Analysis

Care home nurses’ survey reveals a sector facing huge challenges and difficult decisions during pandemic

QNI report reveals homes pressured into accepting patients with COVID-19, residents refused treatment by hospitals and GPs, and examples of blanket ‘do not attempt CPR’ notices

QNI report reveals homes pressured into accepting patients with COVID-19, residents refused treatment by hospitals and GPs, and examples of blanket do not attempt CPR notices

  • Response to survey by Queens Nursing Institute paints a picture of care home sector under pressure

  • Some report blanket DNACPR notices issued without residents, their families or care home staff being consulted
  • Some have had a positive experience and others have pushed back against practices they felt prejudiced care
Some older people in the community received forms asking them to sign a decision about DNACPR from their GP Picture: iStock

Of the many emails and messages sent to Alison Leary in light of research into COVID-19 in care homes, there is one that stands

QNI report reveals homes pressured into accepting patients with COVID-19, residents refused treatment by hospitals and GPs, and examples of blanket ‘do not attempt CPR’ notices

  • Response to survey by Queen’s Nursing Institute paints a picture of care home sector under pressure

  • Some report blanket DNACPR notices issued without residents, their families or care home staff being consulted
  • Some have had a positive experience and others have pushed back against practices they felt prejudiced care
Some older people in the community received forms asking them to sign a decision about DNACPR from their GP Picture: iStock
Some older people in the community received forms asking them to sign a decision about DNACPR from their GP Picture: iStock

Of the many emails and messages sent to Alison Leary in light of research into COVID-19 in care homes, there is one that stands out.

She was one of the authors of a report published by the Queen’s Nursing Institute (QNI) after it surveyed its nurses working in care homes about their experiences in the pandemic.

The survey, to which 163 of the 400 members of the QNI’s care home nurse network responded, revealed a sector facing an immense challenge – and one where nurses have been forced to push back against practices they felt prejudiced care.

Alison Leary, professor of healthcare and workforce modelling at London South Bank University
Alison Leary

‘One of the interesting emails I’ve had was from someone who worked in a care home, and one of her residents had a heart attack,’ explains Professor Leary, who is professor of healthcare and workforce modelling at London South Bank University.

The nurse who stuck her neck out to drive a resident to hospital herself

‘They’d all been told to ring 111, not to ring 999. She tried to get an ambulance, but paramedics weren’t able to take this person to hospital. She ended up driving this resident – who was fairly fit and aged 65 – to hospital herself. He was admitted, transferred to another hospital, and got a stent put in.

‘He survived and he’s fine, but if that had been someone who didn’t stick her neck out and who instead chose to follow the rules, it’s hard to say what would have happened. But forcing people into that sort of decision-making is difficult.’

Members of the QNI’s care home nurse network range from staff delivering care directly to residents, to leaders overseeing several homes. Some 70% (114) of respondents were registered nurses and 28% (46) were managers.

The QNI survey paints a picture of a sector under pressure: nurses reported having to accept patients with unknown COVID-19 status and those who had the virus. In some cases they were informed that blanket do not attempt cardiopulmonary resuscitation (DNACPR) notices were being issued for groups of residents without consultation with families, staff or the individuals themselves.

Key findings from the QNI care home nurse network survey

  • One in five of the 163 respondents reported receiving residents from the hospital sector who had tested positive for COVID-19 in March and April
  • 70 reported receiving patients from hospital with unknown COVID-19 status
  • One quarter said it was difficult or very difficult to access hospital care from March to May
  • About one in three said it was somewhat difficult or very difficult to access GP services or district nursing services
  • 116 said it was easy or somewhat easy to access end of life medication or services for those who needed it
  • While most said there had been no changes to arrangements for decision-making around DNACPR, 16 reported negative changes such as blanket DNACPR notices or decisions taken about resuscitation status by others (GPs, clinical commissioning groups or hospital staff) without discussion with residents, families or care home staff, or that they disagreed with some of the decisions on legal, professional or ethical grounds
  • Almost one quarter reported COVID-19 as a positive focus for change in talking about end of life care
  • Over half felt worse or much worse in terms of their physical and mental well-being

Need for more scrutiny of people external to a care home making decisions for groups of residents

And some – like the case described by Professor Leary – reported being told that if residents became ill they would not be admitted to hospital but would have to remain in the care home.

Professor Leary was surprised by some of the survey results. ‘The report is mixed. I didn’t expect so many – 10% – of the responses to be around people external to their care home making decisions for groups of people. That’s something that certainly needs more scrutiny.

‘If we’ve got clinical commissioning groups (CCGs) making decisions about people they’ve never met and just transferring that to care homes or groups of care homes, that needs some scrutiny in terms of the way that they look at their population.

‘Many people have contacted me since the survey was published and one issue that people are concerned about is blanket DNACPR decisions being made by people who weren’t working in the care home. The other issue was not to do with care homes but with older people in the community, who were receiving forms asking them to sign a decision about DNACPR from their GP.

‘There were a lot of those. So that seemed to be a common practice, where people would just receive a form in the post, without a discussion, asking them to sign to say they don’t want to go to hospital and they don’t want to be resuscitated.’

Disconnect between what care home nurses were hearing in the media and the reality

Queen's Nursing Institute chief executive Crystal Oldman
Crystal Oldman

QNI chief executive Crystal Oldman says the survey and subsequent report came about because the QNI was receiving feedback and requests for support from its care home nurse network, and nurses were concerned that their reality was not being properly represented .

‘They felt that there was no reference made to the challenges they had,’ says Dr Oldman.

‘The story in the media was that no care home would be taking residents without knowing whether they had COVID-19 or not. And yet they knew, day-to-day, that it was actually happening on the ground.

‘There was a real disconnect between what they were hearing in the media and what they were seeing, so they were contacting us and asking what we were going to do about it, because we run the care home network. We thought it would be useful to have a piece of work that captured the data.’

Not everything was negative in the responses from the QNI care home nurse network. Positives included a feeling among around one quarter of the 163 respondents that the pandemic had been a catalyst in encouraging conversations about end of life care, including resuscitation notices.

‘The other good thing – which isn’t in the report, but we know from our networks – is that there is a huge proportion of care homes that haven’t been affected by COVID-19 at all,’ says Dr Oldman.

‘So there’s something about learning from those care homes, but also celebrating the fact that they haven’t had residents who have had the virus, and they haven’t had outbreaks. So I am delighted that it’s opened up discussions about end of life care and do not resuscitate decisions – that is a good thing.’

Resuscitation Council UK (RCUK) director of clinical and service development Sue Hampshire, a registered nurse, is disappointed that it has taken a pandemic to highlight inconsistencies across the country about how decisions are taken on care generally, including end of life.

Evidence is out there of blanket DNACPR decisions having been made

‘Had we done the survey, I think we would have expected those results,’ she says. ‘It’s all been anecdotal, or what we’ve seen in the media, but people have said they understand this is happening either in their areas or in neighbouring areas, so there is evidence out there that blanket DNACPR decisions have been made, and RCUK doesn’t support those in any way.’

She points to the organisation’s Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process as a way to support individuals about what matters to them, at end of life and before.

The ReSPECT form was revised in September, making it more patient-centred and adding more prompts for healthcare professionals to explain clinical decisions.

Someone being shown a DNACPR notice
A DNACPR notice

‘Decisions about any aspect of care have to be personalised. You can’t make a decision for ten people. It has to be on an individual, because there are so many factors – it’s not only health factors, it’s emotional factors, it’s social factors. There are so many things that come into play that there’s just no way a blanket decision on any area of care would be supported.

‘I know I’m speaking on behalf of Resuscitation Council UK, the experts in resuscitation, but it can’t just be about resuscitation – it’s all aspects of personalised care and personalised decisions. These conversations really do sit at the heart of a lot of work that’s being done nationally around end of life care at whatever age.

What happened when a local health service representative tried to impose DNACPR notices

As the national operations director for Trust Care Management, which runs seven homes for older people and people with learning disabilities, Chris Graham reports a ‘mixed’ experience of the pandemic, particularly in the early stages.

He gives one example of a larger home for older people, where a representative from local health services tried to impose DNACPR notices on residents. ‘The reason given was that they were preparing for COVID-19 so DNACPRs had to be rolled out to the residents that lived there,’ he says.

‘This wasn’t done in a good way – it was telling people (and their families) that they would be staying at the home if they were to catch COVID-19 and that they would die in the home, and a GP wouldn’t be attending. Staff at the home called me straight away and I rang her superior and said I wanted her removed from site. It’s not how we work ethically, it’s morally wrong, so we asked them to leave.

‘The superior tried to reassure us that they were working within the legal framework they had, but we just told them that this was not how we would work in this situation.

‘They then came back and supported us with that, and then a few weeks later guidance came out regarding DNACPRs and the approach that should happen – which wasn’t the approach that had been attempted locally. The whole experience was distressing for staff and for our families.’

More positively, he says, some areas handled the situation well – for example, the local authority in Peterborough, where one of the company’s homes is located, was supportive and provided online training.

The company as a whole follows the gold standards framework for end of life care – and it’s a discussion that begins even before a resident is admitted, and is monitored throughout their time in the facility.

COVID-19 pandemic has increased the velocity of change around end of life planning

‘We have to think not just about the process for making resuscitation decisions. That’s the end of a long process of conversations and decision-making and planning around ceilings of care, all of the areas of care that we’ve come to realise as being important to people.’

Ms Hampshire adds that the pandemic has changed practice and increased the velocity of change already happening around end of life planning.

‘COVID-19 has been difficult and it’s been such a stressful time for everyone in all aspects of care, and we certainly can’t thank everyone enough for their dedication and all the hard work that’s gone into it.

‘COVID has been a game changer, it’s been a catalyst’

‘The QNI survey actually showed some very positive experiences in many areas and that is delightful to see. There were 39 respondents who said it had been a positive experience and there were some comments about how it happens all the time, so nothing changed.

‘And isn’t that brilliant – those are the real, key achievements. We should see conversations and decision-making as part of daily work, but if COVID has helped us on our way to that and it’s now becoming the expected norm, then it’s been everything: it’s been a game changer, it’s been a catalyst, and it’s accelerated the trend – it’s not been one thing or the other, it’s been a bit of all three.’


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