Symptom relief during last week of life in neurological diseases

• Main Authors: Anneli Ozanne, Richard Sawatzky, Cecilia Håkanson, Anette Alvariza, Carl Johan Fürst, Kristofer Årestedt, Joakim Öhlén
• Format: Article
• Language: English
• Published: Wiley 2019-08-01
• Series: Brain and Behavior
• Subjects: amyotrophic lateral sclerosis; brain neoplasms; end of life; motor neuron disease; neurological disease; palliative care
• Online Access: https://doi.org/10.1002/brb3.1348

Abstract Objectives The aim of this study was to investigate symptom prevalence, symptom relief, and palliative care indicators during the last week of life, comparing them for patients with motor neuron disease (MND), central nervous system tumors (CNS tumor), and other neurological diseases (OND). Material & Methods Data were obtained from the Swedish Register for Palliative Care, which documents care during the last week of life. Logistic regression was used to compare patients with MND (n = 419), CNS tumor (n = 799), and OND (n = 1,407) as the cause of death. Results The most prevalent symptoms for all neurological disease groups were pain (52.7% to 72.2%) and rattles (58.1% to 65.6%). Compared to MND and OND, patients with CNS tumors were more likely to have totally relieved pain, shortness of breath, rattles, and anxiety. They were also more likely to have their pain assessed with a validated tool; to receive symptom treatment for anxiety, nausea, rattles, and pain; to have had family members receive end‐of‐life discussions; to have someone present at death; and to have had their family members offered bereavement support. Both patients with CNS tumor and MND were more likely than patients with OND to receive consultation with a pain unit and to have had end‐of‐life discussions. Conclusions The study reveals high symptom burden and differences in palliative care between the groups during the last week of life. There is a need for person‐centered care planning based on a palliative approach, focused on improving symptom assessments, relief, and end‐of‐life conversations.