4.1 What are the indicators for the end stage of life?
Making judgements about end of life care in Parkinson’s is complex. The rate of progression and the nature of symptoms experienced is unique to each individual, so person-centred care planning is very important. For care to be effective it needs an integrated multidisciplinary team sharing expertise in planning and delivering individualised, co-ordinated and seamless care. Each professional within the multidisciplinary team brings their own expertise to the palliative care process and may have been involved with the individual along the trajectory of their Parkinson’s.
Managing the end stage of life in Parkinson’s may involve the last few years of the life of the person with Parkinson’s in which life-prolonging therapy is replaced by palliative measures. The person with Parkinson’s may experience multiple acute episodes of physical disability and cognitive decline either related to Parkinson’s or other comorbidities. Each professional will now find there is a shift in the emphasis of care in the end of life stage, from a therapeutic pharmacological approach to one that places greater emphasis on quality of life issues.
The Gold Standards Framework has developed prognostic indicator guidance for Parkinson’s. The table below explains that the presence of two or more symptoms from any of the categories indicate the end stage of Parkinson’s.
DRUG TREATMENT Decreasing response to medications. Increasingly complex regimen of medications. | INDEPENDENCE Declining physical function, limited self-care. Increasing need of help for daily living. In bed or chair over 50% of day. |
CONTROL Parkinson’s becoming less controlled. Less predictable with ‘off’ periods. Repeated unplanned or crisis hospital admission. Significant comorbidities. | SWALLOWING Dysphagia leading to recurrent aspiration pneumonia, breathlessness or respiratory failure. Significant weight loss of more than 10% of body weight in last six months. Dysphasia (progressive communication problems). |
MOVEMENT Increasing ‘off’ periods. Deteriorating mobility with increasing falls. | NEURO PSYCHIATRIC SIGNS Deteriorating cognitive function. Depression and increasing anxiety. Hallucinations. |
Footnotes
(Scottish Intercollegiate Guidelines Network, 2010. These guidelines are now archived, but we consider the information above to still be relevant.)4 Management of the end of life phase in Parkinson’s