Guide for nurses on end of life care in learning disability patients

Nurses must work closely with learning disability experts to help ensure the best end of life care for people with learning disabilities, says a new guide.

The guide, published by the National End of Life Care Programme (NEoLCP), sets out the challenges involved in providing high quality end of life care to people with learning disabilities, who may find it harder to communicate symptoms and their wishes.

“Communication and partnership working between the individual, the family and all those involved in their care are even more important than in other end of life care situations,” said Tes Smith, social care lead for the NEoLCP.

People with learning disabilities are more likely to have had bad experiences of healthcare in the past so may be reluctant to cooperate with healthcare professionals, adds the guide, which is titled The route to success in end of life care – achieving quality for people with learning disabilities.

Nurses and others need to bear in mind that care planning may be a slower process and should work for “as long as it takes” to ensure patients understand what’s happening and any decisions that need to be made.

The guide recommends early referral to end of life care services – even if patients do not yet have specialist needs – as it can take longer to get to know them and understand their needs.

It emphasises the need for collaboration between palliative care teams and those with experience of working people with learning disabilities.

“Learning disability staff can help the palliative care team to work most effectively by enabling them to understand the social, emotional, spiritual and psychological worlds of the person,” it says.

“Palliative care staff can support those closest to the person who is dying by enabling them to ‘read the road ahead’.”

A group of older people with learning disabilities were involved in shaping the content of the guide.

    * NEoLCP has also produced a guide for domiciliary care workers, which recognises they can be a vital link between patients and healthcare professionals such as nurses.