How nurses can lead change and improvement in palliative care
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How nurses can lead change and improvement in palliative care

Nick Evans Health journalist

The NHS wants palliative care to be better coordinated and more person-centred – but are nurses and services always equipped to address individuals’ needs?

Not everyone gets the care and support they need to die with dignity and in as much comfort as possible. For years, nurses have led improvement in palliative and end of life care. We take a look at some recent developments – and what role nurses can play in the continuing improvements.

Cancer Nursing Practice. 23, 1, 17-20. doi: 10.7748/cnp.23.1.17.s8

Published: 02 January 2024

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Picture credit: iStock

Although they are sometimes used interchangeably, the two terms are distinct. End of life care is treatment and support for people who are near the end of their lives. That is normally defined as those expected to die within 12 months and includes those whose death is imminent.

While palliative care can involve end of life care, it is much broader and can last a lot longer. The aim is to improve the individual’s quality of life by preventing or relieving suffering and pain, whether physical, mental or spiritual, and providing practical support.

Long-term palliative care

Offering palliative care does not necessarily mean the person is expected to die soon – some people can receive palliative care for years.

Nurses are central to the provision of palliative care, along with multidisciplinary colleagues. District nurses play a key role alongside GPs and some patients need specialist support from palliative care nurses, doctors and therapists.

According to the Association of Palliative Medicine and Marie Curie an estimated 90% of people who die in the UK would benefit from palliative care – a figure based on the numbers dying with progressive conditions such as cancer, heart disease and dementia.

Lack of palliation, the charity says, causes distress and pain, not just to the individual but their families too. Gaps in provision are inefficient for the health service too, leading to unnecessary and expensive hospital admissions. R

Office for Health Improvement and Disparities data show around 15% of emergency admissions are of people who are in the final year of life, with two thirds of people experiencing at least one emergency admission in the final three months.

Yet there are significant gaps in the provision of palliative care. The 2022-23 National Audit of End of Life Care for England and Wales highlights a number of areas where improvement is needed, including:

  • » Communication.

  • » Use of advance care plans.

  • » Access to specialist support seven days a week.

There are some people, though, who do not access any palliative care.

Demand for care

The Marie Curie research estimates as many as one in four people who need palliative care do not receive it. And the charity warned that demand for care was only going to increase, thanks to an ageing population and growth in complex conditions.

Marie Curie chief executive Matthew Reed says: ‘The UK has an end of life problem. To put it bluntly, you only die once – and the last chapter of life has not been right for many people.

‘There should be more focus on moving resources from the acute sector to the place where people want to die. But people are not willing to let go of precious funding’

Barry Quinn, senior lecturer, school of nursing and midwifery, Queen’s University Belfast

‘What is needed is more – much more – support for people in their own homes. That care is often better, and cheaper, than what is available in hospital.’

‘Training is important and there are a variety of ways to access it… but it is not consistently available’

Sandra Campbell, RCN pain and palliative care forum member

Barry Quinn, senior lecturer in the school of nursing and midwifery at Queen’s University Belfast, and an expert in palliative care, agrees.

‘Until we recognise that dying is a natural part of life, we will end up over-medicalising a natural process. Yes medicine is important, but it needs to be complemented by care.’

He believes there has been an over-specialisation in palliative care.

‘Most good end of life care is delivered by community and ward-based nurses and doctors,’ Dr Quinn says.

‘It should be about collaboration and support – and more focus on moving resources from the acute sector to the place where people want to die. But people are not willing to let go of precious funding.’

Across the UK, work to improve palliative care services is ongoing. Each nation has published its own strategy for offering more choice and support for people who are dying. England’s 2021-26 framework sets out six ambitions:

  • 1. Each person is seen as an individual.

  • 2. Each person has fair access to palliative and end of life care.

  • 3. To maximise comfort and the individual’s well-being.

  • 4. Care is coordinated.

  • 5. All staff are prepared to care.

  • 6. Each community is prepared to help.

NHS England funded the Open University in producing a ‘grab and go guide’ on how to improve palliative care.

It sets out how the framework’s ambitions can be achieved and includes advice on increasing the use of advance care plans and making services seamless.

Keech Hospice Care end of life practitioner and University of Bedfordshire lecturer Chris May believes there are good intentions behind plans being put in place, but it is another development – in England at least – that will have the most far-reaching impact on services.

Legal duty

After a long-running campaign by Baroness Finlay, a professor of palliative medicine, the 2022 Health and Care Act created a legal duty in relation to palliative care, making integrated care boards in England accountable for commissioning and overseeing services.

Mr May says: ‘It is the first time any part of the NHS has had this responsibility. It is one of the most encouraging changes for many years. It should lead to more money being invested, and better planning.’

He says for too long end of life care has been over-reliant on the voluntary sector, with hospices and charities playing a key role in care provision.

‘They have had to resort to fundraising. It is not something you necessarily see in other areas of the NHS.

‘You would not, for example, expect to have coffee mornings to raise money for a hip replacement. We need to rethink how we view end of life care if we are going to see real progress.’

About 30% of hospital patients and about 80% of care home residents are in their final year of life, so nurses working in NHS and social care settings may have opportunities to influence the palliative care people receive.

Macmillan consultant nurse in palliative and end of life care Sandra Campbell, an RCN pain and palliative care forum member, says one of the biggest challenges is that while palliative care is ‘everyone’s business’, not everyone takes responsibility for it.

‘More palliative and end of life care is provided by non-specialist staff than specialist,’ she says.

‘It is only the most complex cases where specialists need to be involved, although there should always be access to specialist advice.

‘The key things that health and care staff need to know about include assessment and care planning, managing symptoms such as pain, agitation, nausea and vomiting and excessive secretions, assessing physical, psychological, social and spiritual needs.

‘It is also important to recognise dying, and to understand how to assess for reversible causes of deterioration.

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Picture credit: iStock

‘Training is important and there are a variety of ways to access it, including from universities, hospices and specialist palliative care teams. But it is not consistently available.’

4 ways to ensure palliative care is seamless and person-centred

Open University’s ‘grab and go guide’ is mainly aimed at managers and service leads, but includes advice that front-line staff can use:

  • 1. Be proactive in ensuring advance care plans are in place This includes adapting the plans for certain groups, such as people with learning disabilities and those whose first language is not English

  • 2. Ensure plans are shared between staff in primary and secondary care

  • 3. Support the family, friends and carers of the dying person Show them how to become involved in the care and provide pre-bereavement and bereavement help

  • 4. Access training e-lfh.org.uk/programmes/end-of-life-care includes 120 free online modules

Source: Open University (2023)

Advance care plans

Mr May agrees front-line staff need more support. ‘Opportunities are being missed as hospital staff in particular do not always know what is available. You hear of cases where people are told they are not eligible for hospice care because it is only available for cancer patients.

‘We are still seeing half of people dying in hospital when we know that is not where they want to die. We need to think much more about end of life care as a society – and talk about it. It is still only a minority of people who have advance care plans.’

He wants to see all health and care staff promoting advance care planning and even initiating plans. ‘It is not just something for the GP or district nurse to do.

‘And you do not have to finish them. By doing more to encourage people to fill them in we would empower people and that, in turn, would help drive change.’

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