«End of life: a question still open» is the title of the first appointment of the AISLA Road Map, an initiative of the month dedicated to free CME training promoted by AISLA and aimed at professionals and healthcare operators, which began in Palermo addressing the issues, increasingly topical, of the right to health and human dignity. Central here is the theme of palliative care aimed at alleviating physical, psychological and existential suffering of the person. An important opportunity to promote awareness and encourage a constructive debate on the care of people with ALS and on bioethical issues related to the end of life.
ALS is, in fact, a disease that confronts the person with existential choices, a true paradigm of the complexity of care and the need for transition from the traditional performance model of medicine to the choice of the person. Where life and its quality are the goal to strive towards, «Aisla strongly supports the cooperation between care professionals so that the medical area can fulfill its role appropriately» reads the presentation presentation of the event .
In this logic, 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, withdrawal of informed consent and difficult symptomatological problems. «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 to continue our actions in raising awareness, in education, in order for people to better understand this disease, overcoming prejudices and stereotypes that can create social barriers”. said Fulvia Massimelli and Michele La Pusata, respectively national president and vice president of Aisla “Together, we must build an inclusive society, where every individual, regardless of their condition, can live a dignified and happy life”.
And shared and uniform treatment plan for all people with ALS it is necessary, even more so considering the absence of responses to definitive treatments, and the central theme is that of palliative care aimed at alleviating the physical, psychological and existential suffering of the person, as provided for by articles 2 and 32 of the Constitution and by Law 38/2010. The debate therefore focused on the work of sharing and reflection initiated by the Association regarding the shared planning of care, as defined in article 5 of Law no. 219 of 2017, which reads «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 treatment same”.
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, Aisla palliative care doctor «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 or emergency hospitalizations”.
«The complex of laws with respect to ethics changes rapidly, but our common feeling changes in a much slower and less linear way» he declared Lucia Craxi, of the University of Palermo and vice president of the Bioethics Council «Focused care yes, but focused on the person. 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. Therefore the duty of care of the biomedical sense must move towards respecting the self-determination of the person. Life is an inviolable good.”