Session Information
Date: Monday, September 23, 2019
Session Title: Quality of Life
Session Time: 1:45pm-3:15pm
Location: Les Muses Terrace, Level 3
Objective: To evaluate if Advanced Care Planning is completed in patients with complex stage of Parkinson’s Disease (PD).
Background: NICE (National Institute of Health and Care Excellence) guidance 71 recommends documented discussions with patients and families regarding progression of disease, side effects of medications, Advance Care Planning including decisions on refusing treatments, Do not Attempt Cardiopulmonary resuscitation (DNACPR) and to consider referral to palliative care team.
Method: Parkinson’s patients who had passed away in Royal Berkshire Hospital; between 1st January and 31st December 2017 were identified by Medical Informatics. Data on frailty markers and Advance Care Planning and End of Life Care was collected on a proforma. Information was gathered from clinical notes, clinic letters on electronic patient record and neurology data base.
Results: A total of 38 patients (33 males) were identified with an age range of 61-95 years (average 80.5 years) .The range of Parkinson’s duration was 1-18 years (average 7 years). 76% (29/38) were living in their homes.53% (20/38) of patients had complex stage of the disease whilst in 37% (14/38) the stage had not been documented. 45% (17/38) had cognitive impairment, 42 %( 16/38) had an impaired swallow and nearly 87% (33/38) had experienced falls.31 %( 12/38) were bed bound whilst 55% (21/38) used an aid to mobilize.73% (28/38) of the patients were reviewed by the Hospital Palliative care team on their last admission to hospital. Table (1)
Conclusion: Parkinson’s patients with burden of complex disease should have discussions on Advance Care Planning with their health care providers. This would ensure their preferences and choices are respected in terms of medical management, feeding, resuscitation and end of life care. A Quality Improvement Project was launched at the Royal Berkshires Hospital to improve advance care planning for this frail cohort of patients.
References: 1 NICE Guidance (NG71); Parkinson’s disease in adults
To cite this abstract in AMA style:
M. Khwaja, A. Chatterjee, G. Alg, A. Cotton, L. Richardson, H. Avery. Complex disease burden in Parkinson’s and Advance Care Planning [abstract]. Mov Disord. 2019; 34 (suppl 2). https://www.mdsabstracts.org/abstract/complex-disease-burden-in-parkinsons-and-advance-care-planning/. Accessed June 15, 2025.« Back to 2019 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/complex-disease-burden-in-parkinsons-and-advance-care-planning/