Improving advanced care planning for patients with parkinson’s disease

By Dr Mark Vettasseri, Nottingham University Hospitals NHS Trust



To assess the service’s current advanced care planning practices for people with Parkinson’s disease (PD) and identify areas for improvement.


  • Advanced care planning plays an important role in chronic disease management, particularly for those in the advanced stages of the disease
  • It is recommended in the 2017 NICE guideline for people with PD
  • Of the 48 Nottingham patients who died in 2019, the majority had multiple signs of advanced PD
  • Just 21% had a formal advanced care plan, and none were referred to palliative care

Key findings

A retrospective case record review covering January to December 2019 found that 48 people known to the service had died. Key findings included:

  • 72% had been admitted to hospital at least twice in the two years prior to death
  • Pneumonia, advanced PD, and sepsis accounted for 45% of causes of death, while the cause was unknown in 17% of cases
  • 62% had at least two indicators of advanced PD
  • 21% had a formal advanced care plan and 14% had a community DNACPR
  • 14% had a discussion about preferred place of care prior to death
  • 7% had a discussion about wishes on enteral feeding prior to death
  • 0% were referred to a palliative care clinic


The service has implemented a number of improvements since undertaking the project:

  • A palliative care consultant has joined the PD MDT
  • A business care for a multi-disciplinary advanced PD clinic is in development
  • The palliative team have trained the PD MDT on advanced care planning