Advance care planning and mental capacity in ALS: a current challenge for an unsolved matter
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LETTER TO THE EDITOR
Advance care planning and mental capacity in ALS: a current challenge for an unsolved matter Barbara Poletti 1
&
Laura Carelli 1 & Christian Lunetta 2 & Nicola Ticozzi 1,3 & Vincenzo Silani 1,3
Received: 5 November 2019 / Accepted: 7 May 2020 # Fondazione Società Italiana di Neurologia 2020
Dear Editor in Chief, Recently, a law was approved in Italy, establishing the right for patients to refuse exams and treatments, including the suspension of previously accepted treatments, although assisted suicide and euthanasia remain illegal. Such legal establishment, in line with patients’ right to autonomy and self-determination, should be carefully handled in Amyotrophic Lateral Sclerosis (ALS). The progressive and fatal course of the disease and the presence of cognitive/behavioral alterations and frontotemporal dementia (FTD), together with the disrupt of communication abilities, have indeed relevant implications for advanced health directives (AHD). In particular, patients’ perspectives regarding medical decision-making and end-of-life interventions may be strongly influenced by cognitivebehavioral aspects [1], with frontal integrity and executive functions playing a crucial role on patients’ decisional capacity [2]. Moreover, the paucity of longitudinal studies in ALS lead to a poorly defined scenario about cognitive-behavioral impairment progression due to the absence of screening tools compensating for verbal-motor impairment, leaving this issue still unsolved. Even if a cognitive-behavioral tool has been recently developed and applied to overcome such limitations [3], it does not fully compensate for motor and speech impairment and thus cannot be performed in moderate-severe stages of the disease. Recently, new technologies such as Eye Tracking and Brain Computer Interface have been used to administer neuropsychological tests [4]; however, to date, a
* Barbara Poletti [email protected] 1
Department of Neurology and Laboratory of Neuroscience, IRCCS Istituto Auxologico Italiano, Milan, Italy
2
NEuroMuscular Omnicentre, Fondazione Serena Onlus, Milan, Italy
3
Department of Pathophysiology and Transplantation, “Dino Ferrari” Center, Università degli Studi di Milano, Milan, Italy
full verbal-motor–independent battery specifically designed to assess cognitive components of mental capacity in ALS patients along the course of the disease is not available. Patients’ attitudes towards end-of-life interventions are also influenced by psychological symptoms. An association between refusing an intervention and depression has not been definitely observed in ALS patients [5]; on the contrary, the presence of fear of suffocation and life-sustaining strategies dependency are frequently described in such patients and could play a more relevant role. Recent studies have highlighted the importance of apathy in being compliant with initiative and planning the future [6] and prognosis [7]. Apathy is a prominent symptom of ALS, and it is the most common behavioral change [8]. In recent years, apathy
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