Perceptions of Palliative Care for People with Parkinson’s Disease

While palliative care for people with Parkinson’s disease (PD) has been widely considered, access for such patients has been slow to develop (Richfield et al, 2013).Hence, we set out to explore the experiences, needs and end-of-life issues from the perspective of people with PD, carers and health and social care professionals. In total, 205 in-depth interviews were undertaken: 54 people with PD (32 male and 22 female), 26 active carers (male 9 and 17 female), 15 former carers (4 male and 11 female) and 111 interviews with professionals.Our findings confirm palliative care needs remain unmet early in the disease process and require a stronger multi-disciplinary team-based approach. Patients and carers have suspicions that palliative care is just “terminal care”. Professionals had different views on the meaning of palliative care. Most agreed it was care of the ‘whole’ person, addressing physical and emotional needs throughout their condition, while some saw it as mostly end-of-life care. Many were hesitant about introducing palliative options to patients with PD because of its negative associations. People with PD, carers and some professionals have negative perceptions of palliative care. Professionals held various views on its definition, and were unclear about the timing and methods of its introduction in the PD disease trajectory. There is a need for professionals to examine their perceptions of palliative care and to consider promoting it to patients at an earlier stage, when it could make a positive difference to them.