Analysis

Exclusive: Survey reveals how NHS pressures put further strain on end of life care

Exclusive figures obtained by Nursing Standard in an investigation in collaboration with Marie Curie highlight the intensifying difficulties nurses face in delivering dignified end of life care

Exclusive figures obtained by Nursing Standard in an investigation in collaboration with Marie Curie highlight the intensifying difficulties nurses face in delivering dignified end of life care

Nine out of ten UK nurses (94%) say they have seen dying patients stranded in hospital because of delays in providing the funding and care that would allow them to return to the community, an exclusive Nursing Standard–Marie Curie survey has found.

Six out of ten (62%) say it is a common occurrence and more than half (54%) think that the number of patients stuck in hospital while waiting to go home or to care homes has increased since last year.


Watch: Ken's story - Why Nursing Standard and Marie Curie's survey matters

 


The survey of more than 600 nurses and healthcare assistants by Nursing Standard and Marie Curie, a charity supporting patients and families through terminal illness, highlights how end of life care is being compromised by pressures on the NHS. This is the second year this survey has been conducted.

54%

of respondents say more end of life patients are stuck in hospital this year than last year due to lack of community care provision

Nearly two thirds of respondents (65%) say they do not have sufficient time to provide good care for dying patients, a similar proportion to last year. The main barriers identified were: staffing levels (38%) and time constraints (25%), followed by lack of provision in the community, including care homes, people’s homes and hospices.

Leaving a negative, lasting impact

A cancer care sister commented in the survey: ‘We are frequently understaffed, which is having devastating effects.’

Nurses are also concerned about the impact of the current winter pressures on the NHS and end of life care. Almost eight out of ten (77%) say it has had a significantly negative impact, and 43% think it is worse than last winter.


Nurses say they are concerned that patients are dying alone in care homes, hospices, homes and hospitals as there are too few staff to spend time with them. Others say that patients have died in emergency departments while waiting for transfers to wards or hospices.

One hospice nurse says: ‘I have unfortunately experienced patients without families dying alone in rooms due to staff shortages. I am often unable to attend to families right away following the death of a loved one due to needing to administer medications.’

In January, a Commons health committee report on the nursing workforce highlighted that, for the first time, more nurses are leaving the profession than joining it. Nurses have no time for breaks, are unable to eat and drink during shifts and often stay late after their shift ends, the report says.

The RCN has voiced concerns that the critical shortage of nurses is compromising care. Last year, the college estimated there were 40,000 nursing vacancies in England alone.


Anne Cleary

Marie Curie deputy director of nursing Anne Cleary (pictured), says the impact of not being able to provide a good standard of care is concerning for patients and nurses.

'The results illustrate the unsustainable pressure being placed on nurses while they shoulder the huge responsibility of caring for people at the end of their lives. Nurses go to work each day because they want to provide high quality care. Not being able to meet those standards, can then put real pressure on how they feel about their job, not to mention the  distress it causes for patients and their loved ones.

'Nurses have told us that they are caring for more and more people who are dying in hospital when don’t need to be there. Now, more than ever, we need to support them by investing in community care so that people can get the nursing they need at the end of their lives outside of hospitals, in a place of their choosing.'


Many nurses working in the community used the comments section of the survey to highlight the difficulties they are facing providing the level of care they aspire to deliver.

Some patients are stranded in hospital, while others are discharged too swiftly and without the care packages and necessary equipment, nurses say.

‘People are dying at home without care as there is none available’

Community palliative care specialist nurse responding to the survey

Dwindling community nurse numbers and increasing numbers of patients with complex needs are contributing factors. A King's Fund report last year warned that shortages in district nursing are preventing timely provision of pain relief to people near the end of their lives. 

65%

of nurses do not have time to provide good care for the dying

MPs called for round-the-clock access to specialist palliative care in acute and community settings in a 2015 Commons health committee report, but nurses' responses to the Nursing Standard–Marie Curie survey suggested this was not happening. The health committee report into end life care said that for too many people, end of life care was ‘unacceptably poor’.

Responding to the survey noted that providing night community nursing, particularly in rural areas, is a particular difficulty. One community staff nurse who covers an entire county at night says: ‘We spend most of the night driving enormous miles to see other patients. It is upsetting to know that a patient could be waiting for symptom management and I may be 30 or 40 miles away and cannot get to them in a timely manner.’

Another says patients have to wait an ‘unacceptably long time’ at night.


Eleanor Sherwen

RCN professional lead for end of life and palliative care Eleanor Sherwen says the results of the survey are disappointing but not surprising.

‘We only have one chance to get end of life care right,’ she says.

‘How people die remains in the memories of their loved ones for a long time. Nurses are doing their best in incredibly challenging circumstances but there is a lack of time.

'We need training and education for nurses, action on nursing recruitment and retention, particularly in the district nursing workforce, and a social care workforce who can support district nurses. Health and social services need to work together.’

High demand for more end of life care training

  • One quarter of nurses have never received training in end of life care, the Nursing Standard–Marie Curie survey reveals.
  • While almost 90% of respondents say they are involved in caring for dying patients, only 75% have received training in the area.
  • This is an improvement on last year’s survey, when only 58% said they had received any end of life care training.

 

Lacking confidence

More than one third of respondents say they are not confident in starting difficult conversations with patients who are in the final year or weeks of their lives. A care home staff nurse says: ‘The fact that l have not had training makes me less confident to bring the subject up.’

Four out of ten respondents have not received any training in difficult conversations at all.

Nurses are clearly desperate for more training in this area of care. More than 60% of those surveyed say they want more training in difficult conversations, pain relief and dealing with grief and loss.

When it comes to training received, only 61% have had difficult conversation education and less than half (49%) have been taught about grief and loss. More, 70%, have received education on pain and symptom management, and 78% in recognising when someone is dying.

Nurses' comments show the wide range of training undertaken; some have received no extra updates since their pre-registration courses, while others have developed advanced knowledge in palliative care.

Wishing for more

38%

of respondents say staffing levels are the main barrier to providing good end of life care

But many say they would like the opportunity to study further, and wish their employers offered more courses.

One palliative care nurse specialist commented that they had only received mandatory e-training, which was ‘woefully inadequate’.

An emergency department nurse manager, who cares for dying patients at least once a week, reports never having received specific training.

‘I have picked up most of these end of life care skills over the years with little professional input – younger nurses and doctors struggle tremendously with end of life discussions and protocols,’ the nurse says.

What nurses told the survey

Community nurse: ‘We provide exceptional end of life care, we always prioritise our end of life patients. The problem is the number of nurses overnight – there are two nurses covering a huge area, and often people have to wait an unacceptably long time.'

Nursing home nurse: ‘Too many other tasks that must be done in the shift to give you enormous time with people who are dying. It’s really sad if someone doesn’t have any family with them at this time. I really feel the nurse should be there instead so they don’t risk dying alone.’

Oncology advanced nurse practitioner: ‘Not enough hospice care or appropriate nursing home care to give people real choice.’

Acute trust staff nurse: ‘Fast-track services to get patients home where they want to die are not very fast. Patients often die with us in hospital before they’re able to get home.’

Community palliative care specialist nurse: ‘People are dying at home without care as there is none available.’

District nurse clinical team leader: ‘Poor discharge planning, lack of handover to community teams and poor prescribing of end of life medication in the acute hospitals.'

Surgical ward staff nurse: ‘Patients wait on trolleys in the emergency department for hours, even days, due to bed shortages, only to be transferred to a ward with staff shortages. It is difficult to provide a high level of care when you are trying to focus on so many things at once. It should be a privilege to nurse a person in their final days of life. Sometimes we might be the only people they have.’

 

End of life care resources

RCNi and Marie Curie offer a wide range of resources to help nurses deliver the best possible care for people who are in the final weeks and days of their lives.

 

Marie Curie

RCNi Learning Modules

Our interactive CPD learning modules are all accredited by the Royal College of Nursing.

 


Erin Dean is a freelance health journalist

 

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