Understanding how people with Parkinson's disease and their relatives approach advance care planning

Key summary pointsAim To explore the views of people with Parkinson's disease and relatives on planning for the future and advance care planning. Findings Three main themes arose from interviews with the participants. This consisted of awareness of advance care planning, uncertainty of living with Parkinson's disease, and the salience of the decision-making process in advance care planning. Message Advance care planning in Parkinson's disease is a complex process and individual to the person involved. Purpose Advance care planning gives individuals with capacity the option of planning for their future, and anticipating future decision-making about their treatment or care should they then lose capacity. People with Parkinson's disease (PD) may develop significant physical and cognitive problems as the disease progresses, which creates a great need for, but significant challenges to, advance care planning. As a result, we set out to explore the views of people with PD and relatives on planning for the future and advance care planning. Methods Qualitative study with semi-structured interviews of thirty-three people with PD and their relatives in the North-East of England. Results Interviewees with PD were generally not keen to engage with advance care planning in the present, in comparison to the future. Three main themes arose from the data in identifying why this may be the case: (1) 'Awareness'-which included the limited awareness on purpose of advance care planning and Parkinson's disease; (2) 'Uncertainty'-the uncertainty of living with PD and of life; and (3) 'Salience'-the complex decision-making processes that interviewees engaged in, which were highly variable. Conclusion The use of advance care planning in PD is influenced by its perception amongst people with PD and their relatives. Health professionals have an important role in raising the salience of health care planning.