Upsetting experiences of end of life care, including nurses and doctors refusing or seeming “frightened” to provide pain relief, highlight the need for urgent improvements in symptom management, say researchers.
The management of pain, breathing difficulties, nutrition and hydration in the final days of life were among key areas of concern for both relatives and healthcare professionals highlighted in a new analysis by the Marie Curie Palliative Care Research Centre at the University of Cardiff.
“Symptoms such as pain and breathlessness remain at the forefront of people’s concerns”
The study – based on responses to a UK-wide survey of views and experiences of end of life care – concludes that more work is needed to reduce suffering and distress for patients and their families at this crucial time.
The researchers analysed results from the Palliative and End of life Care Priority Setting Partnership survey, which was shared online and via Marie Curie hospices and nursing services from December 2013 to May 2014, and was completed by more than 1,400 people.
They honed in on 190 responses specifically relating to symptom management, hydration and nutrition for the latest study, the findings from which are published in the journal BMC Palliative Care.
This found pain was the most common area of symptom management raised by those who took part in the survey, with many bereaved relatives sharing upsetting or traumatic experiences of loved ones’ uncontrolled pain.
“Crucially this evidence should inform clinical practice in order to reduce distress”
Distressing accounts include one bereaved carer who said their dying mother felt like she was being “tortured”. “Mummy said to me that why was she suffering so when she had been good all her life and was this the Medieval age as she was being tortured?” the carer explained.
Several questioned the competence and confidence of healthcare professionals, including nurses and junior doctors, when it came to effectively managing pain, while others highlighted reluctance to prescribe or administer analgesia when someone was clearly suffering.
“One respondent described nurses refusing to give morphine to their dying relative,” noted the paper.
Others queried why healthcare professionals were seemingly wary of delivering desperately-needed pain relief.
“Why is it that people who are delegated tasks e.g. pain control are often frightened to do their job - with drugs often late or ineffective?” asked one member of the public.
“Why does it still take so long to get someone to come and give pain relief etc out of hours?”
Marie Curie nurse
Much of the worry about pain management at home related to out-of-hours care provision and whether patients could quickly access pain relief round the clock and at weekends.
“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,” said one Marie Curie nurse.
Bereaved carers also expressed “significant concern” about hydration and nutrition, describing extreme stress and anxiety around the denial of food and fluids and fears that it was “cruel” not to hydrate patients.
The survey data also reveals feelings of “guilt, anger and sorrow” about the deployment of the controversial Liverpool Care Pathway, which is now no longer used.
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“It still haunts me whether we did the right thing, and now that it has been stopped, I live with a terrible feeling of guilt that my suspicions were right,” said one carer.
She added: “It felt wrong to stop fluids but the doctor told me she would effectively drown if they were continued. My mother kept trying to speak to me but was too weak, and I couldn’t make out what she was saying. I am so afraid that she was asking for water.”
Meanwhile, some carers described instances where there was pressure to provide artificial hydration when it was against the patient’s or family’s wishes.
Several healthcare professionals who took part in the survey said they felt more research was needed to determine the nutritional and hydration needs of people towards the end of life to help provide reassurance to relatives.
Guidelines on hydration and nutrition at end of life were subsequently developed by the Royal College of Nursing in 2015, but the researchers said their impact on practice was “currently unknown”.
Annmarie Nelson, professor of supportive and palliative care and scientific director at the Marie Curie Palliative Care Research Centre, said the findings showed there was a need for more comprehensive research and guidance on effective symptom management at end of life.
“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,” she said.
“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,” she added.
Dr Jessica Baillie
Adult nursing lecturer Dr Jessica Baillie, also RCBC (Research Capacity Building Collaboration) Wales postdoctoral research fellow at Cardiff’s school of healthcare sciences, stressed the need for more research and funding to allow that to happen.
“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,” she said.
“Crucially this evidence should inform clinical practice in order to reduce distress for both patients and their families,” she added.