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Dying in Neurological Disease - Different Pattern of Needs

Authors Anneli Ozanne
RIchard Sawatzky
Anette Alvariza
Kristofer Årestedt
Cecilia Håkanson
Carl Johan Fürst
Joakim Öhlén
Published in 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P01-467
Publication year 2019
Published at University of Gothenburg Centre for person-centred care (GPCC)
Institute of Health and Care Sciences
Language en
Subject categories Neurology, Nursing, Palliative medicine


Background: Many neurological diseases are progressive and cause phys- ical and psychological impairments, but motor neuron disease (MND) and tumors in the central nervous system (CNS tumor) often result in more rapid deterioration than other neurological diseases (OND). Aims: Was to compare symptom prevalence and relief, and palliative ori- ented care last week of life for patients grouped in MND, CNS tumor, and OND. Methods: A retrospective study from the Swedish Register of Palliative Care, documenting quality of care indicators during the last week of life in 2011-2012. Multivariable multinomial logistic regression was used to compare the three patient groups. Results: At the study period, 419 patients with MND, 799 patients with CNS tumor, and 1407 patients with OND were reported as underlying cause of death. Last week of life the “Frequencies of “Partial/no relief” / “symptom prevalence” (%)” in Shortness-of-breath was 150/220 (68) in MND, 54/100(54) in CNS tumor, and 177/265 (67) in OND; in the same order it was in Anxiety 94/220 (43), 87/261 (33), and 103/319 (32); in Rattles it was 141/218 (65), 227/462 (49), and 432/774 (56); in Pain it was 57/188 (30), 109/555 (20), and 144/661 (22); in Nausea it was 14/37 (38), 27/70 (39), and 29/54 (54), and in Confusion it was 23/25 (92) 171/196 (87) 148/179 (83). Patients with CNS tumor had greater odds of having totally relieved pain and rattles relative to partly/not at all relieved symptoms compared to MND and OND. Patients with MND and CNS tumor had greater odds of having end-of-life conversations, a consultation of a specialized palliative team and other external competence, and family members having an after death conversationthan in OND. Conclusions: All groups experienced symptom distress with variation in symptom relief. Patients with CNS tumor seem to receive better care than patients with MND and OND. Individual care planning is recom- mended to promote symptom relief regardless of diagnosis.

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