He accompanied Dj Fabo to Switzerland, but has been fighting for years for a law that includes free choice on end of life. An interview with Marco Cappato on the living will.
A few weeks ago Marco Cappato physically accompanied Fabiano Antoniani, also known as Dj Fabo, in his courageous and painful choice to seek euthanasia in Switzerland. These days, driven by the emotional impact of the death chosen by the young man who was left blind and paralysed, the Italian parliament is also debating an end-of-life bill, and the treasurer of the Luca Coscioni Association shares his views on this text and on the need to leave patients the freedom to choose, through the living will. Until the very end.
The text under discussion in the Chamber does not yet provide for the legalisation of euthanasia. Do you consider it an important step forward on the issue of end of life nonetheless?
It is a text that clarifies two fundamental points in a positive way: that through informed consent and advance treatment directives it is possible to express a wish that is then binding on everyone, including the doctor; and that one may also refuse artificial hydration and nutrition — that is, the two points that made the previous parliamentary attempt by Calabrò (a Forza Italia senator, member of the Health Committee and author of a previous end-of-life bill that was never passed — ed.) absolutely worthless. In this case, by contrast, the Lenzi text (the PD MP active on the Chamber's Social Affairs Committee, who signed the current legislative proposal) respects them.
That said, your battle looks even further ahead.
To begin with, even in this bill there are elements that risk watering down its scope: the reference to medical ethics, the explicit mention of recourse to a judge in the event of a conflict between a proxy and a doctor and in the case of new medical and technical developments that arise, and the point on the protection of life, which is generic but always dangerous because it can be used to legally resist the person's wishes. That in itself is already a major compromise, because today an end-of-life law should naturally include the legalisation of euthanasia and medically assisted voluntary death: if further compromises are made within the compromise, the text would become worthless.
And yet opponents in parliament argue that the refusal of artificial hydration and nutrition amounts to a form of disguised euthanasia…
This is terminological trickery: Article 32 of the Constitution already specifies that no one may be subjected to medical treatment against their will. But in general we cannot even be forced to eat and drink. The living will serves only to transfer the rights we already have to the situation in which we might find ourselves unable to express our wishes any longer. The real question you can put to those who argue this is: "Do I have the right to discontinue a treatment? Yes. Do I have the right to stop eating and drinking? Yes." Moreover, any charter from anaesthesiologists and from the World Health Organisation tells us that artificial nutrition is obviously a medical act: if for no other reason than because it must be administered through a cannula, by means of a specific procedure to introduce the preparations, which are medical preparations. We are not talking about spaghetti all'amatriciana — and even if we were spaghetti all'amatriciana, the state cannot condemn me to eat them by force.
Why is the bill's reference to medical ethics wrong?
First of all because a law applies to everyone, whereas a code of professional ethics applies only to doctors: it is wrong for a law of the state to refer to the regulations of a professional body. Furthermore, the medical register in recent years has been very conservative because it wants to keep power as much as possible in the hands of the doctor — but that is precisely what the law must overcome. The doctor assists the patient, proposes treatments, provides them if they are accepted, but cannot impose one course of treatment or another.
Do you think that on end of life, as with conscientious objection to abortion, there is also the persistent influence of a strong Catholic imprint?
I don't think so. It is an ideology that goes beyond Catholicism; there is medical paternalism, and the statist presumption of having to exercise power over bodies, which is in the DNA of the totalitarian state, of whatever ideology. Catholics can be secular and liberal and distinguish the law of the state from doctrine. But even if we wanted to venture into the realm of doctrine, free will is a founding element of Catholic thought, so the argument that life is a gift and we cannot do with it as we please is a fraud within a theological discussion.
So why is our legislation still so far behind that of, say, Switzerland?
Simply because of a malfunctioning of the democratic system, because when you have approval ratings above 70 per cent for the living will — but even for euthanasia, according to all the polls — it is clear that it is democracy that is not working in transmitting society's demands to politics. Since we don't see these people, since there is no systematic, corporatist-style organisation, we experience the problem when it hits close to home, and right after that it no longer concerns us.
The Fabo case has reignited attention on end of life some years after the cases of Piergiorgio Welby and Eluana Englaro. And yet on the day of the general debate the Chamber was practically empty. Is this the moment we finally get a law?
The Fabo case was almost too much, in the unanimity of opinion it created. The emotion over an individual case does not last long, then we move on to the next subject. That is why there would need to be television in-depth pieces on prime-time talk shows. As for parliament — it is true that the chamber was empty on the day of the debate, but if they had broadcast the proceedings live on television perhaps more people would have felt the duty to take part. In the parliamentary debate this translates into the fact that those opposed do not try to win by convincing people; they fight a symbolic battle in the genuine hope of yet another postponement. They have already won, given that we are the only European country, along with Ireland, to have no living will law. Now they will aim to water down the text further — which, however, will certainly not revert to the Calabrò model — banking on amendments, delays, and ultimately hoping that the general election arrives before the final vote and that the bill is shelved.
So you are not optimistic about reaching a final vote?
Our job is not to be pessimistic or optimistic — it is to mobilise all our energy for a good law, to accompany the parliamentary debate. Tweet about #biotestamento
After accompanying Fabo to Switzerland you turned yourself in, and it's not the first time. Were you never tempted to stop out of fear of personal complications? And did you receive any expressions of esteem that you weren't expecting?
A taxi driver recognised me and didn't charge me for the ride. In the political debate, the intervention of Fabrizio Cicchitto (MP for Nuovo Centrodestra, ed.) was very significant, because he raised the issue of euthanasia clearly, but apart from that, public figures who have called me — very few… in this case, I have no fear: I feel I am doing my duty, and besides, I think it's only a matter of time before euthanasia is legalised. It's a social phenomenon: as average life expectancy increases, the need to be able to make decisions during the phases of illness and death becomes a social necessity, so I think that is the direction we're heading. Otherwise it would mean that institutions have irreparably lost any capacity to listen to society. That would be even more serious than the substantive issue itself.
