Nurses need access to end of life training says leading cancer charity

Macmillan Cancer Support calls for clear guidance on personalising care at the end of life

Macmillan Cancer Support calls for clear guidance on personalising care at the end of life as well as support for nurses and other healthcare staff to undertake training

  • At the Crossroads report states that standards of end of life training in England are mixed
  • Workforce and financial pressures make accessing end of life training difficult for nurses and other healthcare staff
  • Advance care planning conversations about people's wishes means staff can focus on specific needs
Picture shows nurse talking to a man while his partner lies on a hospital bed. Macmillan Cancer Support has called for clearer guidance on personalising care at the end of life
Advance care planning conversations mean staff can focus care on specific needs. Picture: Barney Newman

The standard of end of life care training for professionals in England is mixed, says a report, At the Crossroads, published by Macmillan Cancer Support, with workforce pressures making access difficult for some staff.

While training is on offer for staff in the community, often provided by local hospices, many professionals are unable to attend. Usually this is because staff cannot be released from front-line care because of a lack of capacity or funding to backfill their posts.

‘It’s difficult to quantify the exact scale of the problem, but anecdotally we know lack of training is an issue,’ says Macmillan adviser for end of life care Anne McGee.

‘When carrying out our research, this topic came up in all the focus groups we conducted. The main concern was that there is no standardised approach to palliative care training, meaning it’s not prioritised.’

Only some Care Quality Commission (CQC) inspections look at the availability and uptake of end of life training.

‘Professionals felt that if this was something that CQC inspected, then they would be forced to ensure staff had necessary training,’ the report states.

Lack of good quality conversations about end of life care can have knock-on effects

Lack of professional training and support can affect quality of care for patients and staff, who may lack the confidence to begin important conversations.

‘Many staff need more support to help people think and talk about death at the right time,’ says Ms McGee. ‘This can prompt open discussions about what matters to them, so their care can be truly personalised.

‘This lack of training has a knock-on effect on patients. We know that having good quality conversations about end of life care, at the right time, can make a huge difference to people.

‘Having advance care planning conversations about their wishes and what’s important to them means staff can focus care on their needs. Without appropriate training, staff are less likely to feel confident to have these conversations, so they don’t happen or happen too late,’ she says.  

Huge issues around training for nursing staff in care homes

For nursing staff working in care homes, training is a huge issue, says RCN professional lead for long-term conditions and end of life care Amanda Cheesley.

‘It’s massively difficult for staff to access and there are all sorts of reasons for that,’ she says.

‘Partly, it’s that a lot of homes are stretched financially. There can also be a significant turnover of staff. Training is provided, but then people leave and are replaced by others who haven’t had it.’

Difficulties achieving enough participants is also highlighted in the report: ‘Offers for local training were being reduced because they couldn’t get the numbers in the room to make it financially viable’.

One professional quoted in the report says: ‘We’ve done it in the evenings, we’ve done it on lunchtimes, we’ve done it for a whole day. We’ve put on free events. We’ve done every single format – we’ve done it every single which way and people just don’t come.’

Should end of life care training be included as part of pre-registration nursing studies?

This finding is echoed by Ms Cheesley, citing her and an RCN colleague’s experience of trying to provide a workshop on end of life care for care home staff.

Picture shows RCN professional lead for long-term conditions and end of life care Amanda Cheesley
Amanda Cheesley

‘The pilot was free and well-attended,’ Ms Cheesley says. ‘But there was hardly any take-up for subsequent workshops where there was a charge.

‘For one workshop, I had 20 people signed up to come, but just three people turned up because of staff pressures. There was no one else to do the work, so they had to cancel.

‘Until people’s time is protected, this will be a recurring feature.

‘We are short of nursing staff generally and particularly in the community. This is a challenging time.’

To make a difference, she believes training should be included as part of pre-registration nursing studies. For staff in organisations, it is important to establish their level of knowledge, before finding out what else they need to do their jobs effectively.

‘Then it could be tailored individually,’ says Ms Cheesley. ‘At the moment, it tends to be catch-all and often doesn’t capture the right people. There are probably more opportunities when someone first starts a job, because they are going through induction.’

Confident approaches to conversations about end of life can limit misunderstandings

Ms Cheesley also advocates that everyone should have some training so they have a basic level of awareness, with extra training for those in main roles.

‘There are trusts where training includes the porters, the cleaners, everyone,’ says Ms Cheesley.

‘If someone asks you a question about whether they’re going to die, you need to know enough so that you don’t fob them off. You should feel confident to have a conversation and respond to questions.’ 

Unless these conversations take place, with patients and their loved ones understanding what is being discussed, there can be all kinds of misunderstandings, she warns.

‘The effects can be catastrophic,’ says Ms Cheesley. ‘You can raise false expectations or leave people unprepared for what happens.’

Feeling inadequately skilled can leave healthcare staff feeling exposed and frightened

The effects on staff can also be significant, with a lack of training leading to staff feeling exposed and frightened.

‘It prevents you from having a conversation because you are worried about saying or doing the wrong thing,’ says Ms Cheesley.

‘It can also make you feel inadequate and frustrated. Not feeling adequately skilled to be able to look after someone as they approach the end of their life is a horrible feeling.’

At the Crossroads

The Macmillan Cancer Support report At the Crossroads – How Can the NHS Long Term Plan Improve End of Life Care in England? is based on research and insight gathered from front-line healthcare professionals. 

It states: ‘The NHS Long Term Plan has set the national direction of travel for the NHS in England for the next ten years and includes welcome commitments to improve end of life care. However, simply stating these commitments is not enough: for people not receiving personalised care this needs to translate into action now.’ 

It details seven policy priorities:

  • Prioritising end of life care in all parts of the health and care system, with clear guidance on what local health systems are expected to deliver
  • Personalising care at the end of life through shared decision-making and advance care planning
  • Sharing records through electronic palliative care coordination systems
  • Integrating care in the community
  • Training professionals to have the confidence to support people at the end of life, with all relevant health and care professionals being able to access funded training to improve their skills
  • A whole system approach to enabling personalised care, with a sustainable funding settlement for social care in the longer term
  • Quality improvement in primary care.

Find out more

This article is for subscribers only