Led by the Royal College of Physicians (RCP) and funded by Marie Curie Cancer Care and Public Health England, the recommendations were drawn up by the National Care of the Dying Audit for Hospitals (NCDAH), which had assessed the quality of care received by 6,580 people who died in 149 hospitals in England during May 2013.
Lack of communication
The NCDAH used responses from questionnaires completed by 858 bereaved relatives or friends about the treatment of their relative, their involvement in decision-making, and the support available to them.
The auditors also assessed the organisation of care, including the availability of palliative care services, numbers of staff members, training, and all the responsibilities for care.
Dr Kevin Stewart, Audit Steering Group chairman and clinical director of the RCP’s Clinical Effectiveness and Evaluation Unit (CEEU), said: ‘Although some aspects of care are good in hospitals in England, I am deeply concerned that some hospitals are falling short of the excellent care that should be provided to both dying people and those important to them. In particular, communication with patients and their families is generally poor.
‘It is disappointing that hospitals don’t seem to recognise this as an important issue, not just for those experiencing it in their own lives, but for the wider public.’
In terms of the quality of care, the audit found that for 87% of patients, healthcare professionals had recognised they were in the last days of life, but had only told 46% of patients capable of discussing this; communication with family and friends about the death of their relative/friend occurred in 93% of the cases; most patients (63-81%) had medication prescribed ‘as required’ for the five key symptoms often experienced near the end of life – pain, agitation, noisy breathing, difficulty in breathing, and nausea and vomiting; 59% of patients were clinically assessed to see if they needed artificial hydration; 45% were clinically assessed to check whether they needed artificial nutrition.
Only 21% of the patients capable of having the conversation were asked about their spiritual needs; however, 87% were assessed five or more times in the final 24 hours of life, which falls in line with the national guidance.
Ten Recommendations to improve quality
A survey of bereaved relatives revealed that 76% were very or fairly involved in decisions about care and treatment of their family member, and 63% reported that the overall level of emotional support given by the healthcare team was good or excellent.
However, within hospitals only 21% of sites had access to face-to-face palliative care services seven days a week; mandatory training in care of the dying was only required for doctors in 19% of Trusts and for nurses in 28%, despite national recommendations that this be provided; though 47% of Trusts had a formal structured process to capture views of bereaved relatives.
Based on the findings, the audit report made the ten recommendations aimed at driving up quality of care for people who are about to die in hospital.
These include providing face-to-face specialist palliative care service from at least 9am to 5pm, seven days a week; making education and training in care of the dying mandatory for all staff caring for dying patients; all hospitals should undertake a local audit of care of the dying at least annually; the decision that the patient is in the last hours or days of life should be made by the multidisciplinary team, and pain control and other symptoms in dying patients should be assessed at least four hourly, with medication given promptly if necessary.
In addition, hospitals should organise having a pastoral care team to ensure that the spiritual needs of dying patients as well as any need among their relatives and friends can be provided when wanted.
A need for decisive action
Marie Curie chief executive Dr Jane Collins said: ‘There’s only one chance to get people’s care at the end of their lives right, but we know that our hospitals do not always provide the high quality care and dignified death that we all have the right to expect. The recommendations of the audit are clear. In particular, more needs to be done to improve governance, staff training, access to pastoral and specialist palliative care teams. We need everyone involved to take decisive action to ensure dying people and those close to them get the care and support they need and deserve.’
Dr Jane Collins, who joined Marie Curie Cancer Care as Chief Executive in September 2012, was previously Chief Executive of Great Ormond Street Hospital (GOSH) for Children for 11 years, having been the medical director of the hospital for two years. Dr Collins qualified in medicine at Birmingham University and became a consultant paediatric neurologist at Guy’s Hospital in 1991 and GOSH in 1994. In both her clinical career and management career, she has focused on improving the quality and safety of care, as well as helping to support new research and treatment programmes.