Carers UK (2015) have reported that more than 87 000 carers are over 85 years. These individuals often provide long hours of care and support, which has an impact on—among other things — their finances, and mental and physical wellbeing. This ultimately, renders them incapable of carrying on their responsibilities (Carers UK, 2015; Carers Trust, 2015). A survey has shown that 72% of older carers (aged 65 years and over) report feeling ‘not good’ (Carers Trust, 2015).
The authors, who are Nursing and Midwifery Council (NMC) registered nurses, working as advanced clinical practitioners for long-term conditions (ACP-LTC) for a community trust, regularly facilitate multi-disciplinary team (MDT) meetings where complex cases are discussed. They have found such complex cases increasingly involve co-caring couples. The implications of this dyadic dynamic, wherein two parts of a whole depend on each other to function, are accentuated in cases where lack of family or friends leave a couple isolated in their co-caring responsibilities (Tranberg, 2021; Happ et al, 2022).
This article was inspired by a case that involved such a couple, both over 90 years and frail, but coping. When one was admitted, the extreme vulnerability of the other was cruelly exposed, and health and social care struggled to provide an adequate safety net. This left those involved feeling deficient and frustrated as we could predict, but seemed unable to prevent a poor outcome for the couple. The scope of advanced practice (Health Education England (HEE), 2020a) invites clinical leadership, which led the authors to conduct a structured review of this case to develop and share a plan for practice improvement.
Background
Molly and Sven (names changed to protect identity) were referred to the MDT by a housing officer who was concerned about a deterioration in Molly’s cognitive state. The referral led to a visit by ACP-LTC, who carried out a general health check but found no acute medical problems. However, both were assessed using the clinical frailty scale (Rockwood et al, 2005; Acute Frailty Network, 2020; Rockwood and Theou, 2020), which is commonly used across healthcare to describe frailty (Table 1). The couple were scored as being moderately frail. Molly appeared to have some mild memory problems, which she denied was an issue and declined investigation. ACP-LTC planned a follow up to build on the relationship and carry out further assessment once trust was established. The couple were socially isolated, had no family except distant aged cousins, no friends in the local community, and were managing with a small package of domestic care to help with shopping, cleaning and hot lunch provision. A referral was made to social services (SS) to re-assess care needs of both Molly and Sven.
Table 1. Clinical frailty scale
| No | Category | Description |
|---|---|---|
| 1 | Very fit | These are people who are robust, active, energetic and motivated. They tend to exercise regularly and are among the fittest for their age. |
| 2 | Fit | These are people who have no active disease symptoms but are less fit than category 1. Often, they exercise or are very active occasionally, e.g. seasonally. |
| 3 | Managing well | These are people whose medical problems are well controlled, even if occassionally symptomatic, but often are not regularly active beyond routine walking. |
| 4 | Living with very mild frailty | Previously ‘vulnerable’, this category marks early transition from complete independence. While not dependent on others for daily help, often symptoms limit activities. A common complaint is being ‘slowed up’ and/or being tired during the day. |
| 5 | Living with mild frailty | These people often have more evident slowing and need help with high order instrumental activities of daily living (finance, transportation, heavy housework). Typically, mild frailty progressively impairs shopping and walking outside alone, meal preparation, taking medications and begins to restrict light housework. |
| 6 | Living with moderately fraityl | These people need help with all outside activites and with keeping house. Inside, they often have problems with stairs and need help with bathing and might need minimal assistance (cuing, standby) with dressing. |
| 7 | Living with severe frailty | These people are completely dependent for personal care, from whatever cause (physical or cognitive). Even so, they seem stable and not at high risk of dying (within 6 months). |
| 8 | Living with very severe frailty | These people are completely dependent, approaching end of life. Typically, they could not recover even from a minor illness. |
| 9 | Terminally ill | These people are approaching the end of life. This category applies to people with a life expectancy <6 months, who are not otherwise living with severe frailty (many terminally ill people can still exercise until very close to death). |
Scoring frailty in people with dementia
The degree of frailty corresponds to the degree of dementia:
- Common symptoms in mild dementia include forgetting the details of a recent event, though still remembering the event itself, repeating the same question/story and social withdrawal
- In moderate dementia, recent memory is very impaired, even though the person can seemingly remember their past life events well; they can do personal care with prompting
- In severe dementia, the person cannot do personal care without help
After 10 days, Sven had a fall at home and was admitted to hospital. Molly was unable to get into bed without Sven’s help, so she slept in her chair. Molly's legs became oedematous and began to leak, requiring daily nurse visits. The community rehab team, made up of combined physio and occupational therapists, reviewed Molly, but she could not use the aids available to lift legs into bed. Molly was offered a package of care by SS to help her in and out of bed but the package did not meet her needs. Therefore, she declined the help. ACP-LTC and community nurses tried to persuade Molly, but to no avail. Molly stated that once Sven was home, she would be fine and would wait. She rang the ward several times a day asking them to send him home.
After three weeks, the hospital reported that Sven was nearing end of life. Molly had not seen him since admission. ACP-LTC and SS tried to arrange a visit but Molly declined. Some 3 days later, Sven died. The ward did not call Molly, as it was a bank holiday weekend and they knew she was home alone. ACP-LTC received a message the next day asking them to tell Molly. This was a difficult visit and there was no one to support Molly in her grief. ACP-LTC stayed as long as they could, preparing food and drinks. They asked neighbours if they could call in to check if Molly was okay.
Molly remained at home; her cognition declined and she became muddled about recent events. Her legs continued to leak as she stayed in her chair day and night, and her pressure areas started to break down. She declined care even though she knew that Sven was not coming home. She said she did not know what to do. She asked staff and neighbours if she could stay with them rather than go into a home. ACP-LTC, the general practitioner and community nurses felt she needed placement to keep her safe and Molly initially agreed, but later changed her mind. Health staff felt Molly lacked capacity to make this complex decision. Emergency home carers were arranged, but Molly declined their interventions, so they withdrew. SS staff assessed her as having capacity to decline respite and care.
About 5 weeks after Sven's death, Molly fell down and was admitted to hospital. During admission, her level of function decreased: she could no longer stand, became incontinent, her cognition further declined, and she was discharged to a care home.
Undertaking the investigation
Dispassionately reviewing this poignant case has taken time for those involved. It is not an isolated occurrence for staff working in the community to build close relationships with their patients (Queen's Nursing Institute (QNI), 2016) and when best outcomes are not achieved, it takes time for staff to process the emotional impact. This case deeply touched us and it felt important to find learning from the experience to improve our practice. This reflection is a core principle of nursing as defined by the NMC Code (2023).
A discussion was arranged with the social worker and assistant who had been involved in the case to gather insights into SS perspective. The investigation needed to examine how the organisations worked together and where changes to this might have affected the outcomes. The intention was to engage in collaborative reflection and discover if closer working practices held the key to improvement. This discussion altered the ACP-LTC's understanding of SS motivations and interventions, which allowed the development of themes that otherwise may have remained unexplored.
Pragmatic evaluation utilised our organisational Root Cause Analysis (RCA)Tool and reporting form. This structure helped to organise thoughts and provided a framework for setting SMART improvement targets. The structure is summarised in Table 2.
Table 2. Structure of investigation
| Headings | Information recorded | Sources of information |
|---|---|---|
| Summary and consequences | Background of case, Interventions and outcomes |
|
| Scope of investigation |
|
|
| Chronology of events | Timeline of interventions from all services done independently by two people and then compared to ensure all relevant events captured |
|
| Involvement and support of patient and relatives | This section highlighted the extreme isolation of the couple in this case, as there was no one else involved to speak to about their perspective on the situation |
|
| Investigation action plan | Setting SMART targets to address highlighted issues | Developed by ACP-LTC, then shared with social service colleagues |
The authors reviewed the case individually. They then compared findings and developed themes. Contributing factors were captured in a fishbone—a simplified version from this RCA—where the head of the fish is the problem and the bones record the issues uncovered (Cox and Sandberg, 2018). This method can clarify and streamline thought processes and is a visual aid to identify what happened and where improvements can be made (Figure 1).
The Five Whys (Serrat, 2017) process was used to interrogate these themes. This technique invites the reviewer to capture an identified problem in a concise statement and then ask the question ‘why’ to explore causation. The theory asks why of each subsequent answer and will uncover the root of the problem after five rounds of questioning; Box 1 is an example of how the Five Whys were used with one of the themes in this case.
Box 1.Example of Five Whys approach, adapted from Serrat 2017)Statement: Inadequate care for a frail older patientWHY? Patient not accepting care visits that had been offeredWHY? Visits were at an unsuitable time for the patientWHY? Lack of flexibility in service available; service hours did not cover preferred visit timeWHY? Patient had a fixed routine and did not wish to deviate to allow for care visitsWHY? Health and social care personnel may not have highlighted risks/benefits in such a way that the patient felt modifying routine was acceptable; patient may not have understood the implications of going without care; patient may have had capacity to make an ‘unwise decision’ as perceived by ACP-LTC or SS.
The limitations of using either technique as a standalone, as argued by Card (2017), were ameliorated by the use of a combination of methods. The investigation was then written up as a report and shared with SS, who felt the findings were representative of the case and agreed with the recommendations. They declined the invitation to co-author this article, citing lack of time.
Discussion of identified themes
The need for advanced care planning in co-caring situations
Advanced care planning is primarily focused on a patient's wishes around ceiling of care and location of care if health deteriorates. This study highlights a need to look at the wider implications of deteriorating health in co-caring couples, where interdependence is key to their ability to live with relatively little support (Greenwood et al, 2019; and Happ et al, 2022). Joint advanced care planning discussions that record couples’ wishes in a crisis, would be beneficial. There would be a logic to tying this into Recommended Summary Plan for Emergency Care and Treatment (ReSPECT), which supports conversations (Fritz et al, 2017), or as part of a wider Making Every Contact Count (MECC) agenda (HEE, 2020b). MECC is a national initiative across health and social care, for staff at all levels, which advocates for the incorporation of health and wellbeing advice into routine contact with patients. Efforts from those involved with Molly and Sven to talk about ways to prevent future crises should be seen as being encompassed within this, and as such, is not just the responsibility of one service.
If, at initial contact, a long-term view was taken, it may have been possible to develop a plan that identified strategies that both Molly and Sven may have felt comfortable with. After Sven was admitted to hospital, Molly felt unable to make decisions. If there had been prior joint discussions about her future vulnerability, it may have assisted this process.
Capacity assessed through different lenses
Both services adhere to a framework of professional responsibility and a shared ethical standpoint of beneficence and nonmaleficence (NMC, 2023) (British Association of Social Workers (BASW), 2021), but this does not always lead to the same conclusions being drawn. In this case, SS assessments concluded that Molly had capacity to make decisions about her care, whereas the healthcare team disagreed. When discussed by ACP-LTC and SS, we discovered a disparity in how we weighed different aspects of the decision to be made. The social lens focused on:
- Promotion of dignity through freedom of choice
- Legal and financial considerations
- Molly’s ability to perform activities of daily living
The health lens focused on:
- Patient safety, including reportable harms
- Immediate risk of clinical deterioration
- Hospital admission avoidance
Going against a patient's expressed wish—‘I don’t want to go into a care home’—starts a legal process for SS, which requires significant proof to support going against a patient's wishes. In healthcare, we view the risk versus benefit in a more simplistic and immediate way. A better understanding of each other's philosophy and procedures through closer working, would be beneficial. Joint assessment in these complex situations would be of benefit to give patients both health and social perspectives to assist in decision-making.
Using safeguarding systems appropriately to support questions of capacity
This investigation highlighted confusion around use of safeguarding policy and procedure. While, ACP-LTC completed adverse events and discussed with in-house safeguarding, it was difficult to establish if this was a true safeguarding concern for self-neglect. As SS were involved, ACP-LTC assumed they would discuss with the SS safeguarding team, but never directly asked if this had been done. In hindsight, the ACP-LTC concerns should have been formalised by submission of a safeguarding alerter form. This would have supported the SS team involved to escalate the case, while providing documentary evidence of health professionals’ opinions on the risks to Molly.
Challenges when care is not accepted
Home care is currently an over-stretched resource, leading to difficulties establishing packages of care. SS worked hard to try to source care but when carers attended, Molly declined personal care on three consecutive occasions. This led to the service being withdrawn. The ‘expectation that needs will be adequately met’ is Sripad et al’s (2021) description of the precursor to trust. In our experience, time and continuity are what trust is built upon. When neither is present, trust cannot develop and patients decline care. Through provision of adequate time to build this trust with carers, Molly may have seen the benefit of allowing care to meet her needs and thus, avoid admission. Investing time at the start of a care package to ensure its success could save time and resource in the long term by proactively addressing needs to reduce risks of admission.
Compassion fatigue
This theme emerged through reflective discussion with SS colleagues. There was a collective feeling of futility in facing these complex social situations with a limited armoury. When failure occurs, the message from the wider system is ‘we hear you; there is nothing new to offer; but keep going’. Peters’ (2018) exploration of the concept of compassion fatigue (CF) highlights that staff working in an overburdened health and social care system are at risk of CF. Meta analysis carried out by Zhang et al (2018) found no community-based studies, suggesting community CF needs further research to identify the unique factors at play here.
In the context of this case study, we identify staff developing CF due to inadequate interventions leading to adverse outcomes, despite early identification of risk. This reflection led us to ask if we had examined all potential solutions at all points for Molly and Sven. Did our previous experience of failure lead us to ignore some avenues we could have explored? We concluded that we had low outcome expectations based on our knowledge and experience of current services. We could have collaborated more closely, but CF may have reduced our pursuance of questions to which we anticipated receiving a negative response.
Learning and moving forward
This case highlighted areas where we could improve our practice and develop a wider scope to advanced planning discussions to encompass crisis planning for co-caring couples. Table 3 is an abridged version of the SMART plan developed by the authors.
Table 3. SMART action plan
| Issue | Action | Implementation |
|---|---|---|
| Crisis implications for co-caring frail socially isolated couples not routinely considered or discussed | Using Making Every Contact Count (MECC) principles and increased use of Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) alongside discussions to include crisis management | Advanced clinical practitioners for long-term conditions (ACP-LTC) to promote use of MECC and ReSPECT plus system to record advanced wishes in a way that's visible across organisations |
| Healthcare and social services are viewing capacity through different lenses, leading to different interpretations of the same answer |
|
MDT structure to identify these patients and named ACP and social workers to work more closely together from outset |
| Identifying safeguarding concerns can be difficult when fluctuating capacity and unwise decision-making add layers of complexity |
|
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| Patients who do not engage with social care have offer withdrawn due to pressures on services | In complex cases advanced clinical practitioners to work with social services to develop care plans, including time needed to build trust and establish a package of care |
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| Compassion fatigue in staff can lead to reduction in problem-solving options explored | Our prior experience of failure should not influence our capacity to try and resolve complex situations | We need to be mindful of our own fatigue and ensure each individual is offered all the opportunities and interventions at our disposal |
Conclusion
We invite other professionals to consider crisis planning as a proactive intervention alongside ReSPECT conversations or local advanced planning structures. This group of co-caring, socially isolated patients, whose care is largely managed in the community, is a demographic that is continuing to grow (Carers UK, 2015). The implications of this for a shrinking workforce need innovation to address the challenges it will continue to present.
Our action plan calls for early identification of co-caring couples, to facilitate joint advanced care discussions. If one half of a dyadic partnership is no longer able to support the other, such discussions would highlight risk factors, allowing health and social care to instigate collaborative planning. The responsibility for identification of this vulnerable group lies with all staff, whether they begin the discussion themselves, or appropriately refer them within their local structure. This is a situation where MECC principles can be applied to complex situations, enabling proactive steps to reduce potential risks.
The authors hope that adopting this approach will lead to better outcomes for patients through helping them understand the potential implications of a crisis and facilitating discussions and planning for these circumstances as a couple rather than alone, while in a state of crisis. Working with patients and colleagues from across the MDT to establish crisis planning should reduce time and resources spent in managing it after the fact. Risk identification could prevent it from occurring.
Community caseloads are expanding nationwide, in volume and in complexity. Reducing staff numbers can mean that services may deliver less proactive care, which is vital in keeping patients well at home (QNI, 2023). Increased pressures on primary care means housebound patients, anecdotally, are reporting that community staff are their sole contact with healthcare. This situation is leading to increased risk of CF, as staff fail to prevent harm with limited available interventions to manage complex situations. As individuals, we need to be mindful of this and look for collegiate and organisational support to help manage the risk this presents. Further research into CF risks in community settings needs to be undertaken to identify CF reduction strategies.
The authors acknowledge that broad conclusions cannot be drawn from a one-off case study; it has provided the catalyst to explore this subject, develop an action plan and track whether anticipated outcomes are achieved by its implementation. We intend to research and write further on this subject in future.
Key points
- The ageing population includes an increasing number of co-caring couples who are dependent on each other to live independently at home
- Advanced care planning conversations should consider the dyadic dynamics of co-caring couples and include planning for potential health crises
- Health and social care need to work closely with co-caring couples to ensure their needs are recognised and the full range of support options are considered
- All health and social care staff could use MECC principles to assist in early identification of these couples and start working with them early to reduce risk
- Compassion fatigue impacts on health workers’ ability to manage complex cases and needs to be recognised and addressed on an individual and organisational level.
CPD reflective questions
- Within your caseload, can you think of couples like Sven and Molly? What advanced planning structures do you use locally and as a nurse, and what is your involvement in this process?
- How do you work within your MDT? Are there clear channels of communication and would you know how and when to escalate to involve the wider team in a situation you identify as containing risk?
- Nurses are often asked to complete capacity assessments; do you feel you have adequate training and support to make these assessments?
- This study highlighted compassion fatigue as a theme which could impair nursing judgement. Is this an issue that feels familiar to you and are there support mechanisms where you work to help manage this?