Discontinuation of artificial nutrition and hydration and covert cognition

Van Erp and coauthors (1) reported a comprehensive care trajectory of persons with prolonged disorders of consciousness (DoC) and the possible vicious circle of their outcomes. The topic of clinical misdiagnosis and the utility of specific assessment by means of CRS-R and advanced diagnostic techniques were only briefly treated by the same authors, whereas it should be of paramount importance, especially in end of life decision-making and discontinuation of artificial nutrition and hydration (ANH) (2). Also, the role of caregivers in the behavioral assessment of persons with DoC was just mentioned, whereas its importance has been previously emphasized by several authors (3,4), as being a critical component of the bedside assessment of patients with disorders of consciousness. The authors appropriately reported the use of midazolam and morphine during ANH withdrawal. It should be noted however that there are scarce data available on pain perception during ANH withdrawal. Interesting findings have been previously noted in persons with DoC by means of advanced diagnostic techniques (5) and specific clinical tools such as Nociception Coma Scale (6,8), also with personalized painful stimulation (9). The aim of this letter is twofold: (1) To espouse for inclusion of caregivers in the bedside behavioral assessment of persons with DoC and to use diagnostic advanced techniques to ascertain or exclude the presence of covert cognition. From an ethical, legal, moral, and medical perspective, these issues are quite relevant to cases of ANH decision-making (10). (2) To advocate for controlled studies on pain perception, possibly by means of advanced diagnostic techiques, in persons with DoC including during ANH withdrawal, to assess issues of pain and suffering