The neurologist and the dying patient

In this issue and in the April 1996 issue of Neurology, two position papers from the American Academy of Neurology (AAN) Ethics and Humanities Subcommittee highlight the ethical responsibilities of neurologists to their chronically ill and dying patients. ^[1,2] These papers supplement three previous position papers published over the past 7 years by the AAN Ethics and Humanities Subcommittee. ^[3-5] Together they constitute a set of ethical guidelines for neurologists in the management of their chronically ill, critically ill, and dying patients. On the basis of the AAN position papers and learned opinion in medical ethics, here we present current recommendations for ethical practices by neurologists in treating patients at the end of their lives.

Patients have the right to refuse life-sustaining treatment.

One of the dominant themes of late 20th century medical ethics and medical jurisprudence is that patients have the ethical and legal right to refuse lifesustaining therapy even if they will die as a result of that treatment refusal. This right is grounded in ethical concepts of respect for personal autonomy and in legal concepts of self-determination. Respect for autonomy and selfdetermination form the foundation for the doctrine of informed consent. Except in emergencies, neurologists should not order tests or prescribe therapies without first obtaining patients' free and informed consent. Patients retain the ultimate right to consent to or to refuse the neurologist's suggested tests or therapies. ^[6]

When patients lose the capacity to make treatment decisions, their right to provide consent and refusal is transferred to a surrogate decision-maker. The surrogate decision-maker should attempt to reproduce the decision the patient would have made in that situation, thereby respecting the patient's autonomy and self-determination. In the absence of information about what decision the patient would have made, the surrogate …