Our partners from esanum.it chat with Dr. Michele Usuelli, councilor of Italy´s Lombardy region and promoter of a reform that could enable the donation of bodies or anatomical parts for purposes of scientific studies, research or teaching.
Made in collaboration with our partners from esanum.it
Last February 2019, the Regional Council of Lombardy approved a wide-ranging reform of necropsy, funeral and cemetery services (Regional Law enacted on March 4th, 2019, N. 4). During the discussion building up to this reform, two proposals presented by Michele Usuelli, councilor and member of the +Europa party, were accepted. The first regulates the way in which citizens can organize for the use of their bodies, after death, for research and study purposes. The second allows citizens to donate recognizable anatomical parts to science.
Shortly after the legal reform was approved, the Italian Council of Ministers challenged the new Lombardy regional law because some of its provisions would run against the fundamental principles of health enshrined in the Italian constitution. It was all blocked because, according to the central government, the Lombardy Regional Council had overstepped on federal jurisprudence, legislating on matters that were not within its competence.
Dr. Michele Usuelli is a physician, specialized in neonatology, with 7 years of experience in neonatal therapy at Mangiagalli Center, also known as the Policlinico di Milano, in Milan. He has experience of managing and working in hospitals in developing countries in places such as Afghanistan, Sierra Leone, Central African Republic, Sudan, Malawi, and Cambodia. We met him for a chat about these reforms and more.
Italian law does not prohibit the use of one's own body, or part of it, for research and study purposes, nor the donation to the science of anatomical parts that have been amputated and/or have undergone surgery. But enacting the laws is a more confusing issue. In Lombardy, Italy, you tried to change the situation. What is the story of this reform? Is this an issue that was particularly close to your heart for personal/professional reasons or did this priority come from somewhere or somebody else?
The first thing that comes to my mind is that I am very satisfied with how this issue was originally addressed in the Lombardy region. I was very satisfied with the results obtained in the Regional Council last February. It wasn't so obvious that we would get there. In fact, out of the 80 regional councilors who have to manage the 19 billion euros that the Lombardy region allocates to healthcare each year, there are only three medical graduates. Of these, two have made a living as mayors. I'm the only one of the 80 who has experience as a hospital physician. Until recently, I worked in neonatal intensive care at the Policlinico di Milano in Milan. It is not always true that a physician is also good at managing health policy, but, of course, the fact that he or she is fairly aware of many issues concerning medicine, helps. The selection of the ruling positions within the parties should be a "health sector selection", let me say because this topic occupies 90% of the budget available to the Regional Council. It's not like that, to my great disappointment. I, as a physician, not only have the problem of convincing my political opponents, but I also have the problem of making myself understood.
My way of working on health is to act as a link between the world of medicine and the world of politics. Therefore, when the decision was taken to implement the bill reforming the funeral system, the parties listened to the various trade associations in order to understand which interests should be protected. I started talking to the scientific community, then with people who could help me improve the law from a medical point of view. For example, a group of medical students told me, which I did not know, what the fate of amputated body parts was. They all went to the incinerator, instead of being used for study or research purposes. Then I worked with the scientific director of the Policlinico di Milano, Prof. Bosari, an anatomopathologist, through whom I came into contact with the Lombardy section of the Italian Society of Pathological Anatomy. Together we did an in-depth study which showed that in Italy it was almost impossible to donate one's body to science for study, research and teaching purposes. At the national level, there is no impediment, but there are no concrete implementing rules to the laws. With my staff, we agreed that our regional law could have this situation solved, at least in Lombardy, without having to change anything at the national level. In doing so, we set things in motion in Lombardy, in the hope of being the forerunner for other regions. There are hospitals that import corpses from abroad, especially from the United States, at an incredible cost. The costs also include the return of the corpse, which, after being used perhaps for teaching purposes, must be prepared and returned to the country of origin. The loss of time, money and energy is immense. Allowing one's body to be donated to science makes things much easier, even from an economic point of view. And it's no small feat these days.
This reform is also linked to the battle over early treatment provisions, i.e. the “advance healthcare directive”. Thanks to this law, a citizen could write in their biological will that they want to donate their body to science. We simply tried to regulate the concrete aspects of a principle that already existed on paper.
Lombardy is the only region to have legislated on this issue. According to your idea, if a citizen living in another region wanted to donate his body to a university or an institute of pathological anatomy in Lombardy, could he or she do so?
Our idea is that there should be maximum use of this rule by all citizens, not just the citizens of Lombardy. Today it is impossible to answer the question, because there is no implementing regulation and because everything is on standby because of the appeal made by the Council of Ministers. The line is to promote the measure as much as possible so that, gradually, everything becomes not just local, but national, because the needs of Lombardy are the same as those of other regions.
When we overcome the obstacle posed by the central government, we will focus on the regulation implementing this law. The implementing regulation will be very substantial because it will have to put everything that concerns this reform into practice. What we have achieved, thanks to +Europe, is that, before final approval, the regulation goes to the Health Committee. We will ensure that the law is then really accessible to citizens in an easy way. Down the line, we will take note of the well-written provisions and try to improve those in which there are shortcomings. We are trying to make improvements to the system, moving in the direction of scientific progress and moving a little further away from the Middle Ages. All this with a view to improving services for citizens, making things simple
In the interests of practical simplification, this should also be seen as another novelty, and in my opinion as a major improvement. In Lombardy, the old rules provided for the obligation of burial for fetuses aborted after voluntary interruption of pregnancy. Beyond the ethical and moral implications, which everyone can assess according to their own convictions, these rules translate into extra work for the health workforce, with related economic costs and bureaucratic burdens. In February, we managed to obtain that the fetus aborted spontaneously or following a voluntary termination of pregnancy should be buried only on explicit request. This is a simplification, without harming anyone's rights. Recently I discovered that, in the budget debate, the League and Forza Italia have included two amendments aimed at reintroducing the obligation to bury fetuses after miscarriage or voluntary interruption of pregnancy. An obligation abolished last February after the proposal of +Europe with majority support, is now being called into question by groups that were previously supportive.
On the subject of simplifications, a recent report on the number of transplants and organ donations in Italy has shown an encouraging trend. It seems that among the reasons that have increased organ donation is the possibility, given by many municipalities, to make the willingness to donate explicit when renewing the identity card. What do you think?
Great initiative. We also want to make things easy and transparent. The idea of using an electronic identity card is very good, as is the idea of using a health card for similar purposes. We'd like the health card to contain every citizen's advance healthcare directive. We are collecting information on this and, to date, we know that this innovation can probably only be done at the national level, not the regional level. We must use a system that protects privacy. We are working with the Luca Coscioni Association in this area. We need the technical capacity of including this content in the Italian health card, we need a system of data protection, and we need to convince the politicians that this is a good initiative. It is important not only to write good laws but also to make them available to citizens. Computer science can help us to make things easier.
In a modern country, the citizen must be informed about the possibility of organ donation and must be able to do so in a simple way. If the implementation of a law is not simple, then the law remains just a waste of paper. When you win battles of civilization, you must then watch over the implementing regulations. Sometimes they're terrible and they mortify the law and the principles that inspired it. Take, for example, the Italian Law 194 of 1978 (esanum note: this law legalizes some formats under which abortion is possible in Italy. See source 1). This is an excellent law, but if 70% of Lombardy's gynecologists object to their conscience - and in some hospitals up to 100% of gynecologists do - the goodness of the law is nullified along with the rights of citizens.
In the Regional Council, the two proposals were very favorably received, with the only vote against being taken by the 5 Star Movement (in Italian: Movimento 5 Stelle or M5S). Opposition from the more Catholic fringes of the council could have been expected, but that was not the case. Surprised?
The right in power in the Lombardy region is certainly a dangerously extremist right, more than that of the Formigonian era (esanum notes: this refers to the rule of Roberto Formigoni, from the Christian-democrat NCI party, as president of Lombardy between 1995 to 2013), but it is no longer a clerical right. I can testify to a certain change in positive. For example, for a few months now, in the Lombardy region, the abortive pill RU-486 can be administered in day hospital, whereas before it was necessary to hospitalize the patient for 3 days. This was achieved by simply pointing out in the health council the economic benefits in cost reduction that this would entail. This measure is in addition to the modification of the obligation to bury the fetuses and the donation of one's own body to science. I also managed to get the Lombardy region to commit one million euros to purchase long-acting contraceptives to donate to UNFPA, the United Nations Population Fund. These contraceptives are intended for countries with the highest fertility in the world, which are often the countries with the highest maternal and neonatal mortality. There is a new change of attitude in the Lombardy region. These measures have been the subject of criticism from the Secolo d'Italia (esanum note: a conservative Italian daily newspaper) and Opus Dei, but for now, the Lombardy region is not taking steps backward for clerical convictions.
Let's stay on the subject of steps backward and talk about what happened two months after the discussion of the law in the Lombardy Regional Council. The Council of Ministers, which met on Tuesday, 23 April 2019, on a proposal from the Minister for Regional Affairs and Autonomy, Erika Stefani, examined and decided to challenge the law. The reason, in a nutshell, is that you have legislated on issues that do not suit you. What can you tell us about it?
In the Lombardy region, everyone voted in favor of this reform, all except the councilors of the M5S. The law was democratically approved, then, after the intervention of M5S, the halt from the central government arrived. The reason for their opposition is inexplicable to me, they have a medieval vision. A vision that I could have expected from clerical groups, but they do not seem to have these characteristics. They have raised a conflict of competence between the matter of the State and the matter of the regions. In our view, this conflict of competence has no reason to exist. We await the opinion of the constitutional court, which will have to give its opinion on the legitimacy of our work.
Something big is going on. It seems that in the Lombardy region the North League (esanum note: this refers to the Lega Nord per l'Indipendenza della Padania or Northern League for the Independence of Padania, a right-wing political party) wants to make a real U-turn, proposing to remove everything that was contested in the appeal of the Council of Ministers from the regional law. This would be a very serious move for us, which would mean that the regional councilors would be subject to the will of the central government, even in the face of the much-trumpeted autonomy of the regions. I was asked to reopen the debate in September. Someone in the courtroom pushed the need for a further month of reflection because the question would be "ethical". In fact, ethics has little to do with it. In our universities, corpses are already used for the study of anatomy and for the exercises of medical students. Now you pay over ten thousand euros for a corpse, with the new law approved in February the taxpayers would spend zero. In conclusion: during the summer, the Lombardy Regional Council will reflect on whether to hold on to the Middle Ages or whether to look at the normality of the present. My hope is to be able to make our law concrete, which would allow our region, and perhaps others in the near future, to make a concrete step forward towards civic and scientific progress.
One last question, on a subject much debated in recent months, the problem of the shortage of physicians. Some regions are responding by calling in retired physicians, others are hiring foreign physicians. How is Lombardy's health system, considered by many to be a model to be followed, facing this problem? As a physician, what ideas do you have to tackle this issue?
We have presented a motion that urgently calls on the Lombardy region to get out of illegality and to return to applying the “Integrated Social and Health Plan” (in Italian: Piano Socio-Sanitario Integrato). It is a document based on principles of democracy, drawn up by the Regional Council together with the assembly of mayors and trade associations. It is a five-year program that forces a long-term vision in which, starting from the analysis of the data, all the social and health aspects are discussed. The Lombardy region is committing illegality because, like other regions, it does not write such a plan. It is certainly much more convenient for politicians to always work in an emergency and for example by using operational decisions, which are annual, putting patches here and there as time passes by. Everything happens in an undemocratic way because the deliberation does not go through the Regional Council, but the integrated social and health plan does and provides for a more balanced policy plan.
We are still one of the countries with the highest number of physicians per capita in the world. This is not always an index of good quality of care. I believe that many fellow physicians will agree with me when I say that we have more hospitals than bell towers. We have so many small hospitals, so many small wards. In Varese, for example, there are 3 emergency rooms in 9 square kilometers, but all 3 of them without enough staff. One solution to the problem of shortage of physicians could be to merge small sites into larger ones. It takes courage, but, of course, a larger location, where more diseases converge, can better trains its doctors. For example, birth points where you have less than 500 births per year, must be closed, all, because they can be dangerous for the community. The Italian Society of Neonatology says so, but we still have many departments open, which do not want to close although there are doctors working there who see on average less than two births per day. Centralization in larger locations allows for a better quality of care.
It is certainly necessary to communicate well with the citizens, explain to them the reasons behind the choices and highlight the benefits that follow. I am sure the citizens would be willing to accept a few more kilometers to give birth in a safer environment. When I worked in Mangiagalli and read the address of residence of the mothers who had given birth, if I noticed that they lived far away, I always said: "Of course they´ve come a long way, and skipped several hospitals before coming here to Mangiagalli". The mothers all told me that they preferred to go a little further to give birth safely. Citizens are far ahead of politics. Unfortunately, planning is almost non-existent, communication is deficient, and so often political propaganda and media misinformation venture to damage a specific policy issue. For many politicians, any closure in small towns, small departments, is considered a potential loss of votes. We are therefore being held hostage by the short-sightedness and weakness of political decision-making.
I am working to make data from the so-called 'target system' accessible to all citizens. This system is the "Performance Evaluation System of Regional Health Systems" developed by the Sant'Anna University of Pisa, to which the Lombardy region belongs. I believe it is legitimate for these indicators to be accessible to citizens. If I have to operate on my heart, I need to be able to know, in an easy way, how many operations are carried out in the various hospitals, how many complications are recorded, and so on. When I talk about this proposal, many of my interlocutors among the majority parties tell me that it is useless, because, according to them, the citizens do not have the competence to understand those data. I don't agree with that premise; it is a need that deserves an answer and that can only benefit the citizens.
In my opinion, in order to resolve the emergency of physicians’ shortage, the whole structure of health professions should be called upon to discuss with politicians and citizens the possibility of redesigning a scheme that is no longer working at the moment. Only in the light of such planning will it be possible to confirm or review the most useful access formats to degree courses and scholarships for the next few years. The planning of a project, whatever the project, starts from an analysis data and needs. Without these analyses, without planning, only reactive solutions can be adopted, which can also be harmful. We're paying the price for a lack of direction and vision. The same politicians have been ruling in Lombardy for thirty years, and therefore isn't it strange that only today we notice this lack of resources? The issue is that politics increasingly look to the problems of today and the votes of tomorrow, and rarely has the courage to look beyond.
1. ITALY. Law No. 194 of 22 May 1978 on the social protection of motherhood and the voluntary termination of pregnancy (in Italian: Norme per la tutela sociale della maternità e sull'interruzione volontaria della gravidanza). Official Gazette of the Italian Republic (in Italian: Gazzetta Ufficiale della Repubblica Italiana, Part I, 2 May 1978, No. 140, pp. 3642-3646). English version under: http://www.columbia.edu/itc/history/degrazia/courseworks/legge_194.pdf