Emphasizing not only how fundamental palliative care is right from the diagnosis in a disease such as Amyotrophic Lateral Sclerosis – ALS, but also how different the approach is compared to the more well-known one linked to oncological treatments is what he chose to do on the occasion of Rare Disease Day Aisla which precisely on the subject promotes a webinar, opportunity to present the document “Why palliative care in ALS?”. The online appointment is set for 28 February, at 5.30 pm (details in the online agenda free participation to register: webinaraislacp) .
In a note, Aisla underlines how delicate and fundamental the issue is in the care of the ALS patient. “Palliative care – we read – 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, since the right to health, according to the dignity takes on a wider dimension than the traditional expectation of the means of healing.
«ALS is an incurable disease but it is treatable»said the doctor Stephanie Bastianello, technical director of Aisla onlus and coordinator of the document and the webinar. One therefore wonders what a cure is, where Research, albeit with great strides forward, has not yet provided definitive answers. «A cure can be understood as any approach that improves the quality of life of people with ALS».
To ensure the management of the complexity of a pathology such as amyotrophic lateral sclerosis – continues Aisla’s note – is the appropriateness of a congruous and complete care model. The integration of palliative care in the care path of the person with ALS it is a condition demonstrated by numerous studies. Moreover, it is confirmed by solid data that patients with complex goals of care – 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. Within a discourse that seems already established and preordained, there are the choices of ALS people.
«The unpredictability of ALS is subjective and never univocal», declares the doctor Daniela Cattaneo, palliative doctor among the protagonists of the webinar, who continues: «Functional losses have different trajectories for organ and system functions or for individual subjects. This entails the 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 and on that of no one else. Just like accepting a drug or a specialist intervention, the choice can be refusal or revocation. This means that the person, who has accepted a certain treatment path, can choose 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.
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 multidisciplinary team can fulfill its role appropriately. When the choice represents the manifestation of one’s wishes or desires, the palliative doctor is able to accept them, deepen them and decline them, allowing the person with ALS and his family not to feel alone or abandoned but to continue to know and become aware of their possibilities . A cultural and systemic approach that overturns the traditional performance model. Aisla therefore becomes the mouthpiece of a broader discourse in response to the complex needs of the Community. “It is time, understood as an emotional yardstick for the choice of the person and his family, that becomes responsible in this perspective of care. It is a question – continues the note – of creating the premises where today’s commitment must take into consideration the decisions and prospects for the future”.
In this view, the note concludes, palliative care responds to the high complexity of the pathology: therefore they intervene with a never univocal model based on multiple factors. Effective communication, capable of clarifying the possible paths, where knowing and managing uncertainty and decision-making processes becomes primary. These are choices shared by families too, with timings that can be very different from person to person. It is in this complexity, as is ALS, that palliative care responds to the need for a pathology with a very high social and family impact. Aisla, in its 40th year of activity, 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.
The full document can be downloaded from the website isolates to this link.
In apertura photo by Sebastien Gabriel on Unsplash