Recognition and management of acute functional decline in older people living in care homes: a qualitative interview study with UK care home staff

Noticing changes from normal

All interviews opened with an opportunity for participants to describe what they understood by ‘acute functional decline’. In response, participants tended to list a series of changes in both behaviour and activities of daily living. Some participants also mixed in specific symptoms or clinical signs of acute illness, mainly those associated with infection:

‘Mobility going down, off their food, nausea, pallor, breathlessness, if they complain of pain or discomfort, going to the toilet. If they are actually hot to touch … ’ (Participant [P]10, female, manager, nursing background, combined nursing/residential home, >25 years’ experience)

Participants said that sometimes the changes they noticed were subtle and required knowing the resident well. Several highlighted that some residents exhibited symptoms unique to them; examples included a flushed face or a painful neck. Most participants felt confident that they could detect an acute functional decline, with some attributing this to their years of experience of working in care homes, and some to their clinical training. However, many participants said it was the carers with no clinical training that were best placed to notice a change because they interacted the most with residents:

‘Because you’re there a lot with those people, you get to know their likes, their dislikes, their routines and if they veer from any of that you know there’s something wrong.’ (P1, female, manager, nursing background, residential home, >25 years’ experience)

One challenge identified by some participants was recognising a change in residents who normally fluctuated day to day, like some people living with severe dementia. In these residents, it was difficult to differentiate an acute functional decline from a ‘bad day’ (P2). Several participants characterised bad days or ‘off days’ (P15) as short-lived and less severe episodes, with residents returning to baseline quickly.

Describing and communicating about the episode

All participants were asked about the terms that they would use to describe or communicate to each other about residents who were experiencing an acute functional decline. Many participants gave examples of phrases that indicated that a resident was different to normal, like ‘not themselves’ (P4), ‘a bit off’ (P13), or ‘they’re just not right’ (P20). Others used words that indicated ill health like ‘poorly’ (P14) or ‘generally unwell’ (P19). Some participants just talked about having and sharing ‘concerns’ (P8).

Several participants reflected how the language used within the care home differed to that used when communicating with healthcare professionals:

‘So, the carer would report it as, as that, "oh I’m a bit concerned about the resident today," and then obviously describe their concerns. When we are talking to the doctors, to medical professionals we probably would then say there’s been an acute decline.’ (P8, female, manager, non-nursing background, residential home, 20–25 years’ experience)

A few participants explored the potential mismatch between the language used within the care home and the potential severity of the decline or the illness the resident was experiencing. This could be a barrier when communicating to healthcare professionals:

‘It can be a bit frustrating because it’s like "well, they’re just saying they don’t feel right" they said but and then you’re thinking "well I can’t kind of present this to a GP as if they don’t feel right when there’s nothing clinically telling me that there isn’t anything wrong."’ (P15, female, deputy manager, nursing background, combined nursing/residential home, >25 years’ experience)

As a result of this mismatch, one participant had introduced training to improve interprofessional communication. In contrast, another participant felt that it was important to retain the use of simple language within the care home because most of the staff did not have a background of clinical training:

‘We don’t like to use too much medical jargon and work just work around them. It can, it can instil a bit of fear sometimes, I think. I think it’s important that they understand as much as you because I am the only medical trained person in the home … ’ (P24, female, advanced nurse practitioner, combined residential/nursing home, 11–15 years’ experience)

Feeling anxious about the resident

Several participants talked about their anxiety for residents when they were experiencing an acute functional decline. For some this was because episodes did not all follow the same trajectory or have a predictable outcome. Participants talked about how sometimes an acute functional decline turned out to be just an ‘off day’, in others it was an early sign of an acute but potentially reversible illness, while in others, it could mean that the resident was approaching end of life.

For some participants the anxiety was also driven by a close relationship with the affected resident. Others talked about the ongoing emotional impact from their experience in the early stages of the COVID-19 pandemic. The uncertainty and fear for residents appeared to impact some participants’ responses to episodes, including having a low threshold to escalate:

‘We get quite worried when our residents get like UTIs and stuff because obviously if they’re left untreated, if any infection is left untreated it could turn sepsis and, obviously, we don’t want that … ’ (P4, female, senior carer, residential home, 6–10 years’ experience)

Sharing or shifting responsibility

Many participants talked about sharing what they had observed about a resident quickly among their team. This could either be to validate what they had noticed or to escalate to someone more senior who could support them. Some described not wanting to hold any responsibility for a potentially unwell resident in case something went wrong, while some described a culture of automatically escalating everything to someone with clinical training:

‘So, if it was noticed by a carer, for example, it’d go to the senior. If the senior was unsure, which 90 per cent of the time, they know how to handle it, they’d come up to management, but it then be discussed and it would go to our advanced nurse practitioner.’ (P18, female, manager, non-nursing background, residential home, 6–10 years’ experience)

Escalation appeared to alleviate anxiety for participants and removed the sense of having personal responsibility. However, one participant highlighted how a low threshold for escalation within the care home had the potential to over-burden the limited nursing staff available:

‘The care staff certainly know when to escalate. In fact, to some extent, it probably is the opposite way that care staff will escalate too much; somebody clears their throat, they’re running down to the clinic to tell the nurse.’ (P13, female, manager, nursing background, nursing home, 21–25 years’ experience)

Assessing the resident

Most participants described how a resident who had been identified as experiencing an acute functional decline would be assessed at an early stage. During this assessment, most participants said a set of clinical observations would be taken. Some participants went on to use these to calculate a score, using National Early Warning Score 2 (NEWS2)²⁰ or the Recognise Early Soft Signs, Take Observations, Respond, Escalate (RESTORE2) tool.²¹ Participants said that observations helped them to get an initial sense of the severity of any illness and were reassured if they and/or the early warning score were normal. There were several examples of upskilling of non-clinical staff to take observations as a result of the COVID-19 pandemic.

Many participants also said that they would collect a urine sample from the resident and do a urine dipstick as part of their initial assessment. This was because a UTI was perceived by them to be a common or usual cause for an acute functional decline. Some participants said they would do a urine dipstick for everyone, while others qualified that they would only collect a urine sample if there were urinary symptoms reported. Others felt that GPs expected a urine dipstick to be done. However, there were also participants who said that they were unclear whether a urine dipstick was recommended in current guidelines:

‘If their urine is a bit iffy, I would also probably do a urine dip, but I mean we’ve been given so much conflicting advice on whether that’s helpful or not in people over the age of 65.’ (P7, female, senior carer, residential home, 1–5 years’ experience)

Some participants with a nursing qualification talked about doing a more thorough clinical assessment. This might involve a physical examination, as well as ruling in or out what they thought were other possible causes for an acute functional decline. Participants mentioned constipation, dehydration, medications, pain, or psychological triggers. Several participants talked of the increased responsibility the care home took for looking after the resident before escalating to the GP because of the limitations on home visits during the COVID-19 pandemic.

Doing a lateral flow test for COVID-19 had become routine in the assessment of unwell residents for many participants at the time the interviews were conducted. Several participants described how during the pandemic they had worried all the time that their residents could have COVID-19 and one participant felt that their clinical judgment had been compromised by this fear. In contrast, several participants felt that the pandemic had not changed the way in which they responded to residents with an acute functional decline.

Observing residents

Some participants said they would adopt a ‘watch and wait’ (P7) approach, especially if presentation was perceived to be less severe (for example, reduced food intake), the clinical observations were normal, and if there were no particularly concerning features on their assessment. This generally meant a period of closer monitoring with repeated checks of clinical observations, often coupled with encouraging oral fluids. Some nursing staff described initiating other interventions during this time including giving analgesia, antipyretics, and, if constipated, laxatives:

‘In the meantime, we would keep an eye on them. The odd just basic things like start a fluid and food chart to make sure they were hydrated and check their output and we would, we would start that as well to monitor.’ (P10, female, manager, nursing background, combined nursing/residential home, >25 years’ experience)

The purpose of this approach was, for some of these participants, to help them differentiate a potential ‘off day’ (P15) from something more serious. Allowing a short period of time to pass gave those who were going to get better anyway the opportunity to do so and/or any simple interventions a chance to work. Some participants felt it was positive that this could prevent unnecessary GP contacts.

Some participants described when they would seek advice for those who were not getting better on the ‘watch and wait’ approach. The length of time participants allowed before seeking additional clinical support in these cases ranged from a few hours, to the next shift, and in one home there was a ‘rule of thumb’ (P7) of 3 days.

Triggers for seeking additional clinical support

All participants described potential triggers for wanting to seek additional clinical support for the resident. Participants had different tolerance levels to exposing themselves to risk. Those without clinical training tended to want to escalate sooner:

‘We’ve been told by our manager that if we’re not sure with something, we should report it straight away because then if something does happen, we’re, we’re covered in the fact in that we have reported it but it was their, the professional’s decision not to do anything else about it.’ (P4, female, senior carer, residential home, 6–10 years’ experience)

Some participants said that it was the perceived severity of the illness or their own anxiety that prompted escalation. For some, severity was indicated by the speed or degree of the change from normal. For others it was ‘red flag’ (P7) symptoms like total loss of mobility or extreme confusion. Participants with a nursing background described sometimes having a ‘gut feeling’ (P12) to escalate. They said that this feeling was driven by their experience of similar episodes and/or knowing the resident well:

‘I do believe that nurses have a sixth sense where they do pick up on things and I don’t think it’s always possible to put it into words why you think something’s not right.’ (P12, female, manager, nursing background, nursing home, >25 years’ experience)

In homes that had adopted early warning score tools, like NEWS2, the overall score or changing score would determine what they did next, including escalation to a GP or ambulance service.

Contacting GPs or other sources of clinical support

Participants had varying experiences of contacting GPs about unwell residents. Some had a good relationship with their usual GP, while others described challenges in communication. Several participants felt the need to be ‘forceful’ (P1) in getting their point across. Others talked about the need to be succinct and how they had learned to deliver information GPs would expect:

‘They usually would expect us when we ring, we are prepared when we ring the doctor, so we, we have a list of who needs a GP and next to them is observations and, obviously, if we need to dip urine, we dip urine prior to ringing the doctor so we have all that information, we have the facts. It just makes the whole process a lot easier.’ (P19, female, manager, non-nursing background, residential home, 16–20 years’ experience)

Several participants talked about how the early warning score tools had improved communication with GPs and given them greater confidence in explaining the potential severity of illness, as well as being a way of avoiding lay terminology:

‘So being able to say, “Their NEWS is at 6,” that’s like such a shorthand of saying, they’re not quite right and I also semi know what I’m doing so please listen. It’s just been brilliant, it’s been a brilliant tool.’ (P7, female, senior carer, residential home, 1–5 years’ experience)

As these interviews were carried out towards the tail end of the pandemic, many assessments with GPs were carried out over the telephone with care home staff or as a video call. Some participants explained that GPs appeared to rely on their judgement when making a clinical diagnosis, for example, accepting their assessment that a person might have a UTI. Others talked about the usual response of the GP to prescribe antibiotics for residents with an acute functional decline. Several participants described frustration at the lack of face-to-face input or investigation by GPs during this period.

There were several examples of alternative care models using remote specialist nurses who were able to advise on next steps. Advice could include trying the ‘watch and wait’ approach, simple interventions, or escalation to a GP. Participants with access to these services valued the specialist support and the quicker response compared to contacting their GP directly. Some care homes had directly employed advanced nurse practitioners who were able to provide rapid ‘in-house’ assessments and, in one case, prescribe medication. In these care homes, GPs were rarely involved in the assessment and management of residents experiencing an acute functional decline.