Objective: Advance Care Planning (ACP) in patients with Complex stage Parkinson’s disease (PD) at the Royal Berkshire Foundation Trust (RBFT),Reading,United Kingdom.

Background: In April 2019, specialists at RBFT developed a guideline for healthcare professionals to identify and appropriately refer patients with complex stage PD to a Parkinson’s specialist for ACP. This was part of a Quality Improvement initiative.Inclusion criteria included frailty markers i.e immobility/poor mobility, frequent falls, dementia, impaired swallow and functional dependence.

Method: For appropriate patients, an online referral was made on Electronic Patient Record (EPR) to Parkinson’s specialists to consider ACP after obtaining informed consent from patients and families. Referrals were received from acute medical& geriatric wards, Parkinson’s MDT clinics and PD Clinical Nurse specialist clinics. Discussions were recorded in a
predesigned proforma,then electronically sent to the General Practitioners and uploaded on the community palliative care Register,ADASTRA.

Results: A total of 16 patients have had ACP till date with age range of 70 to 90 years (average 83 years).43%(7/16) of the ACP discussions were held in clinics,37%(6/16) on elderly care wards and 18%(3/16)during domiciliary visits.56 %( 9/16) patients were able to take part in the discussions whilst in 43%(7/16) discussions were held with family members.100% had Do Not Attempt Cardiopulmonary Resuscitation(DNACPR) decisions in place.In 43% (7/16) of patients the preferred destination of care was their own homes.Only 1 patient  opted for a short trial of nasogastric feeding.43%(7/16) patients agreed to hospital admissions for intravenous antibiotics whilst 56%(9/16) preferred care in the community.Only 18%(3/16) had a valid Advance Directive to Refuse Treatment whilst 93%(15/16) had Lasting Power of Attorney for health and finance in place. All patients had their PD medications optimized as per their clinical conditions with only 1 patient identified to require end of life care anticipatory medications.

Conclusion: All patients were appropriately referred for ACP. Comprehensive discussions were held in reference to the stage of the disease, personal or family‘s preferences and functional needs. Although the data is currently small, we hope the current practice will help to develop a database with our community partners to provide holistic care for this cohort of patients with progressive neurodegenerative disease .

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