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End-of-life care audit shows room for improvement in provision of 24-7 palliative care services

The results of the new end of life care audit run by the Royal College of Physicians (RCP) show that there has been steady progress in the care of dying people since the previous audit carried out in 2013 and published in 2014.

The audit, funded by NHS England and Marie Curie, and commissioned by the Healthcare Quality Improvement Partnership (HQIP), is the first to be carried out following the official withdrawal of the Liverpool Care Pathway (LCP) in 2014, although some hospitals had already started to replace the LCP with local policies before the previous audit.

The new audit is a much more detailed investigation of the care of dying people against the five priorities of care established in ‘One Chance to Get it Right’, but includes some similar questions to the 2013 audit, to allow direct comparisons.

Overall, the results show that there have been documented improvements in:

  • Recognition that patients are dying and that they have received holistic assessments of their care
  • The amount and quality of communication with patients who are able to communicate, and with those identified as important to them
  • Symptom control for the dying person
  • Commitment to education, training, reporting and continuous improvement in caring for dying people

However, there is room for improvement, particularly in the provision of palliative care services 24-7; the audit also shows how some hospitals did well in many areas but not in others.

The clinical part of the audit collected data from 1-31 May 2015 from the records of 9,302 patient records across 142 NHS organisations, mostly acute hospital Trusts. Participating units were asked to submit up to 80 patient records, so the final number is not the total number of people dying in hospital during that month.

In addition, an organisational audit collected data on the structure and process of care delivery, including the number of specialist palliative care beds, staffing, education and training, and approach to care of the dying. Selected results follow with 2013 comparators where available:

For the dying person:

  • 93% of patients whose death was predictable had documentation that they would probably die (87% in 2013) and in 76% of cases a senior doctor was involved in the recognition of dying
  • For half the patients recognition of dying occurred within 5 days after admission and for half this occurred less than 34 hours before death. Excluding those who died within the first 24 hours of admission, for half of patients, death occurred less than 41 hours after they were recognised to be dying (increase over the comparative figure of 36 hours in 2013)
  • In only 25% (19% in 2013) of people recognised as likely to die was there documented evidence of a discussion with a health care professional about their likely imminent death – for 63.4% of patients the discussion wasn’t possible due to a variety of reasons such as unconsciousness, dementia, and reduced capacity to understand the conversation, leaving 12% of cases undocumented
  • Of the key symptoms that could be present around the time of death, there was documented evidence that pain was controlled in 79%; agitation/delirium in 72%; breathing difficulties in 68%; noisy breathing/death rattle in 62% and nausea/vomiting in 55%. There are no direct comparison statistics for 2013 for these measures
  • There was documented evidence that anticipatory medication (prn) for possible future symptoms was prescribed for the key symptoms: for pain 75% of cases (81% in 2013); agitation/delirium 69% (72% in 2013); breathing difficulties and nausea/vomiting 66% (65% and 68% respectively in 2013); noisy breathing/death rattle 62% (no comparative data in 2013). (The reductions in anticipatory prescribing for future possible symptoms are not clear but may be seen as an improvement, in line with the recommendation of the new NICE guideline** for care of the dying adult which asks for individualised, not blanket, prescribing)
  • 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. In 71% there was documented evidence of assessment of the dying person’s need for clinically assisted hydration (CAH) (59% in 2013). CAH was in place during the last 24 hours before death in 43% of patients (29% in 2013)
  • It was recorded that 32% of patients had opportunities to have their concerns listened to and, of these, 94% were given the opportunity to have questions answered about their concerns
  • 73% of case-records (excluding sudden deaths and cases where the patient had died less than 24 hours after admission) showed that there had been an holistic assessment of the patient’s needs with a view to making an individual plan of care.

For those people important to the dying person:

  • In 95% of the cases (93% in 2013) where it had been recognised that the patient was likely to die, there was documented discussion with those nominated as important to the dying person
  • It was recorded that nominated person(s) important to 80% of patients had opportunities to discuss the patient’s condition with a senior healthcare professional but the discussions were not always recorded
  • 54% of case records showed that the needs of persons important to the patient were asked about, a significant improvement since the 25% result from 2013. Of these, 62% had specific needs identified
  • In 38% of cases there was documented evidence in the last episode of care that the patient’s needs had been discussed with the people important to them
  • Excluding the cases of sudden or unexpected deaths, in 84% of cases the people important to the dying patient were notified of the imminent death. Out of those notified, 63% were recorded as being present at the time of death. There was documented evidence of care and support of the patient’s family at the time of and immediately after death in 65% of cases, but with wide variance between different sites.

Organisational element key findings:

  • Almost all (97%) of Trusts had their own specialist palliative care service; 70% also used a specialist palliative care (SPC) service funded and based outside the Trust. 13% of Trusts (18/142) reported that they had specialist palliative care beds
  • There was a median of 1.08 specialist palliative care consultant WTE (whole time equivalent) filled posts (for direct clinical care of hospital inpatients) per 1000 adult beds; and a median of 5.08 clinical nurse specialist WTE filled posts per 1000 adult beds
  • The availability of SPC staff around the clock varied widely, but only 11% (16) of trusts offered a 24/7 face to face service (2% in 2013). Thirty seven per cent (53/142) of sites had face to face access to palliative care services Monday to Sunday, 9 to 5pm. The availability of out of hours telephone service was comprehensive with the majority of services providing this every day of the week
  • Trusts which had bedded units run by specialist palliative care consultants were more likely to have a higher level of out-of-hours doctor service for dying patients, but 26 Trusts did not indicate any level of provision of face to face specialist palliative care involving doctors, at any time
  • 96% of Trusts had a formal in house continuing education programme on end of life care. (In 2013 mandatory training was only required for doctors in 19% of Trusts and 28% of qualified nurses)
  • The 2014 NCDH report (on 2013 data) recommended that all Trusts should have both a named and lay member on the Board, responsible for End of Life Care. 98% have achieved the former (53% in 2013), 49% the latter
  • 65% of Trusts had undertaken a formal audit of care for patients in the last hours or days (56% in 2013), and 79% fed audit results back to the Trust board
  • 99-100% trusts stated that they had guidance on prescribing medications for each of the 5 key symptoms that can be present in patients in the last days/hours of life. 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
  • 80% of Trusts sought bereaved relatives’ and friends’ views (47% in 2013)

Emeritus Professor Sam Ahmedzai, chair of the RCP End of Life Care Audit steering group, said: “The period 2013 to 2015 saw momentous changes in how we look after dying people 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.

“It is heartening that the results of the latest Royal College of Physicians audit largely reflect these changes positively in terms of improved statistics of care for people in the last days of life who were dying in the month of May 2015 in English hospitals. There is still room for improvement, notably in providing 24/7 access to specialist palliative care for those with difficult problems. 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.”

Dr Kevin Stewart, medical director of the RCP’s Clinical Effectiveness and Evaluation Unit, said: “It is encouraging that there have been sustained improvements in many aspects of the care of those dying in hospitals in the last couple of years, especially when the NHS as a whole has been under such pressure in this time. We recognise that much of this is as a result of a lot of hard work by front line clinicians.

“However, we are disappointed that there are still major deficiencies in the provision of specialist palliative care at nights and weekends by many Trusts; patients and their families deserve the same level of service whatever the day of the week.”

Dr Adrian Tookman, Clinical Director at Marie Curie, said: “It’s clear from the report that there has been a real effort to improve care of the dying in hospitals over recent years. Despite this, we can’t ignore the fact that the vast majority of dying people and those close to them, still have limited or no access to specialist palliative care support when they need it in hospital.  This is not right, nor good enough.

“Care of the dying has no respect for time, so if we are to deliver a consistent 7-day service by 2020, it is critical that funding is directed towards recruiting and training doctors and nurses to provide specialist care now. Otherwise, the problem will only get worse as more people die each year.

“Round-the-clock availability of specialist palliative care in hospitals should be the norm. When this care is missing, people suffer, and this suffering can live long in the memory of those they leave behind.”

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