Commentary: In search of care strategies for distressed people with communication difficulties and a learning disability in palliative care settings: the lived experiences of registered learning disability nurses and palliative care professionals

As noted in Arrey et al.'s study, people with learning disabilities comprise a relatively small percentage of the population. Hence, although there is growing evidence that they face many inequalities in health (Krahn and Fox, 2014), there is the potential for their specific needs to be overlooked in wider discussions regarding healthcare. This is no less true in the context of palliative and end-of-life care, where they have been acknowledged as a group who often experience inequalities in care (Care Quality Commission, 2016). Papers such as this, which provide a specific focus on the needs of people with severe and profound learning disabilities who are non-verbal and who present with perhaps the most complex needs, are therefore welcomed.

This is a relatively small-scale study undertaken in one area of one country. However, the intention was not to generalise, but rather to seek a better understanding of how palliative care specialists and learning disability nurses experience, and respond to, the distress of people with learning disabilities who are non-verbal. A number of important issues arise from the research.

The authors have chosen their words carefully to highlight that people with learning disabilities may be unable to communicate their distress in a manner that staff can readily recognise and interpret. Sometimes, people with learning disabilities who are non-verbal are referred to as not communicating or as having ‘communication problems’. This overlooks the fact that communication comprises far more than the spoken word, and that pain and other forms of distress may be expressed in many different ways. By highlighting that staff need to be able to recognise and interpret (for example) changes in behaviour as indicating distress, the focus is placed on nurses and other professionals to improve their communication skills (or overcome their understanding difficulties).

To understand how individuals communicate, however, requires both skills and knowledge, including knowledge of the person. The findings of this study highlight this, since the importance of relationships emerges as a key theme. Furthermore, such relationships need to be developed not only with the individual, but also with those who know them well. Where individuals are unable to express themselves verbally, their families and carers are an invaluable source of support: they know what is usual for an individual and hence when there are changes.

A final area I would like to comment on concerns the second theme, namely ‘Positivity in successful caring outcomes’. All too often when we reflect on practice, we reflect on things that could have gone better. Although such a process provides invaluable learning, we often fail to reflect on, and learn from, situations that have gone well. It is positive to note, therefore, that practitioners in this study used reflection on positive outcomes to improve future care.

Tuffrey-Wijne et al. (2016) note that if health professionals delivering palliative care are able to better assess the symptoms of people with learning disabilities who are non-verbal, this will also benefit other patients who have difficulties in communicating their symptoms in a way that others understand. The same would seem to be true in relation to distress, and hence this paper offers some important areas for consideration for all healthcare practitioners.

Biography

Ruth Northway is Professor of Learning Disability Nursing at the University of South Wales, Chair of the Royal College of Nursing (RCN) Research Society Steering Committee, and Editor of the Journal of Intellectual Disabilities.