Abstract
Introduction
Caring for patients with Parkinson’s disease (PD) approaching end of life (EoL) is challenging. A switch to transdermal rotigotine for dopamine therapy due to loss of an oral route can lead to delirium/agitation and several first-line symptom management medications used at EoL have anti-dopaminergic activity.
Aims
To analyse and improve prescribing for patients with PD at EoL in an acute hospital setting, focusing on:
- Dopamine replacement therapy
- Symptom management
Methods
Deaths where PD was entered on the medical certificate of cause of death (MCCD) were collated in 3 rounds of minimum 3 months duration spanning February 2021 to March 2024. After round 1 a new ‘medicines information leaflet’ relating to prescribing for patients dying with PD was introduced. After round 2 a new prescribing ‘PowerPlan’ for EoL symptom management in PD was added to the electronic prescribing system. Patient records were reviewed retrospectively and anonymised data stored on secure NHS drives. Ethics permission was not sought as this audit examined routine clinical practice.
Results
A total of 74 patients had PD on their MCCD over the 3 rounds of data collection. The vast majority (84%) had idiopathic PD. Patients were most frequently admitted taking oral co-beneldopa and/or co-careldopa. Across the 3 rounds, 41% of PD patients recognised to be dying were prescribed rotigotine patches. Comments on patient agitation were found in 38% of patients’ records (52%, 33% and 42% respectively). Corresponding dose adjustments to rotigotine patches were made in just 3 cases. Anti-dopaminergic medications were prescribed for 47% of patients recognised as dying in round 1. This dropped to 7% of patients in round 2, but remained essentially unchanged from pre-intervention levels in round 3 at 50%.
Conclusion
Despite several targeted interventions, there remains scope for improvement in prescribing for patients with PD who are recognised to be dying.
Comments
Derby model
A lovely project. The team in Derby have some good guidelines also for PD and palliative care
Thank you!
Was just looking at the Derby PD service website, which looks really good,
Prescribing Power Plan
Would including a subsection in the existing End of Life Power Plan, to include medications suitable in PD patients yield improvement?
Good idea...
Thank you for the suggestion! Possibly this might help...current if you search 'end of life' on our prescribing system, you get two PowerPlans - the standard one and the PD one to choose between. It's possible people are thinking the PD one is for specialist use only and maybe integrating the two PowerPlans with PD options (similar to low eGFR options already included) would yield improvement.
Patients' choice
I love that you are trying to make EoL better for people. Thank you.
I'm not sure if the EoLmeds/ plans are discussed well with our people with PD.
What do our patients want?
I hope we can get to a stage where these things can be discussed with the people living with PD. These people obviously have been living with their PD for some time, it is certain they will die and that they will die with their PD. I really hope we can get to a stage where meds, like these discribed, can be discussed with patients and that there is a shared decision making about how to manage them, their symptons at EoL.
Thank you!
Thanks a lot for the kind comment. I think you are right that, as patients very rarely die from idiopathic PD directly, we do have an opportunity to discuss in advance what dying with PD could look like and take their opinion on the management options.