Experiences of advance care planning in Parkinson's disease and atypical Parkinsonian disorders: a mixed methods systematic review.

BACKGROUND Advance care planning allows people to plan for their future care needs and can include medical, psychological and social aspects. However, little is known on the use, experience of and attitudes towards advance care planning in patients with Parkinsonian disorders, their family carers and in health care professionals. METHODS We conducted a systematic search of online databases in April 2019 using a narrative synthesis approach with thematic analysis and tabulation to synthesise the findings. RESULTS We identified 507 articles and 27 were included. There were five overarching themes: 1) what is involved in advance care planning discussions, 2) when and how advance care planning discussions are initiated, 3) barriers to advance care planning, 4) the role of healthcare professionals and 5) the role of the family carer. This evidence was used to highlight eight effective components to support optimal advance care planning in Parkinsonian disorders: advanced care planning discussions should be individualised in content, timing and approach, patients be invited to discuss advance care planning early and regularly, palliative care services be introduced early, a skilled professional deliver advance care planning, support to family carers be offered in the advance care planning process, healthcare professionals educated on Parkinsonian disorders and palliative care, advance care planning be clearly documented and shared with relevant services; and healthcare professionals enabled to conduct effective advance care planning. CONCLUSIONS These components can inform best practice in advance care planning in patients with Parkinsonian disorders.