Nurses struggle to provide good end of life care
Lack of time, training and staff take its toll on quality palliative care, an exclusive survey has found.
- End of life care is being compromised by pressures on the NHS
- Two thirds of nurses surveyed said they did not have time to provide good end of life care
- Dying people are being discharged too swiftly without necessary care packages
Nurses are struggling to provide good end of life care as lack of time, training and staff take its toll, an exclusive survey has found.
The survey of more than 600 nurses and healthcare assistants (HCAs) by Nursing Standard and terminal illness charity Marie Curie has highlighted how palliative care is being compromised by pressures on the NHS.
Cancer nurses responded by calling for more time to care for the dying, better communication and a greater understanding from health professionals and the public about end of life care.
Almost two thirds (65%) of respondents, who worked across all settings, said they do not have sufficient time to provide good care for the dying, a similar proportion to last year. Staffing levels (38%) and time constraints (25%) were the main barriers identified, followed by lack of provision in the community, including care homes, people’s homes and hospices.
A cancer care sister told the survey: ‘We are frequently understaffed which is having devastating effects.’
The findings of the survey appear to echo the inadequate experiences of many dying cancer patients reported by Macmillan Cancer Support in December last year. The charity looked at the experiences of cancer patients across England by analysing data from the past five years covering more than 500,000 people, as well as taking first-hand testimonies from patients, families and staff.
The report, The Final Injustice, shows that, for too many, end of life is plagued by repeated emergency visits to hospital, a lack of support in the community, inadequate pain relief and little choice over where they will die.
Respondents who said that staffing constraints are the biggest barrier to good end of life care
Nine out of ten nurses told the survey they have seen dying patients stranded in hospital due to delays in funding and care preventing their return to the community. More than half (54%) said the numbers of patients waiting to go home or to care homes has increased since last year.
Some patients were stranded in hospital, while others were discharged too swiftly and without care packages and necessary equipment, district nurses said. Providing good care and pain relief was particularly challenging at night, nurses said.
Nurses were also concerned about the effect this year's winter pressures has had on end of life care. Almost eight out of ten (77%) said it had a significantly negative impact, and 43% thought it has been worse than last winter.
Cancer nurses told Cancer Nursing Practice about the challenges they face.
‘Nurses and HCAs on the wards are facing great pressures,’ says Kelly Critcher, a clinical nurse specialist in palliative care in London. ‘They are barely able to complete all of their allocated tasks each day without throwing in the extra care and time needed for someone who is dying. This is a tough time.’
Nurses told the journal they want to see a change in culture among nurses, doctors and the public that makes it easier to discuss end of life care at an earlier point. There also needs to be greater recognition that care of the dying is part of most healthcare professionals’ work.
‘Offering the opportunity for early discussions to patients who are likely to be in their last year of life, including those with multiple co-morbidities and those who are becoming increasingly frail, will give more people the opportunity to discuss their priorities and preferences when they have capacity to do so and can, therefore, improve care at the end of life,’ says Ms Critcher.
Guy’s and St Thomas’ NHS Foundation Trust oncology matron Louise Farrow agreed that time pressures made good end of life care difficult in the acute setting. ‘The problem on the wards is that end of life patients are not the only patients we are caring for, we also have acutely unwell people who are equally in need of time.’
Respondents who had not received any training in end of life care
Training was also a major concern among the nurses surveyed, with many desperate for more. One quarter of nurses have never received training in end of life care, the survey found. While almost 90% of respondents said they were involved in caring for dying patients, only 75% had received training.
More than 60% of nurses said they wanted more training in difficult conversations, pain relief and dealing with grief and loss.
One staff nurse on a cancer care ward, who cares for dying patients every day, has never received any specialist training. ‘Everything was learned on the job – no specialist training or study days. This was tough when I started on the ward.’
Ms Farrow says ongoing training and education is essential for good care. ‘There is still a lot of uncertainty about what constitutes end of life and recognising the ceilings of care early on and ensuring that they are put in place. Recognising that when patients are coming to the end of their life, it is not that we stop interventions and treatment, but quality of life is prioritised over quantity.’
She calls on hospitals to provide a better setting for dying patients, recognising that is where the most die.
End of life units with single rooms could provide more peace and dignity, she says. ‘Nine times out of ten hospices do not have beds available and by the time one comes up the patient has often deteriorated further. Patients at the end of life require high levels of care and psychological support, which the community services are often not equipped to manage. Most people die in hospital – and that can be the right place.’
Respondents who said they did not have enough time to provide good care for people who were dying
Sandra Campbell, nurse consultant for cancer and palliative care and clinical lead for palliative and end of life at Health Improvement Scotland, says that good communication is the basis of good end of life care.
The most important change to improve care would be to ‘increase communication and help staff to be kind to each other and patients, and be compassionate’, she says. ‘Find out what is important to the person and understand the fundamentals around care planning and holistic assessment. It is not just about practical needs, but also the psychological, and what that means to the patient and their family.’
What nurses say about end of life care
Critical care staff nurse: ‘Received no training. Often actively discouraged by medical staff to initiate end of life care conversations, as the patients are very unwell. Doctors view these conversations as having a negative effect.’
Community palliative care nurse specialist: ‘Community nursing teams have been decimated in the past year and sickness has had an impact on this leading to a tired and demoralised workforce who haven’t got the time to sort out complex problems.'
Hospice palliative care nurse specialist: ‘The hospice is admitting patients who are receiving treatments such as antibiotics, drains and labour intensive procedures, which should be provided in an acute setting or not at all. I don't think we are providing patients with expert opinion on palliative care, meaning we are lengthening their lives, but not the quality of life. Better conversations could be had about futile interventions and making the most of the time patients have left.’
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