Palliative and end of life care provision for people with Parkinson’s disease, Progressive Supranuclear Palsy & Multiple System Atrophy

Abstract

Background Parkinson’s Disease (PD), Progressive Supranuclear Palsy (PSP) and Multiple System Atrophy (MSA) are incurable neurodegenerative conditions. A lack of palliative care provision has been demonstrated for people with PD. Few studies have investigated the palliative care needs of people with PSP or MSA. Place of death for those with PD differs from age matched controls, but the effect of place of death on the quality of end of life care has not been explored. The aims for this project were to explore: a) the palliative and end of life care needs for people with PD/PSP/MSA b) whether the quality of the end of life care experience varies by location Methods This is a mixed methods study involving closed internet forums, semi-structured interviews and survey data from national bereavement surveys. Results The rarity of PSP/MSA shaped experiences. There was a need for continuity of care which was often lacking in the NHS/social care. The factors that were important at time of death were that individual worth was recognised, time was given and good communication was attempted. Hospices delivered the highest rated care, due to their holistic nature. The chaotic nature of hospitals made personalised care provision difficult. Care homes provided good emotional support. Although home was the most preferred place of death, if additional support was not present it was difficult for informal carers to manage. Discussion There are ongoing studies investigating palliative care provision for people with neurological diseases, focussing on short term interventions. Although this may work for those with PD it is likely to work less well for those with PSP/MSA. The difficulties people with PD/PSP/MSA encounter with communication affects the way they are treated within the NHS and means that earlier discussions about the future are required if wishes are to be understood.