‘Decimated’ community teams affect end of life care quality
Lack of community care and funding means nine out of 10 nurses have seen dying patients stranded in hospital, a survey has found.
Lack of community care and funding means nine out of ten nurses have seen dying patients stranded in hospital, a survey has revealed.
An exclusive survey of more than 600 nurses and healthcare assistants by Nursing Standard and terminal illness charity Marie Curie highlights how over stretched community nurses are struggling to provide end of life care.
Not enough time
More than half (54%) said the numbers of patients stuck in the acute sector waiting to go home or to care homes has increased since 2017. Only 6% said they never saw people in the final months, weeks or days of life delayed in the acute sector.
Almost two thirds (65%) of respondents, one third of whom worked in the community, said they do not have sufficient time to provide good care for dying people, a similar proportion to last year.
of respondents said more end of life patients stuck in hospital than last year due to lack of community care
Many nurses in the community used the comments section of the survey to highlight difficulties they faced providing the level of care they aspired to.
A community palliative care specialist nurse told the survey: ‘People are dying at home without care, as there is none available.’
Staffing levels (38%) and time constraints (25%) were the main barriers identified by respondents, followed by lack of provision in the community (10%), including care homes, people’s homes and hospices.
Some patients were stranded in hospital, while others were discharged too swiftly, without the care packages and necessary equipment, nurses said.
Decline in number of nurses and training places
Dwindling numbers of community nurses and increasing numbers of patients with complex needs make providing good quality end of life care difficult. 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.
Figures from NHS Digital show that the number of district nurses fell from 7716 in 2010 to 4400 in September 2016. District nurse training places are also dropping sharply, with up to 50% of courses facing closure in 2018, according to the Queen’s Nursing Institute (QNI).
A community palliative care nurse specialist told the survey that community nursing teams had been ‘decimated over the past year’.
QNI chief executive Crystal Oldman says that community nurses are struggling as their numbers collapse.
'The community workforce needs a five year forward view plan in the same way that primary care and mental health workforces have recently had, but NHS England has indicated this will not happen,' Dr Oldman says.
of nurses do not have time to provide good care for the dying
‘These results are not surprising, but are deeply sad,’ she adds.
‘Unless resources are put into teams looking after patients in their own homes, then there will be delays to transfers of care and unplanned admissions where nurses may have been able to care for patients at home – if there is sufficient capacity. More people are arriving at emergency departments with chronic long-term conditions with frailty or concerns about end of life care, where they haven’t been able to get sufficient support in their own home. Our workforce has had a catastrophic loss of skills, and these skills keep patients safe.’
Community nurses routinely work longer than their hours to try and provide much-needed care, Dr Oldman says.
What some respondents said
Community nurse: ‘We provide exceptional end of life care, we always prioritise our end of life patients. The problem is overnight there are two nurses covering a huge area, and often people have to wait an unacceptably long time.'
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 fast. Patients often die with us in hospital before they’re able to get home.’
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’.
Community staff nurse says: ‘Experienced staff leaving the profession, too little support for newly qualified staff and increased workloads with no sign of improvement.’
Community palliative care nurse specialist: ‘Community nursing teams have been decimated in the last year and sickness has impacted on this, leading to a tired and demoralised workforce who haven’t got the time to sort complex problems and people have been admitted.’
MPs called for round-the-clock access to specialist palliative care in acute and community settings in a 2015 report, but nurses’ responses to the Nursing Standard and Marie Curie survey did not suggest this was happening.
Marie Curie executive director of nursing Dee Sissons says: ‘Nurses are doing their best under incredible pressure and community nurses are fundamental to the delivery of good end of life care. End of life care needs to be considered in the whole-system context. There needs to be better relationships, integration and ways of working across health, social care and the charitable sector.’
Providing night community nursing, particularly in rural areas, was highlighted as one difficulty in the survey. One community staff nurse who covers an entire county at night said: ‘We spend most of the night driving 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 community nurse said that patients have to wait an ‘unacceptably long time’ at night.
Additional winter pressures
decline in district nurse numbers over six years
Nurses were also concerned about the impact the difficult winter had on the NHS – which saw long waits for emergency care. Almost eight out of ten (77%) said it had had a negative impact, and 43% thought it was worse than last winter.
‘Due to better advanced care planning I feel we have had an increase in the number of patients wishing to remain at home and not be escalated to hospital,’ a district nurse said.
‘However the winter pressures mean we have also been caring for ill people at home who should be in hospital, but can’t be due to lack of beds. I feel this affected the support we have provided.’
Nurses raised concerns that patients were dying alone in care homes, hospices, homes and hospitals as there were too few staff to spend time with them.
But one district nurse said that no matter the difficulties, palliative care was always prioritised. ‘Despite winter pressures, end of life patients are always a priority for district nurses and so will have the time spent on them, to ensure they are managed well.’
RCN professional lead for end of life and palliative care Eleanor Sherwen said more support is urgently needed in the community. ‘We only have one chance to get end of life care right. 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.’