Managing Ethical Dilemmas in End-Stage Neurodegenerative Diseases

Neurodegenerative diseases are chronic, progressive and incurable illnesses that ultimately lead to death. The patient deteriorates inexorably towards the terminal phase of the disease when he becomes mentally and physically incapacitated. This article discusses the many ethical and moral dilemmas faced by the clinician and family members as they care for patients with neurodegenerative illnesses approaching the end of life. Topics discussed will include steps on how to assess mental capacity and decision-making capability, advance care planning, withholding and/or withdrawing treatment, food refusal, the do-not-resuscitate order and euthanasia. An approach to ethical decision-making incorporating Jonsen’s 4-topic approach will also be discussed briefly.