When the cupcakes are not enough. The case for improving delirium awareness through involving all carers by Shibley Rahman

I like cupcakes a lot, but photos of them on Twitter in support of “World Delirium Awareness Day” today will not effect the change we need to see in delirium care. How can this change actually take place?  I believe strongly that organisations should primarily look beyond their immediate organisation, and include family carers in the formation, analysis and implementation of strategy.

Why involve a carer anyway?

I have personal lived experience of being excluded as a carer for my mum, for example, not receiving any updates about mum’s medical condition or prescribing, delirium not being mentioned on the discharge summary, or in ward rounds.

There is a known issue of some health and social care staff not knowing as much about delirium as might be desirable. This problem could be addressed with education and training. Some inpatients may have no immediate friends or family. Carers, including paid and unpaid family members, are an under-utilised resource as care partners. This under-utilisation is especially bad for patients with cognitive impairment, either acute or chronic in aetiology, because of pitfalls in not making the right diagnosis, not involving key people in shared decision-making, ineffective discharge planning, and inadequate prevention of future delirium episodes. Carers, including unpaid family carers, ideally need to be “upskilled” to recognise delirium, a medical emergency, in the community. This is not, however, an argument for a volunteer unpaid economy replacing a burgeoning welfare state; this is an argument instead for recognising and valuing all human capital.

The wider challenges of organisations responding to challenges such as delirium

In a traditional framing, formal leaders uphold the culture of an organisation through execution of a corporate strategy. Distributed leadership, like co-production, emphasises working with people rather having things done to people. For me, there is a strong case to look to the approach of distributed leadership in delirium care, because of the fundamentally interprofessional nature of care as well as the complexity of the field [1]. It is hard to see why the ‘permission’ to talk about delirium as a medical emergency should have to come from board level; and in fairness nobody is proposing this. It is especially morally unacceptable for patients and carers themselves to become disenfranchised from the policy which purports to work for them.

Many trained specialists can spot delirium easily. There’s a lot of delirium about in hospitals, but there’s presumably a lot of it also which goes unrecognised in care homes, or care at home. Delirium is unacceptable to miss in a person experiencing an abrupt change in personality and behaviour, for example after an operation for a hip fracture or on the background of dementia.  However, delirium is possibly like any other grand societal challenge. Grand societal challenges, such as climate change, food security, and ageing, are generally seen in organisational studies as parts of a turbulent and unpredictable context to which organisations must adapt. For organisations to fit in with the wider environment, when problems have been on the agenda for a prolonged time, a coherent and self-reproducing system of practices are said to tend to emerge to deal with these problems, “privileging regular practices over innovative ones” [2]. In the business management literature, healthcare organisations have been described as ‘negotiated orders’ because physicians have the power to block decisions. All clinicians, including carers, should be engaged in a change process or in a new strategy for it to succeed [3].

If healthcare organisations were considered like other organisations, more attention would arguably be given to the nature of the knowledge economy. “Tacit knowledge” is non-codified knowledge that is acquired via the informal take-up of learning behaviour and procedures; it is often referred to as “know-how”. The relationship between tacit and codified knowledge is acknowledged to be complex, and contributes to the dynamic nature of knowledge; knowledge transfer occurs when knowledge is diffused from the individual to the group and beyond [4].

Carers and leadership

A central issue, largely ignored in my opinion, is that “knowledge” is held in various different places in healthcare which includes outside the formal organisations. In organisational theory, ‘boundaries’ exist to buffer organisations against environmental uncertainties and threats in the outside world. Evidence of such buffering includes formal strategies and procedures to protect organisations from outside interference, such as from informal carers [5].

The ‘place’ of the carer in triadic relationships involving carers, patients and professionals has long been established in the clinical literature. This relationship-based approach has led to greater campaigning by charities, such as the Carers’ Trust (the Triangle of Care), calling for greater strategic involvement of carers, and in national policy.  Such an aspiration might be a valid call for action in the NHS, and sits naturally within strategy, but may find itself disabled by the wrong culture or leadership within the NHS. There is currently an uncertainty about the follow-up of older patients who have experienced delirium as a result of COVID19 in the present pandemic, and a reconfiguration of NHS delirium follow-up services is certainly unresolved [6]. Carers could provide insights, but “wilful blindness” to carers could have dire consequences for patients with long-term cognitive impairment.

Delirium is essentially a neuropsychiatric disorder, with important internal medicine causes to exclude, but one which affects the mind and body acutely [7]. The neural substrates are not yet known, nor indeed is the exact nature of the aftermath. The mere presence of delirium may be a signpost to an underlying sinister cause, and one cannot stand by while problematic behaviours reveal themselves. It is not surprising that carers become in a sense “secondary victims” to the delirium episode itself, developing mood disorders such as anxiety and depression [8]. There is good evidence that there is scope for improving the quality of life of carers of people with dementia [9], for example, and there needs to be a better evidence base collected for delirium in future. It feels like there are few options for delirium care: hospital admission is perceived as a crisis and has the polar opposite effect to the respite actually needed [10]. As well as the delirium itself, the hospital admission can be a profoundly depersonalising process. The end result for many patients is that they lose social connections with the outside world, further potentially exacerbating their distress [11].

Who cares about the carers?

There has been sustained political interest over at least a couple of decades regarding the inclusion of carers [12], and there is no doubt that carers have been utilised in marketing strategies of the NHS. But the case to be made for involving carers is not ultimately one of public relations, “comms” and branding, but one of improved quality in care. Otherwise, saying ‘what matters to carers’ is trite, meaningless and vacuous, if there is no follow-up. A hospital admission for delirium is a sentinel event for all those involved, and poor patient and carer experience often involves poor communication – for example not even telling carers when the ward round will take place. Poor communication lies at the heart of problems from the perspective of many patients and carers, who often find themselves unable to relay concerns [13]; there are formidable problems in articulation by many patients coping with illness [14]. It is known that family carers have made it known that they want to be involved, informed and updated  and yet they are not involved [15].

Conclusion

What could and should happen in delirium, of course, might be gleaned from other fields of medicine, where the evidence base for carer interventions is more established (such as stroke, for example [16]). Action is needed. It might be that, left to its own devices, there will be no improved cultural consciousness of delirium in acute hospitals. Legislating for carers’ rights has been seen as necessary in Norway [17].

Clearly, in improving hospital care of patients with delirium, one ideally would “not start from here”. But now that we’ve decided that we want to improve delirium awareness in the NHS, as part of global initiatives, what will this really mean for the improvement in quality in care required by patients and carers? Improved delirium care is essentially about optimising patient safety as well as experience, and it is recognised that, overall, organisations need effective leadership to ensure effectiveness of implantation of values and strategy. This leadership needs to include carers.

Infographics and cupcakes on Twitter may not be enough.

References 

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Dr Shibley Rahman

Dr Shibley Rahman is currently a special advisor in disability for the NHS Practitioner Health. He still actively researches in dementia and delirium predominantly, having successfully completed his Ph.D. from Cambridge. After his junior medical hospital posts, he became physically disabled, but he completed in London successfully his MBA (with a special interest in performance management) and his Master of Law (with a special interest in equality and discrimination).

Declaration of interests

I have read and understood the BMJ Group policy on declaration of interests and declare the following interests: I am a lot of the time an unpaid family carer.

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