Review of hospital palliative care services reveals end of life lottery
The now-defunct Liverpool Care Pathway has been replaced by NHS provision that is patchy and lacking in specialist clinicians, writes Chris Longhurst.
The first major examination of end of life hospital care since the Liverpool Care Pathway was abandoned found inconsistent quality of care in the NHS.
It identifies examples of best practice, but also reveals shortcomings in specialist provision and a drop-off in care quality out of hours.
The Royal College of Physicians (RCP) led the End of Life Care Audit, which reviewed 9,302 deaths at 142 hospital trusts in England in 2015.
The audit, published in March, found inconsistency in end of life care, with hospitals criticised for their lack of specialist palliative services.
RCP clinical effectiveness and evaluation unit medical director Kevin Stewart says: ‘It is encouraging there have been sustained improvements in many aspects in the past couple of years.
‘However, we are disappointed there are still major deficiencies in specialist palliative care at nights and weekends in many trusts. Patients and their families deserve the same level of service whatever the day of the week.’
The audit makes recommendations based on best practice the reviewers, including RCN end of life care lead Amanda Cheesley and RCN nutrition and hydration group member Giselle Martin-Dominguez, observed.
A high-performing provider is the Christie NHS Foundation Trust in Manchester and its specialist cancer hospital The Christie.
In all of its audited cases, patients were given an opportunity to have their concerns listened to and in 95% of cases, the needs of people important to the patient were considered.
Clinical nurse specialist Lisa La Mola is part of a seven-strong supportive care team that includes a nurse consultant and two consultant physicians.
Only 37% of trusts in the audit were shown to provide such a service.
Members of the team are available seven days a week from 9am to 5pm for face-to-face discussions with patients about their care plans and any concerns they might have. There is an out-of-hours telephone support service.
Ms La Mola is proud of how the team has been integrated into all the hospital’s inpatient wards as well as the outpatients department.
She says the supportive care team is ‘changing the face of palliative care’, and that includes changing the team’s name from ‘palliative care team’.
She explains: ‘Everyone associated palliative care with “the end” and as a result people feared it meant the health service was giving up on them.
‘Instead, we have shown that by starting intervention early we can ensure a higher quality of care that continues when end of life is reached.’
The Christie responded to criticisms of the LCP by introducing a staff education programme in which every member of ward staff attends a session on end of life care.
Although Ms La Mola admits it is not an easy subject to deal with or talk about for many nurses, she considers it a ‘privilege to be part of such an important moment in a person’s life and to make things better for them’.
Royal Liverpool and Broadgreen University Hospital NHS Trust also scored well in the audit report.
It provides formal in-house training in areas including communication skills for the multidisciplinary team.
Patients’ care needs are assessed and discussed – either in person or with a friend or family member – and staff who come into contact with the patient are made aware of these.
Assistant chief nurse for medicine and end of life nursing and innovation lead Deborah Murphy believes the audit must be repeated regularly.
She says training and development for all nurses, doctors and allied health professionals is the key area hospitals need to look at to improve their audit ratings.
The importance of advance care planning
End of life care audit finds gaps in essential patient information
Recommendations in the Royal College of Physicians audit focus on advance care plans and the need to assess and discuss individuals’ requirements as soon as death is identified as being imminent.
Advance care plans should cover every aspect of care from symptom and pain control to nutrition, hydration, resuscitation and spirituality.
The audit found evidence of patients’ needs having been discussed with people important to them in only 38% of cases. A mere 4% had an advance care plan before admission to hospital.
Ability to drink was assessed in two thirds of patients in the final 24 hours of life, while ability to eat was recorded in 61% of patients.
Perhaps surprisingly, discussions about cardiopulmonary resuscitation only happened in 36% of individuals.
Discussions of spiritual matters only took place with 15% of patients, while the subject was discussed with someone important to the patient in 27% of cases.
The audit recommends better documentation of discussions with loved ones about hydration and nutrition – especially with regard to nil by mouth.
Age UK policy adviser Tom Gentry was on the audit steering group. He says concern about capacity was most often cited as a reason why discussions did not take place. He says he did not want to see this ‘used as an excuse’ anymore.
He says: ‘It should not be assumed that patients with dementia are unable to have a conversation about the end of their life
The lack of advance care plans is a great concern. While we recognise death is not an easy subject, there is so much guidance available now to ensure the patient’s needs are met when the time comes.’
She adds: ‘A multidisciplinary approach means you get a more experienced, educated workforce.
‘That training must be mandatory for all and end of life care recognised as a core part of your organisation – starting at board level.’
The audit data is likely to be assessed by partner organisations including the RCN and NHS England alongside a palliative care national framework for England produced last year.
The Ambitions for Palliative and End of Life Care – A National Framework for Local Action 2015-2020 sets out six ‘ambitions’ for clinical commissioners. These include co-ordinated care, so each patient has a team that knows their needs, and regular care reviews.
NHS England national clinical director for end of life care and audit steering group member Bee Wee said: ‘This framework represents a shared vision for the quality of care people should expect to receive towards the end of their lives, and a shared commitment to help local decision makers and providers.’
Referring to the RCP audit and national reviews of end of life care such as the Neuberger Report in 2013, which recommended the end of the LCP, Ms Murphy adds: ‘The benchmark has clearly been set. Now we have to work together to achieve it’.