Dentures, specs & hearing aids
Amongst the piles of lost-and-found that accumulate in wards, care homes, clinics and hospital laundries across the UK, surely the missing dentures, spectacles and hearing aids point to something wrong with the way care is operating.
‘I’m fine, thank you,’ smiles Mary.
‘Do you know where you are?’
A little louder, ‘Mary, do you know where you are?’
Bending over and shouting in Mary’s ear, ‘Who is the monarch?’
Mary smiles and replies, ‘I’m fine, thank you, I don’t need any more tea.’
And the rest is history, what is sensory impairment becomes cognitive deficit, what was originally a strong Scottish, Nigerian or Indian accent – (take your pick, us medics come from everywhere), becomes a disjointed grouping of vocalisations, gestures and eyebrow raises.
Rapidly, if we are not careful, Mary develops dementia. Sometimes, if the conditions aren’t right, she develops ‘severe dementia’, she becomes senile, her capacity assumed to be lacking and her ability to participate in care negated.
No one necessarily questioned where Mary’s glasses or hearing aid had gone. Lost at the dining table, in the ambulance, the waiting room, taken by another patient, tucked under her pillow and sent with the laundry.
These aids which are often the means by which older people interact with the rest of the world so easily disappear during a period of care; the dentures are lost and the person struggles to eat, they become depressed at their appearance, their inability to eat toast, the process of slipping begins, their nutritional intake declines, they become weaker, this weakness manifests as confusion, they struggle to maintain their balance, they fall, and on and on.
It is so easy for an older person to become dependent during their hospitalisation or care, what might have been a trivial hospital admission for a younger person, can transform the life of someone who is older, change the trajectory of their existence, from independence to dependence, from living at home with risk, to a systematization of their self, something that was not necessarily part of their life plan.
How many older people enter hospital and never leave? Are never aware that the paramedics who carry them from their living-room floor will never bring them back; their secrets, mementos, curios, stashed-away in corners only to be discovered by relatives when clearing-out the house after they have moved-on or died.
All of this may seem a long-way from losing your glasses, but the path can be slippery and the older and the frailer you tend to be, the more rapidly you can move*, the harder it is to stop, to turn around and reverse the process.
So, the next time you see some lost specs or an older person who is struggling to understand what you are saying (and given the jargonization of medicine, this is happening to more and more people all the time), perhaps, slow down, check that they can see and hear you, clarify whether they have had something substantial to eat, ask how they are feeling and if they don’t seem to understand, don’t use that as an excuse to move-on, use that as an excuse to pause and think of another way to communicate.
8 November 2015
Therapeutic lies and false promises…
I have spent the past few days feeling bad –
It is strange, when you discover that something you have been doing, that you had considered ‘right’ is explained to be wrong; it is a little like breaking the law when you don’t know something is illegal … I can’t think of an instance (or, I don’t want to confess), but I am sure everyone knows what I mean. As with the courts, not knowing the law is not an excuse for breaking it and so, as with me, I carry the can.
It is quite easy when I am walking about, doing my job and patients are behaving like patients – they are assuming the role of people who wait to be asked questions, who submissively do what is asked of them and don’t complain.
When this is flipped and patients throw off the shackles of ‘suffering’ either because they know their rights or, because, they don’t know that there are rules, for, why would there be rules when you are not sure where you are, when those around you don’t know what is going-on and even those who seem to be in charge are doing their best to not treat you like patients – they are participating in the undoing of the sick-role, making those in our care feel like people not patients.
And here is the challenge; when a patient, or a person, who is on my ward calls me over and asks when they are going home, I have lots of options open to me, from the honest, ‘I don’t know and even though I am your doctor, it is others such as social workers, the availability of carers and people in back offices who will determine when you will get home.’ – to what I often say, ‘We will get you home very soon.’
This works for most people, but those people who don’t think there is anything wrong and see no reason why they can’t be at home, will then say, ‘I want to go home now. Call me a taxi’ – how do you respond in this situation?
Very often, explaining that they will need help which isn’t available or, we are still treating them for condition x, y or z, doesn’t work. ‘I want to go home now, please get me a taxi’ – and sometimes we end-up in circular arguments – ‘I don’t care if I need help, I feel fine, get me a taxi’
It is now that I usually invoke the martial art of dementia – when distraction, ‘would you like a cup of tea?’ and, diversion, ‘Where is it that you live?’ fail, I often, and usually because I have other things to do will say, ‘I will ask sister where your taxi is, I am sure it is coming shortly.’ This is usually met with acceptance and I am allowed to flee.
This, I understand is a therapeutic lie. (This is sort of OK)
False promises, which I make – yes, I admit it, are when a patient who, as a consequence of their dementia or delirium asks repeatedly, ‘When can I go home?’ – this can happen every few minutes for hours at a time, despite all the techniques and strategies we can think to employ and the patient who has caught my eye and called me over, who has me trapped, and I respond, ‘I’ll go and see, I’ll be back in a second’, or ‘I’ll get you a cup to tea,’ – never to return.
And this is a false promise. (And that, is not OK)
And, I am guilty.
Sometimes it is so very hard managing the competing demands of investigating, diagnosing and treating, different people with different needs, meeting the expectations of relatives and carers and staff, fitting-in too many things in not enough time, that I lapse into these false promises.
So, I ask forgiveness and promise to stop.
12 December 2015
Reducing restrictive interventions
This is the name of a study day I participated-in alongside some of the staff from Mallard Ward this week. It is a wordy title and doesn’t really capture exactly what we expected or what we learned.
Beforehand, some of us had described this as ‘violence and aggression’ training – again, this didn’t seem to fit.
The problem is that we are running a ward caring for older people, many of whom do not realize they are unwell, do not necessarily know where they are, frequently don’t want to not be there and are often afraid.
When trying to care for someone who doesn’t understand what you are doing or why you are doing what you are doing, who, just understands that there is some sort of threat directed at them, no matter how well intentioned – the results are often staff being hit, punched, kicked, pulled, pushed or slapped.
It is sort of an occupational hazard, when attempting to care for older people who are disorientated, this form of attack; as to whether violence and aggression is the right word, I don’t think any of us know; how violent and aggressive can a 95 year old be? The answer is, sometimes, very.
Should the training have been called ‘managing fear and anxiety’ – perhaps; although these emotions aren’t always behind the actions and often the staff are as fearful and anxious as the patients.
We learned about the psychological and physiological responses that take place in our bodies when we experience this sort of conflict, or harm, we learned about the legalities of treating someone who does not want to be treated.
This was the first time many of us had taken the time to explore these ideas openly, in a group, to share our experiences – people trying to do their best, in difficult circumstances, trying to care, when their care isn’t always well received.
So, what do we call it when an 80 year old man punches you? Most of our patients lovingly receive the care that is offered, they appreciate and understand however piecemeal, our intentions, or our sometimes, painful interventions.
Balancing, walking the tightrope that is care is difficult.
I am lucky, I work with a team of people who see the bigger picture, who understand that a meaningful life is one in which we help others, put the needs of others before our own, and thank goodness, for I hate to think where we would be if this compassion, this care, was not the way we are.
Take a moment to think of those nurses, healthcare assistants, therapists and domestics who daily see beyond the fear and the worry of an old person, to the human being who is hiding in the shadows, obscured by layers of disease, for they are what keep us human.
12 December 2015
Catheters, old men & dementia
This, I guess, is a relatively specialist field within medicine, and within the care of people with dementia and delirium. It is however, important, and something that keeps coming-up.
By the age of 50, half of men will experience a degree of prostatic (that is, relating to the prostate, picture below) symptoms – that means, the need to rush to the toilet, waiting a long time to pee, being unable to pee or what I am personally looking least forward to, waking multiple times in the night to pee (we call this ‘nocturia’)
As time marches on, with each passing decade, more men will develop these symptoms, until, in their 80’s and 90’s, they are almost universal.
There are treatments and medicines around to help with the symptoms, the most radical of which is urological surgery to reduce the size of the prostate.
What can happen however is that the enlarged prostate can get to a point where a man is no longer able to fully empty his bladder, we call this chronic retention. Some degree of retention is OK, although, after a certain point, when too much urine remains static, in the bladder for too long, it can predispose to urine infections which makes things worse.
Worst of all (to my mind) is when a man is suddenly unable to pee at all, this we call, ‘acute urinary retention’ and, as you can imagine can be very distressing – some people can reach a point of having litres of urine in their bladder before they are treated. This of course, doesn’t help the kidney function and most of all causes great pain.
If this were to happen to me tomorrow, I would be able to get things sorted pretty quickly, I am sure – I won’t go into the details of how…
Yet, for men living with dementia or those who become confused either because of a urine infection, or very often, another cause, communicating their needs is not always possible; acute urinary retention in this situation, can result in a change of behaviour, profound anxiety, distress, restlessness and discomfort.
If the men are lucky, a doctor or nurse will have adequate savvy to work out the cause, either by feeling their tummy or using a special device called a bladder scanner – which is an ultrasound machine (we have one on my ward donated by DonMentia). A treatment plan can then be worked-out as to how best to help the man (usually, a catheter to drain the urine, relieve the pressure and make them feel better)
There is a problem however; what do you do if that man is so confused, not only does he not understand what is causing his pain, the act of several unfamiliar people surrounding him and inserting different implements around and into his penis causes additional distress?
And, after the event, when a urinary catheter is in place, not knowing what the length of non-latex plastic is or why it is and, as often happens, pulling it our which can cause more trauma, making things worse (there is a water-filled balloon inside).
This is why, the management of this small area of continence in men with dementia and delirium is, to my mind, specialized. We, on Mallard Ward, have encountered this so many times we know what we are doing.
We rarely, or, if at all possible avoid, long-term catheters on Mallard, as they universally are associated with infections, which can make matters worse – either making the man more confused or generally unwell with fever, pain, etc.
Along with our scanner, our most common approach is to use ‘intermittent catheters’ that is, catheters which are inserted once or twice a day – depending on the individual and their symptoms, to empty the bladder, they are then removed, when urine has drained sufficiently, so that, in between times the patient doesn’t have a confusing plastic appendage and also, because it lessens the chance of infection and increases the likelihood of the man peeing normally again (we use certain drugs, and look at other aspects, but I will not go into those here)
Unfortunately, this approach is not standardized across healthcare and within that variation, many men are treated poorly, with the insertion of long-term catheters unnecessarily, given excessive and at times inappropriate sedation to manage these catheters and overall restriction of their liberty and independence, either because they have someone sit 24/7 with them, to stop them fiddling with the tube, or because the catheter bag itself interferes with their ability to walk and get around.
So there, you have a little of the complexity of catheters and water-works.
As with all these things, the solution usually is thinking person-centred, not rushing-in, thinking laterally and compassionately.
9 January 2016
What is dementia?
A while ago I responded to a comment from my brother asking whether there was a difference between Alzheimer’s disease and dementia – this is my attempt to explain;
It might be best to start with the words and where they come-from; Alzheimer’s, as described in my blog here, is named for Aloysius (Alois) Alzheimer, the German doctor who cared for Auguste D and subsequently examined her brain after death*, Alois found ‘plaques and tangles’ in Auguste’s brain and together this disease became known as Alzheimer’s – a disease which usually, although not always, is associated with a slow deterioration affecting personality, memory, orientation, perception and mood.
Vascular dementia, the other common form of the disease tends to happen much more rapidly and has features related to cardiovascular disease, that is, strokes and heart attacks, although the causes (blood pressure, cholesterol, and family history) of Vascular dementia usually are in the background, developing over years, the onset, is often over the course of weeks, if not months. The disease itself, ultimately, has symptoms similar to Alzheimer’s (although not always).
Dementia itself is derived from the Latin de and mens – meaning, ‘without mind’ and not that helpful a term, although it is what we have. The Japanese have taken this a step further and changed the name from Chiho, 痴呆 – ‘dementia’ – to Ninchisho, 認識機能障害, which means, ‘cognitive impairment’.
The main charitable society supporting people with dementia in the UK, The Alzheimer’s Society, is also confusing, as they will help and support anyone with dementia, regardless of aetiology.
Dementia is the term which encompasses the many different diseases; from, Alzheimer’s to Fronto-temporal atrophy – which sometimes causing issues with impulsiveness or lack of control or disinhibition, through to Dementia with Lewy Bodies, which has features of Alzheimer’s and Parkinson’s Disease together, or Posterior Cortical Atrophy – the form of dementia which Terry Pratchett had, affecting initially the back of the brain where visual signals are processed; there are many other forms of dementia, such as those associated with Huntington’s disease, Creutzfelt-Jakob disease and even ‘unspecified dementia’ when the experts don’t quite know what is going-on.
So, perhaps think of dementia as the group – with the specific types of disease as sub-categories.
In the end, it does become very confusing and I often wonder how the person who has dementia perceives things – how they understand what is happening to them, particularly early on. Not everyone is as able to step-outside of their situation as Sir Terry and take an analytical view.
Whether we follow the Japanese and find a new name, or work to continue to change attitudes and behaviours, steering people away from the stigma currently associated with dementia is unclear – it is certainly the bogeyman that TB, cancer and HIV once were, we just need to work towards finding better solutions and ways to support people until we find a way out.
* Not something we routinely do these days… care for someone then perform an autopsy – the two branches of medicine tending to be separate)
9 January 2016
Habit, hospital & older people
Habit is one of the greatest developments in evolution. Habits have allowed us, in particular, as a species, to achieve, to grow, develop and improve.
What is habit? Habits are behaviours that animals form through repetition. What starts as a process of learning, study or drill, after a period of time becomes an act that requires no mental processing – your body is able to run on auto-pilot, freeing-up the rest of your consciousness to do what it does best – think, plan ahead and organise.
An example of one of my habits is what I am doing just-now – typing as I write this; another might be how I brush my teeth, tie my shoe laces or turn the key in the lock when I get home.
It is sometimes more difficult to break habits than to establish them – anyone who has been a smoker, an over-eater or a drinker will understand this; it is one thing to overcome the physiological cravings associated with addiction to nicotine, it is another thing altogether to break the habit.
Habits exist through neural pathways in our brains; these are constantly changing constellations of electrochemical stimulation that over time become established and embedded, like the tracks you see in grass where people have walked or, the fingerprints on your iPad.
How does this relate to older people?
Well, imagine, you have developed a habit – and this is something I can’t do, as I am too young – over decades. Imagine you have lived in a house for fifty or sixty years, with the same morning routine – habit – associated with washing or breakfast or getting-dressed; imagine unexpectedly having that routine disrupted through a hospital admission.
Also consider the multiple layers of disorientation that are likely associated with that time – the ward and bed moves, different staff, location of doors, sinks and toilets, different cutlery, food and light, sounds, sleep patterns – in a bay with three or when times are tough and bed-pressures great, five other people.
The medicines you have established as a habit – every morning – Aspirin, Atenolol, Allopurinol or whatever, being given to you at a different time, in a different way, in a situation that is odd.
Imagine all this disorientation added to what might be an illness, what might be delirium – acute confusion related to pneumonia or a fracture or a stroke; wedded with new medicines – blood thinners, pain killers, sedatives.
Mix this together and those neural pathways – the grooves that have grown over time, that struggle to re-form, to change or alter or evolve.
In this situation; how easy would you find it to re-learn the signals coming your way from the environment, how easy it would be to become disorientated, to fall, to be afraid, anxious or scared, to retreat into yourself.
If we allow habits to do what they do best – manage the day-to-day stuff of life, we can get on with what is important; by changing environments, transporting people in their times of need, when habits are possibly one of the last surviving vestiges of self, we need to look-out.
8 February 2016
I don’t like pathways
Pathways are everywhere in medicine. In fact, I don’t believe you can move anywhere – into hospital or out, from A to B or doctor Y to Z without being caught-up in some sort of pathway.
There is an expectation that patients – that is, people, will follow pre-planned, coordinated and arranged routes. A little like the movement of sausages or boxes or motorcars in a factory.
People, oddly, aren’t like boxes. For although boxes do come in all different shapes and sized, colours, textures and designs, they aren’t quite as complicated as people – they aren’t conscious for a start, and even if they were, they would likely not perceive the world in as many different ways as people – to a box, the world is the world, is the world.
None of my patients seem to fit-into pathways, and that is a problem, for, as I say, the system is bedevilled with pathways. Pathways, in some instances are great – they let those in charge know what is happening – or, should be happening, at any moment in time, they are part of the process for reducing variability (a famous enemy of quality) and they allow planning, prediction and anticipation.
People just don’t seem to coincide with these pathways, much of the time, particularly in medical (as opposed to surgical) disciplines, where variation is seen as a virtue in the former, a complication in the latter.
Again, it is odd, perhaps no coincidence, that the area of medicine that interests me most – delirium, derived from the Latin, ‘to deviate from the furrow’ is in effect a translation of this difficulty. None of my patients keep to the furrow, and that is what I love – the complexity of people, with their infinite variety, combined with the ever-changing presentation of disease and illness;
This is also part of how we, my colleagues on the ward work with our patients – that is, having a broad interpretation of what is OK, what is right, when to get-up, how much to eat, how to walk, what clothes to wear, how to say hello.
A fundamental of dementia care is appreciating that the reality you perceive is very possibly different to that of your patient. Trying to bend their will, distort their vision so that it is closer to yours, does not work. You need to move your understanding, your reality into that of the other.
The neat pathway you have constructed, spent many hours fiddling-with on the computer, just won’t work – you need to move the pathway to where the person is standing, adjust the light to what they need, taper the medicines, adapt.
For, this is one of the central themes of both dementia and delirium, in that adaptation to change is affected. Change, as we know, and as we are constantly reminded, is life – it is the only surety.
Let us move the paths to fit the needs of our patients, let us re-format the routes to recovery, to treatment and care, let us not manipulate the patient or the data, let’s change our responses or behaviours, to fit what is needed.
13 February 2016
I have been hearing more and more hospitals across the UK are using china teacups to support older people during their inpatient stay.
This is great.
The background to this is the use of disposable paper or worse, plastic cups to serve tea or coffee to patients during their time in hospital. Most of us have drunk from one of these cups at some point in the past – my most recent experience was on the way back from Sweden to the UK in March, stuck in Jonkoping airport, because of a blizzard.
The cup was too hot, it became cold quickly and tasted of plastic. Not the best experience. I don’t think I finished the drink, probably leaving it balanced on a table set to spill on another unsuspecting traveller.
In Mallard, my ward in Doncaster, we adopted china teacups when we opened. Acknowledging that as many of our patients are disorientated because of dementia or delirium, and, are also unwell with infections, heart attacks, falls and a multitude of the other unanticipated events that result in older people becoming hospitalised, we wanted to do all we could to help orientate them and feel less anxious at being in an unfamiliar environment.
We also realised that as most of our patients stay in hospital for several days, drinking repeatedly from the standard-issue hospital paper cups was not an incentive to hydration – dehydration being one of the major hazards affecting older people, in part because of the medicines used, such as diuretics, but also because of problems affecting mobility that can discourage them from drinking (many carry the erroneous belief that not drinking will reduce their frequency of having to go for a pee – in many instances the opposite happens, this also increases the risk of infections).
How can we keep our patients hydrated? The usual answer to hydration, at least in a hospital environment it so site a cannula, that is, a small hollow plastic tube into a peripheral vein and run saline or dextrose; this does work – it gets fluids into the body, but is, when you think about it perhaps the least efficient, cost effective or, natural way to have a drink.
(In other words, intravenous saline although a fundamental part of modern medicine is nowhere near as good as a cup of tea.)
Another feature of intravenous cannulae is the message they carry – a modern day meme which translates into, ‘patient/hospital/sick’ – you see this on Casualty and Holby City – the really sick people have cannulae attached to them, and another trope is the confused patient pulling-out the cannula and wanting to leave the emergency department.
The confused person not understanding and often fearing the plastic in their body is a real issue, and again something we want to avoid at all costs, further, that plastic, which in medical terminology is a ‘foreign body’ carries with it a risk of infection and skin damage.
Indeed, is there more wrong with these devices than good? Not if you are critically ill and need emergency treatment, but, if you have become dehydrated or refuse to drink because your preferred crockery isn’t on offer, then, yes.
It wasn’t easy to start using crockery on my ward – there were initial concerns about confused people smashing or throwing cups, and yes, like the rest of us, older, confused patients do drop them, but that I don’t think is a valid justification, also, the cups, not single use, might carry infection. Fortunately, we aren’t living in the time of cholera, and even MRSA is not that adherent when it comes to modern day dish-washers.
Over time the cups have become part of how we do things, the cups, reassuringly, because of attrition, are of different shapes and colours, which to me sends an individualised, homely message. Our visitors use the same cups, showing again, that our patients aren’t different, haven’t lost all their rights and privileges – read, they aren’t prisoners (even on those old-time units that aspire to maintain visiting times).
Getting other areas to adopt the china cups has been more precarious, the service assistants in some parts of the hospital have been vocal in their concern about increases to workload, or the risk of smashes or infections, or any number of other worries that you could think-up about why a mug might be bad.
I think we are getting there.
Person-centred care, where we remember that the patient is a person and, that person is the reason for the existence of the hospital, and our work, where we need to sometimes check ourselves when we slip into modes of process and performance; here the cups come into their own.
I haven’t ever seen a patient when offered a china cup ask for, ‘The paper one instead,’ mostly our patient’s don’t ask for much, they appreciate the care they receive and tolerate our failings.
We can’t wait to be asked, we need to maintain a constant vigil and see that the people lying in the beds could easily be ourselves or our loved ones, indeed, arethe loved ones of others, and attend to their needs with as much delicacy, precision and care as if they were ourselves or our own.
19 June 2016
Night at the hospital
At night you sleep.
That’s the way it is meant to be.
People have been doing this for a very long time, except perhaps for those working night-shifts.
I have never been very good at shifting my sleep-wake pattern and when I was a junior doctor I didn’t so much struggle with the move from days to nights, but the switch back again. I think my circadian rhythm is a little slow.
Today I met a group of nurses, occupational therapists, doctors and a social worker to discuss night time – night in the hospital.
There is an assumption that when the lights go down and the night-staff appear on the scene that things become quiet and still – a little like a scene from Bambi.
It is true that most patients do manage to bed-down for the night, even though, in general it must feel strange – pretty unique really, in that they are trying to sleep on unfamiliar beds some of which make whirring or buzzing noises, but more peculiarly, there is no door to their room, or if there is a door, there isn’t a lock; (I am sure I can remember my grandfather jamming a tipped-over chair behind hotel doors, just to make sure no one would enter).
Sleeping in the hospital, with people coughing, snoring, shifting position, rough curtains separating you from others in the bay, often, confused old men – and, sometimes women, up and about, not getting to sleep, struggling to understand where the heck they are and what is going on.
Night in the hospital is a special place.
Night porters and doctors pad along silent corridors responding to their pagers; critically ill people are wheeled into the emergency department and transferred to intensive care or the operating theatre.
In the meeting we talked about the paucity of information that is conveyed about the night-time in hospital. During the day, there is often little documented in general, that is, unless something specific happens – a patient falls, they are assessed by a therapist or undergo a test; beyond that, much of it is down-time with no texture or detail.
Unusual behaviours are better tolerated during the day than at night – someone who is delirious, pacing the wards, looking for the way home, can be accommodated reassured or redirected – at night, the situation is different.
At night the hazards are greater – the potential to fall, the risk that you will be ‘medicated’ (given medicine to help you sleep which in turn can increase your risk of falling is greater); at night the lights are low and the obstacles abound – at night, there are fewer staff, fewer nurses and healthcare assistants so guide and support you.
Night is a special time when the unexpected or the unplanned happens, when lonesome doctors are left to sort those who have deteriorated.
And yet, in the documentation, for most hospitals across the country, during this period of time –between ten at night and six the next morning little is recorded other than – ‘asleep’ for those who are mostly asleep, ‘awake’ or ‘confused’ for those who don’t manage to settle-down.
On Mallard Ward, we recognised the importance of night times and night-time documentation and we have developed this into an art if not a science, detailing specifically what happens to our patients. On most wards, in most environments, night is a gap in the timeline.
We discussed the pitfalls of this lack of information – just think; we might spend as a health economy thousands of pounds on investigating, treating and caring for someone, only for it all to go wrong when they get home as we have underestimated the amount of support they require at night, or between the times that the carers pop in to check.
We tend to focus on something called ‘discharge’ that is, getting people home, concentrating on the demand for empty beds and flow within the system without considering that unless everything is in place a person will not manage, will not cope and likely deteriorate or fall and end-up back in hospital – I tend to think of this as – ‘Go direct to jail, if you pass Go do not collect £200’ – sigh. A no-frills readmission to hospital tends to be traumatic and almost always has worse outcomes.
The upshot of this meeting is a plan to work on this, to spread the good practice, to learn from one another more about the best ways to ensure that when we have invested time and effort, passion and love and care in the recovery of a person from a fall, a stroke or an infection, that we give them the best chance of success in returning home, to stay at home.
And if their nights are upside down, if for forty years they have been going to work at nine at night, we might need to adapt what we (that is, the system), can offer, after all, the work they did was probably hard and not something for everyone, which in all likelihood has allowed us to either sleep through the night or live through the day.
Let’s celebrate the night workers, those with insomnia or disturbed sleep and acknowledge that this really is just diversity in action.
28 September 2018
This is a term you sometimes hear on the wards, as in, ‘She is very behavioural,’ or, ‘The minute he saw me he started shouting, it’s all behavioural…’
This to me is interesting, particularly in relation to physical or mental health or both.
Mostly this is said about older people who act in a way that is not consistent with their underlying disease – what I mean, is, say someone is crying when you approach them, they may say their back is sore, or their neck, or they feel sick or anxious, the complaint doesn’t really matter.
In medicine, when someone has a symptom that is associated with a certain disease process, that’s OK.
Arthritis – sore hip – OK, ulcer – stomach pain – OK, epilepsy – collapse – OK.
If the symptoms and the signs (what is found on examination) are consistent with what is in the text-book, things are cool. It might be incurable, but at least your situation is grounded in anatomy, physiology and logic.
Behavioural is when cause and effect break-down:
Normal hip (or knee, or back) – sore hip; where do you go? Or, collapse – when the doctor approaches, hyperventilation when family depart.
All of this is sometimes, after a lot of effort and careful balancing described within the context of functional illness – that is, symptoms that have a cause that is not physical but psychological.
In this model,
anxiety – sore back – OK or, depression – collapse – OK.
It depends who is examining or assessing you. In some circumstances, you might be considered to be ‘putting it on’ – malingering; in another, one that is perhaps more informed, your experience is taken on face-value and the cause doesn’t really matter – psychological or physical, the pain is the same.
Mostly, when behavioural is used in relation to my patients, this is someone who is older who has an underlying diagnosis of dementia or delirium, but, who does not have a physical abnormality to account for their symptoms.
It is akin to functional, yet, in the world of acute hospitals this is not a widely accepted or understood term, instead therefore, behavioural.
Yet, when you consider it, when you take either a physical or existential microscope and look inside, there is usually something wrong, something amiss that explains the behaviour. In the case of someone who has dementia, this can be an inability to either comprehend the situation or express their emotions. Such that,
Distress – lie on ground, anxiety – collapse.
I guess my point is that specifically, if we were better-informed – perhaps more enlightened or knowledgeable, we would understand that when someone has a psychological symptom, whether there is anything physical underlying or not is hardly the point. To me, it is just that we can’t see with enough detail or clarity.
Stroke – altered behaviour, is considered OK, that is brain-damage, but, early dementia – behaviour is not; sometimes, and this is when it is most difficult, a person seems to be fine, they are getting-on with their lives, yet, in certain situations, for example, during hospitalisation, the behaviour becomes apparent.
We could take one approach and consider that the person is inducing the symptoms, trying to con us into being helpful or sympathetic, or, you could take the symptoms on face-value.
Within this there is a 21st Century tension. As we are able to look in incredible detail at the insides of our bodies using CT, MRI and functional imaging, people consider that we must have a window into all maladies. This leads to more and more sophisticated and complex investigations which potentially lead to false-positives and increased anxiety.
We can see which part of the brain lights-up or not when you are thinking of fish-fingers or you smell avocado, as to the individual neurones, the quantum waves that constitute thought, idea, emotion or inspiration we have a long way to travel.
Where does all of this take us?
It takes us to a point where we must consider all symptoms as they are. For some we will arrive at a straightforward explanation – fall – fracture – pain; perhaps the substance of a material world, at other times we will have just ‘pain’.
Acknowledging that pain is pain no matter the cause is central.
Just as with suffering, it is not something that can be measured and compared, it isn’t absolute, it is relative like everything else in the universe, and, the only way to approach this proportionately is with empathy and compassion, try to understand, and when you don’t understand accept your or the system’s limitations, don’t blame the messenger. Celebrate them as they are providing an insight into a world that is yet to be discovered.
26 October 2017
Why is delirium so much worse than dementia?
How can anything be worse than dementia? – even Stephen King says that dementia keeps him awake at night. Dementia is a leading cause of death, it is incurable, it robs an individual of their identity, human rights, self-determination; what could be worse?
As a doctor I have long been familiar with the patient who is admitted to hospital, often bed-bound, immobile, unable to feed or toilet themselves, perhaps because of the progression of dementia or a stroke, and, the expression – ‘I’d rather be dead than…’
Now, many of us know that this statement is meaningless as, the only person who can tell you about the experience of immobility, etc., is the person in bed and, yes, some prefer death, but, many are able to redefine life, find meaning in different situations to those that might have been unknown or unrecognised when the person was able-bodied.
I wrote about this last year in relation to people living with Locked-In Syndrome.
So, no, that is not where I am going.
My point relates more to the speed of onset.
Essentially, anyone reading this blog might have dementia. They might have the changes of Alzheimer’s Disease in their brains now. The slow accretion of plaques and neurofibrillary tangles, remorselessly tearing to shreds their self. Yet, this might not manifest for ten or twenty years, when the condition moves from Alzheimer’s Disease to Alzheimer’s Dementia – the point at which the changes affect a person’s ability to function in everyday life.
Delirium however can arise de novo today. I don’t know and, it is impossible to tell who tomorrow will wake delirious. Delirium being a change in perception, orientation, consciousness, mood and behaviour that develops over days and hours, in comparison to dementia which has an progression measured in years and months.
Anyone reading this blog might tonight, on the way home from work or college, develop a fever that leads to delirium with associated loss of capacity and ability to independently function.
Sure, many who become delirious, if treated well, provided the correct specialisttreatment will recover, won’t succumb to the underlying disease (e.g. ‘flu), or its consequences (falls, dehydration, brain injury) – yet, some will; a proportion of those who become delirious never recover, sometimes they have been affected by strokes and cerebrovascular disease – we find they have Vascular Dementia (which can only be diagnosed after three months).
Sure, I could wake in the night with a weakness down one side – a stroke; I might have cancer, like I said, I am not comparing like with like. My point is more to demonstrate the relevance of delirium in the spectrum of disease.
Most people have heard and have some sort of mental construct of stroke, cancer, diabetes or asthma, even dementia.
Delirium is different.
It exists in a nebulous realm, not belonging to any specialty – I am probably a deliriumologist, but, what does that mean? I could name a few people, mostly academics who study this field, but they are not as influential or significant a group as those practicing stroke medicine or say, cardiology.
It was World Delirium Day yesterday.
How many of you knew?
15 March 2018
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