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Amyotrophic lateral sclerosis (ALS), more than any other disease, promotes patient interest in hastened death. From an ethical perspective, end-of-life decision making should pivot on patient-centric considerations. However, medical decisions made by patients and their physicians are embedded in societal mores and the law. Opinions regarding the morality of physician participation in hastened-death and its incorporation into public policy remain sharply divided. This chapter attempts to provide a contemporary and measured review of the differing perspectives and the current status of physician participation in hastened-death. The focus will be on issues particularly relevant to ALS patients and those of us who care for them. Our primary goal is to provide for ALS clinicians a foundation upon which their individual consciences may determine whether their lawful participation in hastened-death can ever be considered an ethically permissible action or a socially acceptable policy.

Because of the limited range of treatments available for ALS, care is centred on maximizing quality of life (QoL). There is no universal definition of QoL, and no single instrument of choice with which to measure it. Health-related QoL (HRQOL) refers to physical and mental health status, whereas global QoL incorporates socioeconomic and existential factors outside the medical realm. Instruments for measuring may be generic or disease-specific. With the exception of bulbar function, QoL in patients with ALS is largely independent of physical strength and function, but is related to psychological and existential factors, and possibly to social supports, religiosity, and multidisciplinary clinic care. The ‘response shift’ phenomenon generally results in stable QoL over time in those with ALS. The choice of a QoL instrument depends on the goals of the user, and depends on whether it is being used for individual clinical care, measuring research outcomes, or assessing groups of individuals.

Much progress has been made in understanding, measuring, and managing quality of life and psychological well-being in individuals with ALS, but there are gaps. Anxiety and depression have been carefully explored in the ALS literature, but coping, resilience, sexuality, intimacy, and end-of-life concerns require more attention. Psychological interventions have been under-explored. Further research on mindfulness, hypnosis, and on complementary and alternative medicines is needed, with particular attention to early evidence that psychological interventions may lead to physical as well as psychological benefits. Attention to the psychological consequences of cognitive dysfunction in ALS would greatly benefits patients and caregivers. The impact of technology needs further study. Rapid advances in genetics, brain-computer interfaces, and new treatments, communicated virtually instantaneously via the internet, will inevitably contrast with the slower pace of implementation, resulting in surges of hope and disappointment. Optimal care is holistic, incorporating both physical and psychological assessment and management.