“Every Day was the same, Equally Difficult”—A Qualitative Exploration of Bereaved Caregivers’ Ethical Dilemmas in Caring for a Family Member with Amyotrophic Lateral Sclerosis

Abstract Introduction People with Amyotrophic Lateral Sclerosis (ALS) are commonly cared for at home and receive palliative care relatively late. Caregivers are therefore left to navigate complex ethical decisions without professional support. This qualitative study explores the ethical dilemmas encountered by bereaved caregivers during their loved one's illness. Methods We conducted a qualitative dialogic co-constructed exploration following the theory of social constructivism. Reflexive thematic analysis was used to analyze interviews with bereaved caregivers from the'Homecare ALS'pilot project. Results Three key themes contributing to caregivers’ (n = 16) ethical dilemmas were identified: (1) Being alone with the responsibility as the main coordinator of care; (2) Preserving the patient's autonomy as the disease progresses and (3) Changes in therapy directives and application of pro-re-nata (PRN) medication. Discussion Balancing beneficence, non-maleficence and autonomy as the disease progresses are complex tasks. Decisions surrounding end-of-life care, communication challenges, and medication management can cause moral dilemmas. To prevent moral distress in ALS caregivers, comprehensive support systems, including neuropalliative care, timely communication, and coaching in medication management are needed. Proactive care planning and emotional support for caregivers are essential to address ethical challenges and ensure a peaceful and dignified end of life for people with ALS.