‘Nice one’ – but why at the end of the list (and just at the end of life)?

NICE – The National Institute for Health and Care Excellence – is an English special health authority and non-government public body. It is tasked, amongst other things, to reduce variation in the availability and quality of NHS treatments and care in England, and also provides services to other governments within the United Kingdom.

In March 2017 NICE announced that it had published new guidance ‘calling on healthcare professionals to ask adults in the final days of life about their religious and spiritual beliefs.’

The guidance was necessary because the 2016 End of Life Care Audit had shown that, although almost half of all deaths in England occur in hospital, only 1 in 7 of those who were able to communicate their requests had their spiritual wishes documented.

This low figure is surprising, especially as patients’ spirituality has been an audited domain in End of Life Care for several years now, and Palliative Care teams are usually scrupulous in assessing people’s spiritual needs. Does the problem arise when patients are cared for by other early teams, for whom spiritual care is not as routinely assessed as it is by palliative care practitioners?

Is documentation the issue? Presumably many more patients than 1 in 7 had their spiritual needs assessed and attended to, but this care did not make it into the notes. Was this because the chaplains were not permitted to write in the notes in those hospitals? Did those who were authorised to write in the notes overlook the spiritual care that had taken place? Or were they not informed about it?

The old adage ‘if it isn’t written down, it didn’t happen’ is rather shocking. It means that people are painstakingly and skilfully attending to people’s spiritual care needs, yet from an auditor’s perspective it’s as if this never happened. The work of spiritual care has been rendered invisible.

This invisibility is apparent even in NICE’s announcement about the need for spiritual assessment in end of life care, which doesn’t actually mention chaplains or spiritual care givers specifically. One then has to hunt through the web links several times to find the guidance about spiritual care, which appears at 1.2.1 under Communication.

Tellingly, spiritual needs are the final bullet point – always it seems at the end of the list – which states that, when establishing the communication needs and expectations of those entering the last days of life one should take account of ‘any cultural, religious, social or spiritual needs of preferences.’

If spirituality is the ‘final’ assessment when someone is dying, and there are so many other matters to attend to, then it’s hardly surprising that it’s often overlooked!

On the Prayer Project, our initial analysis of the UK data has noted that the issues of chaplains’ access to patient notes and early assessment of spiritual needs – ideally at admission – are present in what people have said or written. There are also several comments about the particular value of spirituality in end of life care settings, so it is troubling that this work is so poorly documented across the country.

What, too, of the increasing appreciation of spiritual care in other settings, like paediatrics, mental health, acute care, community care and general practice, as well as palliative care? See pages 16-23:

Is all this spiritual care being recorded in patient’s notes? Has is it too been rendered invisible and as if it never happened?

Written by The Revd Dr Christina Beardsley

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