With the training event ‘End of life: an open question’, the Italian Amyotrophic Lateral Sclerosis Association (AISLA) has opened, in Palermo, the road map of the initiatives promoted in the month dedicated to free CME training for professionals and operators health care on increasingly topical issues of the right to health and human dignity. The conference, under the High Patronage of the President of the Republic, is sponsored by the Sicilian Region, the Municipality of Palermo, the University of Palermo and the Sant’Elia Foundation.
Amyotrophic lateral sclerosis (ALS) – reads a note released by the Association – is a disease that confronts the person with existential choices, a true paradigm of the complexity of care towards which to tend. From a ‘neuropalliative care’ perspective, Aisla strongly supports cooperation between care professionals so that the medical area can fulfill its role appropriately. In this logic, the palliative doctor figure has 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.
“ALS is a terrible disease – affirm Fulvia Massimelli and Michele La Pusata, respectively president and vice president of the national Aisla – It 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. Together – they continue – we must build an inclusive society, where every individual, regardless of their condition, can live a dignified and happy life ”. The bioethical debate, moderated by Roberto Gueli, president of the Order of Journalists of Sicily and National Deputy Director of Tgr Rai, saw the participation of guests from the health, scientific and theological fields on the central theme of palliative care aimed at alleviating physical, psychological suffering and existential 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 started by AIsla regarding shared care planning, as defined in Article 5 of Law No. 219 of 2017. Since 2014, Aisla has been engaged in drafting a consensus document on the therapeutic choices of the person affected by ALS with multidisciplinary teams. “The unpredictability of ALS is different from person to person and never univocal – recalls Daniela Cattaneo, Aisla palliative care doctor – We need to invest in an empathic bond 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 – observes Lucia Craxi, vice president of the Bioethics Consulta and researcher in the Bind department of the University of Palermo – but our common feeling changes in a much slower and less linear way. 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, in the biomedical sense, must move towards respecting the self-determination of the person. Life is an inviolable good”. It is a cultural and systemic approach that overturns the traditional performance model.
In his speech, Pietro Cognato, bioethicist theologian from the Pontifical Theological Faculty of Sicily, took his cue from the letter ‘Samaritanus bonus’, from the Congregation for the Doctrine of the Faith, which recalls the example of St. Camillus de Lellis, founder of the Order of Ministers of the sick. Present at the table were Angela Fundarò, vice president of the Sant’Elia Foundation, Bice di Piazza, contact person for Aisal Palermo, Antonino Petronaci, Case Manager Team Sla Samot, Vincenzo La Bella, coordinator of the Sla Auo Center of Palermo, the mayor of Palermo Roberto Lagalla who awarded an award to Michele La Pusata ‘example of life lived at the service of the Common Good”.
