2.2.1 Dynamic model of palliative services

Palliative services should adopt a dynamic model where the palliative care services will interject at different periods during the condition’s trajectory according to the needs of people with Parkinson’s.

The animation below depicts the changes in belief about when palliative care should be introduced in a progressive condition’s trajectory. It moves from the traditional medical model, where palliative care was only available at the end of life, right through to the present day model, where we now recognise palliative care as a dynamic process. The palliative care input is guided by trigger or crisis points throughout the condition’s trajectory, which may only require palliative input for a brief period. This brief input is to resolve the crisis – such as particularly distressing symptoms, deterioration in their condition or at the start of new interventions, ie gastrostomy feeding – then services are withdrawn until next required.

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Model A The Traditional model of late involovement of palliative services

In the past because palliative care was related only to cancer care, there would have been a defined trajectory shifting from curative treatments to palliative/end of life care.

Model B The model of early and increasing involvement of palliative services

This traditional model was not sustainable as management of cancer with palliative chemotherapy even in the late stages of the illness, aiming to improve quality of life rather than extending life. So a pathway of integrated care was developed that as curative treatments reduced, the palliative care management increased.

Model C The model of dynamic involvement of palliative services based on trigger points.

Research highlighted the need for palliative care input in neurological conditions. But these conditions have varying prognosis with varying needs, and so a new dynamic model of care was required, in which palliative services would be episodic involvement at certain trigger points, with less or no contact between these episodes.

These trigger points may have been identified by the Health and Social care team as unmet palliative care needs, and input from the Specialist Palliative care requested.

Such “trigger” points maybe at diagnosis, marked deterioration in the condition physically or psychologically, management of complex symptoms ie pain or at the commencement of new interventions such as gastrostomy, and at the EoL .

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The National End of Life Care Programme’s framework for implementing end of life care in long term neurological conditions [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)] (2010) recommends the involvement of palliative care at an early stage in Parkinson’s to improve symptom management and therefore quality of life. Yet research continues to highlight barriers such as lack of awareness and understanding of palliative care services and the failure of some health and social care professionals to discuss the life limiting aspects of Parkinson’s. They therefore find it difficult to determine the appropriate time to initiate conversations about advance care planning (ACP).

If the palliative care approach is adopted by the health and social care professionals from diagnosis, ACP can be integrated into initial care planning and evaluated regularly over the course of the condition.

This will be discussed in greater detail in section 3

2.2 What are the principles of palliative care?

2.3 What is the definition of end of life?