This a question that has arisen directly out of the mess of Covid.
Picture a 98-year-old Yorkshire woman.
She is frail, grey haired as you might expect.
She has a warm smile and sharp blue eyes.
In the three years I have known her, I have never seen here anywhere except sitting in the chair beside her bed in the local care home I visit.
She always has a puzzled then warm smile when I walk in the room.
Beyond the scene is the context.
Eight or nine years ago the doctor who was at that time responsible for her care saw her walking into the dining room (she has lived in the home for a long time).
He considered her gait unusual, made some assessments and diagnosed Parkinson’s disease.
This is a condition, most common in older people where there is a deterioration in the level of dopamine in the brain.
If you watch the Robin Williams / Oliver Sacks movie/book Awakenings you will see what dopamine can and cannot do to the brain.
I will not go into details as I am no expert, and this isn’t a story of neurodegeneration.
There is one fundamental however and that relates to this mysterious disease (which it shares with several other neurological or brain affecting conditions), that is, it is tricky to diagnose.
If you have cancer, at least, for the most (although not always (story for another day)) a biopsy concludes the diagnosis – a sliver of liver, a nodule of gland or other tissue combined with advanced biomolecular techniques and it is possible to say with a high degree of confidence, ‘You have melanoma.’
This is not the situation for Parkinson’s disease (dementia which is much more common is equally hard) – consequently patients receive what is called a ‘clinical diagnosis’ – this is when a clever clinician, for the most a doctor or other specialist, performs a number of indirect tests and assessments and arrives at a diagnosis.
A more common example is pneumonia.
You are short of breath, you have a nasty cough, feel awful and your temperature is high. The doctor listens to your chest, hears what is called ‘bronchial breathing’, says you have pneumonia, gives you antibiotics, advises that you will feel terrible for a couple of weeks and to get in touch if you get any worse and exists stage left.
This is the way doctors have functioned for hundreds if not thousands of years.
Since Mr Roentgen, we have been able to check the diagnosis with x-rays, and pneumonia is only present when there are changes on the black and white image – we call this consolidation.
There are other ways to diagnose pneumonia – this is the most common and more accurate than a piece of plastic connected to a person’s ears.
In many instances of the clinical diagnosis, if you arrange an x-ray, the film will be clear. This means, the diagnosis is probably ‘chest infection’ – a moot point perhaps, and you still feel bad, but subtly different in management and prognosis (chest infections are often caused by viruses, the prognosis is mostly much better than pneumonia.)
Here what I am trying to demonstrate is the inaccuracy that accompanies the everyday actions of doctors (when I say doctors, I am talking 21st century, in other words, I mean clinicians – this is shorthand for nurses, therapists, pharmacists and so on). Y’ken?
Many people assume when a doctor says, ‘You have X’ they indeed have ‘X’ – in some cases this is easy to establish – for example if you have an x-ray machine handy, although there are situations where even what looks like something is not – the x-ray might look like pneumonia, yet the diagnosis might be cancer or some other respiratory condition.
It can be complicated.
Things are not always what they seem.
Let’s get back to my old lady.
Several years ago my former colleague saw her shuffling, diagnosed Parkinson’s disease and started her on treatment.
…. time passes….
I came on the scene and from the first, when I met her and encountered her warm smile, her engaging expression and general affect, I said to myself, ‘This woman doesn’t have Parkinson’s disease.’
(One feature of the condition called hypomimia, or if you like, expressionlessness is very common in Parkinson’s, my patient had what you might call normo-mimia.)
This was around two years ago.
I discussed the situation with her carer and her daughter (my patient who also has dementia was unable to grasp the ins and outs of my plans), and we agreed, ‘She probably doesn’t have Parkinson’s disease,’ and, I started weaning her medicine.
She was taking the tablets five times a day.
I stopped the evening dose.
I stopped the mid-morning dose.
Then came Covid.
And yes, things fell apart.
I have written before, about this care home in that we did fantastically well to avoid Covid except for one outbreak on one unit which was of course devastating.
My patient dodged the Covid bullet.
Yet, I was pulled away to do other things, I became distracted, the gradual withdrawal of a drug in this woman had not been my sole focus and, as happens more commonly, the carers who tend to keep me right, ‘Dr Rod, what about..?’ were distracted too.
And that brings me to my starting point.
To stop or not?
This was two months ago.
I was reviewing my patient and noticed she was still on the, what I call, ‘dodgy drug’ (this being a medicine that in certain circumstances is great, but if inappropriately prescribed or misused can cause harm) (Google the side-effects of Madopar, a common medicine used in Parkinson’s disease if you want to see what I mean).
And then the question.
I mean, she is 98 after all.
She is doing quite well even with her three times a day dodgy drug.
Let her be? De-prescribe (the 21st century term for stopping unnecessary drugs, particularly in older people) (we had by then moved beyond de-diagnosis which is a term I believe I invented).
There tends to be a medical aphorism, ‘If it isn’t broken, don’t try to fix it,’ yet, my patient, her medicines, you might have guessed, I am the type of guy to scratch an itch.
We decided to continue our weaning.
She seems brighter.
She has been eating more, sleeping better.
Perhaps coincidence, perhaps not having a toxic drug flooding her brain.
If you are lucky enough to have read the Jerzy Kosinski book, ‘Being There’ (also movie with same name starring Peter Sellers), you see the reality that the protagonist, named Chauncey Gardiner brought to the narrative.
Great gardeners you see are tenderers*, they are meddlers, they notice the solitary diseased or sickening leaf and act, they are sensitive, and so too with the clinicians, they tread cautiously, they check and check again, they corroborate before deciding on action.
Think once, think twice.
*Makes me realise, when tending to a patient, my action, essentially offering tenderness, is the key.