Background factors affect the palliative care and place of death of ALS patients
Background Amyotrophic lateral sclerosis (ALS) is a rare degenerative motorneuron disease with no curative treatment. The mean life expectance from diagnosis is approximately 2-4 years. The aim of our study was to clarify, where ALS-patients’ end of life (EOL) care was carried out and what factors were associated with the place of death.
Methods In our study we reported the place of death, intimate relationship, sex, age, and the use of noninvasive ventilation (NIV) and percutaneous endoscopic gastrostomy (PEG) among patients who were diagnosed with ALS during 2002-2022.
Results All together 299 patients were diagnosed with ALS and 260 patients died during the 20 years follow up period. 20% of them died at home, 28% at primary ward, 15% in hospital, 13% in specialized hospice care and 21% at sheltered home. 76% of patients who deceased at home and 69% who deceased at hospital had intimate relationship while 74% who died at sheltered home were lonely and mainly female.
Conclusions Most of the ALS-patients died out of home. The intimate relationship, sex, and age might be associated with the place of death. According to our findings it could be recommended to pay attention to these factors when planning the EOL care. Our findings should be ensured with a larger sample size.
Waltteri Siirala, Maria Silvoniemi, Jussi P. Posti, Eliisa Löyttyniemi, Manu Jokela, Outi Akrén
