheless, in our current context, it is very important not to lose

the capacity to think and probably we have to subtly shift from Angus'

suggestion to a “thinking/learning while doing,” as Hannan Arendth

writes.12

Goisis, a philosopher, co-author of the New England article, says

that it is not true that nothing will be as it used to be before COVID-

19. Millions of people in the world will be more vulnerable and iso-

lated. But the economic, scientific, political, and social mechanisms

leading to this pandemic humanitarian disaster are still there. “Doctors

have to give back to the community the capacity to promote health,”

could have said Ivan Illich today.

2.1.1 | Acknowledgements

The author thanks Dr Matteo Cavalleri and Dr Giuseppe Goisis for

their help with philosophic suggestions and English editing.

2.2 | Responsibility: Smadar Bustan, Philosopher

Smadar Bustan, PhD (France), is a philosopher, ethicist, and scientist at

the University of Paris Diderot. In her research on human suffering and

pain, she developed a tool for evaluating the disease-related suffering of

patients following experimental and clinical studies in Luxembourg,

Germany and France. She co-founded at Harvard and heads the Interna-

tional Program on Suffering and Pain (www.suffering-pain.com).

The dilemma discussed here bears on responsibility, a Latin term

from 1590 resp�ons(us) or response, which became philosophically

prominent rather late in the 18th century. Our question is, does

responsibility, and more specifically medical responsibility, change

during a global health crisis? Is responsibility limited in the avalanche

of an infectious transcontinental disease, obliging us to relieve clini-

cians from the burden of decision-making process carried out in indi-

vidual cases?

A broader conceptualization of the nature of responsibility is

necessary in order to deal with this dilemma, by first asking: what

does it mean to be responsible in times of pandemic? Responsible

behaviour during the coronavirus infection outbreak was very much

present in every household and country around the globe. Yet the

lack of adequate knowledge caused significant inconsistency lead-

ing to public panic and raised doubt about what it means to act in

a responsible manner, both personally and collectively. The problem

with a pandemic is that the personal and the social intermingle to

the extent that the most casual individual acts, such as coughing,

sneezing, going out of our homes, or walking around maskless,

turns a person into a biological agent engaging into irresponsible

behaviours that some would qualify as criminal or immoral. This

COVID-19 Epidemic has been enhancing mutual accountability to

such an extent that individual responsibility is transferred from an

autonomous self to a self intrinsically bound to others. One can no

longer exert free will to live carelessly and be prepared to risk

contamination.

What we have learnt from this epidemic as a globalized society is

that individual responsibility is no longer exclusively centred on what

we are bound to undertake by duty, of a person being responsible for

something or someone (a parent for their child, a doctor for their

patient) since simply by being, breathing, existing, we are accountable, all

of us together and every one of us individually.

Unfortunately, under such circumstances, our responsibility

becomes as vulnerable as we are.

The fragility of a pandemic causing this involuntarily responsibility

by existence, with its inevitable sharing of accountability, leads us back

to our main ethical dilemma when asking what motivates us to make

the right choice for a responsible act during a health crisis. For the

overwhelmed practitioner inquiring how to fully know what the right

act is, how to best choose in relation to the available resources and to

whatever is in one's power, the resignation to do “the best we can”

may provide protection from liability but not necessarily satisfaction

or peace of mind. When the medical model of responsibility is guided

by reasoned thought in regard to what we can do and the means that

lead us to better ends, It is difficult not to notice the unrest when this

intellect-based definition of being responsible entails a sense of feel-

ing morally, medically or even humanly irresponsible. When reading

Dr Nacoti's testimony, it becomes clear that even though a well-

regarded thought led him and his colleagues to make decisions for

saving lives, the strong remorse experienced following the death of

their patients shows that a reason-based decision for acting

BUSTAN ET AL. 719

responsibly with a negative end result may leave clinicians with a feel-

ing that they are partially at fault for the failure.

The severity of the pandemic has exposed many of the medical

workers, as those in the frontline in north Italy where Dr Nacoti

works, to face the toughest triage procedures in medical care with

the prospect of having to ration equipment and care, sacrificing cer-

tain people for saving others and facing unthinkable choices regard-

ing life and death. The lack of treatment led to the use of drugs on

the basis of limited evidence concerning their effectiveness and

therefore not without risk while trying to assure the highest rate of

survival. In this respect, even when providing immunity against mal-

practice during the emergency of COVID-19 and hence excluding

any legal responsibility, as Dr Fischkoff recounts about the State of

New York in her discussion on fairness, the problem with ethical

responsibility persists not only in regard to the possible damage cau-

sed by one's own act, but also to the consequences of this act on

the people to whom they must answer. We find here the two

aspects of the modern idea of responsibility, associating legal and

moral responsibilities. The interdependence of these two aspects

may explain why, despite excluding any legal sanctions and there-

fore legal responsibility in a time of unprecedented crisis (facing

scarce resources and exceptional emotional burden on healthcare

personnel), the ethical dilemma persists because medical decisions

remain attached to our moral obligations. Treating clinicians whose

actions are based on well-justified rational decisions may still carry

blame, unable to wash away the guilt, because these fail to comply

with their moral convictions.

The lived reality of the pandemic obliges us to go beyond the first

form I named responsibility by existence to better examine the medi-

cally relevant form of responsibility by deliberation, introducing the idea

of making a choice as a result of deliberation and of fully knowing

what is the right thing to do. Two philosophers who represent this

strand of thought with the traditional concept of responsibility as

dependent on knowledge, striving to certainty and regulatively know-

ing everything or at least as much as possible, are Aristotle (4th cen-

tury BC), in his account of Ethics, and John Stuart Mill almost two

millennia later with his utilitarianism13 (19th century). In the third

book of Nicomachean Ethics,14 Aristotle examines what is good for the

human being – what we need to undertake, aim at, and act upon, in

order to do good. In our case, medicine aims at health, and physicians

aim at healing. In this respect, what Aristotle also taught us is that

when we deliberate, we always have some end in view. If I deliberate

about whether to put a mask, I consider this in light of a future end in

view, which is to avoid catching or spreading the COVID-19 virus. If I

deliberate about whether to respect the extreme social distancing of

the quarantine and stay at home, I consider this in light of a future

end in view which is to slow down and eventually stop the epidemic's

spread.

Aristotle claims, however, that there are two things we cannot

deliberate about: facts (which could only be examined) and end views,

for the simple reason that we cannot change them. Hence our choice

based on deliberation of doing good and acting responsibly are depen-

dent on end purposes and on sticking to the facts, and basically on

knowledge. At the same time, if during the COVID-19 pandemic we

apply this philosophical recipe with reason-based choices regarding

medical responsibilities, we soon realize that clinicians are being

severely undermined, which only intensifies our dilemma. In reality,

we have witnessed misinformation emanating from situation reports

and official communications, including from public health authorities,

through inaccurate or misguided information. For example, It was said

that smokers are less likely to be contaminated, ibuprofen or aspirin

can worsen the coronavirus symptoms, or the virus is unstable at high

temperatures and therefore will go away when the weather warms

up. In the upheaval of the aggressively spreading epidemic, scientific

facts continuously evolved so action based on facts had to adapt,

inducing further confusion relative to our standard approach of

evidence-based medicine that cancelled out knowing beforehand and

making a contingency plan accordingly. Furthermore, at the outbreak

of the pandemic, the end view of medicine and its therapeutic goals

shifted from healing to prevention from dying, totally destabilizing the

standard therapeutic goals.

Under a state of emergency and threatening rapid death, we

could simply proclaim that without a solid foundation to rely upon for

making choices, the entire undertaking of medical and social responsi-

bility is bound to perplexities. Medical professionals must respond

when facing flows of COVID patients with severe respiratory distress

out of active commitment to vulnerable patients. De facto, they do

respond. But do they need, in this unique scenario, to take responsi-

bility for their medical response? In respecting their devotion and dili-

gence, can we relieve clinicians from a part of the responsibility in the

decision-making process as normally carried out in individual cases?

A comprehensive approach should be compatible with extant

principles of responsibility under the given circumstances. A broad

approach to analyse responsibility for pandemic diseases should con-

sider both forms of responsibility, by existence and by deliberation.

This would be better overall for society and healthcare, considering

the disruption due to shifting facts and undermined medical ends, thus

promoting more careful policies and actions.

At the same time, the outcome of the discussion so far has been

to show us that a person or an act can be considered responsible so

far as one is bound by it, or thinks it to be right. My first observation

in examining “what is it to be responsible” in times of pandemic con-

sists in introducing the idea of responsibility by existence for all, regret-

tably excluding the freedom to be able to do otherwise. And my

second observation examining “what is it to act responsibly” consists

in introducing the idea of responsibility by deliberation, of accountabil-

ity for our actions and their consequences, and the praise and blame

attributed to the moral agent. Deliberation is a reasoned thought

about what we can change by our efforts and where we need to act

differently in various occasions. And yet, in times of pandemic the

foundation for well-reasoned and thoroughly discussed decisions, fos-

tering a collegial consultation as standardly required, is damaged

because neither the facts nor the end views are stable enough to

serve as references for deliberately acting responsibly. Dr Nacoti

raised this point when he spoke about referring to the general qualifi-

cation of the COVID pandemic as a war with a chain of command

720 BUSTAN ET AL.

whereby clinicians were to simply obey, following the mantra of “do

and do not think” and inexperienced doctors found themselves having

to decide alone who will live and who will die. The resulting epistemo-

logical helplessness of the coronavirus pandemic sheds a new light on

the idea of responsibility due to the conflict within the medical profes-

sion, naturally based on knowledge but confronted with a new situa-

tion of not knowing. This novel chaotic situation cancels Aristotle and

Mill's rationalist view of acting by virtue and for the benefit of good

on the ground of knowledge, as clinicians who have an occupation

requiring them to be well informed in order to act responsibly lack in

effect the necessary knowledge.

This outcome for the practice of medicine and our philosophical

inquiry requires to rethink the notion of responsibility and moral obli-

gation by moving philosophical fields, going from Aristotle's guiding

but failing rationality to Levinas' field of ethical phenomenology. The

reason is that none of the perspectives that have been actually pres-

ented here has paid full attention to a third form of responsibility,

based on an entirely different philosophical pattern and that provides

a way out of this dilemma regarding acceptable or unacceptable

changes in medical responsibility in times of pandemic. This alternative

view consists in arguing that responsibility is involuntary, not bound

by rational choice, certainly not a deliberate one and is totally experi-

ential. Becoming responsible for a sick person is imposed upon us by

his needy, vulnerable presence when calling for help, often without

words, in an appeal conveyed by the misery and helplessness of their

facial expressions. This sense of ethical responsibility goes beyond

that of a reflective commitment. And just like the first form of respon-

sibility by existence, it separates one from oneself by giving prece-

dence to the other person, while emphasizing here that this other

person is weaker and more at risk. Levinas considers the experience of

responsibility as what binds one person to another, as the foundation

for humanity and ethics, which he demonstrates through the well-

known theme of the meeting face-to-face, when encountering the

face of the other person causes a phenomenological shock that makes

one feel inevitably responsible for their fellow human being.15

I have to admit that in my writings on ethics and the sufferer and

especially in my review of what I call the “French School of the Ethics

of Suffering,”16 I always criticized this uncompromising level of

responsibility and priority Levinas claims we can grant another person,

even when we are ourselves sick, exhausted and emotionally

strained.17 But when I caught the Corona virus at the beginning of the

outburst here in France, the sense of responsibility and giving priority

for the well-being of another took over me. My symptoms were mild,

but sudden. I fell down on the floor without being able to get up

again, feeling the chill and honestly the fright of the unknown progres-

sion of this aggressive virus that literally took control over my body

within minutes. While lying on the floor, what bothered me most was

the possible contamination of my children and particularly of my asth-

matic elder son who was designated as part of the COVID-19 risk

group. I was sick, not being able to give anything, let alone move my

body, and yet, just as Levinas claims, the disinterested sense of

responsibility towards another invaded me and my responsibility for

not contaminating them became my absolute priority. It was not a

voluntary or deliberated sense of responsibility and it very much

obsessed me when I was most helpless.

Obviously, one could contest this example by rightfully claiming

that children are an extension of the parent (and therefore, in this

case, of myself) and do not represent a “real Other” in the full

Levinasian sense. And as I demonstrate in my book on Levinas' ethics,

the unreflective encounter with the other person rather represents a

situation that makes me surrender myself to them, often against my

own will and without being able to expect anything in return.18 The

other could be a stranger one has to commit oneself to despite want-

ing to walk away, a patient entering an already overbooked COVID

unit whom an overburdened doctor would rather put to wait or a con-

taminated elderly person placed in the care of a scared nurse, wearing

a plastic bag due to lack of proper protective equipment (reminding us

of the institutional responsibility towards the caregivers and the

safety protocols). The other person may even constitute a threat but

since their urgent call for help precedes me and is imposed upon me

immediately, I am obligated to be there for them, unable “to get out

from under responsibility.”19 It is the lived experience and encounter

between human beings that make us responsible, not knowledge or

deliberation on the account of facts. Human responsibility is simply

being there for the other, claims Levinas.20 The activated sense of

responsibility towards the survival of others places them first, prior to

worrying about our own survival and prior to any conscientious

processing. One is compelled to worry and care for the other says

Levinas, since responsibility does not originate from within oneself,

but is rather an order or command that one receives. It precedes us in

the sense that it originates from a prior time and our ascendants

(ancestors or past generations), as Ezekiel Mkhwanazi beautifully

explains,21 it is pre-original.2223

In transposing this view to our discussed dilemma of medical

responsibility, it soon becomes clear that what stems from this sense

of duty, of a caregiver or a medical worker, is not a Greek agency or

freedom to choose the good, but a fundamental archaic obligation of

oneself towards another, and that it “commands me and ordains me

to the other.”24 In this perspective, this amounts to saying that our

dilemma is cancelled since no judgement can be made about treat-

ment or availability of the medical caregivers during a pandemic. Their

mere presence beside a COVID patient's bed is a celebration of being

there for the patient and of human responsibility at its best.

2.2.1 | Acknowledgements

The author thanks Dr Jeremy Simon and Dr Javier Escartin for their

help with English editing.

3 | SECOND ETHICAL MEDICAL DILEMMA: FAIRNESS

In times of emergency, scarce healthcare resources, and risk of infec-

tion to the medical staff, how do we decide where we draw the line

BUSTAN ET AL. 721

of whom we treat, who will live and who will die and how to ration

treatment without denying care (triaging resources)?

3.1 | Fairness: Katherine Fischkoff, Clinician

Katherine Fischkoff, MD, MPA (USA), is an Acute Care Surgeon and inten-

sivist at Columbia University and is the Medical Director of the Surgical

Step Down Unit. She is an active member of the Columbia Ethics Com-

mittee, the SCCM Ethics Committee and an ethics consultant.

Fairness has been a driving principle of the treatment of COVID

patients throughout the pandemic response. However, given the

overwhelming number of patients in New York City, the challenges to

fairness evolved as the COVID crisis unfolded.

To begin with, on 18 March 2020, all elective and semi-elective

surgeries and other procedures were cancelled in New York City to

allow hospitals to free up resources in anticipation of the surge of

patients.2526 This presented the first questions of fairness. Patients

who were scheduled for often time-sensitive treatments were post-

poned in order to be able to care for the thousands of COVID+

patients. This was, of course, not just a question of fairness, but also

of patient safety, reallocation of resources and preservation of PPE.

However, any time one group of patients is prioritized over another,

we must ask ourselves whether the outcomes were proportional. In

this case, the overwhelming answer is yes. Shutting down normal hos-

pital operations was essential in being able to safely take care of the

enormous crush of patients that presented. However, should there be

another wave, the proportionate harm to those patients who would

be postponed needs to be considered and alternative options pro-

posed in order to avoid interrupting their care again.

The second question of fairness came when questions of triage

arose. In the United States, there is a strong cultural and legal empha-

sis on patient and family autonomy. This American phenomenon per-

sists in part because the health care system is so resource rich. As an

example, New York State law in the form of the Family Health Care

Decision Act27 does not permit physicians to withhold or withdraw

life-sustaining therapy over the objection of patients and their fami-

lies. In this cultural and legal context, when the COVID surge began

and there were serious concerns about scarcity of resources, the gov-

ernor of New York decided that rather than approve a triage system

to decide which patients would get a ventilator and which would not,

he would work to provide ventilators for everyone and New York hos-

pitals committed to rapidly expanding their intensive care unit (ICU)

capacity.28 My hospital typically has 117 ICU beds but over the

course of 2 weeks, we expanded to nearly 300 ICU beds and pop up

tents provided extra inpatient beds. This was done without a compen-

satory increase in staffing. But because of this, no patient was

turned away.

In 2008 after the H1N1 flu outbreak, many states put together a

resource allocation plan that could be used in the case of crisis when

resources were overwhelmed. The New York State Ventilator Alloca-

tion Guidelines29 were built on the ethical principle of fairness that all

patients would be given equal access to ventilators regardless of

socioeconomic factors. It begins with a set of immediate exclusion

criteria that are applied to a patient when he or she is determined to

need a ventilator, such as unwitnessed or recurrent cardiac arrest,

severe traumatic brain injury or irreversible hypotension refractory to

fluids and pressors. If a patient meets any of those criteria, he or she is

not given a ventilator but is offered either best medical management or

palliative care. If a patient needs a ventilator but does not meet any of

the immediate exclusion criteria, he or she goes on to evaluation by a

“Triage Committee” which follows a very specific pre-determined algo-

rithm to decide whether a patient would be given access to a ventilator.

The goal of the Allocation Guidelines is to determine a patient's

access to a ventilator based on prediction of likelihood of survival and

not based on value judgements. In fact, to uphold the fairness of the

process and to ensure there would not be any decisions based on

social or economic factors, the triage committee is a third party whose

representatives are not directly involved in the care of the patient and

does not receive any demographic information.

As noted above, the Allocation Guidelines were not activated dur-

ing the COVID crisis. With an incredible show of collaboration, crea-

tivity and immense hard work, hospitals in New York City were able

to care for all patients who had COVID. The question must now be

asked, is it ever fair to activate a triage process and deny access to

critical care resources if there is the option to stretch resources fur-

ther? The Institute of Medicine describes the spectrum of hospital

expansion in response to a public health emergency.30 Conventional

capacity is the normal operating capacity of a hospital. Contingency

capacity is defined as operating significantly above a hospital's usual

capacity but is a state in which normal standards of care can be deliv-

ered. Crisis capacity is the final stage in which hospital resources are

stretched so thin that normal standards of care cannot be provided. It

is often recommended that triage systems be activated before a hos-

pital enters crisis capacity as a mechanism to help avoid providing cri-

sis standards of care.

New York made a decision to enter crisis capacity rather than

activate a triage system. This necessarily meant that hospitals were

providing crisis standards of care to all patients rather than normal

standards of care to fewer patients. Nursing and physician ratios were

tripled, non-ICU trained physicians were caring for ICU patients and

all manner of hospital spaces were repurposed to create rooms for

ICU level patients. One particular example was the provision of dialy-

sis. So many critically ill patients required dialysis that hospitals

quickly ran out of machines and supplies.31 This meant that in some

cases, in a manner not consistent with typical standards of care,

patients received fewer hours of dialysis than normal or had perito-

neal dialysis as a manner of stretching the supply of dialysis to meet

the demand.

As an acknowledgement of crisis standards of care and in order

to support clinicians' ability to continue to care for so many patients,

the governor of New York passed the Emergency Disaster Treatment

Protection Act.32 The Act's stated purpose is to broadly protect health

care facilities and professionals from liability for the treatment of

patients during the COVID-19 pandemic. The Act shields health care

professionals from civil and criminal liability in connection with

722 BUSTAN ET AL.

services provided to any patient as a result of and during the COVID-

19 crisis, so long as decisions are made in good faith. For decisions

that are alleged to be unlawful, the Act also provides immunity if they

result “from a resource or staffing shortage.” Such legal protections

were imperative to allow healthcare workers to continue to practice

in the crisis environment but also are a recognition that the provision

of crisis standards of care may contribute to adverse events.

While there are many ongoing conversations about whether

New York should have activated triage systems, I have never been

prouder of my city and my colleagues for their response to the

COVID crisis. Taking care of nearly 120 000 New York City

patients required perseverance, courage, resourcefulness and a will-

ingness to accept personal risk. It will be months before we have

outcomes data on the COVID patients and even longer before we

will fully understand the consequences of our decision to treat all

New Yorkers. But until then, we can stand tall in the knowledge

that while our healthcare system was under unprecedented stress,

we performed heroically and fairly.

3.2 | Fairness: Triage in the name of quality of life? Mylène Botbol-Baum, Philosopher

Mylène Botbol-Baum, PhD (BELGIUM), is full professor in the faculty of

Medicine and Public Health IRSS in the Biomedical Ethics Unit (HELESI),

member of the Ethics Committee (INSERM France) and Professor in the

Philosophy Department, at UCLouvain, Belgium.

Katherine Fishkoff has been addressing the issue of fairness from

a regulatory perspective and the responsibility of the mayor of

New York who has decided to protect medical doctors from trials

when they take a reasonable decision in a context of emergency.

These decisions raise dilemmas linked to conflict of interests and

interpretations around the word fairness and even about what consti-

tutes a fairness dilemma.

My first question, as a European benefiting from a providence

state, is at what condition can we have fairness in an unfair system,

that is, a non-egalitarian context? What are our basic assumptions

about moral reasoning when we address dilemmas in situation of

uncertainty?

We must take seriously the health system capacity of anticipation

that refers to public health at large since the issue of fairness is essen-

tially a biopolitical issue, which has global consequences during a

pandemic.

We know that the pandemic reduction was not a priority for the

US government, and many other opulent countries did not prepare

adequately for it, so that the enormous responsibility to confront it

befell on the medical providers. This imposed on them an uneven

focus on present day patients, rather than the actual and prospec-

tively sick. If we speak of fairness, we state that reducing the pan-

demic risk is a global public good inscribed in a complex temporality.

• Who gets healthcare resources?

• Can it be based on meritocracy, age, or function?

• Can we apply the same principles to all COVID-19 and non-

COVID-19 patients?

• How to prioritize access to healthcare?

According to American bioethicists, referring to utilitarian princi-

ples, maximizing benefits is the most important principle, followed by

the principle of care vs stewardship of resources.

Prioritization should aim at both saving the most lives and all-

owing empowerment of individuals post-treatment (definition of

Dalys: to ensure future years of life with minimum handicap).

But what about the subjective perception of quality of life?

What kind of dilemmas are we confronted with, if we take the

subjective dimension of quality of life seriously and not only Qualys?

Dr Fishkoff underlines the dilemma of providing medical assis-

tance below our standard of care to all patients, vs normal standards

to fewer patients.

Is this a dilemma between equality vs quality of care?

How does the notion of fairness lead us to respond and resolve,

or not, the dilemma? It seems to me that there is no dilemma here

when the basic principle is care. We should indeed maximize care. For

instance, New York has a good public health system and has pro-

longed the obligation of social distancing. It should therefore not suf-

fer too much of scarcity of medical resources leading to dilemma.

If we want to solve this dilemma in terms of rational arguments,

we can address:

• Moral intuition

• Symmetry

• Incommensurability of the previous point

Dr Fishkoff tells us that the extreme shortage of dialysis machines

conflicts with caring for all, which does not support a systematic

account of triage. The difficulty is that the modern notion of dilemma

confronts us with an impossible choice, even though to exclude the

possibility of dilemma moral rules are precisely established to pre-

scribe the choice of one action and exclude the other. This dilemma

problem can thus be divided into two correlated parts:

1. The epistemological choice where it is logically difficult to deter-

mine what is my duty, when facing scarcity of ventilators for

instance (either/or).

2. When both actions are necessary, but I can only do one of them, I

encounter my finitude and my own vulnerability to act as an agent

of choice.

So that any agent of care, or doctor here, is confronted with two

sorts of conflict of obligation narratives:

1. One obligation is stronger than the other (so the conflict is not a

real one).

2. The two obligations are equivalent, and I am facing an unsolvable

dilemma because, in terms of fairness, there is no hierarchy

between the two choices.

BUSTAN ET AL. 723

But during a pandemic, which is a natural and societal threat, we

are facing the fact that rules can be consistent only if the context of

disruptions of my narrative representations, my narrative world, can

remain a consistent world as well.

In this disruptive moment, one realizes that rules are only useful if

there are circumstances in a possible world of coherence, which is

precisely what we lose in a situation of emergency, where all priorities

seem to be reversed.

Choosing is the first duty in a situation when there is a clear

hierarchy between the duty of care and the efficiency rule. In a

state of uncertainty and urgency, the agent chooses first and fore-

most according to what I called her moral intuition. Facing a

dilemma, she will use reason or moral rules to prioritize her deci-

sions. These two states might be in tension with the efficiency

logic of a public health ethics, where the collectivity is supposed

to come before the individual interest of the singular patient, as if

the collectivity was not constituted by individuals. Therefore, in a

situation of uncertainty, I would prefer to advise the bottom up

approach that combines moral intuition and rationality around the

notion of quality of life. The reason is that it associates fairness as

a form of loyalty to a subjective vision of quality of life or stan-

dard of living.

Indeed, the concept of fairness was developed within a frame-

work in which tastes or values, although varying among individuals,

remain constant.

We understand at this stage that the notion of fairness is hard to

use in the contingencies of a pandemic. Perhaps his is because, during

a pandemic, socially accepted values can be toppled upside down.

This could explain that, in New York, egalitarian care became the pri-

ority over the rationing of care, which is the accepted cultural model

in a highly competitive society based on meritocracy.

The climate of uncertainty and the sudden lockdown allowed for

the surrealist scenario that all former economic priorities have been

put aside from a quasi-species survival instinct.

So, what could have been a dilemma in normal settings? Econom-

ics vs Health becomes evidence in terms of moral intuition in times of

pandemics.

This fact is very reassuring about the human pragmatic capacity

to develop solidarity, above the logic of distributive justice and the

utility level associated with it.

In Amartya Sen's terms, “Quality of life should come before

Qualys in order to maintain capabilities and functioning.”33 Life expec-

tancy after the pandemic in opulent societies, in terms of future

opportunities and capabilities, are precisely not invariant. They are

related to the well-being and capabilities of surviving individuals. Dalys

is a measure of the burden of diseases, which combines time lived

with a disability and the time lost due to premature mortality, esti-

mated with respect to a standard age-dependent life expectancy. So,

the notion of time lost because of the burden of a disease is very

important to correct the abstract notion of fairness.

This leads me to have a critical gaze on a notion of fairness based

on mere rationality.

3.2.1 | Rationality and consistency

In terms of rationality, the main rule of public health ethics is that

whatever rule is chosen must be applied consistently. Reasonable life

expectancy does not consider the dimension of narrative or care

ethics. Is it fair, can it be justified? For instance, young vs old, and the

equal value of life. One of the main issues of triage is the discrimina-

tion based on age. When do we begin to count the value of life? Is a

foetus more important than a teenager? The idea of withdrawing

treatment in a situation of scarce resources, in order to provide a res-

pirator to a younger person for instance, may reach consensus in

times of war, but here the metaphor of war is certainly not appropri-

ate. This pandemic emphasizes mostly a bad governing of resources

and not a lack of resources in the long term. The lack of anticipation

cannot justify withdrawing treatment. It would be unfair.

In a utilitarian model, scarce resources go first to efficient

patients. What do we lose in such a simplistic model? Should we pro-

vide care only to those who have instrumental value? This should be a

societal choice, which goes far beyond medical ethics and raises true

biopolitical dilemmas of distributive justice. Do we want to survive in

a society of care, or in a mere society of efficiency? We have known

this situation in Africa for access to drugs during the HIV/AIDS epi-

demic. Drugs were so scarce that medical doctors had access priority,

but then nothing was left for the patients. The efficiency model can

thus lead to absurd decisions, if no good decisions can be made to

resolve the dilemma.

3.2.2 | Rationing policies and the limit of their rationality

Is a pandemic the appropriate moment to erase the plurality of judge-

ments and stop weighing each particular case in the name of urgency?

The risk of non-transparent rules of experts is to lose the confidence

of the public. Real time decisions are certainly harder than applying

efficiency rules. We should make room to moral intuition in entering

the framework of decision that leads to adapt the rules in context.

Should ethicists then help apply guidelines or assist with rationalizing

decisions? I doubt it. It would mean to transfer the responsibility from

the patient or his/her family to other efficiency bodies. I would sug-

gest avoiding these real and false dilemmas to prevent the scarcity of

medical resources by collaborating in solidarity with those who are

still handling the matters, the medical doctors themselves.

Paradoxically, this pandemic has isolated half of humanity. It

reminds us first that we are all mortals, and that is what makes us

equals. Secondly, solidarity is the main ethical principle to escape from

false dilemmas. What is a false dilemma? It questions rational evi-

dence in the face of moral intuition. It is interesting to note that no

regulation of triage rules has been adopted internationally, which rein-

forces the decision-making dimension associated with the survival

and the preservation of people's abilities to survive. It could simply

mean that it is a matter of isolating patients at risk of dying or losing

724 BUSTAN ET AL.

their motor or cognitive abilities, if they are not treated, as an arbitrary

priority of these rules, or at least their relativity and adaptability.

These reflections force us to redefine the fairness models intro-

duced in this rationalizing, and to rethink a model of public health

founded not only on data driven medicine, but on deep and responsi-

ble democracy.

Can we really talk about scarcity, in our societies of abundance,

or is it more linked to ineffective management of priorities for the

social good, or to inadequate assets management?

The question will be why, and many speakers in the public debate

have stressed the unpreparedness of most states. It will also be neces-

sary to ask in what healthcare model this unpreparedness has been

possible, to clearly determine the responsibilities shared among the

different actors. We talk in peace time about the prioritization of care,

but some rulers preferred to talk about war, a term used to justify all

ethical transgressions. The wording of scarcity conditions is not

acceptable. It is necessary to give common reasons to all caregivers as

well as to the patients and their loved ones.

The procedural decision grids exist, but they do not free the med-

ical doctors from the difficult freedom of personal responsibility in the

heat of the moment. These tools are necessarily incomplete and

therefore do not exist, because a clinician will always have to use his

ethical imagination to practice a coherent care, adapted to any con-

text and to a diversity of needs in terms of gender, race, or class, hav-

ing fairness as its main horizon.

Indeed, if these decision-making grids are tools that have some

effectiveness in the emergency, we must not overlook the after-effect

of these decisions on the doctors and nurses in the aftermath of

pandemics.

Prioritization is a societal choice that makes us all co-responsible.

The main issue remains prevention, which can avoid both lockdown

and tracking, and foster collective intelligence instead of infantiliza-

tion. Fairness is thus more than equality because it is sensible to plural

forms of vulnerability, while always aiming at the recovery of capabili-

ties for each person. Fairness is a plastic notion that implies the articu-

lation of care and justice.

4 | THIRD ETHICAL MEDICAL DILEMMA: DIGNITY

Does the need for increased awareness of public harm in a pandemic

justify impinging on patients' rights to bodily and personal dignity

and privacy?

4.1 | Dignity: Laure Madé, Nurse

Laure Madé (FRANCE) is a practicing COVID-19 Nurse at Hospital

Bichat, Paris, and Epidemiologist. Trained as a nurse in France, she com-

pleted the MSc in Epidemiology at the London School of Hygiene and

Tropical Medicine. She has been working on emerging infectious diseases

at Institut Pasteur.

I worked as a nurse in a COVID-19 ward in a French hospital in Paris

during the COVID-19 outbreak. The Bichat hospital is a referral hospital

for the treatment of emerging infectious diseases and a leading player for

the management of epidemic and biological hazards. During this unprece-

dented sanitary crisis, I witnessed numerous situations where health pro-

fessionals faced ethical dilemmas in human lives. After fighting tirelessly

against COVID-19 in France and overseas, I am still wondering whether

we can effectively control this outbreak while treating both patients and

the deceased with sensitivity, dignity, and respect.

In early April 2020, we were overwhelmed with the media cov-

erage on COVID-19. Many patients in an artificial coma were

exposed to French TV news as an attempt to raise awareness of the

threat of the unseen virus. In France, patients have to give consent

to appear on TV, but this is not mandatory if they are unconscious

as long as their face is covered. According to French law, the con-

sent of the people filmed is not required when the image is illustrat-

ing a topical subject. I did not experience this specific situation as I

was not working in the ICU, but I know some colleagues who felt

uncomfortable dealing with this specific situation and found it par-

ticularly inappropriate.

We experienced other dilemmas during the outbreak that went

beyond the media issue. What called my attention was how the

patients were extremely terrified by being infected with COVID-19. It

was indeed a new disease, very contagious with no proven treatment

available. Every single health worker was entirely covered up with

protective personal equipment: mask, gloves, gown, cap, glasses, and

so on. All doctors looked similar and patients could not differentiate

the many different nurses. This was a very stressful environment for

them. On top of that, we could not enter the COVID-19 rooms as

often as we wanted because we had to restrict our visits to limit the

risk of contamination. Relatives and close friends were denied access

for the same reason. In many rooms, COVID-19 related news was dis-

played repeatedly on TV screens leaving these patients with feelings

of loneliness, isolation, and fear. They were fortunately allowed to

keep their phones with them and could, therefore, maintain a much-

needed virtual contact with their loved ones. Despite these chal-

lenges, we tried our best to reassure them, and we made sure to pro-

vide emotional support every time we interacted with them.

The fact that our country was unevenly affected meant that a lot

of human and material resources were allocated to the most affected

areas. We did not experience a lack of staff, as hundreds of health

workers came to help from different cities, including medical and

nursing students. We were lucky to have at least one nurse for every

four patients in the non-ICU. However, we had severe issues

accessing personal protective equipment, especially appropriate

masks.34 This was a major challenge because we really wanted to give

the best care possible to our patients, but we also needed to feel safe

and protected ourselves. We had an incredibly high number of sick

colleagues, and we even had to resuscitate one of them who was hos-

pitalized in our ward. The feeling of fear was shared by everyone,

patients, and health workers alike.

Finally, COVID-19 protocols in place at the time also impacted

the way we handled the deceased bodies. Whenever we had a death

BUSTAN ET AL. 725

in our ward, which was unfortunately frequent during the outbreak,

we had to put the body entirely naked in the mortuary bag.35 This sit-

uation was distressful as we felt that we could not honour the

deceased properly. We were not allowed to dress them up and the

family was not allowed to view them. The rationale behind this recom-

mendation was to limit the risk of contamination after death even

though no evidence of transmission of SARS-CoV-2 through the han-

dling of the body of a deceased person has been documented. The

French High Council for Public Health amended its recommendations

end of March36 when the risk of infectious transmission from bodies

was proven to be lower than for living patients. They allowed the

viewing of the body for mourners immediately and the presentation

of the body to the family. However, these less stringent guidelines did

not reach our hospital.

During this pandemic, health professionals faced ethical dilemma

situations more frequently due to various factors such as time

required for the healthcare system to adjust to the crisis (hiring extra

staff, set up of space/beds for patients, procurement of appropriate

protective equipment, etc.), intensive workload among others, and

potentially impacting the standard of care. But despite this stressful

period, our intent was always to keep humanity in the care provided.

Finding the right balance between the need to control the infection

and the respect of the patient's and families' rights is a difficult exer-

cise, but the dignity of the patients and the deceased should be

respected and must remain a priority, even in such chaotic time.

4.2 | Dignity: Rita Charon, Ethicist, Narrative Medicine

Rita Charon, MD, PhD (USA), is Chair of Medical Humanities and Ethics

at Columbia University. A general internist and literary scholar, she is the

founder of the discipline of narrative medicine. With an MD from Har-

vard, PhD in English from Columbia, she conducts research on the impact

of humanities in medicine and is the author or co-author of four books on

narrative medicine.

I want to thank the Columbia Global Centers in Paris, Amman,

Nairobi, and Istanbul for sponsoring this symposium and insisting that

the pandemic is an international pandemic. The more we can remem-

ber that we are not isolated and not solving our own parochial prob-

lems, the more effective and just will be the outcomes of our actions.

Ms. Madé has just given us major testimony not only about the

privacy and dignity of the patient's body but also about the privacy

and dignity of the other bodies in the room. I am very impressed with

what she just did. Here is why. I am a general internist and a literary

scholar. I study narratology – how stories are told and understood and

received and what happens in the world by virtue of the accounts we

give to one another. A group of humanities scholars and clinicians at

Columbia University developed the field of narrative medicine in the

early 2000s.37 We knew that the humanities, especially literary stud-

ies and creative arts, could make powerful contributions to health care

practices and concepts not just through the content of great novels

like Magic Mountain and Frankenstein but by harnessing literary and

aesthetic concepts of representation, close reading, inter-subjectivity,

temporality, and embodiment for use in the clinic. Our work over the

years has demonstrated that narrative skills can improve clinical care

in many ways, including expanding clinicians' knowledge of individual

patients, strengthening teamwork, and reducing burnout.383940 It is

through the many-focaled lenses of narrative medicine that I have

approached this essay's effort to reflect on issues of privacy and dig-

nity in the time of COVID.

The impressive part of what Ms. Madé just did, speaking from a

narrative medicine perspective, was to nest the clinical dilemma of the

nurses and physicians within the more encompassing clinical dilemma

of the patient, allowing her listeners or readers to consider the

embodied landscape of care as a whole. She started with the privacy

of patients' bodies before and after death, outlining France's policies

of privacy and confidentiality accorded to patients and their surro-

gates. Then she seamlessly drew in the opposite face of privacy of the

clinicians' bodies – not that they are unduly exposed but that they are

unduly concealed in their personal protective equipment to the point

that patients and families cannot distinguish among their encapsulated

bodies. Through that deft narrative turn, Ms. Madé encourages us to

consider the patient and the clinician as a unit – one sick, perhaps

dying, the other risking sickness, perhaps death in the effort to care

for the patient. The fear for the clinicians' own lives and the fear for

their colleagues' lives cannot be separated from their fear for the lives

of their patients, levelling the typical hierarchy by the mournful, terri-

fying facts of this crisis.

We know that physicians in particular hold strict taboos regarding

their physicality within their professional actions. Usually, the body of

the physician does not enter the picture of medical practice. Touching

of patients is strictly governed (although such rules do not prevent

the occurrence of sexual assault on patients by their doctors). Gruel-

ling medical training drills the importance – and heroic implications –

for doctors to do without sleep and food and ordinary physical self-

care. It is not a surprise to learn that doctors are found to have greater

levels of anxiety about death than non-doctors but find powerful

ways to repress such fears.41 So Ms. Madé's testimony gives us an

important and rarely articulated aspect of not just the ethical

dilemmas of this crisis but a profound paradox of health care in which

some who work very closely with dying persons are perhaps ill-

prepared to deal with their own and others' mortality.

Doctors' fear of death notwithstanding, Ms. Madé's testimony

emphasizes the collective nature of our ethical responses to this

plague. Moral philosopher Charles Taylor situates his understanding

of personhood within the collective: “One is a self only among other

selves. A self can never be described without reference to those who

surround it… A self exists only within what I call ‘webs of inter-

locution’.”42 Framed by Taylor's recognition of our webs of meaning-

making, I will emphasize in the rest of this essay those relational, cul-

tural sources of the moral compass that governs the actions of any

one of us. Like literature itself with its invisible and necessary con-

gress between writer and narrator, narrator and reader, and reader

and character, our inner lives and our consequential outward actions

are influenced by and opened up by our inter-subjective contact with

726 BUSTAN ET AL.

the other. With our patients and clinical colleagues, we are fellow

mortals, siblings under the planetary and even cosmic horizons that

locate us in time, space, and being.

Questions about the privacy of patients' bodies are old, old

questions. Read the Journal of the Plague Year of Defoe and

Camus's Dr Rieux in La Peste again if you have not done so

recently to see how these questions of privacy, ownership, and

custody of patients' bodies dead and alive have been with us in all

the plagues of the 16th and 17th centuries and beyond.4344

Remember too, and this has been mentioned in earlier testimonies

in this symposium, that the hospital is a strange insoluble mix of

public and private. Illness itself is a subjective experience, a mean-

ingful experience that happens within the context of an individual

life as it is at the same time a public situation where some infor-

mal or professional group has to do the best they can to care for

and protect others. The public functions, however, risk precluding

attention to the individual's subjectivity; as phenomenologist Hans-

Georg Gadamer asked, “Can science be connected once again with

our own lived experience, or must the experience of one's own

individuality be lost irrevocably in the context of modern data

banks and new technology?”45

It was in the 18th and 19th centuries that the hospital became,

in the works of Foucault anyway, a place not where persons were

cared for but the place where physicians and scientists were able to

study and objectify their human bodies.46 Physician and philoso-

pher Mark Sullivan observes that “[i]n the new secular hospital

[of the 18th and 19th centuries] organized by disease categories,

the patient's body became the object of scientific study and the

focus of clinical medical efforts. Patients with chronic illness that

could not be treated successfully within the hospital or clinic were

generally sent away.”47 The reductive efforts to study the heart,

the lungs, the kidneys so as to learn and not necessarily to be with

those who were suffering altered the nature of medicine indelibly

towards a time when hospitals needed public policies to protect

patients from medicine's intrusions and instrumental uses of the

bodies of others.

But it was not until 1914 when Benjamin Cardozo wrote his deci-

sion in Schloendorff v. Society of New York Hospital that we had a

firm legal platform, at least in the US, to say the patient's body

belongs to the patient. The plaintiff had given permission for an exam-

ination under anaesthesia, but while the patient was anaesthetised,

the surgeon removed a tumour from the abdomen. Cardozo's judge-

ment was very clear. If a surgeon were to operate on a patient with-

out their consent, the surgeon would be liable to charges of criminal

assault.

With that rather sordid history as a background to this ques-

tions of privacy and dignity of patient's bodies in our hospitals, let

me turn to the traditions and schools of thought that were not

available to Defoe or Rieux in their prior very similar plagues and

that now might help to guide us towards respectful and ethical care

of patients in this time of COVID. Professor Bustan referred to the

work of phenomenologist Emmanuel Levinas in the context of the

subjectivities and inter-subjectivities of clinical care. The

phenomenological traditions within continental philosophy are

poised to articulate the peculiar dilemmas of illness and embodi-

ment – how individuals find themselves within the world through

the sensations and affordances of the physical body and how one

embodied person is recognized and called into being by the fact of

another embodied person.48 The body is the avenue through which

the self lives in the world. Without our bodies, we are not in the

world. Through our perception, sensation, and motility, we are able

to not just address but to come into contact and to confront the

real, whatever the real might mean. Without the body, we would be

left only with our own imaginary representations of what we might

intimate is out there.

Situations of health care, especially the hospital during a time of

plague, poignantly enact the dramas of the body and the self that Hei-

degger, Husserl, Merleau-Ponty, and their followers so deeply investi-

gated. Such contemporary phenomenologists as Drew Leder and Havi

Carel continue the work of phenomenology by examining questions

of social justice – imprisonment and maltreatment of animals – and

the plight of individual patients whose serious and sudden illnesses

derail their ongoing lives.4950

When I discuss the body of the patient, I do not invoke the Carte-

sian assertion that one can think of one's body as if disengaged from

or outside of it but, in Gadamer's words, of “the absolute inseparabil-

ity of the living body and life itself” (45; p. 71). And so it is that I partic-

ularly appreciate Ms. Madé's comments on dignity, coming from the

perspective of the nurse, that the body of the clinician as well as the

body of the patient is involved in these clinical questions. More than

medicine, nursing has been influenced by and has been the source of

care ethics and feminist ethics formulations that bear on our question.

The ethics of care, as proposed by Carol Gilligan in the 1980s and

continued by Nel Noddings and Joan Tronto, among many others

since then, focus on the relationship aspects of care.515253 From the

perspectives of care ethics, clinicians must be present themselves in

order for care to be ethically and clinically effective – present not just

in their cognitive and diagnostic capacities but in their moral, values-

based, and even physical incarnations in the orbit of the patient. Such

an ethics is a highly “costly” personal one, shifting the notions of duty

from disengagement to engagement. I believe this ethical perspective

clarifies some aspects of the dilemma we are faced with here. As one

follows the literature in the ethics of care and feminist bioethics, one

sees expansion beyond its initial focus on the perspectives of women

in health care towards non-gendered formulations of relational moral

visions, spreading from health care and education to inter-sectional,

global, political, and economic issues.54

At their cores, the feminist approaches in bioethics and care

ethics formulations seat the personal commitment of the caregiver –

family, teacher, health care provider, legislative representative, policy

maker – to address both the impersonal and personal dimensions of

the situation and its ethical calculus. The “address” is one-to-one, with

the one who is cared for – in whatever situation – and the one giving

the care as partners in the outcome. In our COVID setting, the

patient's body is in the clinician's hands. The patient's body has been

entrusted to this clinician who is present in her own body, however

BUSTAN ET AL. 727

protected or unprotected from the physical and existential contact

she may be.

I conclude this essay by thinking back to our opening case, that

of the cameras in the ICU taking images from the bed of a dying

patient to broadcast those images into the public media. However

protected such photojournalism might be by France's equivalent of

the US freedom of speech laws and however allowed such

photographing may be by the consent of surrogates, it seems to me

like a greedy gesture on the part of the media to take and display

what they think will be most shocking and the most potentially

“viral” of images. I wish the photographers were more skilled than

that. I wish they could capture perhaps less violent and intrusive but

perhaps more telling images. We all probably remember the Holo-

caust photographs of the pile of children's shoes that most spoke to

the horror of that genocide. So my closing request is a request for

nuance instead of flamboyance, depth instead of shock. What we

have to endure in the pandemic requires our capacity to see in great,

great detail and delicacy all that unfolds, to not be catapulted to fac-

ile and false conclusions but to take the measure of the complexity

of the time and the need for our utmost discretion in learning and

teaching its lessons.

5 | FOURTH ETHICAL MEDICAL DILEMMA: HONOURING DEATH

Does public interest in social distancing outweigh the patient's right

not to die alone and the family's right to be with their dying relative?

5.1 | Honouring death: Meinhard Kritzinger, Clinician

Meinhard Kritzinger, MD ICU-Anaesthesia (Italy), is a specialist in anaes-

thesia and intensive care with diploma in tropical medicine and public

health. He has trained in Austria, South Africa, Italy, America, and in sev-

eral war zones working for MSF-Italy.

I am a consultant in Intensive Care Medicine and Anaesthesia

working and living in South Tyrol, the northern most Italian province

bordering Austria. We serve a population of 500 000 people with one

large and four smaller hospitals, all with ICU facilities. The experiences

I will recount are based partly on my own experiences and experi-

ences of fellow doctors working in the wards.

The 1990s was the last time that a special Italian law for infec-

tious diseases was applied for the then new “AIDS epidemic.” When

HIV patients were admitted to hospital, they had to stay in a newly

constructed unit, which had negative pressure isolation rooms and

closed doors. The rooms had glass panels facing balconies and the vis-

itors could see their relatives through the glass window.55

Since there were no real therapeutic options at this time, those

patients did not have any contact with relatives or the outside world.

Their families could only see them from the balconies through a

closed and locked glass window. As knowledge about this disease

improved, this inhumane practice was abandoned. Little did we know

that 30 years later, this practice was to be reintroduced.

On 31 January 2020, a state of emergency was declared and a

COVID task force, introduced by the Italian Ministry of Health, was

created to handle the health emergency crisis and to govern all clinical

decisions.56 End of February 2020 saw the beginning of a widespread

lockdown following the disastrous spreading of the disease in the

Province of Bergamo, situated 2 hours south of our hospital. There

were dramatic pictures from the overflowing emergency departments

and ICUs. The first cases in South Tyrol were diagnosed at the begin-

ning of March with the peak around middle of April.57

In the subsequent weeks, the number of ICU beds was

increased from 25 to 60. This was achieved by converting operation

theatres to ICUs, and normal wards were converted to COVID only

wards. Triage units were created and doctors from other depart-

ments such as dermatology, urology or ophthalmology found them-

selves in charge of newly admitted patients with almost daily

differing case definitions and treatment protocols. Diagnostic path-

ways and responsibilities changed throughout the emergency, and

doctors who never had seen a patient die under their care, had to

face dying patients every day.

By the beginning of April, at the peak of the epidemic, sick

patients were flown out to Germany and Austria. The daily death

count reached 10 patients a day with 234 patients admitted to differ-

ent hospitals in the region.58

When caring for terminal patients in ICU we would normally

invite family members to spend the last hours with their loved ones.

Despite strict visitor regulations of only one close family member per

patient and only close family, in such situations, makeshift rooms were

created with privacy screens, so that family could accompany their

loved one.

In the normal wards, family would be given ample space and

possibility to talk to nurses and doctors while staying with the

dying patient. Once the death had occurred, the corpse would be

brought to the hospital chapel, where the deceased would be

dressed and rested for 24 hours. This allows friends and family

spend some time in prayer with the deceased since it is not cus-

tomary to display the deceased in an open cask at the funeral in

our region. The next day, the mortician would remove the body

for the funeral, which takes place after a couple of days. Crema-

tion is the exception since people like to see a coffin at the funeral

and not an urn.

During the COVID epidemic, a “no visitor” policy was strictly

enforced by the task force for COVID but also non-COVID patients.

Doctors shifts were adjusted on daily basis as the workload dramati-

cally increased. Changing diagnostic pathways and triage options left

patients on the ward with a different doctor being responsible for

them almost daily. Dermatologists and ophthalmologists, who had

never cared for dying patients, let alone discuss terminal care faced

difficult situations, as they were never trained in this area. Daily

increasing patient numbers, uncertainty and fear to get infected

decreased the time, that staff interacted with family and patients to

the absolute minimum. Personal protection equipment with mask,

728 BUSTAN ET AL.

gown and a triple layer of gloves did contribute to reduce any per-

sonal contact.

The majority of the COVID patients were elderly and they had

to stay in an isolation room, deprived of human contact during

their final hours. In contrast to people dying of other diseases,

patients with COVID sometimes were lucid until the very end.

They were well aware that they were suffering from a disease

where no cure was known and they were about to die from

it. Nursing staff even at the deathbed was reduced to a minimum

for fear of contagion.

Not only did the patient have to die alone, sadly even family

members were also left on their own. They could not leave their

house as lockdown prohibited all movements so they could not even

meet to mourn.

In addition, frequently an elderly spouse was left alone at home

confused and startled by having to stay in quarantine, with their part-

ner taken in an ambulance with people dressed in gowns and masks,

only to have him or her back as ashes in an urn a week later.

Once the death had occurred, the corpses were undressed and

soaked with disinfectant and zipped into a plastic body bag. There

was no way any relative could see the deceased, nor was it possible

to dress the body with clothing sent from the family.

Once the ashes were returned to the household, funerals were

limited to 10 people attending and lasted for a couple of

minutes only.

To alleviate their patients' final hours, the nursing staff would

sometimes stick printouts of photos of the family onto the surround-

ing walls, so that the patient could picture the presence of their loved

ones in the room. In one case, a little dog was smuggled into the isola-

tion unit for a quick farewell as this was the patient's last wish. In

other cases, the relatives could see their loved ones through a glass

window standing on the balcony of the isolation unit. Even though

the regulations were uniform in the whole province, they were only

strictly adhered to in the main hospital. In the smaller hospitals, one

family member with protective clothing could sit with their dying

relative.

The provincial ethical committee was aware of this problem and

on the 1st of April, they wrote an urgent letter (attached in Appendix)

to the task force regarding the increasing loneliness of the patients,

the lack of patient's involvement in therapeutic decisions and access

to terminal care (Irmgard Spiess RN, Alessandro Felici MD, e-mail

communication, April 2020). Unfortunately, this letter was never pub-

lished nor did the task force respond to this letter.

It was as if regarding the dilemma of honouring death, the epi-

demic had abolished patient's rights.

5.2 | Honouring death: Jeremy R. Simon, Philosopher and Clinician

Jeremy Rosenbaum Simon, MD, PhD (USA), is an emergency physician,

medical ethicist and philosopher of medicine on the faculty of Columbia

University. He is a member of several local and national ethics

committees and chair of the International Philosophy of Medicine Round-

table, the leading organization of philosophers of medicine.

The question at hand is Honouring Death: Does the public's inter-

est in social distancing outweigh the patient's right not to die alone

and the family's right to be with their dying relative? The issues raised

by the situation Dr Kritzinger describes in this regard need to be ethi-

cally analysed on two levels. The first is the question of the nature of

the rights under consideration, and the second is the question of the

nature of rights in general at this time of public health crisis.

The dilemma as posed presupposes two different but related

rights. That of the patient not to die alone, bereft of their family, and

that of the family members not to be separated from their dying loved

one. Of course it would be difficult to honour one of these rights

without honouring the other, but with two rights in play, there are

more arguments to be made in favour of respecting them.

One might think that right of the dying person is the more power-

ful right here. The dying are often given special consideration due to

their status, even those being executed (last meal, cigarette, blindfold).

The right to have comfort in dying, which ordinarily is not problematic,

would seem to be something patients are entitled to. And certainly on

some level they are. Being alone in a stressful time is frightening, and

patients have a right not to be subject to undue fear. But if we focus

on the right to visitors particularly of the dying, and not all patients,

this right may seem to be somewhat reduced, especially in the current

situation. First, patients can only be considered dying for a brief part

of their hospitalization, when it becomes clear that they cannot be

kept alive much longer, or when life support is being removed. Thus,

any harm that may be caused by violating this right is mitigated by the

relatively short time during which the right is being violated and the

patients are exposed to unnecessary stress. Second, and this is rele-

vant particularly to COVID, a large percentage of the patients who die

are intubated and sedated at that point. Even to the extent that

patients in general may have a right not to die alone, it is not clear that

this right extents to unconscious patients. This is not to say that it

does not. It may be an intrinsic matter of human dignity not to be

abandoned at the time of death. But, even given that, hospitalized

patients are not abandoned; they are not even without those who

care for them. They are just without those with whom they have

long-term bonds of affection. Note that the second point is of limited

applicability, since many patients also die without being intubated. In

those cases, the other arguments presented here will have to suffice.

What then of the family? They are conscious, and the harm done

to them could potentially reverberate for years to come. And familial

rights are certainly recognized in medical ethics, at least when it

comes to surrogate decision-making. Perhaps it is their right that is

stronger. But, whether or not it is stronger, it cannot be absolute. For,

there is a very simple case where a hospital may, and must, keep out

such a visitor – at the patient's request. Likewise, if the family member

has behaved badly, even to the staff, during prior visits. This is of

course not what is happening here. However, it does show that the

family's right to visit is defeasible.

These, then, are the rights in question. What I have shown thus

far is not that they do not exist here, just that they may not be as solid

BUSTAN ET AL. 729

as they at first appear. The next question is, how should we approach

rights during the time of a pandemic. Traditionally, ethical analyses

can be broken into two types, consequentialist, or outcomes-based,

and deontological, or rules-based. A consequentialist, or utilitarian,

decides whether an action is right based on the outcome that results

– did the action create more good in the world than the alternative? A

rules-based ethicist sees whether an action follows certain ethical

rules – thou shall and thou shalt not – without looking to see what

the impact is of following the rules in a given case. But that dichotomy

is a bit misplaced here. Even a deontologist, a rules-based ethicist,

may have rules that take into account outside impacts. So to have a

specifically rules-based argument that visits to the dying is a right at

this time, one would have to have a rule that implied that not only

was it a right, but that it was a more or less absolute, first-tier right

that no amount of bad consequences could override. I have trouble

seeing this in general, and certainly in light of the arguments made

earlier.

That was a bit quick I am afraid. The main point was just to argue

that we need to analyse the ethics of our dilemma, as to whether the

public's interest in social distancing outweighs the patient's right not

to die alone and the family's right to be with their dying relative, based

on the real world consequences of taking one side or the other, and

not based on abstract, timeless rules. Therefore, we are left consider-

ing the consequences of allowing or not allowing visits to dying

patients during the COVID pandemic.

Ultimately, answering this question requires objective data, or at

least assumptions about such data, about the risk to visitors of acquir-

ing COVID (and then also perhaps spreading it to others) and the risk

of their already having COVID and spreading it within the hospital.

This is information that I do not have. It also depends on the organiza-

tion of the ICUs and the potential for disruption visitors could create.

I know that at our hospital at Columbia, operating rooms have been

converted to ICUs, so that in addition to the MICU, or medical ICU,

and SICU, or surgical intensive care unit, etc., we also now have an

new beast called the ORICU, for operating room intensive care unit.

These do not necessarily have the same space and barriers that nor-

mal intensive care units have, and may have less room for extra peo-

ple in them.

How could one use this information to make decisions here? Cer-

tainly, if wearing a simple mask is enough to prevent getting or

spreading infection, then the danger to the visitor, the other patients,

and to society at large is not a real issue, and is not a reason to forbid

visitors. Of course, we do not know this to be the case, and so this

danger must be considered. Given the degree of disruption to every-

thing else that our assessment of the risk from COVID is causing, it is

not unreasonable (though not necessary) to take a conservative

approach here too. Note that the risk to the visitor is only part of the

issue here, and so we cannot simply leave it up to them to take on the

risk or not.

But even if the risk of virus transmission is small, the disrup-

tion to the intensive care units, and especially the makeshift ones,

could be real. And I think that there is an argument to be made

that if some intensive care units cannot have visitors, none should.

At the very least having different policies for different units would

lead to arbitrary distinctions between patients, and at the worst it

could lead to placing patients in preferred intensive care units for

non-medical VIP (“Very Important Person”) reasons, which is cer-

tainly unjust.

Thus, I think that while keeping visitors away from dying patients

is certainly a bad thing, it is not an absolute wrong, and may indeed be

justified at times, perhaps even now. We broadly restrict rights during

public health emergencies, and the right to visits is not stronger than

many of these, and is perhaps weaker than some of the even more

fundamental rights, such as engaging in religious worship and com-

merce, that life under COVID has, of necessity, interfered with. None-

theless, if it is possible to have a safe, nuanced policy, with small

numbers of visitors to those patients who would benefit from it, this

is certainly desirable.

Any philosophical analysis of difficult human issues is in danger

of losing the human, even when the analysis is rooted in the real

world. Without pulling back from the somewhat difficult conclusions

I have presented, I would like to pair them with a quotation from

Rodrigo Marquez. Marquez is the son of the novelist Gabriel Garcia

Marquez, author of Love in the Time of Cholera, and the quotations

comes from a column he wrote as a “letter” to his late father,

describing the pandemic to him. He says: “It's not just death that fri-

ghtens us, but the circumstances. A final exit without goodbyes,

attended by strangers dressed as extraterrestrials, machines beeping

heartlessly, surrounded by others in similar situations, but far from

our people.”59

CONFLICT OF INTEREST

All authors declare no potential conflict of interest.

ORCID

Smadar Bustan https://orcid.org/0000-0002-9574-9289

ENDNOTE 1 I refer here to “superhomism,” as interpreted by Gramsci, depicting the

tendency to conceive of the individual affirmation as an “expansion of

the personality without moral constraints.”60 Originally, superhomism is

the concept of the Superman by Gabriele D'Annunzio and which has

been historically read through the lens of an autobiographical and intel-

lectual superhomism, whereby female characters fade into the back-

ground, often considered minor figures, either passive-ethereal helpers

or more active but negative antagonists, always bound to the male

protagonists.61

REFERENCES

1. McDougall R, Sheahan L, Ko D. Planning for and managing COVID-

19: ethical decision-making tool. https://mspgh.unimelb.edu.au/

centres-institutes/centre-for-health-equity/news-and-events/

planning-for-and-managing-covid-19-ethical-decision-making-tool.

2020. Accessed May 27, 2020.

2. Social Determinant of Health. WHO called to return to the Declara-

tion of Alma-Ata. https://www.who.int/social_determinants/tools/

multimedia/alma_ata/en/

3. World Health Organization. Coronavirus disease (COVID-19) PAN-

DEMIC, situation report https://www.who.int/docs/default-source/

730 BUSTAN ET AL.

coronaviruse/situation-reports/20200506covid-19-sitrep-107.pdf?

sfvrsn=159c3dc_2. Accessed May 6, 2020.

4. Italian Civil Protection Department. 2020. https://datastudio.google.

com/reporting/91350339-2c97-49b5-92b8-965996530f00/page/

RdlHB. Accessed May 10, 2020.

5. Corriere Dela Sera. The real death tool for COVID-19 is at least 4 time

the official numbers. https://www.corriere.it/politica/20_marzo_26/

the-real-death-toll-for-covid-19-is-at-least-4-times-the-official-

numbers-b5af0edc-6eeb-11ea-925b-a0c3cdbe1130.shtml. Accessed

May 27, 2020.

6. Wu Z, MCGoogan JM. Characteristics of and important lessons from

the coronavirus disease 2019 (COVID-19) outbreak in China. JAMA.

2020;323:1239-1242.

7. Nacoti M, Ciocca A, Giupponi A, et al. At the epicenter of the Covid-

19 pandemic and humanitarian crises in Italy: changing perspectives

on preparation and mitigation. New Engl J Med. 2020;1(2):1–5. https://catalyst.nejm.org/doi/full/10.1056/CAT.20.0080.

8. Hillic I. Medical Nemesis. Boroli Editore: Milano; 2005.

9. Arendt H. Eichmann in Jerusalem. The New Yorker, Feb 16, 1963.

10. Derek CA. Optimizing the trade-off between learning and doing in

pandemic. JAMA. 2020;30:1895. https://doi.org/10.1001/jama.2020.

4984.

11. Al B, Kohane IS. Big data and machine learning in health care. JAMA.

2018;319:1317-1318.

12. Arendt H. The Life of the Mind. New York: Harcourt Brace Jovanovich;

1978.

13. Mill JS, Bentham J. Utilitarianism and Other Essays. UK: Penguin; 1987.

14. Aristotle, Sachs J. Aristotle: Nicomachean Ethics. Newburyport, MA:

Focus Publishing; 2002.

15. Levinas E. On the trail of the other. Philos Today. 1966;10(1):41.

16. Bustan S. L'ambiguïté d'une éthique de la souffrance dans la pensée

française contemporaine. Maurice Blanchot et la Philosophie, suivi de

trois articles de Maurice Blanchot. Paris: Presses Universitaires de Paris

Ouest; 2009:179-198.

17. Bustan S. Suffering–a premise for the social and political thought.

Zeitschrift für Kritische Sozialtheorie Und Philosophie. 2016;3(2):

379-417.

18. Bustan S. From intellectualism to ethics – Emmanuel Levinas and the

phenomenology of Edmund Husserl/De l'intellectualisme à l'éthique

– Emmanuel Levinas et la phénoménologie d'Edmund Husserl. Brus-

sels: Ousia. 2014;350-363:376-406.

19. Levinas E. On the trail of the other. Philos Today. 1966;10(1):41.

20. Levinas E, Lingis A. Otherwise than Being or beyond Essence. The

Hague: Nijhoff; 1981:77.

21. Mkhwanazi E. To be human is to be responsible for the other: a criti-

cal analysis of Levinas' conception of responsibility. Phronimon. 2013;

14(1):133-149.

22. Levinas E, Lingis A. Otherwise than Being or beyond Essence. The

Hague: Nijhoff; 1981:101.

23. Levinas E, Lingis A. Totality and Infinity. An Essay on Exteriority. Vol

56. Dordrecht: Kluwer Academic Publishers; 1969:85, 89.

24. Levinas E, Lingis A. Otherwise than Being or Beyond Essence. The

Hague: Nijhoff; 1981:11-12.

25. Centers for Disease Control and Prevention. Interim guidance for

healthcare facilities: Preparing for community transmission of

COVID-19 in the United States. https://www.cdc.gov/coronavirus/

2019-ncov/healthcare-facilities/guidance-hcf.html. 2020. Accessed

April 14, 2020.

26. Centers for Medicare & Medicaid Services. Recommendations on

Adult Elective Surgeries, Non-Essential Medical, Surgical, and Dental

Procedures During COVID-19 Response. https://www.cms.gov/

newsroom/press-releases/cms-releases-recommendations-adult-

elective-surgeries-non-essential-medical-surgical-and-dental. 2020.

Accessed April 14, 2020.

27. Fact Sheet. Family Health Care Decisions Act & HIV/AIDS. https://

www.health.ny.gov/diseases/aids/providers/regulations/fhcda/ai_

fact_sheet.htm. 2020. Accessed on May 25, 2020.

28. Goldstein J, Rothfeld M, Weiser B. Patient Has Virus and Serious

Cancer. Should Doctors Withhold Ventilator? https://www.nytimes.

com/2020/04/01/nyregion/coronavirus-doctors-patients.html. 2020.

Accessed April 1, 2020.

29. New York State Task Force on Life and the Law. New York State

Department of Health. Ventilator Allocation Guidelines. https://

www.healthcare.ny.gov/regulations/task_force/reports_publications/

docs/ventilator_guidelines.pdf. 2015. Accessed March 16, 2020.

30. Hick JL, Barbera JA, Kelen GD. Refining surge capacity: conventional,

contingency, and crisis capacity. Disaster Med Public Health Prep.

2009;3(2 suppl):S59-S67.

31. Kulish, N. A Life and Death Battle: 4 Days of Kidney Failure but No

Dialysis. https://www.nytimes.com/2020/05/01/health/coronavirus-

dialysis-death.html. Publihsed 2020. Accessed May 25, 2020.

32. New York Public Health Law 3080-3082. https://www.mlmic.com/

wp-content/uploads/2020/04/NYS-Article-30-D-of-the-Public-

Health-Law.pdf. 2020. Accessed May 25, 2020.

33. Sen A, Nussbaum M. The Quality of Life. Oxford: Clarendon Oxford

Press; 1993.

34. French High Council for Public Health. Opinion relating to the ratio-

nalization of the use of anti-splash surgical masks and FFP2 type

masks for health professionals in health establishments, in medico-social

establishments and cities during stage 3 phases of epidemics. https://

www.hcsp.fr/Explore.cgi/Telecharger?NomFichier=hcspa20200310_

corsarcovutidesmasparlesprodesan.pdf. Published March 10, 2020.

Accessed June 1, 2020

35. French High Council for Public Health. Opinion on the management of

the body of a patient with a probable or confirmed case of COVID-19.

https://hscp.fr/Explore.cgi/Telecharger?NomFichier=hcspa20200218_

corsarcovprienchaducordunpatdcd.pdf. Published March 24, 2020.

Accessed June 1, 2020

36. French High Council for Public Health. Opinion relating to the man-

agement of the body of a deceased patient infected with the SARS-

CoV-2 virus. https://hscp.fr/Explore.cgi/Telecharger?NomFichier=

hcspa20200324_cosacoprenchducodunpaco.pdf. Published February

18, 2020. Accessed June 1, 2020

37. Charon R, Das Gupta S, Hermann N, et al. The Principles and Prac-

tice of Narrative Medicine. New York: Oxford University Press;

2017.

38. Chou JC, Schepel IRM, Vo AT, Katepanovic S, Schaff PB. Patient co-

participation in narrative medicine curricula as a means of engaging

patients as partners in healthcare: a pilot study involving medical stu-

dents and patients living with HIV. J Med Humanit. 2020;41:1-17.

https://doi.org/10.1007/s10912-019-09604-7.

39. Sands S, Stanley P, Charon R. Pediatric narrative oncology: inter-

professional training to promote empathy, build teams, and prevent

burnout. J Support Oncol. 2008;6:307-312.

40. Winkel AF, Feldman N, Moss H, Jakalow H, Simon J, Blank S. Narra-

tive medicine workshops for obstetrics and gynecology residents and

association with burnout measures. Obstet Gynecol. 2016;128(suppl.

1):27S-33S.

41. Baider L, Wien S. Reality and fugues in physicians facing death: confron-

tation, coping, and adaptation at the bedside. Crit Rev Oncol Hematol.

2001;40:97-103. https://doi.org/10.1097/AOG.0000000000001619.

42. Taylor C. The Sources of the Self: The Making of Modern Identity. Cam-

bridge, MA: Harvard University Press; 1989:35-36.

43. Defoe D. Journal of a Plague Year. New York: Oxford University Press;

2009.

44. Camus A. La Peste. Paris, France: Gallimard; 1947.

45. Gadamer H-G. The Enigma of Health. Stanford, CA: Stanford Univer-

sity Press; 1996:71-72.

BUSTAN ET AL. 731

46. Foucault M. The Birth of the Clinic: An Archaeology of Medical Percep-

tion. New York: Pantheon Books; 1973.

47. Sullivan M. The Patient as Agent of Health and Health Care. New York:

Oxford University Press; 2017:165.

48. Levinas E. Totality and Infinity. Pittsburgh, PA: Duquesne University

Press; 1969.

49. Leder D. The Distressed Body: Rethinking Illness, Imprisonment, and

Healing. Chicago, IL: University of Chicago Press; 2016.

50. Carel H. Illness: The Cry of the Flesh. London: Routledge; 2013.

51. Gilligan C. In a Different Voice: Psychological Theory and

Women's Development. Cambridge, MA: Harvard University

Press; 1982.

52. Nodding N. Caring: A Feminine Approach to Ethics and Moral Education.

Berkeley, CA: University of California Press; 1986.

53. Tronto J. Caring Democracy: Markets, Equality, and Justice. New York:

New York University Press; 2013.

54. International Network on Feminist Approaches to Bioethics. https://

www.fabnet.org. Accessed May 25, 2020.

55. Il Ministro Della Sanita. Norme di protezione dal contagio professionale

da HIV nelle strutture sanitarie ed assistenziali pubbliche e private.

http://www.salute.gov.it/imgs/C_17_normativa_895_allegato.pdf. Pub-

lished October 8, 1990. Accessed May 25, 2020.

56. Il Consiglio Dei Ministri. Dichiarazione dello stato di emergenza in

conseguenza del rischio sanitario connesso all'insorgenza di patologie

derivanti da agenti virali trasmissibili. https://www.gazzettaufficiale.

it/eli/id/2020/02/01/20A00737/sg. Published January 31, 2020.

Accessed May 25, 2020.

57. Amministrazione Provincia di Bolzano. Dati attuali sul Coronavirus.

http://www.provincia.bz.it/sicurezza-protezione-civile/protezione-

civile/dati-attuali-sul-coronavirus.asp. Accessed March 25, 2020.

58. Amministrazione Provincia di Bolzano. Tutti i comunicati j Sezione j Amministrazione provinciale j Provincia autonoma di Bolzano - Alto Adige.

http://www.provincia.bz.it/news/it/news.asp?news_action=4&news_

article_id=637469. Published April 7, 2020. Accessed March 25, 2020.

59. Garcia, R. A letter to my father, Gabriel García Márquez New York

Times May 6, 2020. https://www.nytimes.com/2020/05/06/

opinion/coronavirus-garcia-marquez.html?searchResultPosition=1

60. De Nardis F, Loris C. Political crisis and social transformation in Anto-

nio Gramsci. Elements for a sociology of political praxis. Int J Humanit

Soc Sci. 2011;1(6):13-23.

61. Barisonzi M. Adultery and Hysteria in the Nineteenth-Century Novel:

The Case of Gabriele D'annunzio. UK: Troubador Publishing; 2019.

SUPPORTING INFORMATION

Additional supporting information may be found online in the

Supporting Information section at the end of this article.

How to cite this article: Bustan S, Nacoti M, Botbol-Baum M,

et al. COVID 19: Ethical dilemmas in human lives. J Eval Clin

Pract. 2021;27:716–732. https://doi.org/10.1111/jep.13453

732 BUSTAN ET AL.