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Pain management among improvements needed in end of life care – Marie Curie study

Honest communication between clinicians and families essential, say researchers
Family and clinicians with patient

Honest communication between clinicians and families essential, say researchers


Picture: iStock

The importance of pain management and good communication between healthcare professionals and people whose loved ones are receiving end of life care has been highlighted in a study.

Pain relief was identified by both carers and nurses as needing particular attention in analysis carried out by the Marie Curie Palliative Care Research Centre at Cardiff University. The findings are based on a UK survey of patients, carers and healthcare professionals, whose 1,400 responses related to specific themes were analysed in a paper published in the journal BMC Palliative Care.

Carers highlight concerns

Researchers found areas including pain management, breathlessness and nutrition and hydration were often perceived by carers and family members to be sub-optimally managed by healthcare professionals.

Some carers were concerned about pain management for loved ones unable to communicate verbally, such as those with dementia. Others questioned the pain management decisions taken by healthcare professionals. One member of the public described how nurses refused to give morphine to a dying relative.

The researchers noted further investigation would be needed to test pain management interventions.

Challenges in the community

One Marie Curie nurse in the study raised the issue of pain management for patients being cared for at home.

‘Why does it still take so long to get someone to come and give pain relief etc. out of hours? The patients should be able to get pain relief etc. very quickly’, the nurse stated.

Some bereaved carers described instances where nutrition or hydration had been denied to patients, or conversely, where it was given against the wishes of the patient and family. The researchers said this highlights the need to improve communication with patients and carers about the dying process and its effect on eating and drinking.

Marie Curie interim director of nursing Anne Cleary said it was critical for nurses to be confident when managing patients’ symptoms, as well as listening and communicating effectively.

‘If healthcare professionals are lacking confidence, it is likely this anxiety will be passed on to patients and their families, resulting in the sort of issues highlighted in this study’ she said.

‘Clearer guidance needed’

The research centre’s scientific director Annmarie Nelson said despite advances in end of life care there were still improvements to be made.

‘This analysis shows there are significant concerns around uncontrolled symptoms among patients and carers and also among healthcare professionals who feel there should be clearer guidance, particularly with regard to nutrition and hydration,’ she said.

Cardiff University lecturer in adult nursing Jessica Baillie said the study demonstrated the importance of honest conversations between clinicians, patients and carers.

‘Crucially this evidence should inform clinical practice in order to reduce distress for both patients and their families,’ she said.

Dr Baillie also said there needs to be a greater recognition that palliative care research is underfunded.


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