Discussing living wills. A qualitative study of a German sample of neurologists and ALS patients

Patients suffering from amyotrophic lateral sclerosis (ALS) eventually lose their ability to communicate their treatment preferences in later stages of the disease. A living will enables ALS patients to specify their choices concerning life-sustaining treatment in advance. Our premise was that completion of a living will should be preceded by a discussion between patient and physician. We conducted a qualitative study of a sample of 15 neurologists and 15 ALS patients from two neurology centers in Germany. Our aim was to explore how discussions about living wills are undertaken. Data analysis followed grounded theory techniques. Our findings showed that both the patients and the physicians considered living wills to be closely connected to forthcoming death. Physicians waited for respiratory failure to occur before they informed ALS patients about living wills, an information strategy that we called the “wait-and-see-policy”. The patients completed their living will when they had accepted the hopelessness of their disease. They mostly used living will forms and did not see the necessity to set down disease-specific preferences. They intended to wait for symptoms to emerge before they made the decision about whether or not to accept life-sustaining treatment. The patients as well as the physicians pursued a wait-and-see policy towards end-of-life care, thus weakening the purpose of living wills. Our results point to the necessity and importance of an open and honest patient-physician communication which is a prerequisite for the discussion of living wills.