On the occasion of Rare Disease Day which is celebrated on 28 February, the Italian Amyotrophic Lateral Sclerosis Association (AISLA) explores the theme of treatment and assistance to the patient with the presentation webinar of the document ‘Why palliative care in ALS? ‘. The initiative supports the fundamental importance of palliative care, right from the diagnosis, in a pathology such as ALS, but also the different approach, compared to the better known one, linked to oncological treatments. With a view to ‘neuropalliative care’, Aisla therefore promotes cooperation between care professionals so that a multidisciplinary team can fulfill its role appropriately.
Palliative care – recalls the association in a note – is aimed at alleviating the physical, psychological and existential suffering of the person without affecting the evolution of the disease, as provided for by articles 2 and 32 of the Constitution as the right to health, as a function of human dignity, assumes a wider dimension than the traditional expectation of the means of healing. “ALS is an incurable disease, but it is treatable – specifies Stefania Bastianello, technical director of Aisla Onlus and coordinator of the document and webinar – A cure can be understood as any approach that improves the quality of life of people with ALS”. The appropriateness of a congruous and complete assistance model sees the integration of palliative care in the management of the person with ALS, as demonstrated by numerous studies, remarked Aisa. Furthermore, solid data confirms that patients with complex goals of care, such as in ALS, benefit from the support of a palliative care specialist and that integration models can help facilitate the delivery of the most appropriate care.
“The unpredictability of ALS is subjective and never univocal – observes Daniela Cattaneo, palliative doctor of the ALS listening center and author of the document – Functional losses have different trajectories for organ and system functions or for single subject. complexity of having to provide the person with an approach that is as specific and personalized as possible”. The choice, therefore, falls on the will of the sick person. As well as the acceptance of a drug or a specialist intervention, refusal or revocation is foreseen. The person who has accepted a certain treatment path can then foresee, after having experienced the choice, to revoke that consent, as required by Law 219/2017. It is therefore fundamental and a priority to anticipate future disabilities and document the patient’s objectives and preferences before an acute problem arises.
The palliative doctor – continues the note – is able to welcome the wishes or desires of the patient and family members, deepen and decline them, allowing them not to feel alone or abandoned, but to continue to know and become aware of their own possibilities. It is a cultural and systemic approach that overturns the traditional performance model. Aisla therefore becomes the spokesperson for a broader discourse in response to the complex needs of the community, creating the premises where today’s commitment must take into consideration the decisions and prospects of the future, with a never univocal model, with timings that can be very different from person to person.
In the 40th anniversary of its activity, the Italian Amyotrophic Lateral Sclerosis Association therefore opens a path of awareness with the scientific support of dedicated teams to continue a path towards a curability that goes far beyond specialist and pharmacological treatment, also through the webinar moderated by Mario Sabatelli , president of the medical-scientific commission of Aisla and clinical director of the adult area of the Nemo Center of the Gemelli Polyclinic in Rome. Michele La Pusata, Aisla vice president and ALS sufferer will bring their testimony; Claudia Caponnetto, neurologist at the San Martino Hospital in Genoa; Simone Veronese, palliative care doctor of the Faro Foundation and national secretary of Sicp (Italian Society of Palliative Care), and Cattaneo.
The online appointment is for February 28 at 17.30. Participation is open to all and free, just register at https://bit.ly/webinaraislacp. The complete document can be downloaded from the website www.aisla.it at the link https://www.aisla.it/wp-content/uploads/2023/01/2022.-AISLA-Perche-le-CP-nella-SLA.pdf .
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