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Care for dying patients: ‘now it is everybody’s business’

How end of life care has changed four years on from the removal of the Liverpool Care Pathway

How end of life care has changed four years on from the removal of the Liverpool Care Pathway


Individualised care planning is essential. Picture: Alamy

Four years since the Liverpool Care Pathway for the Dying Patient (LCP) was withdrawn, nurses seem broadly positive about the approach that has replaced it.

Media revelations exposed serious failings in the use of the LCP. By 2014, following an independent review chaired by Baroness Julia Neuberger and a raft of criticisms, it was deemed unfit for purpose amid fears it was not being used properly in some cases.

The pathway had been widely adopted in the NHS and hospices in England, Northern Ireland and Scotland. Wales had its own integrated care pathway.

Misuse and lack of training

Several concerns emerged about implementation of the LCP. They included inappropriate use of sedation, withholding hydration and the fact that recognising a person was dying was not always supported by an experienced clinician. Nor was this reviewed reliably, even if the person’s condition had potential to improve.

Half a million

people in England die each year. This number is expected to rise by 17% by 2030

Source: Palliative Medicine, 2008

These issues were not necessarily a direct result of the pathway itself, but rather of poor or indiscriminate implementation and a lack of staff training and supervision.

RCN professional lead for end of life care Amanda Cheesley reflects that the LCP had become ‘toxic’ and a new approach was needed.


Amanda Cheesley, RCN end of life
care lead

‘Some of the stories were completely awful and there has been absolute recognition that we can’t go back to something like that,’ she says.

Priorities for care post-LCP

Instead, a leadership alliance of 21 healthcare organisations in England, including the RCN and the Nursing and Midwifery Council, came up with five care priorities when a person is approaching the end of life.

Ms Cheesley says: ‘What we didn’t want to do was to create another monster. If you create another pathway, potentially you end up with a similar problem.

‘It was about having key principles with good record-keeping and very good communication and that doesn’t have to be complex.’

The five care priorities at the end of life

  • Timing and decision-making The possibility that a person may die within the next few days or hours is recognised and communicated clearly by healthcare staff to the dying patient and their loved-ones. Decisions are made and actions taken in accordance with the person’s needs and wishes. These decisions are reviewed regularly and decisions revised accordingly.
  • Communication Sensitive communication takes place between staff and the dying person, and those identified as important to them.
  • Personal choice The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wishes it.
  • Family wishes The needs of the family and others identified as important to the dying person are actively explored, respected and met as far as possible.
  • Care plan An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion.

 

Ms Cheesley says: ‘The principles for five priorities of care apply across the UK but each country has developed its own specific parts.

‘Each organisation has been expected to develop its own approach to end of life care and to explain how it has educated staff, continued conversations with patients and family members and how it has recorded that.’

‘What is brilliant is that people are developing their own approaches – it is far better to have something we have developed for a particular area than one size fits all’

Amanda Cheesley, RCN professional lead for end of life care

Three quarters

of deaths in the UK each year are expected

NICE guidance issued in 2015 made recommendations on hydration and prescribing medicine, how to communicate with people at the end of life, and recognition that death is imminent.

Ms Cheesley says some organisations have adopted existing formal approaches to end of life care, such as the Gold Standards Framework, which provides training and accreditation. Others have chosen to develop their own end of life care approaches.

‘What is terrific, brilliant and interesting is that people are developing their own approaches – it is far better to have something we have developed for a particular area than one size fits all,’ adds Ms Cheesley.


Elizabeth Rees, end of life care lead
nurse at Leeds Teaching Hospitals

Inspected as a core service

Leeds Teaching Hospitals NHS Trust lead nurse for end of life care Elizabeth Rees says: 'The best thing that has come out of stopping the LCP is that people are talking far more about individualised care plans.

'Caring for dying patients has now become everybody's business and delivering the best end of life care has also been helped by the Care Quality Commission starting to inspect end of life care as a core service.'

End of life care clinical nurse specialist Maggie Kennedy, of Guy’s and St Thomas’ NHS Foundation Trust in London, says that post-LCP, there was a gap that needed to be filled quickly.

‘What I found when I came into post was that the care plans and documentation that were written weren’t reflecting the care given.

‘We had a change of focus to comfort and dignity and to find out what is important to the patient and their family’

Maggie Kennedy, end of life care clinical nurse specialist, Guy’s and St Thomas’s NHS Foundation Trust

‘It was more about medical needs than spiritual ones, and so we needed to give people an aide mémoire – care planning is not a tick-box exercise.

‘We had a change of focus to comfort and dignity and to find out what is important to the patient and their family.’

She adds that junior doctors and nurses had struggled with knowing when to escalate symptoms. Guy’s and St Thomas’ wanted to give staff support in caring for those at the end of life. In light of this, the trust developed two tools for use with dying patients. 

Observations and individualised care planning

The first is a symptom control chart, adapted from one used at Brighton and Sussex University Hospitals NHS Trust. It requires observations to be recorded at least four-hourly and offers guidance for nurses and doctors on when to escalate.

This is used in conjunction with a guide to individualised care planning called Priorities of Care for the Dying Person, which needs to be completed 12-hourly.

It includes prompts for the healthcare professional such as the following examples:

  • Recognise that reversible causes have been considered, the person is dying and the reasons for this should be clearly documented by the medical team.
  • Ensure a senior clinician has explained to the person and those important to them that they may be dying in hours to days, the reasons for this judgement and any uncertainties surrounding it.
  • Listen to and acknowledge the person’s needs and wishes, including preferred place of death.
  • Identify any spiritual, cultural or religious needs for both the person and those important to them.
  • Ask the person and family what is important to them. Encourage and support music, photos and familiar items being brought into the ward.

Ms Kennedy says an initial pilot using the tools on the acute admissions ward was successful and there is a ambition to introduce them elsewhere in the trust next year.

End of life care standards across the UK

Following the end of the Liverpool Care Pathway, all four UK countries developed their own standards.

England

A 27-organisation group known as the National Palliative and End of Life Care Partnership, which includes the RCN, outlined a set of ambitions for improving end of life care in the country. These include each patient being seen as an individual and having fair access to coordinated care.

Wales

The country has a three-year delivery plan to improve end of life care by 2020. It also uses the Care Decisions for the Last Days of Life guidance which supports the NICE end of life guidance.

Across England and in Wales, work is underway on the first year of a three-year national audit looking at care at the end of life in acute hospitals and mental health. This audit will extend to community hospitals, and is expected to report in May 2019.

Scotland

In December 2015, the Scottish Government published the Strategic Framework for Action on Palliative and End of Life Care, with the aim that by 2021 everyone in Scotland who needs palliative care will have access to it.

Health professionals are also expected to follow four key principles set out in guidance on caring for adults in the last few days and hours of life, which include communication and care planning.

Northern Ireland

A regional group known as the Palliative Care Partnership has been established in Northern Ireland. It involves all health and social care trusts and is pursuing and developing initiatives and projects to improve end of life care.

 

North London Hospice assistant director of quality Giselle Martin-Dominguez says: ‘Nurses have always strived to provide the best end of life care for their patients, whether that is on an individual level with a patient they meet, or in trying to influence the national agenda.’

Ms Martin-Dominguez says organisations are looking at how to apply the five priorities of care with local partners, such as GPs, district nurses and care homes.

60%

of people would prefer to die at home, according to population-based studies on preferences for place of death

‘For hospice providers like us, individualised care planning is our bread and butter, so we have internal documentation with that emphasis and a model focused on that, but we also do local community work.

‘There has always been that dialogue and joint working. Locally with the sustainability and transformation plans a lot of that communication is now centred on bringing providers together.

‘It has always been about education and promotion and that is an ongoing challenge.’

‘Nurses continue to work with inadequate staffing, increased demand and a lack of opportunity to attend training – that remains a big challenge'

Giselle Martin-Dominguez, assistant director of quality, North London Hospice

She points out that nurses face daily pressures and increasing demand for services and says this can affect essential end of life care training.

‘Nurses continue to work with inadequate staffing, an increase in demand and a lack of opportunity to attend or be freed for training – that remains a big challenge.

‘There are recommendations for training in all core national documents but it is not mandatory, therefore that is the constant battle of people trying to improve standards – either on a strategic level or a nurse on a ward who wants to improve and do better for her patient.’

Awareness of the five agreed priorities of care for a dying person are key for health professionals, yet so is relevant training and the time to access it.

With this in mind, the RCN – in partnership with Hospice UK and Skills for Care – will publish end of life care learning materials later this year to support an awareness-raising film about the challenges of caring for young people with complex needs at the end of life.

 

Stephanie Jones-Berry is a health journalist 

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