As part of our reflection on the emergency we are experiencing, we want to focus on the ethical issues at stake. Therefore, we propose an interview with Professor Sandro Spinsanti, who has held the chair of Medical Ethics at the Faculty of Medicine of the Catholic University in Rome and Bioethics at the University of Florence, as well as the role of Director of the Department of Human Sciences at the Fatebenefratelli Hospital – Isola Tiberina (Rome) and the International Centre for Family Studies in Milan. He is founder and director of the Janus Institute for Medical Humanities and Healthcare Management. He founded and directed the magazine of Medical Humanities Janus. Medicine: culture, cultures.
We inform that the website Salute Internazionale hosts two other contributions by Professor Spinsanti on this issue, Ethics at the time of pandemic and The tragic choices of these days (both in Italian).
Q. The COVID-19 outbreak has brought to the forefront topics and reflections that not only concern the present moment, but deeply question our ideas about living in community, and perhaps living itself. What are, from your point of view, the main issues that have emerged?
SS. We often hear that the Coronavirus pandemic is bound to change the way we live. Someone has come to propose that, from now on, we should divide our time into B.C. and A.C., where C. does not stand for Christ but, precisely, for Coronavirus. Other choirs sing a different song: we will soon forget, everything will be back as before; this is what the epidemics of the past teach us. Is this just the classic division between optimists and pessimists?
We can come out of this alternative by saying that the consequences of the pandemic will be modulated by the narrative we will be able to make of it. A lot of narratives are already circulating. Some of them stand out for one trait: they are looking for culprits. The more markedly paranoid ones blame the “anointers” (researchers who let the virus escape, political conspirators, dark forces thirsty for power or money…); others point to institutions with censurable behaviour (the WHO, politicians and local administrators…). The common denominator of these attitudes is not to question themselves. Once the culprit has been found, one feels absolved. And perhaps justified, once the emergency is over, to continue as before.
On the opposite side, there are the narratives of those who trace the current suffering back to structural ailments from which we cannot call ourselves out, and which require a change of course. Perhaps the most powerful words in this sense were those of Pope Francis, spoken in a deserted St. Peter’s Square:
We thought we were healthy on a sick land.
We are the creators of this evil on earth; and this malaise we must heal, changing the way we live on earth: from ecology to social coexistence. This is the most challenging narrative to accept because it asks us to change the hierarchy of values and to live differently.
Q. What are, from your point of view, the main ethical issues faced at the health care level, and what the implications for the health care staff and the therapeutic relationship?
SS. I would summarise the main ethical topics in health care in a brutal question: are the acquisitions we have made in fifty years of bioethics still valid, or should we put them back in the museum of ideas? To use a provocative example, it is like a few decades after the American Civil War, someone proclaimed that severe social conditions forced the emancipation of slaves to be revoked. The change introduced by bioethics is obviously not comparable to the abolition of slavery, but it is still an epoch-making innovation in the cultural sphere. Thanks to bioethics, there has been a reversal of what had been taken for granted for centuries in the ethics of the care relationship. The Hippocratic model, which has been in force since ancient Greece, has been called into question in favour of another form of relationship between those who provide care and those who receive it. We can call it the shift from one-way ethics to three-way ethics. From the single principle: “The doctor must do the good of the patient, decided by the professional in science and conscience”, we have moved on to the three principles of the good of the patient (always valid!), plus respect for his/her autonomy, plus the demands of social justice.
The Chart of Medical Professionalism, proposed by the European Federation of Internal Medicine in 2002, at the dawn of the 21st century, made it explicit as a medical ethic for the new millennium. To the question what the doctor willing to practice good medicine should do, the answer referred to three principles: providing effective treatment (according to the traditional model of the good of the patient); respecting the patient as an autonomous person (involving him/her in decisions); guaranteeing all those who have the right and need the same opportunities for treatment, with fairness, without discrimination. It is a change that can be equated with a real paradigm shift, as sometimes happens in the history of science and cultural revolutions. In extreme synthesis, the three-dimensionality of good medicine has been presented by the Slow Medicine movement as a commitment to provide “sober, respectful and just” care. Good practice in the medical profession cannot be defined as one in which the health care professional is not concerned with promoting all three of these objectives.
Relying on this acquisition, the ISS consensus document on Narrative Medicine (June 2014) indicated narrative as
the fundamental tool to acquire, understand and integrate the different points of view of those involved in the disease and the care process. The aim is the construction of a personalised care path.
A cure made with the patient, not on him/her.
Returning to the question we started from: what happened during the pandemic to these three criteria to determine good medicine? We saw exemplary professionals dedicated to treating the sick, within the limits of their knowledge and available resources. But the participation of the suffering in decisions, thanks to information and consent, is as if it had evaporated. Not to mention the fate that has befallen the fair distribution of resources and the renunciation of discrimination. Proposals for the systematic exclusion of patients – too fragile, too old, too compromised – from life-saving procedures have emerged with brutality. The three-dimensional ethics that we have tried so hard to introduce into clinical practice risks appearing out of tune, in an emergency, like a recipe for gourmet food in times of famine. This is the biggest challenge, when the tsunami of the epidemic will have passed: to return to the triple-scan of treatment: sober, respectful and fair. And this may require accepting limits.
Q. Lockdown measures are still debated, dividing not only the experts but also the public opinion: the restriction of individual freedom is considered as an anti-democratic act. At the same time, an intense mass sentiment states that, with the COVID-19 emergency, the institutions are taking more and more value, to the detriment of the free choice of the citizen. Two visions are therefore in opposition: those that see social distancing measures as a deprivation of individual freedom and those that see them as the defence of the common good. What can we think about this?
SS. Isolation measure was necessary to contain the spread of the epidemic. And it remains so as long as the social conditions are those of the emergency. These restrictions are odious, but they can lead to a vision of the common good, broader than personal comfort. This goes so far as to call for the suspension of rights when the exercise of these threatens the health and the very life of others.
In colloquial terms: it is the rediscovering of “we” as an aggregator of social life. A significant challenge, in the age of elephantiasis of the Ego! Society is not made up of a sum of narcissisms, but of overcoming them, through orientation towards the common good.
D. Much is also said about the social distancing measures taken abroad, in particular in European countries and China. In this sense, how is the discussion on the concepts of freedom and control evolving from your point of view?
SS. It would be naive to think that control is equivalent to bolted and nailed doors, as is said to have happened in China in the case of virus-positive people confined at home; or to the tracking of contagion with apps, as is being proposed in Italy. These rudimentary forms of control are much less insidious than the ones we suffer unconsciously. Just think of the pathways that we are induced to embrace as consumers by hidden persuaders. And what about the control we would be called upon to practice on ourselves? Freedom is not the arbitrary exercise of our preferences. Controlling the excessive impulses that lead us to disregard the limits is the highest form of freedom.
Q. During this emergency, politics looks to medicine and science as a guide: from your point of view, how is the medical-scientific class moving?
SS. We have some signs that the medical world is acquiring a new awareness of politics. The reference is obviously to health policy. The great change that has occurred in recent decades in the treatment scenario can be summarised, using the formula coined by the American sociologist Eliot Freidson, as the sunset of “medical dominance”. This has had two faces: one towards patients, who have progressively had access to empowerment; the other towards politicians and administrators. Since the healthcare “reform of the reform” – since the early 1990s – the corporatisation program has led to an increasing subordination of medical professionals to politics. The budget has taken on the role of a totem, to which everything must be sacrificed. While modernity has changed the relationship with the sick, the post-modernity of corporatisation introduced in the public service has changed the role of health professionals, asking them to be service providers decided by others, with criteria often far removed from health concerns.
The crisis of the COVID-19 epidemic has uncovered macroscopic shortages: personnel, beds, emergency programmes (in technical terms: preparedness). The dysfunctionality of public health systems with a regional profile emerged, to the detriment of the unity of interventions. Not to mention the lack of a single place where treatment was provided. They were so well-ordered: hospital, home care, RSA, hospice… Suddenly the system was out of order; dysfunctions and deficiencies emerged. For example, the hospital-centric organisation, to the detriment of local medicine. Well, the upheaval caused by the pandemic offers medical professionals and health experts the opportunity to take on the role they deserve, putting the health of citizens at the centre and pushing back other interests. After the emergency, we expect a new health policy, not a restoration of the one that led to the crisis. When the time of doctors as heroes is over, it will be the time of doctors as expert programmers of the public health service.