Shared care planning, as defined by paragraph 5 of article 1 of Law 219 of 2017 on Advance Treatment Declarations, remains the keystone. And it is, in particular, for patients with ALS. It is enough to read it, at least in part, to understand its significance: «Every person capable of acting has the right to refuse, in whole or in part, any diagnostic test or health treatment indicated by the doctor for his pathology or individual acts of the treatment itself. Furthermore, he has the right to revoke the consent given at any time, even when the revocation involves the interruption of the treatment ».
The construction site still open on end-of-life care
“For the purposes of this law – the law insists – artificial nutrition and artificial hydration are considered health treatments, as they are administered, on medical prescription, of nutrients by means of medical devices”. An article that represents a starting point and an arrival point for certain types of illness that above all put the patient (but also the families) in the face of irreversible choices. And understanding the scope of these aspects is still an open construction site for many reasons: on the one hand, the difficulties of the health system which, for budgetary reasons, levels everything down and often without making any difference between different types of pathologies; on the other there is a cultural approach that has difficulty understanding the value of the norm. Thus the theme “End of Life: a still open question” appears to be highly topical, which is the title of the first appointment of the Aisla Roadmap held in Palermo. “Our narrative of medicine sees the doctor as a warrior hero, I would like a narrative in which the hero is the patient, who can also decide not necessarily to be a warrior – he says Lucia Craxi, vice-president of the Bioethics Consulta and researcher in the Bind department of the University of Palermo -. Therefore the duty of care from the biomedical sense must move towards respect for the person’s self-determination. Life is an inviolable good.”
Advance Treatment Declarations don’t take off
The topic remains open. Take, for example, the data on advance treatment provisions (the so-called Dat, better known improperly as living wills): according to the Luca Coscioni association, 191,277 Dat have been deposited in Italy (the data, they say, are in real time). of which 150,338 sent to the national database. In practice, in Italy, one Dat for every 215 inhabitants. A little. «They were missing – they say fromLuca Coscioni association – the information campaigns». It is no coincidence that it is Aisla that poses the problem: ALS is a disease that places the person before existential choices, a true paradigm of the complexity of care. «Where life and its quality are the goal to strive towards, from a “neuropalliative care” perspective, Aisla strongly supports the cooperation between care professionals so that the medical area can fulfill its role appropriately» .
The crucial role of palliative care
The figure of the palliative doctor is the specialist figure with the adequate skills to support families in dealing with complex situations, such as destructive behavioral manifestations, frontotemporal dementia pictures, withdrawals of informed consent and difficult symptomatological problems. The central theme is that of palliative care aimed at alleviating the physical, psychological and existential suffering of the person, as required by articles 2 and 32 of the Constitution and by Law 38/2010. “ALS is a terrible disease that strikes people mercilessly, bringing with it immeasurable challenges. And it is in these circumstances that we must demonstrate our responsibility – they say Fulvia Maximelli e Michele La Pusata, respectively national president and vice president Aisla -. Responsibility to continue our actions in raising awareness, in education, to make people better understand this disease, overcoming prejudices and stereotypes that can create social barriers. Together, we must build an inclusive society where every individual, regardless of their status, can live a dignified and happy life”.
Dealing with the unpredictability of ALS
Since 2014, Aisla has been engaged in drafting a consensus document on the therapeutic choices of the person affected by ALS, a work that has developed over time and thanks to the work of multidisciplinary teams. «The unpredictability of ALS is different from person to person and never unique – he says Daniela Cattaneo, palliative doctor Aisla -. We need to invest in an empathic link with palliative care experts. The synergy with a specialized team can outline personalized paths for the well-being of the person, offering support that reduces the possibility of urgent hospitalizations or emergencies”. It is a question of creating the correct premises in those cases in which today’s commitment must consider decisions and prospects for the future.