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EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association
PARKINSON'S DECISION AID
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When should palliative care start?

This depends on the individual.  Parkinson’s affects everyone differently: the rate of progression and the nature of the symptoms experienced is unique to each person.  Reaching each stage of the disease (see 'The four phases of Parkinson's progression' below) varies from one person to the next.  Furthermore, as responses to Parkinson’s treatments tend to fluctuate, it is often hard to determine exactly when someone is reaching the final stages of their life and in need of palliative care.

Any decisions must take into account the views of everyone involved (including the multidisciplinary team) and the availability of resources. Treatment therefore needs to be tailored to each individual and where available specialist palliative care professionals introduced as appropriate. The National Council for Hospice and Specialist Palliative Care services in the UK recommended in its 2001-2004 strategic agenda that “every person with advanced, progressive and incurable illness should receive palliative care, appropriate to their assessed need” 1.  Whilst this is not yet a reality for many, considerable progress towards this goal is being made in many countries.

It is also recommended that palliative care ideally should start at the point of diagnosis because many aspects can be applied to all phases of life with Parkinson’s.  Applying the principles of palliative care sooner rather than later can enhance the management of the final stages.

The four phases of Parkinson’s progression:

  1. mild - few disabling symptoms that are easily managed.  A virtually normal life style

  2. moderate - symptoms become more severe and begin to encroach on day-to-day living but can be managed well by adjusting medication and treatment

  3. erratic - everyday life grows more difficult as medications become less effective and medication-induced symptoms such as dyskinesia emerge, together with balance problems, falls, anxiety and depression

  4. severe  - specialist palliative care may be introduced.  Symptoms often include complex cognitive, behavioural and communication problems as well as more obvious physical difficulties.

 

References


  1. The National Council for Hospice and Specialist Palliative Care Services - Strategic Agenda for 2001 to 2004