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Empathy between digital citizenship and real citizenship

Illustration by Amy Grimes – hellogrimes.com

Extreme remedies for extreme evils: with the COVID-19 pandemic, telemedicine is establishing in the world. It will remain – in fact, together with smart working – something that will characterise our sociality with the medical and health classes. I have opened by saying Extreme remedies for extreme evils because in Italy, since 2010, we have done a lot to oppose telemedicine. After all, televisit was not recognised by the national tariff, unlike in other health systems, including the French one.

Unfortunately, in the Public Administration, there were several obstacles in implementing telemedicine programmes, although the technology was ready. The whole bureaucratic healthcare system is being streamlined – and I use a progressive periphrasis – because of the extreme evil of COVID-19 to facilitate patient triage and try to avoid contact in presence. Prescription is also being streamlined and can be sent via WhatsApp from doctor to patient and pharmacist for home delivery. In short, things have moved on. We have therefore become more or less digital animals, and indications on how to make healthcare, service, work, and education at a distance more effective are swarming – from the New England Journal of Medicine to The Lancet, to business magazines like the Harvard Business Review. Another reason that has slowed down the digital tool in Italy and perhaps in the Mediterranean countries – a very contextual reason for our way of being – is that we are a people of “contact”. Encountering is fundamental whether it is a lecture, a professional meeting or a medical examination. Our distances, except for those working in international contexts, are not comparable to those in America or Australia, where the patient can live eight hundred kilometres from the hospital, and therefore the entire rehabilitation follow-up was already carried out years ago.

A little over a year ago, on March 9, 2019, a robot appeared in a room of an American hospital. Through a screen remotely connected with a distant doctor, the patient, Mr Quintana, was informed as follows: 

You probably won’t come home – your lungs are no longer functioning

His granddaughter, Annalisa Whilharm, who was present, knew that he was very ill, but both she and her family had no idea that the disease had progressed to this point. The conversation continued unidirectionally with the remotely connected doctor who informed the patient that he was not conscious: 

There is a risk that your breathing is too weak, we have no effective treatment, but we can give you comfort therapy with oxygen mask and morphine injections

Since the patient could neither hear nor understand, the granddaughter had the thankless task of translating the news into simple words and, unintentionally, doing the doctor a favour by obtaining the necessary legal consent from the patient to remove the oxygen mask and move on to palliative sedation (euphemistically called “comfort therapy”) through the administration of morphine. Quintana died the next day, and the family is still in shock at what happened.

This case has become paradigmatic as one of the worst examples of the use of telemedicine: the era was pre-pandemic, and one could afford to defend human contact at all costs. Trisha Greenhalgh, Professor of Primary Care at Oxford University (general practitioner, epidemiologist, sociologist and the author for WHO of the guidelines on narrative research) opened my eyes in May 2019: 

It is not so much a question of technology, because, in itself, digital and robotics are neutral tools. Still, of how and when they are used: a person who is not empathetic in presence will very rarely become empathetic at a distance.

In all this current flowering of COVID-19 triage protocols, to understand the severity of other non-communicable diseases, via telephone, WhatsApp or Skype for the most technologically literate patients, reading the various publications we observe that there is much focus on effectiveness and efficiency, but painfully less – until almost disappearing – on empathy and how it can be built-in digital. Also because, perhaps, we will have to work like this for a long time. It turns out that it brings efficiency and security, you spend much less time, and you are more focused. There is still a question mark over quality.

Psychologist and anthropologist Robin Dunbar, from Oxford, has developed a number, called Dunbar, in which he came to the conclusion that human beings are only able to maintain 150 stable social relationships, and two-thirds of the time is spent with 15 people on average. In his reflections Relationships under lockdown, published on April 16 in an interview for Elsevier, he states that man is a social animal, he is a primate, so it is hardly surprising that young people under 25 have deep traumas in the imposition of lockdown. And again, children know who is really in the presence and who is virtual in human relationships: and children don’t care who is in another city and sees it via WhatsApp, they want the person in the presence. They want to be touched because the first known language is touch, and also the last: the areas of the brain in charge of contact suffer a slower cognitive deterioration than those in charge of communication. That is why, for example, when dealing with older people touch is very important in giving them security, in communicating closeness – which, he points out, is dramatically lacking in this COVID-19 emergency period.

Our brains are not yet ready to be with each other at a distance. In the era of COVID-19 (or post COVID-19) we will have to go back to mediation between contacts in presence – maybe they will become human protected touch where we will be more dressed and masked – and contacts at a distance. These avatars are the denial of our clan animality. Instead, we human beings, as a result of prolonged loneliness, often instinctively act the limbic or reptile brain, the one that attacks or flees. Therefore we must be aware that we are not united at a distance, united but distant, far but together, so as not to deceive ourselves by slogans. The worrying fact of March and April is that heart attacks in Italy have doubled, not only because of poor access to treatment but also as a result of loneliness as a cofactor.

So how can we get around the problem, having made it clear that being present in any case increases the possibility of empathic contact (despite Greenhalgh is right, better an empathic caregiver at a distance than an icy and threatening doctor in presence)? How to become more empathetic towards better digital citizenship? Let’s take pedagogy as a starting point: a UNESCO study in December 2019, conducted by the South Asia Pedagogic Association, Digital Kids Asia Pacific, on students in Bangladesh, Fiji, Korea and Vietnam found that digital students in Korea had the highest average score on digital emotional intelligence, an indicator of empathy (3.22 out of 4), while students in Fiji, Bangladesh and Vietnam had scores of 3.18, 3.06 and 2.96 respectively.

The children were self-conscious, able to understand their own emotions and impulses: however, students in Vietnam were not so comfortable in freely expressing their feelings online. Only a small percentage reported being able to do so. To “facilitate” empathy, both teachers and parents received the suggestion to invite children to communicate their emotions and speak in a non-judgmental way, both online and offline.

As people from different cultures, backgrounds and personalities may respond differently than others, children, parents and teachers need to be able to understand without judging different approaches to other users. This is the basis for empathy in digital citizenship. Otherwise, only cognitive information passes through, but a virtual classroom bond based on trust cannot be created.

Digital citizenship will not be able to replace but only complement real citizenship. These are some cues to invite patients to open up in telehealth, to tell their experience and not only their “organ chronicle”, to communicate their emotions. So the initial questions will be the open ones of empathic listening: How are you? How do you feel? What can I do for you? These are minimum briefing rules.

Although advocates of technological innovation and robotics, telemedicine should not replace the live communication of the imminent death of a relative in case of non-communicable diseases, as happened for Mr Quintana. Let us hope that the COVID-19 will remain a confined exception and that its legacies will be the unbureaucracy of the system, the avoidance of so many unnecessary meetings, a series of useful televisions, and the pleasantness of being together – always maintaining all the precautions. We’ve already experienced four months of brainwashing programmed to safeguard the space around us, anything but safe. In phylogeny, isolation was a pre-group mode that mammals developed. And so I welcome the balance between real citizenship and digital citizenship, not the latter with its easy slogans – we are digital – to displace the former.

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Written by

Epidemiologist and counselor – 30 years of professional life in health care. Classic humanistic background, including the study of Latin and ancient Greek, followed by scientific academic studies, chemistry and pharmacology. First years of career, in private international environment. I worked in medical research, moved to health care organization, getting academic specialization in Epidemiology. Later, in consultancy and health care education. Counselor with transactional analysis orientation. Currently, director of Innovation in Health Care Area of Fondazione ISTUD, an independent not for profit Italian Business School with an humanistic approach acknowledged by the Italian Ministry of Researech.. Active member of the board of Italian Society of Narrative Medicine, tenured professor of Narrative Medicine at Hunimed, Milan, and in 2016, referee for World Health Organization for “Narrative Method in Public Health.” Writer of the book; “Narrative medicine: Bridging the gap between Evidence Based care and Medical Humanities,” edited with Springer and of international publications on narrative medicine in scientific journals. Last book “The Languages of care in narrative medicine: words, space and sounds in the healthcare ecosystem”. Lecturer in different international contexts from Academy to Public and Private Foundations.

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