Nursing Standard and Marie Curie carried out the study among 996 UK-registered nurses and healthcare assistants. The survey focused on asking nurses about their experiences of caring for dying patients.
As well as lack of time, the survey found that the majority of nurses often saw or heard of unnecessary delays to the care of dying patients, because of delays in funding or provision of care in community settings like patients’ homes and hospices. Fifty-three percent of respondents said they had “often” seen or heard of this happening, six per cent said they “always” did.
One of the respondents commented, “the biggest frustration in my job is not being able to get patients who are coming to the end of their lives out of hospital in time. I find it distressing and it is hard to switch off when I get home because it isn’t right.”
Barriers to care
They stated that the barriers preventing them from providing adequate care are lack of staff (68 per cent), time constraints (47 per cent), lack of palliative care support (33 per cent), lack of provision in community services (33 per cent), funding (29 per cent), lack of integration of health and social care services (27 per cent), lack of emotional support for staff (20 per cent), and lack of emotional support for patients (17 per cent).
While 67 per cent of respondents said they their roles included caring for dying patients, almost half (40 per cent) hadn’t received any training in this area. Despite this the survey showed that most were confident about talking to patients about their wishes for end of life care, with 32 per cent saying they’re “very confident” and 58 per cent “fairly confident”. Additionally 65 per cent of nurses said the patients’ wishes for their place of death were “often” fulfilled.
Confident but time-poor
Dee Sissons, the Director of Nursing at Marie Curie, commented, “the findings show the challenges of providing high quality care to people towards the end of life in the extremely pressured NHS. Whilst it is encouraging to see that many nurses feel confident about talking to patients about their needs and wishes, we can’t dispute the evidence that the majority of nurses don’t feel that they have time to provide high quality care to their dying patients. It is also worrying to see that many dying patients with limited time left are stuck unnecessarily in hospital due to delays in funding and community provision to support them.
“Caring for people at the end of life can be emotionally draining but also incredibly rewarding. To provide the best possible care for patients, staff must have the time to develop their skills and access appropriate and timely training and support from the very start.”
The importance of these findings were echoed by Graham Scott, Editor of Nursing Standard, who said, “the way we care for patients at the end of life is a barometer of the quality of care in the health sector as a whole. Nurses are telling us they are under immense strain and the service is reaching breaking point. The fact that vulnerable dying patients, and their families, are suffering as a result is a national disgrace.
“A first step towards addressing the problem must be to recruit more staff to free up nurses’ time so they can give the high quality care they so desperately want to give.”
“Hospitals may not always be the best or preferred place for dying people.”
Commenting in response, Dr Ros Taylor, MBE Clinical Director, at national hospice care charity Hospice UK, said, “the findings of this survey are deeply concerning and highlight how nurses face huge barriers to providing the high quality care that dying people need and deserve.
“Nurses are more stretched than ever before, and many are really distressed by not having the time or confidence to care. Hospitals may not always be the best or preferred place for dying people, so it is vital there is more support available in the community and that this is available faster.
“Hospice UK is leading a new project, funded by NHS England, to identify ways in which hospice-led services could better support dying people and help ensure they are cared for in the place of their choice – a hospice or at home – at the end of life.
“Many hospices are also working in local partnerships to improve the confidence and skills of nurses and doctors caring for the dying in hospitals, focusing on symptom control and better communication with patients and their families to discover what really matters to them at the end of life.”
Marie Curie has launched a free online resource to help health and social care staff who don’t have specialist training in palliative care. Topics include managing and alleviating symptoms, providing care for people with specific conditions, focusing on the needs of the individual, and helping people during their final days. The survey findings can be downloaded from the Marie Curie website (pdf).