Objective: To improve Advanced Care Planning in complex stage Parkinson’s disease

Background: Parkinson’s disease is a common neurodegenerative condition progressing through diagnosis, maintenance, complex and palliative stages. NICE guidance (1) recommends that patients with Parkinson’s disease and their family members or carers should be offered oral and written information about the progressive nature of the disease, advanced care planning, options for further management and what could happen at the end of life. A recent audit at the Royal Berkshire Hospital demonstrated that none of our Parkinson’s patients had a formal advanced care plan documented prior to their death. A subsequent GP survey revealed that 100% of respondents felt that a care pathway should be developed.

Method: We organised a multi-disciplinary study day which focussed on advanced, complex disease and aimed to both raise awareness and also engage key stakeholders including neurologists, palliative care physicians, community geriatricians and care home leaders as well as members of the wider multidisciplinary team. A poster was designed to highlight the features of complex disease and facilitate specialist referral from within the acute hospital. Alongside this, the inpatient electronic referral pathway was amended to specifically incorporate advanced care planning. Access to an online regional community palliative care database (ADASTRA) has also been granted. This means that Advanced Care Plans can be formally documented by the specialist team and accessed by General Practitioners, community teams and ambulance services.

Results: A written guideline and a pathway to help medical practitioners, nursing staff, allied healthcare professionals (including frailty practitioners and pharmacists), identify and appropriately refer patients with Parkinson’s to a specialist for advanced care planning has been successfully introduced into the trust.

Conclusion: Advanced care planning is a key process in enabling patients to share their personal wishes and values with regards to their future medical care. We hope that the introduction of a new care pathway for those with advanced Parkinson’s disease will help ensure that our patients are provided with the opportunity to discuss their preferences and enable us to deliver the highest standard of care.

References: 1. NICE Guidance (NG71); Parkinson’s disease in adults

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MDS Abstracts - https://www.mdsabstracts.org/abstract/advanced-care-planning-in-complex-parkinsons-disease/