There has been steady progress in the care of dying people over the past couple of years, despite instability in national guidance, according to major audit by the Royal College of Physicians.
The audit, funded by NHS England and the charity Marie Curie, is the first to be carried out following the official withdrawal of the Liverpool Care Pathway in 2014.
It represents a detailed investigation of end of life care against the five priorities established in One Chance to Get it Right framework that was published in the wake of the pathway’s withdrawal – but includes some similar questions to a previous audit in 2013.
Overall, the audit found documented improvements in recognition that patients were dying and received holistic care assessments, communication with patients, symptom control, and commitment to staff education and training.
However, there was room for improvement, particularly in the provision of palliative care services 24-7, and the audit also showed how some hospitals did well in many areas but not in others.
The audit was based on data collected during May 2015 and from the records of 9,302 patients across 142 NHS organisations.
In addition, an organisational audit collected data on the structure and process of care delivery, including the number of specialist palliative care beds, staffing levels, education and training.
According to the findings, 93% of patients whose death was predictable had documentation that they would probably die, compared with 87% in 2013.
“It is critical that funding is directed towards recruiting and training doctors and nurses to provide specialist care now”
For half the patients recognition of dying occurred within five days after admission and for half this occurred less than 34 hours before death, said the audit report, which wa spublished today.
In only 25% of people recognised as likely to die was there documented evidence of a discussion with a healthcare professional about their likely imminent death – for 63.4% the discussion was not possible due to reasons such as unconsciousness, dementia or reduced capacity to understand the conversation.
Of the key symptoms that could be present around the time of death, there was evidence that pain was controlled in 79%, agitation or delirium in 72%, breathing difficulties in 68%, noisy breathing or “death rattle” in 62%, and nausea or vomiting in 55%.
In 67% of cases there was documented evidence that the patient’s ability to drink had been assessed in the last 24 hours of life. In 45% of cases there was evidence that the patient had been supported to drink in the last 24 hours.
Meanwhile, in 71% there was documented evidence of assessment of need for clinically assisted hydration and it was in place during the last 24 hours before death in 43% of patients.
“The period 2013 to 2015 saw momentous changes in how we look after dying people in England”
The audit report noted that 32% of patients had opportunities to have their concerns listened to and 73% of records showed there had been a holistic assessment with a view to making an individual care plan.
The organisational part of the audit found 97% of trusts had their own specialist palliative care service and there was a median of 5.08 whole-time equivalent clinical nurse specialist posts per 1,000 adult beds.
The availability of specialist palliative care staff around the clock “varied widely”, but the availability of out of hours telephone service was “comprehensive”.
In 96% of trusts there was a formal in-house continuing education programme on end of life care. In 2013 mandatory training was only required for registered nurses at 28% of trusts.
Audit finds ‘steady progress’ in care of dying people
Most trusts had policies for ensuring patient comfort and dignity, and for offering family and friends access to the body after death and a prayer room
Emeritus Professor Sam Ahmedzai, chair of the RCP’s audit steering group, said the period 2013-15 had seen “momentous changes” in approaches to end of life care in England.
“These include the phasing out of the ‘one-size-fits-all’ Liverpool Care Pathway and the introduction of individualised care, with an emphasis on assessing holistic needs, respecting the wishes of dying people and those important to them, including maintaining hydration where desirable,” he said.
He described it as “heartening” that the audit results largely reflected the hoped for changes.
“There is still room for improvement, notably in providing 24/7 access to specialist palliative care for those with difficult problems,” he said.
“Our findings also show where some trusts need to improve in some areas, up the level of others to provide consistently high quality care for the dying,” he added.
Audit finds ‘steady progress’ in care of dying people
Dr Adrian Tookman, clinical director at Marie Curie, highlighted that, despite improvements, the “vast majority” of dying people still had limited access to specialist palliative care support in hospital.
“Care of the dying has no respect for time, so if we are to deliver a consistent seven-day service by 2020, it is critical that funding is directed towards recruiting and training doctors and nurses to provide specialist care now,” he said.
“Round-the-clock availability of specialist palliative care in hospitals should be the norm,” he said. “When this care is missing, people suffer, and this suffering can live long in the memory of those they leave behind.”
Claire Henry, chief executive of the National Council for Palliative Care, said ““This report shows how things have improved, but also that there are still unacceptable variations in the care people receive in their final days and hours.
“We are glad there has been improvement in key areas, and the welcome the call for further ongoing development and training for staff,” she said. “But this report also demonstrates the importance of making our end of life care plans early and clearly.”