On January 31, 2018, the law came into force law 219/2017 that is, the one that provides for the possibility of drawing up one’s own living willgiving the indications for depositing one’s own Advance treatment provisions – Dat. Five years later – is the complaint of the Coscioni association – alone lo 0,4% of Italians did. Why?
To answer this question we turned to Barbara Rizzi, palliative care specialist and scientific director of Vidas, an association which has been offering assistance to terminally ill patients for over forty years and which manages two hospices in Milan (Casa Vidas and Casa Sollievo Bimbi). Furthermore, at the end of 2020 Rizzi wrote an agile booklet entitled Biotestamento (Bibliographic publisher pp.161 9.90 euros) which had the precise objective of examining issues such as the end of life, palliative care and the DAT themselves, also providing simple practical indications on how to prepare them.
“The fact that there is a right, this does not mean that it translates into a duty” is his first observation. To then add «Fortunately, the law exists, but its existence cannot be used to blame those who do not use it. I repeat» insists Rizzi, «it is right that there is a right. But having said that, when we talk about Dat we are not dealing with a light topic because to draft them a person is asked to question himself about what his own death will be and to think about the moment in which he will not be able to interact with other people and decide for himself».
For Dr. Rizzi it is necessary to consider many factors, not just the numerical data, of how many people have filed their Dat five years after the entry into force of the law. “There is a cultural and psychological aspect that makes it difficult to imagine oneself close to death, many also say that they are not in a position to reflect on these issues… death remains one of the taboo topics of our times». Beyond the cultural difficulties for Rizzi there is also one lack of training among doctors «A university classmate who is now a primary confided in me that it is difficult to find someone among postgraduates who knows what palliative care is: the University prepares doctors to heal, there is little talk of death. When I say cure, I mean taking care at all times, but that’s not the case for everyone”.
The book Biotestamento was written immediately after the first lockdown for the Covid-19. «The pandemic has confronted us all with the need to rethink the theme of death. We found ourselves vulnerable. At that time I had the illusion that that time for reflection would have led many more people to draw up the Dat», underlines Rizzi, recalling that the Vidas desk dedicated to DATs precisely in those months «became an online service. We were able to reach more people, they contacted us not only from outside Milan and Lombardy, but also from Italians living abroad». A doctor and a psychologist respond to the Vidas desk «We have appointments already scheduled for the next two months» specifies the scientific director, «the requests are there, people are approaching this possibility, of course, perhaps it would be necessary to make them known more. But even in countries where the drafting of provisions on one’s own care is an older practice, I am thinking of the USA and Canada, there is talk of 40% of the population adhering to this practice”. Online in addition to the possibility of asking for an appointment, there is also a guide.
In 2019, Vidas itself had promoted a research to understand the population’s perception of biowill: only three out of ten people had asked themselves the problem of planning their own end of life “although the levels of favorability of living wills are good – reads the book – especially among young people, non-believers, residing in the north-west and with a medium-high level of education”. One of the fears expressed by many was “the way in which the document can be used, some have also expressed doubts that their own decisions are not being respected”, continues Rizzi.
According to the scientific director of Vidas, it is necessary to continue to “raise awareness” and “make the law known as a possibility and this is the duty of both healthcare professionals and journalists, the information must be made as correctly as possible both by doctors trained on the subject and by the press». On the health front, Rizzi also recalls that palliative care was only recognized as a discipline in 2013 and the first specialization schools were launched in November 2022. Still on the training front, “Law 219 was approved in the Senate on 14 December 2017 since then we have celebrated this anniversary every year with training events, in the last two years we have managed to involve the University of Milan by creating webinars with the hope of reaching medical students», concludes Rizzi.
Opening photo from Unsplash