A study, led by the researcher at the Marie Curie Palliative Care Research Centre at Cardiff University, looking at the personal perceptions and experiences of patients, families and healthcare professionals, has highlighted the need for improvement in symptom management in end of life care.

The analysis has identified several areas of treatment which were often perceived as sub-optimally managed by healthcare professionals, including; pain, breathing difficulties, nutrition, and hydration. Nutrition and hydration were specifically recognized as being “of significant concern”, particularly for carers.

Based on the analysis, the researchers say there is a need for further research to test interventions in these areas, and ultimately, inform an evidence-based approach to clinical care. For example, the researchers point to carers’ concerns around under-recognized pain in patients who are unable to communicate verbally, such as those with dementia.

Bereaved carers described distressing experiences around artificial nutrition and hydration. The researchers say this highlights the need for improved communication with patients and their carers around the dying process and its impact on eating and drinking.

As well as anxiety around the denial of food and fluids, some carers described instances where there was pressure from healthcare professionals to administer artificial nutrition despite it being against the patient’s wishes.

Several of the healthcare professionals felt that further research was required to determine the nutritional needs of people towards the end of their lives and that a stronger evidence base was needed around if and when artificial nutrition should be administered.

Annmarie Nelson, Professor of Supportive and Palliative Care and Scientific Director at the Marie Curie Palliative Care Research Centre said: "Despite the advances we are seeing in the field of palliative care, symptoms such as pain and breathlessness remain at the forefront of people’s concerns."

"What this analysis shows is that there are significant concerns around uncontrolled symptoms among patients and carers but also among healthcare professionals who feel that there should be clearer guidance, particularly with regards to nutrition and hydration."

Dr. Jessica Baillie, Lecturer in Adult Nursing and RCBC Wales Postdoctoral Research Fellow at the School of Healthcare Sciences at Cardiff University said:

"While the findings point to the importance of open and honest conversations between healthcare professionals and patients and carers, there is clearly also a need for more robust evidence around interventions and greater recognition of the fact that palliative care research is currently underfunded. Crucially this evidence should inform clinical practice in order to reduce distress for both patients and their families."

Researchers conducted an analysis of data from the Palliative and end of life care Priority Setting Partnership (PeolcPSP) with the James Lind Alliance which conducted a UK-wide free-text survey which ran from December 2013 until May 2014 to establish research priorities within palliative and end of life care.