A new audit on the provision of care for people dying in hospitals has found significant variations in care across hospitals in England. While every patient has different needs, and some will need more pain relief than others for example, there should be no variation in the quality and provision of services, or training in the care of people dying in hospitals. The audit shows that major improvements need to be made to ensure better care for dying people, and better support for their families, carers, friends and those important to them.
Around half of all deaths in England happen in hospitals. Hospitals have a responsibility to provide high quality care for patients in their final days of life, and support families, carers and those close to them. The National Care of the Dying Audit for Hospitals was led by the Royal College of Physicians (RCP) in collaboration with the Marie Curie Palliative Care Institute Liverpool (MCPCIL), and funded by Marie Curie Cancer Care and Public Health England.
While previous audits had been based on the goals of care within the Liverpool Care Pathway for the Dying Patient (LCP), the new audit sampled the care of dying people in hospital, regardless of whether they were supported by the LCP or other care pathways or frameworks, and included more hospitals than the previous audits. The questions were also changed from previous audits to reflect the recommendations of the Neuberger Review of the Liverpool Care Pathway. The new audit assessed:
- The quality of care received directly by 6580 people who died in 149 hospitals in England between 1 May and 31 May 2013. This was done by reviewing the case notes of a sample of patients and is not the total number of people who died in hospital during this time. The audit only covered expected deaths.
- Results from questionnaires completed by 858 bereaved relatives or friends, asking about the treatment of their relative, their involvement in decision making, and the support available to them. The questionnaire was distributed by some hospitals involved in the audit, and the results were aggregated nationally
- The organisation of care including availability of palliative care services, numbers of staff, training, and responsibilities for care.
The results provide data for hospitals to identify good and poor practice, and enable them to make changes that will enhance learning and improve care for dying patients. They also provide commissioners with an evidence base to make commissioning decisions.
Findings on the quality of care
- For most patients (87%), healthcare professionals had recognised that they were in the last days of life, but had only told less than half (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, on average 31 hours before their relative or friend died
- 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 (shortness of breath or dyspnoea), and nausea and vomiting. Not all patients need the medication, and in the last 24 hours of life 44% received pain relief and 17% medication for shortness of breath
- 59% of patients were clinically assessed to see if they needed artificial hydration, but discussions with the patient was only recorded with 17% of patients capable of having the conversation. The situation was discussed with more than twice as many relatives and friends – 36%
- Artificial hydration was in place for 29% of patients at the time of death
- 45% of patients were clinically assessed to see if they needed artificial nutrition, but discussions with the patient was only recorded with 17% of patients capable of having the conversation. The situation was discussed with 29% of relatives and friends
- Artificial nutrition was in place for 7% of patients at the time of death
- Only 21% of patients capable of having the conversation were asked about their spiritual needs, and only 25% of relatives/carers asked about their own needs
- Most patients – 87%, were assessed five or more times in the final 24 hours of life, in line with national guidance
Findings from the bereaved relative’s survey
- 76% of those completing the questionnaire reported being very or fairly involved in decisions about care and treatment of their family member, and 24% did not feel they were involved in decisions at all
- Only 39% of bereaved relatives reported being involved in discussions about whether or not there was a need for artificial hydration in the last 2 days of the patient’s life. For those for whom the question was applicable, 55% would have found such a discussion helpful
- 63% reported that the overall level of emotional support given to them by the healthcare team was good or excellent. 37% thought it only fair or poor.
- Overall, 76% felt adequately supported during the patient’s last 2 days of life; 24% did not
- Based on their experience, 68% were either likely or extremely likely to recommend their Trust to family and friends. 8% were extremely unlikely to do so.
Findings on the organisation of care
- Only 21% of sites had access to face-to-face palliative care services, 7 days per week, despite a longstanding national recommendation that this be provided; most (73%) provided face-to-face services on weekdays only
- 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. 82% of Trusts had provided some form of training in care of the dying in the previous year; 18% had not provided any
- 53% of Trusts had a named Board member with responsibility for care of the dying; 47% did not. In 42% of Trusts care of the dying had not been discussed formally at the Trust Board in the previous year and only 56% of Trusts had conducted a formal audit of such care, despite previous recommendations that this be carried out at least annually
- Only 47% of Trusts reported having a formal structured process in place to capture the views of bereaved relatives or friends prior to this audit.
Based on these findings, the report makes 10 key recommendations aimed at driving up the quality of care for dying people across all Trusts. The recommendations reflect key themes in the evidence base on care for dying people and those in the Neuberger Review. The recommendations are also in keeping with the work of the Leadership Alliance for the Care of Dying People, a partnership of organisations brought together to produce a system-wide response to address the issues raised by the Neuberger Review. The Royal College of Physicians, Marie Curie and Public Health England are members of the Alliance.
- Hospitals should provide a face-to-face specialist palliative care service from at least 9am to 5pm, seven days per week, to support the care of dying patients and their families, carers or advocates
- Education and training in care of the dying should be mandatory for all staff caring for dying patients. This should include communication skills training and skills for supporting families and those close to dying patients
- All hospitals should undertake local audit of care of the dying, including the assessment of the views of bereaved relatives, at least annually
- All Trusts should have a designated Board member and a lay member with specific responsibility for care of the dying. Trust Boards should formally receive and discuss the report of local audit 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 documented by the senior doctor responsible for the patient’s care. This should be discussed with the patient where possible and appropriate, and with family, carers or other advocate
- Pain control and other symptoms in dying patients should be assessed at least four hourly and medication given promptly if necessary. Interventions should be discussed with the patient where possible and appropriate, and with family, carers or other advocate
- Decisions about the use of clinically assisted (artificial) nutrition and hydration are complex and should be taken by a senior experienced clinician supported by a multidisciplinary team. They should be discussed with the patient where possible and appropriate, and with family, carers or other advocate
- Hospitals should have an adequately staffed and accessible pastoral care team to ensure that the spiritual needs of dying patients and those close to them are met.
Dr Kevin Stewart, chair of the Audit Steering Group 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 this in their own lives, but for the wider public. Everyone wants to know that if they are in the same situation, their needs and those of their families, friends and those important to them will be met, with clinically appropriate treatment, sensitivity and compassion.
Professor John Ellershaw, director of the Marie Curie Palliative Care Institute in Liverpool, said:
It is unacceptable in the current day and age that hospitals are failing patients, and their families, in the care they receive at the end of their life. Too many patients are dying badly in our hospitals when we know how to care for them well.
If some hospitals can provide good outcomes in care then all hospitals can. This audit provides a clear challenge to those hospitals that are failing to provide best care for dying people to look at why they are failing and improve.
Dr Jane Collins, chief executive of Marie Curie, 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.
Marie Curie is the principal funder of this National Audit which underlines the importance of gathering robust data to enable a regular assessment of the performance of hospitals. We are calling on NHSIQ to secure continued funding for this important work in the future.