Palliative care and end-of-life planning in Parkinson’s disease

In Parkinson’s disease (PD) typical “palliative care” type symptoms, such as pain, nausea, weight loss and breathlessness can occur throughout the condition, but become more prevalent in later disease stages. Pain may be specifically related to PD, e.g. dystonic pain with wearing off, but is more commonly due to other conditions. The cause can usually be elicited by a careful history and examination, and this guides intervention, both non-pharmaceutical, and pharmaceutical. For example, dystonic pain will respond best to appropriate changes to dopaminergic medication. In later disease stages people have increasing problems with swallowing, and also cognitive impairment. Impaired swallowing may lead to aspiration pneumonia, which is a common cause of hospital admission, and also death. Decisions about interventions towards the end of life, such as insertion of percutaneous endoscopic gastrostomy (PEG) tube for nutrition, can be very challenging, particularly if, as in most cases, the person with PD has not previously expressed their views upon this while they still maintained capacity to make decisions. Advance care planning (ACP) in PD should be encouraged in relation to interventions such as PEG tubes. It may also cover issues such as preferred place of death. Over recent years lower proportions of people have been dying at home, and this is especially true for PD, but home may well be where they would have preferred to die. However, there is little evidence to guide health professionals about how, when, and by whom, ACP should be approached.