Objective: The initial aim of the study was to determine the utilisation of Advance Care Plans in people with Idiopathic Parkinson’s Disease (IPD) and Atypical Parkinsonism (AP) who are known to the Movement Disorder Service (MDS) in Cardiff and Vale University Health Board.

The secondary aim was to identify factors which predict morbidity and mortality in Parkinson’s Disease, enabling instigation of ACP discussions at the most appropriate time.

Background: The benefits of supporting patients at making decisions about their future care are well recognised.

The unpredictable and highly variable disease trajectory that exists within IPD creates great challenge in identifying the optimum time in which to undertake Advance Care Planning (ACP).

Method: We conducted a retrospective case note analysis of patients with IPD and AP who were known to the MDS and who died between January 2016 and December 2019.

Results: 8.5% of patients were known to specialist palliative care teams due to IPD however only 2.8% had a documented ACP. The mean time from diagnosis to death in IPD was 8.4 years (range 2-23 years). 59% of deaths occurred in a hospital setting, of which 68% were due to pneumonia or pneumonitis. 4.2% of patients were documented as being in a palliative phase however none of these patients were known to specialist palliative care teams. 16.9% of patients were referred to the specialist palliative care team during their last admission. 81% of patients had a last recorded Hoehn and Yahr score of ≥4.
23% of the 26 patients with AP were known to specialist palliative care teams and an additional 11.5% of patients were referred during their last admission. 23% of patients had an ACP. The mean time from diagnosis to death was 2.7 years (range 0.3-7).

Conclusion: There are currently no widely accepted or published prognostic indicators in Parkinson’s Disease. Despite the relatively short disease trajectory particularly in AP and high proportion of frail patients in IPD the occurrence of Advance Care Planning was surprisingly low. We are involving palliative care teams late on in the disease course, most frequently during a patient’s last admission, which misses a significant opportunity to prevent unwanted treatment or adhere to patient’s wishes with regards to preferred place of care and death.
It is imperative to identify the prognostic factors that could determine the optimal timing and patient subset in which to undertake Advance Care Planning.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/advance-care-planning-in-parkinsons-disease-are-we-getting-it-right/