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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.
My most recent experience of delirium was truly terrifying, to the point that, as a care partner of a close relative with dementia experiencing delirium, I felt I needed counselling about this admission to a London teaching hospital. I have witnessed delirium ‘around the clock’ for half a month so far.
Delirium is not for me a matter of Twitter hashtags, gimmicks or infograms, but a very serious issue I wish to be taken much more seriously. Traditionalists in neurology, for example in the tradition of Gall or Broca, pride themselves on localisation of function – in other words a particular constellation of signs will tell you where the lesion is. But this reason for me is insufficient why academic neurologists and psychiatrists should be disinterested in delirium. Where for example is the research which explains the neural substrates of hypoactive and hyperactive delirium? How long do ‘sleep episodes’ last for? Is it a good idea to wake someone up while he is sleeping? Are there are any neuroprotective agents which prevent long term deterioration after delirium? How much of the delirium will the person experiencing it actually remember?
In a paper by Profs. John Young and Sharon Inouye, the following case scenario is presented:
“An elderly man is recovering from a heart attack and seems to want to lie in bed. He is polite when approached, but sleepy, and he doesn’t seem interested in eating or drinking. Sometimes his speech is incoherent and he doesn’t seem to follow what is said to him.”
Yet this is virtually a carbon copy of the state of my relative when discharged under ‘discharge to assess’. The relative, who also could not mobilise at all (due to the delirium and viral pneumonia), was unmanageable for me at home. I live with her, and unfortunately she had to boomerang bang into the same hospital three days after being discharged ‘medically fit for discharge’. As it happens, for virtually all of the nineteen-day hospital re-admission, many factors conspired to ensure my relative stayed bed-bound, totally unusual for her. It was with a very heavy heart that I decided to call ‘999’, as the hospital environment itself often precipitates or exacerbates episodes of delirium..
The diagnosis at that stage was hypoactive delirium, although the picture became more mixed in the subsequent few days. My relative was admitted, and thought to have a respiratory tract infection, constipation and dehydration. She also lives with frailty and dementia.
It is claimed that, ‘for the family and health-care staff, clear communication, education, and emotional support are vital components to assist with decision making and direct the treatment care plan’, but I felt all three were lacking in this admission. Nobody told me about what to expect in the delirium, or offered me any support for my distress.
If you read the page on “Dementia UK” website about delirium, you are offered the following advice:
“keep calm and reassure the person”
A different HCA in the bay every day and every night is not reassuring.
“observe the person to see if they are in any pain”
The paracetamol was written up prn. My relative could not remember if she was in pain, and none of the nursing staff asked me as her full-time carer if she was in pain.
“avoid too much stimulation”
the ward had a noisy bleeping air mattress which was bleeping all the time, and at night the lights were often bright.
“if possible offer them drinks to maintain hydration”
this simply didn’t happen
Whilst my own regulator, the General Medical Council, takes heavy criticism on a daily basis, I can frankly say that the GMC code on communication (“Communicate effectively” in “Duties of a Doctor”) was flatly ignored in my relative’s admission:
31. You must listen to patients, take account of their views, and respond honestly to their questions.
32. You must give patients he information they want or need to know in a way they can understand. You should make sure that arrangements are made, wherever possible, to meet patients’ language and communication needs.
33. You must be considerate to those close to the patient and be sensitive and responsive in giving them information and support.
34. When you are on duty you must be readily accessible to patients and colleagues seeking information, advice or support.”
John’s Campaign, for me, has to be more than allowing care partners to sit by patients’ beds for longer than a few hours. To make delirium management work, care partners, where available, should be fully involved. I was not asked once by clinician how my relative’s function had dropped off a cliff, nor indeed what she was capable of doing prior to admission.
For me, the initial ‘head rush’ of my relative was astonishing – she was agitated with a blood pressure of 200/110. I subsequently discovered that high levels of cortisol had been suggested to be associated with acute stress in precipitating and/or sustaining delirium. (Neuroimmunomodulation. 2005;12:60–66).
Of course, I agree with letting the treating physicians to ‘get on with it’, but it was staggering how none of the rationalisation of the medications was ever communicated with me (including the discontinuation of the cholinesterase inhibitor). The cholinergic system has a key role in cognition and attention, and it is not surprising, therefore, that there is some evidence to support a role for cholinergic deficiency in delirium. For example, anticholinergic drugs can induce delirium and often contribute substantially to the delirium seen in hospitalized patients, and cholinergic deficiency is commonly implicated in the pathophysiology of delirium.
Bidzan and Bidzan (2012) have described a 62-year-old female diagnosed with Alzheimer’s disease, who on sudden discontinuation of donepezi experienced a worsening of the dementia symptoms, culminating in delirium. When donepezil was re-prescribed, the delirium resolved and the patient’s mental state stabilised. I would also find lorazepam and midazolam prescribed to my relative, without any communication with us, when it is believed by some that these can actively worsen delirium.
None of the following points from ‘Concise guidance to good practice’ from the Royal College of Physicians of London on delirium (2006) were followed in the course of my relative’s hospital admission.
“A history from a relative or carer about the onset and course of the confusion is essential to help distinguish between delirium and dementia
Patients at high risk should be identified at admission and prevention strategies incorporatedinto their care plan
Many patients with delirium are unable to provide an accurate history. Wherever possible, corroboration should be sought from the carer, general practitioner or any source with good knowledge of them.
The patient should be nursed in a good sensory environment and with a reality orientation approach, and with involvement of the multidisciplinary team.
Keep the use of sedatives and major tranquillisers to a minimum.
Review all medication at least every 24 hours.
Senior doctors and nurses should ensure that doctors in training and nurses are able torecognise and treat delirium.”
I feel that non-pharmacological strategies are the first-line treatments for all patients with delirium, and yet as a care partner I was offered absolutely no help with this. I was not encouraged over any reorientation and behavioral intervention, or advised on pretty standard advice such as using clear instructions and make frequent eye contact.
The hospital bed itself had a bed rail. But it is advised that, “physical restraints should be avoided because they lead to decreased mobility, increased agitation, greater risk of injury, and prolongation of delirium.”
As the ultimate insult, the hospital in question refused to talk to me about my experience of the admission as part of their ‘Friends and Family’ feedback, only because the relative in question had limited memory of the actual admission itself.
As a medical student, I thought of delirium as a list of causes, and, even as a foundation doctor, I had little experience of it. But I do feel now it should no longer remain in the blindspot of some doctors, particularly as the experience was so distressing for me.
For a start, the Royal Free’s obsession with ‘medically fit for discharge’ does not seem to include whether my mum’s intake of food and drink had fallen off a cliff. She was incoherently rambling, and looked as if she was sedated and half-asleep. This is typical hypoactive delirium, and made my mum’s discharge to assess last week unsurprisingly a complete nightmare for me, her full time carer with whom she lives.
It seems totally unimportant to the therapists on this ward at the Royal Free that she has lucid intervals when she can interact with people. Instead, the therapists are uniquely focused on their task-centered care, performing tasks at their time and convenience, irrespective of which persons are awake or which family is around. As a proponent of person-centred care, I find this totally objectionable, as we now enter two whole weeks of mum deconditioning in bed. For all the attention to ‘end PJ paralysis’, I doubt thanks to the inattention of the therapists at the Royal Free, mum will ever gain her independence again. Her food and drink intake, despite palliation needs, had fallen off a cliff, due to the delirium. She was totally ambulant before. The label of ‘dementia’ rather than opening doors has sent her instead hurtling down a route of ‘terminal’ and ‘end of life’, when she was to all intents and purposes ‘living well’ in the community.
My mum is very light-weight, and is very frail. The diagnosis of dementia, with all drugs crossed of including her cognitive enhancers, never mind rebound of an anticholinergic delirium, has become like a noose round her neck, with the frailty completely ignored. Twice I have had to request the medical team to cross off benzodiazepines, midazolam and lorazepam, off the drug chart, which most people accept can be deliriumogenic. The ward has often been very noisy at night, making it unsurprising many patients are so sleepy during the way, whether or not they have been written up for sedating drugs without any discussion with patient or family. The nurses on the ward, however, are truly outstanding.
Some healthcare assistants are very good. Some overreach themselves with banal phrases such as ‘the blood pressure is PERFECT’ and deliberating facing the electronic blood pressure monitor so that the reading is out of sight. The culture is positively antagonistic, with some threatening to ‘report you for being abusive’, if a cleaner sweeps under your feet while you’re sitting at a chair without any warning, or if you wish to connect Mum on Skype with Kate Swaffer in Australia as a bit of reminiscence. Incidentally, the same healthcare assistant who reported me for that Skype was later sat in the corner with her headphones on chatting on her mobile phone, while patients were calling, and also was feeding my mum at high velocity even when she had not cleared the current mouthful.
I had no choice but to seek my mum to get mum admitted, for dehydration and her falling oxygen saturations, even though the admission itself worsened delirium. There is no attempt to reorient mum in a normal sleep-day cycle, and the regular ‘observations’ have the opposite of a calming effect. The precise diagnosis for mum is a mixed delirium, as she can be agitated. I would never dare to inflict my diagnosis or management on mum, given the code of conduct for registered medical professionals. There seems culturally a reluctance to negotiate with the clear diagnosis of delirium, or a discussion of how function may be recoverable, as the underlying pneumonia is ‘cured’ (or more like delirium does not get coded properly as a diagnosis). There seems to be little appreciation that delirium is worth spotting, and is a significant serious risk itself. When you consider that nobody introduces themselves or what they do, apart from a significant outstanding minority, you have to acknowledge there are good reasons for patients being so confused.
I’ve been really appalled with the ‘acute deterioration of dementia’ being such a prevalent attitude, and no willingness to embrace mum’s function prior to the admission. That is entirely in keeping for the reluctance of everyone to know what mum’s function was like prior to admission. It says on mum’s board that she likes word searches. I can say hand on heart that she has never done a word search in her life.
And whilst medically ‘fit’, she now can’t walk – and that’s new from this admission.