Patient and caregiver communications and decisions

Communication between neurologists and patients with amyotrophic lateral sclerosis (ALS), as well as with their family members, is an extremely challenging aspect of patient care. Patients with ALS often resent their neurologists, who must impart a diagnosis that is not only unwelcome but also psychologically and financially catastrophic for both patient and family. There is no typical ALS patient. Some patients are very sophisticated with respect to their life experiences and have survived many emotional and physical challenges. Others have led very sheltered lives and have developed minimal psychological coping skills. There are also vast differences in patients' religious and spiritual resources, familial and extrafamilial support systems, and socioeconomic status. Therefore, each step in the diagnosis and treatment of patients with ALS must be highly individualized on the basis of the patient's unique psychosocial profile. Nevertheless, certain ethical considerations pertain to the management of patients with ALS, as with all patients. These include affirmation of the patient's autonomy, nonmalfeasance, and beneficence. Patients with ALS should be encouraged to participate actively in the decision-making process whenever possible, particularly in determining which diagnostic and treatment approaches they find neest ecoeptable. Every effort should be made to minimize any risk to the patient, and the optimal outcome that can be achieved should be sought, given the available options. With these caveats in mind, this review explores the key elements that should be considered in optimizing communication and caregiving in the management of patients with ALS. Many potential misperceptions on the part of both the neurologist and the patient exist even before an actual face-to-face meeting takes place. Patients with ALS tend to regard the physician as powerful and omnipotent and to perceive themselves as powerless and vulnerable. Therefore, the physician's pronouncements are often viewed as absolute decrees rather than as well-considered clinical opinions. …