2.6 Which UK directives have influenced palliative and end of life care in Parkinson’s?

Across the UK various directives influence palliative and end of life care in Parkinson’s. These include:

Department of Health (2005) National Service Framework for Long-Term Conditions

Quality requirement 9 in this framework addresses end of life care and states that:

“People in the later stages of long-term neurological conditions are to receive a comprehensive range of palliative care services when they need them, to control symptoms, offer pain relief, and meet their needs for personal, social, psychological and spiritual support, in line with the principles of palliative care.”

NICE (2017) Parkinson's disease in adults

The original guidelines from NICE were revised in 2017 and include recommendations on palliative care:

1.9 Palliative care

Information and support

1.9.1 Offer people with Parkinson's disease and their family members and carers (as appropriate) opportunities to discuss the prognosis of their condition. These discussions should promote people's priorities, shared decision-making and patient-centred care. [2017]

1.9.2 Offer people with Parkinson's disease and their family members and carers (as appropriate) oral and written information about the following, and record that the discussion has taken place:

• Progression of Parkinson's disease.
• Possible future adverse effects of Parkinson's disease medicines in advanced Parkinson's disease.
• Advance care planning, including Advance Decision to Refuse Treatment (ADRT) and Do Not Attempt Resuscitation (DNA CPR) orders, and Lasting Power of Attorney for finance and/or health and social care.
• Options for future management.
• What could happen at the end of life.
• Available support services, for example, personal care, equipment and practical support, financial support and advice, care at home and respite care. [2017]

1.9.3 When discussing palliative care, recognise that family members and carers may have different information needs from the person with Parkinson's disease. [2017]

National End of Life Care Programme et al (2010) End of life care in long term neurological conditions: A framework for implementation

This states that the changes in a neurological condition’s progression are recognised in all care settings as triggers for the introduction and subsequent involvement of palliative care. The provision of this care should be based on holistic assessment. This includes multidisciplinary and multiagency collaboration, good interprofessional communication, and regular review of the needs of the client and of those most important to them.