The law invoked regarding end-of-life care and the one overlooked regarding carers

There is the patient’s right not to suffer intolerable pain; there is the ‘civil duty’ (Zaia) to respect the suffering of every patient; and there are situations of suffering that involve family members and loved ones, which are sometimes just as unbearable as the illness itself. It is this complex interplay of factors that underpins, as the most straightforward or simple response, the right to medically assisted suicide. These points have been reiterated many times in recent days; there is no need for further debate. Alongside or in parallel with all this, in recent days, attempts have been made from various quarters to draw attention to a related but distinct issue: there are also conditions of psychological, practical, social and economic isolation that exacerbate or render extreme situations of illness unbearable. The abandonment, the lack of strength and resources that lead those called upon to support a parent at the end of their life, or a child with a disability, to say, ‘We cannot manage this alone.’ As in the recent tragic case in Rome. Much has been made – and quite rightly so, even if at times with an excessive tendency to point fingers as a means of hiding behind them – of the unjustified delay by politicians in providing a clear legal framework for medically assisted suicide, including its limits and caveats. But there is another aspect, concerning both the law and society, on which politicians’ attention is conspicuously absent. It is the issue of carers – that is, the more than 8 million people in Italy who look after family members who are unable to care for themselves, a third of whom do so without external support. They are the suffering army of those who stem the tide of that abandonment, of that very real unbearability of life which is very often a cause of the request for a ‘gentle end’.

A few days ago, La Repubblica interviewed Valeria Perniciaro, a carer and founder of Tetrabondi Ets: “I remember all the women who took their own lives along with their disabled children,” she said. But she also said that “it is possible not to be crushed”, though a supportive system is needed – one based on solidarity, public support, interpersonal relationships and community organisations. 
It is regrettable that the ‘system’ providing this support in Italy remains so fragile. It is not just the end-of-life bill – constantly invoked and often seen as the quickest solution – that is stalled in Parliament; there is also a new and practical law on carers that has been gathering dust for even longer. Why is nothing being done about this? About those millions of people who are waiting for it?

The law on family carers, which has been under discussion for years – with repeated attempts to draft a consensus text based on often conflicting and incomplete proposals – has not yet been definitively approved (it was one of this legislature’s priority pledges, though it was also a priority for previous legislatures). A draft bill was approved in January and is now under consideration by the committees. Take your time. And yet, it is an integral part of that ‘civil response’ to incurable illness and suffering that is so often invoked in relation to end-of-life care. A dramatic aspect of the matter is that, given the limited funds currently available – which form the basis of the future law – there is an irreconcilable divide between those who wish to restrict the scope of carers to ‘resident’ family members only, and those who wish to extend it to a wider range of carers. A war amongst the poor. In Il Corriere, Enzo d’Errico pointed out, with regard to disability, that the single fund for inclusion for 2026–28 will decrease from 433.7 to 328.6 million. There is the commendable ‘Dopo di noi’ law, introduced by the Renzi government, but since then it has been funded with mere pocket change – a few tens of millions. Abandonment, loneliness and the feeling of ‘we can’t cope’ remain outside this scope – both in terms of attention and decision-making. Often this is also due to the culpable prejudice of those who believe that, in the choice to die, that sense of ‘we can’t cope’ has nothing to do with it.