Séminaire parallèle 2
Early initiation of advance care planning in ALS patients in a routine palliative care consultation

M. Escher1, E. Sukockienė1, R. Iancu Ferfoglia1, M. Boegli1, C. Lefranc1, J. P. Janssens1 (1Genève)


Early palliative care and advance care planning (ACP) are recommended for multidisciplinary management programs (MDM) in amyotrophic lateral sclerosis (ALS). However, patients may be reluctant to discuss end of life care.


To determine the effect of a systematic palliative care consultation on the initiation of ACP in ALS patients.


Cohort study of ALS patients followed by the MDM of the Geneva University Hospitals between June 2012 and September 2016. Patients are seen every 3 months for a one-day multidisciplinary evaluation. All the data were collected prospectively.


Out of 68 patients, 4 with dementia were excluded. Half the patients were men. Mean age was 68.6 (±11.9 ) years. Thirteen patients (19%) had bulbar onset ALS. On the first palliative care consultation 14 patients (21%) were under non invasive ventilation (NIV). Thirty patients (44%) died during follow-up. ACP was discussed with 49 patients (77%) on the first palliative care consultation. Main topics were intubation and tracheostomy (n=23 ; 47%), cardiopulmonary resuscitation (n=24; 49%), and palliative sedation (n=18 ; 36.7%). Assisted suicide was discussed with 16 patients (36.6%) at their request. Functional disability was the only factor associated with initiation of ACP. Advance directives (AD) were written by 29 patients (43%), and 26 (38%) designated a healthcare surrogate. Bulbar onset, functional disability, and NIV were not associated with AD completion.


Advance care planning can be initiated early in most ALS patients and relevant treatment issues are discussed. All the patients should be offered to write advance directives as completion was not associated with disease severity.