26th November 2010

End of life care in long term neurological conditions: a framework for implementation

Long disease duration and an unpredictable course are two key challenges to providing good end of life care for people with neurological conditions.

The National End of Life Care Programme (NEoLCP) and the Neurological Alliance have published a new framework that aims to support service improvement in this area.

End of life care in long term neurological conditions: a framework for implementation says it is vital that health and social care staff recognise changes in disease progression and adopt a holistic approach to end of life care.

It says there needs to be more discussion about end of life issues and better advance care planning (ACP), because cognitive deterioration may affect people’s ability to make decisions about how and where they want to be supported at the end of their lives.

The report highlights some of the challenges involved in providing end of life care for people with neurological conditions:

  • The risk of sudden death
  • The complex, multidisciplinary care required
  • The range of specialist treatments available
  • The behavioural and cognitive changes that may occur
  • Many symptoms are not adequately addressed or treated
  • Rapidly advancing diseases may need palliative care early on
  • Many people die with but not from their neurological condition
  • Neurological conditions are widely variable, making planning hard
  • Acute symptoms can result in hospitalisation for aggressive life-prolonging treatment, regardless of the person’s preference.

It urges multi-disciplinary and multi-agency collaboration on all aspects of end of life care, including those working in elderly medicine, rehabilitation, palliative care, primary care, social care and voluntary organisations.

All involved should understand key issues like symptom control, which not only improves quality of life for the person but also has a huge impact on how families manage after death.

The needs of carers – who often go unsupported through a very difficult experience – should also be prioritised.

“Services for people with advanced neurological conditions need to be co-ordinated, personalised, effective and integrated and treat individuals with dignity and respect,” says the report. “Effective commissioning should start and end with those who have the neurological disease and the people closest to them.”

Individuals with neurological disease have also highlighted ways to improve care:

  • Listen to what the person says about their condition and associated issues
  • Properly assess current problems and look for viable solutions
  • A multi-disciplinary team should manage symptoms as part of holistic care
  • Discuss ACPs sensitively with the person and their carers
  • Recognise the triggers that could justify a more palliative approach.

The full report can be viewed on the MS Society website

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