Palliative Care Discussions in Multiple System Atrophy: A Retrospective Review.
OBJECTIVE
Multiple system atrophy (MSA) is an incurable neurodegenerative illness in which progressive symptoms, including stridor and acute laryngeal obstruction, occur. Advanced care planning and palliative care discussions in people living with MSA are not well defined. The aim of the present study is to evaluate advanced care planning and current practices in palliative care in MSA to identify opportunities for improving quality of care.


METHODS
The study is a retrospective chart review assessing the focus and timing of palliative care discussions in people living with MSA. Some 22 charts were reviewed.


RESULTS
A total of 22 patients were included. The most common symptoms were parkinsonism, orthostatic hypotension, GI/GU dysfunction, ataxia and gait impairment. Six patients had stridor. Of the palliative care discussions that took place, the most common topics were diagnosis, symptoms or symptom management, and prognosis. In the majority of patients who died and who had a do-not-attempt-resuscitation order, discussions surrounding resuscitation and goals of care took place only hours before death.


CONCLUSIONS
There is no standard approach to advanced care planning and palliative care discussions in people living with MSA. We propose a framework to guide advanced care planning and palliative care discussions in MSA.
Department of Clinical Neurological Sciences,Schulich School of Medicine and Dentistry,Western University,London,Ontario,Canada.
Anita M
AM
Dayal
Department of Clinical Neurological Sciences,Schulich School of Medicine and Dentistry,Western University,London,Ontario,Canada.
Mary E
ME
Jenkins
Department of Clinical Neurological Sciences,Schulich School of Medicine and Dentistry,Western University,London,Ontario,Canada.
Mandar S
MS
Jog
Department of Clinical Neurological Sciences,Schulich School of Medicine and Dentistry,Western University,London,Ontario,Canada.
Kurt
K
Kimpinski
Department of Clinical Neurological Sciences,Schulich School of Medicine and Dentistry,Western University,London,Ontario,Canada.
Penny
P
MacDonald
Department of Clinical Neurological Sciences,Schulich School of Medicine and Dentistry,Western University,London,Ontario,Canada.
Teneille E
TE
Gofton
D000368:Aged; D015331:Cohort Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D019578:Multiple System Atrophy / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy*; D010166:Palliative Care / Q000379:methods*; D010358:Patient Participation / Q000379:methods* / Q000523:psychology*; D012135:Respiratory Sounds / Q000503:physiopathology; D012189:Retrospective Studies; D012893:Sleep Wake Disorders / Q000503:physiopathology / Q000523:psychology / Q000628:therapy
advance care planning; end of life; movement disorders; multiple system atrophy; palliative care