In what situations is a living will advisable?

An advance directive sets forth the patient’s wishes for situations in which the patient is unable to express those wishes (due to impaired consciousness or lack of legal capacity).

This scenario is quite rare in ALS, because even with severe limitations in speech and writing, a patient’s wishes can still be communicated in various ways. In addition to communication systems (which also allow for written expression), it is often possible to clearly determine the patient’s wishes through communication using minimal movements (e.g., closing the eyes or specific eye movements).

Throughout the course of the illness, this allows for a dialogue between the patient and the physician to coordinate medical treatment and establish criteria for limiting or discontinuing treatment. As long as this form of communication is maintained, an advance directive does not apply.

Documenting the doctor-patient conversation in the (electronic) “patient record” and setting forth the decision regarding the planned and actual treatment in physician’s letters is sufficient.

Although living wills are rarely used in practice, it is still advisable to draft one in order to have reliable documentation of the patient’s wishes in the rare event that communication is lost.

An advance directive becomes relevant when a complete “locked-in” condition (locked-in syndrome)—involving a total loss of communication—has developed. Severe frontotemporal dementia (FTD) can also lead to a loss of the ability to communicate.

In this situation as well, an advance directive is crucial for determining the patient’s wishes regarding the continuation or termination of medical treatment.

Optimal advance directives for people with ALS should specify the criteria, timing, and circumstances under which a PEG, mask ventilation, or invasive ventilation should be limited (or discontinued) and palliative care initiated.