Covid in care and nursing homes in the UK has become the latest disaster, for example, “the disease may be circulating in more than 50% of nursing homes and mortality is significantly higher than official figures.”
Persons with cognitive impairment, examples of which include delirium and dementia, at the best of times can present a challenge for what we frame as “person-centred care”.
At a practical level, certain individuals who have been living with a chronic, progressive dementia for some time may lose all sense of what time of day it is. At night-time, they may get up repeatedly to check that the front door is locked, and get very anxious about this obsession unless that compulsive check is made. And, because they forget quickly, this can go on many times at night.
Or else, a person may suddenly have a drastic change in behaviour and thinking, and get quite aggressive or agitated, hyperactive, or even quite grandiose and flamboyant in behaviour. Such a flip into ‘hyperactive delirium’ might appear out of nowhere, but could result in a person also wanting to roam around, apparently without an easily understandable purpose.
Both dementia and delirium are significant issues in the era of “Covid19″, infection with the novel coronavirus. Dementia is a “frailty syndrome”, conveying the notion that people with dementia have an increased vulnerability, such that they never quite bounce back to where they were after a challenge such as an infection. The abrupt change which we call delirium can have a number of causes, which we largely view as predisposing or precipitating factors, but it’s relevant to Covid that a respiratory infection can cause hypoxia, electrolyte imbalances and sepsis/encephalopathy which all can produce or exacerbate a delirium.
I should like to focus here on delirium. Helpfully, the HELP team (“Hospital Elder Life Program”) has “created a resource page for all things COVID-19 and delirium, including a Patient Toolkit with all the materials necessary to help older adults maintain cognitive and physical functioning – and prevent delirium“. Delirium can occur out-of-the-blue in any care setting, including the acute hospital, care or nursing home, or at home. It’s tempting to ‘suspend’ personhood in someone experiencing an episode of delirium, as he is ‘not himself’. But this is a slippery slope, to denying personhood, identity of that person, and, at worst, might lead to denial of human rights. Human rights and person-centred care are enshrined in the clinical regulation of professionals, practitioners and institutions, so it would be unfeasible for delirium (and dementia) care to deny human rights or personhood. We know that there has been a number of attempts, presented as ‘social movements’, of activists, said to be ‘living with dementia’, publicised as upholding their rights. This has, of course, got a formidable precedent in the disability movement; dementia under English law is classified as a disability under the Equality Act because of the chronic effects of it. But such rights-based approaches, mainly presented en masse from charities and social enterprises, have tended to focus on a formulation of rights in an almost consumerist way, in a manner where they can be easily marketed through public communication channels such as the social media.
I believe rights are indeed important and indeed crucial – but such an approach has been rather to trivialise the significance of rights. The intentions are formidable, for example in raising awareness of rights and to try to stop and rail against elder abuse, which can lead to loss of fundamental rights such as liberty, privacy or dignity.
But such a simplistic, yet fundamentally important, approach can ignore what rights actually are. Rights have been the subject of considerable scrutiny in jurisprudence theory, as they are of course fundamental to the law. The late Prof Ronald Dworkin was professor of jurisprudence at UCL, and, through his seminal work, we are encouraged to believe that there are two fundamental frameworks; that rights are normally limited, but in exceptional circumstances absolute, or, otherwise, rights are normally absolute, but in exceptional circumstances limited. This led Dworkin to frame his ‘rights as trumps’ viewpoint, and, as an eminent lawyer trained under HLA Hart at Oxford, his thesis is certainly seminal.
But we all live in a civil society, meaning that rights come with responsibilities, and my ‘right’ has an effect on yours. In other words, you could argue that a resident with dementia can’t be allowed to roam around limitlessly, ignoring physical distancing, because of the risk of infecting others with a highly infectious agent. So it might be tempting, particularly if there are staff cutbacks (for example due to staff being ‘off sick’), to use pharmacological rather than non-pharmacological intervention in such a resident experiencing delirium.
In a recent ‘good practice guide’ from the British Geriatrics Society, entitled “Coronavirus: Managing delirium in confirmed and suspected cases”, it is mooted that, “here these interventions are ineffective or more rapid control is required to reduce the risk of harm to the patient and others, it may be necessary to move to pharmacological management earlier than would normally be considered.” And, observing the legal doctrine of proportionality, fundamental to English law where interventions are deemed both necessary and proportionate, this is a very sensible response to prevent other individuals becoming infected, and possibly because of underlying frailty themselves, difficult to treat.
But this is an admission that human rights are not in fact absolute, universal and inalienable, arguably. We have been conditioned to think that we can’t ‘pick and choose’ our human rights, or certainly can’t choose how or why we would choose to apply them, like an à la carte menu – in the same way we can’t choose which individuals to extradite (because readers of certain newspapers believe strongly that human rights are abused in certain circumstances.)
It might also suggest that our application of human rights in delirium care is context-dependent, which seems disturbing at an intuitive level. But this in itself is not a problem. We know from the recent furore elsewhere that guidelines are not meant to be applied in a blanket way, but should, rather, be tailored at a personal, individual level. The recent (excellent) SIGN 157 guidelines, “Risk reduction and management of delirium, a national clinical guideline”, March 2019, says carefully in the quick summary, “There is insufficient evidence to support a recommendation for the use of antipsychotics, dexmedetomidine, acetylcholinesterase inhibitors or benzodiazepines in the treatment of patients with delirium. Expert opinion supports a role for medication in specific situations such as in patients in intractable distress, and where the safety of the patient and others is compromised.” It says rather, “Healthcare professionals should follow established pathways of good care to manage patients with delirium“, referring to a suite of non-pharmacological multi-component interventions.
The problem with guidelines is that, in actual clinical practise, what originally seemed like a good academic idea can be impractical. Infection control is a key aim of treating the delirium in suspected or proven Covid, and we know that the medical regulator prioritises the prioritisation of treatment. We already know the range of arguments against the use of antipsychotics in delirium, which have been extensively studied elsewhere (for example this Cochrane review), but patient safety is the ultimate issue. The case for pharmacological intervention in residential homes for delirium can be easily made, but what happens in home care or domiciliary care where family members can find themselves easily stressed by a relative roaming around but where pharmacological intervention is not possible? Many persons with advanced dementia are living at home, and this indeed has been a goal of national policy, encouraging ‘independent living’ as far as possible.
Furthermore, it can be difficult to distinguish a propensity to roam around, pejoratively called ‘wandering’, resulting from advanced dementia – traditionally and unhelpfully called BPSD – from delirium. So not all people wandering around, with hyperactive delirium, will have Covid. We already know that older people can present altogether atypically, so not all people who are symptomatic or asymptomatic with Covid may have mounted a temperature or an obvious dry cough. So here does the precautionary principle apply, “a strategy for approaching issues of potential harm when extensive scientific knowledge on the matter is lacking. It emphasizes caution, pausing and review before leaping into new innovations that may prove disastrous“? Does erring on the ‘side of caution’ tip the balance from non-pharmacological to pharmacological interventions?
Arguably, there is a need for vigilance over this matter.
Look at the WHO definition of “elder abuse”.
“Elder abuse is a single or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person. This type of violence constitutes a violation of human rights and includes physical, sexual, psychological, and emotional abuse; financial and material abuse; abandonment; neglect; and serious loss of dignity and respect.”
Inappropriate use of antipsychotics in “BPDD” in dementia or delirium, especially in the context of vulnerable individuals in society behind ‘closed doors’ with no visitors such as friends or relatives, might be an unintended consequence of behaviour in a pandemic that was intended as proportionate.
But, if all else fails, the whole issue for me has brought into sharp focus the relationship between rights and delirium in the context of person-centred care, and this is to be welcome.