Palliative care in people with idiopathic Parkinson's disease who die in hospital. Issue 1 (19th November 2013)

• Record Type: Journal Article
• Authors: Walker, Richard W; Churm, Deepta; Dewhurst, Felicity; Samuel, Maria; Ramsell, Amy; Lawrie, Claire; Hill, Jessica; Threapleton, Christopher J D; Wood, Brian; Gray, William K
• Is Part Of: BMJ supportive & palliative care. Volume 4:Issue 1(2014)
• Page Start: 64
• Page End: 67
• Publication Date: 2013-11-19
• Subjects: Neurological conditions -- Chronic conditions -- Clinical decisions -- Communication; Palliative treatment -- Periodicals; Terminal care -- Periodicals; 616.029
• DOI: 10.1136/bmjspcare-2012-000412
• Languages: English
• ISSNs: 2045-435X

Abstract

Abstract : Background: The UK National Institute for Health and Clinical Excellence guidelines state that palliative care options for people with Parkinson's disease (PD) should be discussed. Aims: To investigate whether palliative care guidelines are adhered to for people with PD who die in hospital. Setting/participants: The medical notes of all people with a diagnosis of idiopathic PD who were living in two adjacent areas of northeast England and who died over a 3-year period were examined. Demographic data and specific information regarding events around the time of death were recorded. Results: For the 236 patients identified, the average age at death was 82.8 years. Of these patients, 110 (46.6%) died in hospital, 56 (23.7%) at home, 59 (25.0%) in a care home and for 11 patients (4.7%) the place of death was not recorded. For those who died in hospital, only three patients, and seven relatives of patients, had had a recorded discussion with a clinician regarding their preferred place of death and only 15 (13.6%) were referred to a specialist palliative care team. Forty-six patients (41.8%) were placed on the Liverpool Care Pathway. Conclusions: For those dying in hospital, there are few previously documented end-of-life care discussions with patients or their relatives. The use of end-of-life pathways and access to specialist palliative care is variable. Following the Neuberger report, the Liverpool Care Pathway is to be replaced with individual end-of-life care plans. It is important to engage patients, and their relatives, in decision making regarding preferences at the end of life.