Neurology ethics at the end of life

Abstract

Ethical challenges in medical decision making are commonly encountered by clinicians caring for patients afflicted by neurological injury or disease at the end of life (EOL). In many of these cases, there are conflicting opinions as to what is right and wrong originating from multiple sources. There is a particularly high prevalence of impaired patient judgment and decision-making capacity in this population that may result in a misrepresentation of their premorbid values and goals. Conflict may originate from a discordance between what is legal or from stakeholders who view and value life and existence differently from the patient, at times due to religious or cultural influences. Promotion of life, rather than preservation of existence, is the goal of many patients and the foundation on which palliative care is built. Those who provide EOL care, while being respectful of potential cultural, religious, and legal stakeholder perspectives, must at the same time recognize that these perspectives may conflict with the optimal ethical course to follow. In this chapter, we will attempt to review some of the more notable ethical challenges that may arise in the neurologically afflicted at the EOL. We will identify what we believe to be the most compelling ethical arguments both in support of and opposition to specific EOL issues. At the same time, we will consider how ethical analysis may be influenced by these legal, cultural, and religious considerations that commonly arise.

Keywords: Amyotrophic lateral sclerosis; Artificial nutrition and hydration; Chronic impairments of consciousness; Death by circulatory criteria; Death by neurological criteria/brain death; Decision-making capacity; Declaration of death by neurological criteria/brain death; Determination and declaration of death by neurological criteria/brain death; End-of-life; Involuntary euthanasia; Lawful physician-hastened death; Medical/physician orders for life-sustaining treatment; Oregon Death with Dignity Act; Organ-sustaining technology; Palliative care; Palliative sedation; Physician-assisted suicide; Physician-hastened death (either PAS or VE); Supreme Court of the United States; Tracheostomy-assisted mechanical ventilation; Uniform Determination of Death Act; Voluntary active euthanasia; Voluntary passive euthanasia; Withholding, withdrawing, or limiting life-sustaining treatment.