It’s not cardiac it’s pleuritic pain,
you utter in a most kindly tone.
Heart leaps ten feet high!
Phew! Sigh of relief
as I press face into waiting hands.
But you’re still saying things,
Urgent referral, I hear you say,
I say I don’t understand,
you explain it's your lung (draw breath);
there is a shadow in the left upper zone,
and all the red flags I’ve suppressed
shoot up flap wildly on the pole,
and if my throat wasn’t so goddammed sore,
my voice so goddamn hoarse
I would scream my loudest scream
to vent this chaos in my brain.
Can’t stop thoughts racing
but can’t think at all;
why did they send me home?
Can’t think doc;
you flit, flit, flit in shadow land, peripheral,
voice drones in monotone,
monotonous distant buzz, buzz, buzz.
Mind scrambled egg,
like I’m watching me in some old silent movie
(flit, flit, flit)
watching me going through the motions,
mechanical, perfunctory
(can’t even hear what I am saying).
Christ why me, why me, why me?
Why me?
The above was written following the experience of a colleague. General malaise of two to three weeks duration had been followed by intermittent chest pain and a particular episode – which concerned her by its intensity - resulted in her presenting herself at A&E.
Chest Xray, bloods, etc. were done and she was told that there didn't appear to be a problem with her heart, she would be referred for further investigation and was sent home with a course of antibiotics (for a ‘chest infection’). She was relieved – no heart attack then. However the problem persisted and she soon sought the advice of her GP and the outcome of that appointment was as written.
Her account of her experience - not receiving enough information from the hospital doc -and the terror that ensued reminded me of similar cases of friends, relatives etc. where it appeared a communication breakdown had occurred between doctor and patient resulting in unnecessary pain and anguish (and sometimes false hope).
The doctor-patient partnership is an unequal relationship and in a sense always will be so – for the patient is reliant on his doctor to provide him with an answer (to his problem) from his extensive knowledge base. The patient can only offer his symptoms (and sometimes fears) and is dependent on his doctor to diagnose and treat (if required).
Traditionally the patient adopted a passive role, confident in his doctor’s expertise to diagnose and treat and the patient (generally) accepted the mode of treatment offered without argument or discussion, for he viewed his doctor as a specialist, a professional who carried with him a certain authority and commanded respect and thus adhered to his orders. (I realise this paragraph is a generalisation in that all patients were not good obedient patients.)
Times have changed and the patient is - via the internet and other sources - more health literate and expects his views to be considered in shared-decision making. However there exists the problem that the patient cannot recall all information given to him at the consult and indeed, at times, he is not given enough information to make sense of his situation. It is not surprising that this problem exists for the patient is not grounded in the art and science of medicine and recall is (to some extent) dependent on understanding.
The paternalistic approach by the medical profession to its patients has changed too, no longer is the patient expected to blindly follow doctors orders and the ideal is that patients should receive all available information regarding their illness, treatments available, risks involved etc. and the doctor-patient partnership be a true partnership of shared decision making.
For the purpose of this post I researched in an attempt to gain knowledge of what we as patients actually remember of information given to us at our GP/hospital appointments but found the results rather contradictory/confusing such as, in interactions between doc and patient only 50-60% of info is recalled (by the patient) or 80% of info is forgotten directly after leaving appointment or 50% is remembered incorrectly and so on.
In view of this I sought the help of a good doctor who informed that when he did his GP training it was a good rule of thumb that most – if not all – patients only retain one third of what is said to them during consultation and as said previously – this is not surprising for patients are not doctors. So it is important that doctors make sure the patient retains the important third and should ascertain this is so.
How can this be done and what influences are at play during consultations? A little insight from a Pubmed ‘meta-study’ article (1) Abstract:
“RESULTS: In a model of external influences on information exchange within healthcare consultations, practitioner influences were: receptiveness to informed patients and patient choice, lack of knowledge of cultural difference, patient centredness vs. stereotyping. Patient influences were: motivation to seek and engage with information; the appraisal of information before a consultation, expression of cultural identity, and ways of managing the risk of poor information. Shared influences were: differing illness notions, role expectations and language. Empowerment, disempowerment and non-empowerment were outcomes of information exchange and health literacy was a mediator of external influences and empowerment.”
I would also recommend whether you are patient or doctor you read this excellent article (2) ‘Patients’ memory for medical information.’ (Roy PC Kessels. PhD). Please DO click the link!
I would highlight this (from the above) ‘…first, factors related to the clinician, such as use of difficult medical terminology;’ for indeed this often presents a barrier to doctor-patient communication as much as (for some) the physician resorting to abstract conceptual thought in an effort to aid the patient in understanding his situation.
Research tells me that doctors who are uncomfortable with, have difficulties in ‘breaking bad news’ may sometimes resort to the use of medical terminology in an effort to draw the consult to a speedier conclusion.
Patients (in receipt of bad news) will probably cease to hear much or anything after the diagnosis is revealed and will probably enter the scary worlds of depersonalisation, derealisation and it is important to (us) patients docs that we are seen a few days later once the shock has worn off a bit. (Sorry docs – this sometimes does not happen as all docs are not necessarily as skilled as you in the art of communication and understanding patients needs.)
(When depersonalisation, derealisation rear their ugly heads – boy do we need input for there is nothing more lonely, more scary than being on the outside looking in, as it appears (is?) – depersonalised or not - that we are left out of the information-loop and very much to our own devices and fears.)
Whether patients are in receipt of bad news, made aware of chronic life-changing illness or suffering acute but curable disease, etc. most of us – but not all for some of us are happier in our ignorance - need information to cope with to understand our predicament – and at times this need is not met as we fail to communicate (with each other) effectively.
Although taken out of context in which they were written these quotes from Balint (3) spring to mind: ‘There is a dangerous confusion of tongues, each party talking in a language not understood and apparently not understandable to the other.’
‘One is the patients increasing anxiety and despair, resulting in more and more fervently clamouring demands for help.’
So what are we to do? The apparent bane of a doctor’s life is the patients list (of symptoms) as if somehow the patients attempt to convey all information is, well, irritating, ridiculous. (I have resorted to a list once as I wondered whether the symptom I had forgotten to mention – how often we patients do this – was the final piece in the jigsaw that would provide an answer - an answer that I desperately needed.)
Research of articles (authored by those in the medical profession) suggests that doctors should check patient understanding and if need clarify; provide patients with a personalised list highlighting salient points relating to their illness, supplementing this with a ‘condition’ leaflet/booklet.
I don’t know – would this effort make too big a dent (time wise) in the allotted ten minute consultation? If so would it be time well spent in that patients understand their condition more and are more likely to follow doctors’ recommendations (changes to lifestyle etc.) and adhere to drug regimens and thus need fewer appointments as they have an element of control over their lives and well-being? What say you?
All the above is a patient’s perspective and that is all I can offer but I would certainly welcome comments from the other end of the stethoscope.
And a question (or two), does a doctor who becomes a patient continue to see things differently (from a patient who is not) as he does not cease to be a doctor? Do you think – as a doc (patient) – having all information to hand is as frightening as a non-doc patient having too little?
As a patient or doctor – what are your thoughts on this post?
Anna :o]
References
1) What are the external influences on information exchange and shared decision-making in healthcare consultations: a meta-synthesis of the literature. Edwards M, Davies M, Edwards A. (PubMed)
2) Patients’ memory for medical information. Roy PC Kessels (JRSM)
3) The Doctor, His Patient and the Illness. (Page 26) Michael Balint. (Churchill Livingstone)
2) Patients’ memory for medical information. Roy PC Kessels (JRSM)
3) The Doctor, His Patient and the Illness. (Page 26) Michael Balint. (Churchill Livingstone)
Poem entered at dVerse~Poets Pub Open Link Night hosted by the lovely Claudia
Image: courtesy of Wikimedia Commons. Author, Chikumaya
