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Palliative Care Guidelines

Back in 2015, new guidelines on end of life care were published by the National Institute for Health and Care Excellence (NICE – https://www.nice.org.uk/). These guidelines were designed to replace the controversial Liverpool Care Pathway (that’s for another blog post!), which was phased out in 2014.

The main recommendations from the guidelines were:

Recognising when someone is in the last days of their life

Patients should be checked regularly to see if they are close to death, or for signs that they are improving. If they are likely to die soon, then this should be explained in as much detail as the patient wants.

Discussing and planning care

A member of the care team should talk the patient through their options, including treatment and who should make decisions for them if they are no longer able to.


Help to stay comfortable

Checking and managing the following:

  • Pain
  • Managing breathlessness
  • Nausea and vomiting
  • Managing anxiety and delirium
  • Treating noisy breathing
  • Hydration


The doctor should consider:

  • Whether to stop medicines that may no longer be needed
  • Whether new medicines are required
  • How any medicines should be given

‘Just in case’ medicines

Medicines can be prescribed ahead of needing them and may be provided in a “just in case” box, meaning that there’s no delay in helping with symptoms.

These were all welcome recommendations which have helped to improve end of life care across the UK, but there is a long way to go. Nursing staff on the wards have told us that we are delivering the care and compassion which they would want to provide – if only they had the time. We are, therefore, also supporting NHS staff and reducing the stress and anxiety they feel when they are not able to deliver the care they would so desperately like to.


We have spent 6 months at the Princess Alexandra Hospital in Harlow where our ART Butterfly Volunteers have provided 668 individual visits to 262 patients who are nearing the end of their life. Feedback from patients, families and staff has been overwhelmingly positive – read our testimonials here. 

We are talking to more hospitals every day to expand the Anne Robson Trust Butterfly Volunteer scheme, helping to make sure that no one dies alone. With your help, we can raise the funds needed to provide the training and materials needed for our teams across the country.

Please visit our donation page and give what you can.

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