Contents:
Epidemiology and stages Of PD
Idiopathic Parkinson’s Disease (PD) is the second commonest neurodegenerative disorder in the UK; 1 in 37 people will be diagnosed in their lifetime. There are currently over 120,000 people living with the condition and the number is projected to rise with an ageing population.
The prognosis of patients with PD is quite variable and mainly determined by the age at which motor symptoms present. The impact on life expectancy – compared to matched controls – is greatest in those diagnosed when young and middle aged compared to those diagnosed in their 70s and 80s. Infection is the usual mode of death (especially pneumonia) as advanced disease typically co-exists with frail physical health.
Above: The stages of Parkinson’s
Palliative Stage PD
Prognostication can be challenging as each patient’s clinical trajectory is different given the heterogeneous nature of Parkinson’s. There is increasing recognition of clinical subtypes, for example a more rapid decline seen in those with ‘diffuse malignant’ phenotypes vs. those with mild ‘tremor dominant’ disease. The ‘palliative phase’ of PD is thought to last 2 years, on average, although there is no international consensus definition.
The following are suggested indicators of palliative PD:
- Waning response to dopaminergic treatments;
- Advanced dementia (+/- psychosis);
- Recurrent falls;
- Progressive weight loss;
- Frequent hospital admissions;
- Dysphagia leading to recurrent respiratory tract infections;
- Admission to a nursing home.
Clinical tools may also be helpful to identify palliative patients; examples include SPICT (Supportive & Palliative Care Indicators Tool), the Clinical Frailty Scale and the Hoehn and Yahr scale (Stage 5 correlating to late disease).
An advance care plan (ACP) should be proactively discussed with the patient and/or their advocates. When a patient’s condition is recognised as palliative, an MDT approach may be needed including the PD specialist (geriatrician or neurologist), Parkinson’s CNS, GP and palliative care team.
Tools such as the ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) or a local personalized palliative care plan are helpful to guide Advance Care Planning discussions. In a primary care setting this should also include addition to the practice palliative care register (sometimes known as the Gold Standards Register). In secondary care these tools can also help to avoid unnecessary or unwanted admissions.
There is useful information for carer’s on how to plan ahead available at Planning Ahead | Parkinson’s Foundation.
It is important to establish the communication needs and expectations of patients taking into account their cognitive status and if they have any specific speech, language or other communication needs. When speech is impaired, involving their family or carer is likely to facilitate better communication and identification of needs.
The Dying Phase
Whilst patients may live with ‘palliative stage’ PD for approximately 1-2 years, the last days or weeks of life are usually predictable due to the general trajectory of decline.
If a clinician is confident there is no reversible pathology to address, typical signs include:
- Little interest in food/fluids (especially with a poor swallow);
- Sleeping most of the time or being unarousable;
- An infection which is not responding to antibiotics.
There has been growth in the literature surrounding generic care in palliative stage Parkinson’s. However, such work has focused on developing tools to assess symptom burden and to facilitate ACP discussions. In contrast, there is a paucity of evidence on how best to care for the actively dying patient and therefore a lack of national or local guidance for these complex patients.
Disclaimer
These Guidelines are intended for use by healthcare professionals and the expectation is that they will use clinical judgement, medical, and nursing knowledge in applying the general principles and recommendations contained within. They are not meant to replace the many available texts on the subject of palliative care.
Some of the management strategies describe the use of drugs outside their licensed indications. They are, however, established and accepted good practice. Please refer to the current BNF for further guidance.
Whilst SPAGG takes every care to compile accurate information , we cannot guarantee its correctness and completeness, and it is subject to change. We do not accept responsibility for any loss, damage or expense resulting from the use of this information.