Research reflections: NICE guideline on improving care for adults at the very end of their lives

Categories: Care.

Today the National Institute for Health and Care Excellence (NICE) published its new guideline on improving care for adults at the very end of their lives.

The brief background to the guideline is that, following the independent review of the Liverpool Care Pathway, NICE was asked to develop a clinical practice guideline on care of the dying adult (in the very last days of life) for use in England, Wales and Northern Ireland.

Throughout 2014 and 2015 the guideline was developed in consultation with stakeholders and by the guideline development group. Information about how NICE develops all its guidelines is available on its website and is worth a look at in terms of process and objectives.

What does the guideline include?

It provides recommendations on:

  • recognising when a person may be in the last days of life
  • communication
  • shared decision making
  • maintaining hydration
  • baseline assessment tool to evaluate practice
  • pharmacological interventions
  • anticipatory prescribing
  • implementation
  • research recommendations.

Why should we all be interested in the guideline?

For patients and their families it provides a transparent, written guideline for the care they should expect in the very last days of life.

For providers of care it provides evidence-based guidance and practical suggestions for care as well as a baseline assessment tool.

For educators it reinforces the need for education and different types of programmes, for example, e-learning for healthcare end of life care modules and the national advanced communication skills programme.

For researchers it provides recommendations for future research, for example, around the uncertainty of recognising dying.

For commissioners it provides direction on other types of commissioning arrangements that make a difference to care, eg local agreements as well as a resource impact tool considering the cost implications for care.

For everyone it is a reminder to provide individualised care every time, in every setting to every person and their family, rather than a ‘tick box’ approach.

Why should hospice and palliative care providers be interested in the guideline?

In addition to all the above reasons, the hospice and palliative care community should be interested because they have several roles they could play – not only in being providers but also as pioneers and producers of knowledge and care.

Hospice care has always focussed on person-centred, holistic approaches. Education and training of the workforce is a strong emphasis in the guideline and hospices across the UK have experience in this from traditional programmes to blended learning, digital innovation and practice based programmes.

Hospices also have a part to play in the research recommendations from examples such as the Outcome Assessment and Complexity Collaborative (OACC) to being research sites, co-investigators and outreach into hospitals, care homes and other settings.

Finally, the hospice and palliative care community should be interested in the guideline as way to challenge, monitor and report their own practice as well as learn from, and build relationships with, other providers.

The Care of dying adults in the last days of life guideline can be downloaded from the NICE website or you can read more about the guideline and the reaction from the hospice and palliative care sector here on ehospice UK.

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