Care and decision-making at the end of life of ALS patients

Abstract

One in five amyotrophic lateral sclerosis (ALS) patients die due to euthanasia and physician-assisted suicide (EAS) between 1994 and 1998 in the Netherlands. This relative high proportion of EAS in ALS might be the result of inadequate supportive or palliative care, unrecognized depressions, patients feeling they were a burden on others or hopelessness. This thesis examines the rate of EAS in ALS between 2000 and 2008 in the Netherlands and explores the characteristics of end-stage ALS patients. Furthermore, it studies the determinants of requesting for EAS among terminally ill ALS patients, focusing on symptoms of depression, palliative care characteristics, and personal traits. To study these objectives, we translated and validated the 40-item and 5-item Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40, ALSAQ-5) to measure the health-related quality of life of ALS patients. The results in this thesis show that approximately 20% of the ALS patients die due to EAS. This rate was similar in two retrospective studies performed in the UMC Utrecht between 1994-1998 and between 2000-2005 and one prospective study between 2003-2008. The data in this thesis also showed no significant association between symptoms of a depression and EAS according to the ALS patients, the informal caregivers, and the physicians of ALS patients. Thirteen percent of the patients who requested EAS reported that they felt depressed or had diminished interest or pleasure in all, or almost all, activities for at least two weeks for most of the day; the physicians reported that 11% of the patients who received EAS had a depression or symptoms of a depression; and of the informal caregivers 35% reported that the patient who received EAS felt depressed or lost interest for two weeks for most of the day. Even when death approached, a statistical significant increase in symptoms of depression was not observed. EAS was associated with religion not being important to the patient, more years of education, dying at home and feeling hopeless. The data did not show that patients who requested EAS reported significantly more often dissatisfaction with their health care or financial situation than patients who did not requested EAS. Approximately 2 months before the patients’ death, 84% of all patients thought that the health care in general was good or excellent. Albeit most patients were satisfied with the care, there is still room for improvement.