Background Those with end-stage Parkinson’s disease have higher physical impairment and carer burden compared to other terminal conditions, yet palliative care is considered late in the disease trajectory. Lack of evidence-based holistic guidelines for palliative care, and varying models of service provision, has resulted in heterogeneity in care access and quality.
Methods Principles as to what defines ‘gold-standard’ palliative care were discussed at a focus group of experts in palliative care and/or Parkinson’s disease, held virtually in December 2020. Thematic analysis of the transcript guided the development of a set of initial statements that characterised aspirational standards of care. These statements were evaluated using a two-stage Delphi process. An expert panel was selected to comprise healthcare professionals, patients and carers; this panel evaluated the statements via a Delphi survey. Quantitative and qualitative analysis of the survey results informed modifications of the statements after each Delphi round.
Results A final set of sixteen statements was produced. These statements, split into four domains (‘Structures and processes of care’, ‘Preparing for the end of life’, ‘ Care in the last weeks of life’ and ‘Care in the last days of life’) underline the importance of close working between generalist and specialist services and individualising patient care. The importance of family/carers as advocates was highlighted, particularly if sharing of health records between sectors and services was insufficient. The involvement of the MDT in all aspects of care, particularly advance care planning, was championed.
Conclusions The Delphi process has established a set of standards which can be integrated within and guide services, helping to improve the quality and equality of care. There remains uncertainty in how specialist services can reach ‘unknown’ patients in the community. Further work to establish the effectiveness of different models of service provision, including the implementation of keyworkers and telemedicine, is required.
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