Tuesday, 27 November 2012

It's Not Cardiac

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]

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)

Poem entered at dVerse~Poets Pub Open Link Night hosted by the lovely Claudia

Image: courtesy of Wikimedia Commons.  Author, Chikumaya


Brian Miller said...

i think we have to be careful with self diagnosis in this information age and not ignore the signs our bodies are giving us....its scary and can hit at any time....rather firghtening thoughts for me...my brother had a teacher at his school drop dead unexpected the other day...

Unknown said...

It is funny how my perspective of doctors has changed over the years. I believe it's always important to take charge of your health and to have an advocate, if needed. Mistakes are made every day because doctors are human, too. You can't be too careful. If something feels off, push until you get the answer you need. Scary piece.

Luke Prater said...

I have a whole lot to say on this, having had much health trouble in the last few years, but I'm not in the right mind to write it presently. It would be a long comment! I applaud you for the information/commentary you provide beneath the poem, this is sadly too rare. Thank you.

Luke Prater said...

I have a whole lot to say on this, having had much health trouble in the last few years, but I'm not in the right mind to write it presently. It would be a long comment! I applaud you for the information/commentary you provide beneath the poem, this is sadly too rare. Thank you.

Claudia said...

wow... enjoyed both..poem and footnote...think it's a topic where everyone has made their own experience and could tell one or the other story...

Daydreamertoo said...

My body told me for a long time that there was something 'not right' I saw umpteen specialists.. you name it I had it looked at and in the end for 5 long years, each one told me there was 'nothing wrong' and one or two suggested it could be psychosomatic. Thankfully I had a GP who really knew me, she believed in me and she still kept sending me for tests, blood work etc etc. It turned out I was diagnosed with S.L.E or Lupus. which is an auto-immune disease that mimics others like M.S. and such. I didn't like the diagnosis but, was so grateful for my doctor knowing me and believing in me and not quitting on trying to get to the bottom of the problems I was having, for finally being proven that it wasn't 'all in my mind'
I agree, patients need to be well informed but care taken over how they are given serious information.
Well Said Anna.

ayala said...

So hard to find good doctors these days...good poem and thank you for the footnote.

Steve King said...

I think you've hit a nerve here with many readers...we can't abdicate responsibility for our own well being. Your message needs to be widely read. Nice job, and nice commentary at the end.


Mary said...

A hard subject, one we should definitely take to heart. We DO have to take charge of our own health.....even if sometimes we'd rather avoid.

mrs mediocrity said...

It can really all change in an instant. I can't get started on the state of the medical system, I lost a year of my life to doctor's who couldn't figure out a problem.
This really brings your point home.

steveroni said...

So fortunate I am to have long-term relationship with internist E.g., he knows I am alcoholic, can be quickly addicted to any/everything. But just in case--grin1 I remind him every visit.

The doctors he has referred me have been extra patient and kind, explaining every single facet, option, and expectancy during my prostate cancer siege.

Cancer "recovery" as stress-free, they had prepped me for death as well as for long life...so far, 5 years!

With your own engaging article I agree entirely. Seems like being totally involved (on my part), questioning, conversing, suggesting, has made all the difference for me--and my doctor. We've even become friends!

Thank you for your research, and writing results here.

Arron Shilling said...

you do deliver on your subject and the background really adds weight and understanding . . . i trust no one in authority, especially white coat wearers!

Anonymous said...

It is really chilling and terrifying to be a patient. You describe it so well. k.

Kathy Reed said...

..important to realize the give and take in the relationship and that patient and doctor need to be on the same page; but encountering a negative experience can truly be disheartening and cause one to doubt and lose confidence quickly//

ninotaziz said...

Well Anna!

You certainly have put a lot of research and thought into this. So much so I am beginning to rethink about my relationship with our family doctor.

As I now move in slowly to middle age, it is time to take stock of my overall health.

And Mum's too ...

Frances Garrood said...

You've highlighted big problems in this thoughtful post. Even now, no longer nursing, I advise people ALWAYS to bring list of questions when they see a doc. But of course this doesn't work if patient isn't expecting bad news.

Apropos docs as patients - they are awful! My doc son never misses a day, even if he has flu. Meanwhile my daughter nearly killed her doc husband, whe he was languishing in bed asking "do you think I should take some fluids?" and "should I take some paracetamol?" Of course he should! He's a consultant. Doesn't he know what to do?

Brother Ollie said...

my grandmother had this, and I too was relieved, as I was the one that brought her to the hospital - relief, but still painful.


drerhumu said...

A very thoughtful post Anna, I hope it wasn't lung cancer. Someone talked about Doctors sending patients reminders after they've left the consulting room; don't know if that will help.
What I have noticed when doctors become patients, is a new understanding of the patient perspective, and a lot of times, the doctor remains in denial, not wanting to know what is really wrong with him because his worse fears can be confirmed.

Tariq.MJ said...
This comment has been removed by the author.
Cressida de Nova said...

Thank you for all your research Anna.Patients do not trust doctors anymore.Doctors are too interested in money,squeezing in as many patients as they can.It's a lucrative business and you are rarely made accountable for careless mistakes.They are not well educated in the sense they are just science and maths oriented. The best reason for staying healthy is so you never have to consult one.

Anonymous said...

You capture the fear well here. Went through something similar with my Dad. I'm kinda of glad for the months of miscommunication where we were all much more optimistic than we should have been. The reality was pancreatic cancer... everything else was better than that.

Jeff said...

Even trained professionals (in any field) make mistakes, or have gaps in their knowledge. It's scary to think that we trust our lives to other fallible human beings. Well done--the time and effort you put into this poem paid off!

Cro Magnon said...

The most important part of medicine is DIAGNOSIS. And DIAGNOSIS is also the most complicated.

With this in mind, my UK Lady Doctor always used to ask me what was wrong with me, then even ask what I thought she should prescribe.

Here in France, things are much better, and doctors are treated just like any other worker; NOT deified.

Tariq.MJ said...

Hi Anna,
your article is very informative and tells all scenarios happening between docs and patients.
yes there is indeed a communication barrier either due to language problem or memory problem or lack of enough time on the part of med staff and docs.
Sometimes their results are not trustworthy as they are only filling the blanks as per daily work under pressure.
The med staff makes mistakes too which may cost a patient his/her life.
Bottom line is when we are born we have genes in us as our possession during our life time and these genes are mutilated because of genetically modified food, smoking and other irregularities and we end up with doctors who in most cases are of commercial mind.
Life longevity without quality is no good either.
We are what we do and what we eat and consume so there is a need of better understanding to keep doctors away.

My mother is just back from the hospital for lung related ailment.

Let's protect our immune system which is God-gifted.

hyperCRYPTICal said...

Thank you for your welcome comments folk and apologies for the delay in responding.

Docs and patients have a lot to learn from each other - we should talk more!

Special thanks to Dr Erhumu for his kind contribution.

Anna :o]