A Dutch survey into the practice of decisions at the end of life of patients with MND (Amyotrofic Lateral Sclerosis – ALS) by Dr Maud Maessen of the Utrecht University Medical Centre (UUMC), took the edge of the argument by many non-dutch doctors, that the percentage of euthanasia in this group was unacceptable high: one out of five ALS patients dies through euthanasia, while the general percentage of euthanasia in the Netherlands is not more than 1,8%. In addition they were in doubt as to undertreatment by Dutch doctors of death wishes linked to depressions in those patients and thus the care for this group being not up to standard. Dr Maessen followed 102 patients with ALS during the last year of their lives, asking them regularly (every three months) about their condition and the care they received. Results showed that ALS patients, those that asked for euthanasia as much as those that did not, were satisfied of the care they received; only 13% of ALS patients asking for euthanasia had signs of depression – as frequent as ALS patients NOT asking for euthanasia. There was no bias as to the caregivers and care given. The large majority of the 102 did not need or wished for more (or better) care.
Dr Maessen will defend her thesis called “Care and decision making at the end of life of ALS patients” end of September, 2009.