Games Doctors Play

The last few months I have been seeing a few doctors and over this period, I have come to recognize certain patterns of interaction that are quite common.  These are a sort of play based on personality and training; sometimes these are innocuous but at times they may be irritating or even deleterious.  It's good to watch out for these and not get sucked into playing along.  My golden rule is never to rush into any drastic or invasive treatment that doctors recommend (even if they say seconds are precious).  It's always good to excuse oneself for at least a few minutes (if not for longer), talk to reliable friends or other doctors before being pushed into any action.  As for the things we have to deal with (other than our medical conditions), here's a short list:

1) Brick in the wall: (taken from Pink Floyd's song of the same name) - 'All in all, you're just another brick in the wall'.  Most likely you're being used to ramp up the hospital rather than the other way round.  But this feeling of not being treated as a person begins right from when you step into the hospital.  Don't take it personally!

2) P2C2E: (from Salman Rushdie's Haroun and the Sea of Stories) : Process Too Complicated To Explain.  Be wary when you hear such things- doctors will often fling them at you.  Nothing is too complicated to explain (at least not in biology), also be wary of oversimplification and inane analogies - there are few analogies that work for the human body and mind (as for the spirit- don't worry about it, doctors will not even mention it!).  Doctors who stick to facts (especially backed with proper medical references) are few to come by but worth paying attention to.

3) Carrot and Stick:  Very common - used sequentially or in random combinations, to push you into opting for something you may not be comfortable doing at that moment.  This is exacerbated by waves of urgency that the doctor suddenly begins emitting or sometimes a hypnotic glare.  A red herring such as a warm, sympathetic smile may sometimes be thrown in.  Watch the doctor for all these signs and watch yourself for inner reactions!

4) No Option: A very common game.  Doctors don't often use these exact words though last week I met one who did.  I promptly interrupted him and said, "There is always an option."  And there is!  The final decision (whether to begin a treatment and, often, even when you want to quit) is yours "against medical advice", though it may be.  Don't be afraid of these words or of taking your time to figure out whether you want to follow the doctor's advice.  Of course, every option has a consequence and you must be willing to face it.  But even if there is only one course of treatment possible in modern medicine, you may still want time to decide which doctor and hospital you want to go to and may want a second opinion.  So, even for sub-choices (once the main decision is taken), options may need to be explored.

5) Trust Me:  Trust cannot be induced, it emerges and flows freely when conditions for it are conducive.  I wouldn't trust a doctor unless I (or someone I rely upon) feel they are worthy of it.  I prefer to trust medical literature and analyses.  If you have reasonable cause for doubt, it's good to get a second opinion or talk the matter through with someone who is familiar with the subject and preferably with recent medical research or guidelines.  I also wouldn't trust internet chat sites though I use the internet a lot to collect technical medical literature.  There are certain official (and relatively unbiased) sites where things are explained in simple terms (medline plus is a good one for example).  It's good to read a little especially when drastic new therapies are being prescribed.  It's also useful to keep in mind that very rarely are those shiny new drugs and methods that doctors dangle before us, as attractive as described.  Medicine can do a lot of good but sometimes the side effects, the length (and expense) of treatment and its success rate are not explained as clearly as one desires.

6) The Three R's R'nt So Important: Trust your school teacher in this respect- they sure R!  Make sure you can read (and understand) the prescriptions.  Doctors also sometimes give the same dosage of medicine to one and all irrespective of their physical condition (body mass, age, other medical complaints they have) but this is not so common and one deals with it if terrible reactions occur.  Sometimes doctors mistakenly write milligram (mg) for microgram (mcg) - it's happened to me twice!  But chemists (or pharmacists) are quite used to this and allow for it while dispensing medicines.  But doctors may still have a few tricks up their sleeve that we may not know of.  A doctor told me last week, "You biologists think you know everything.  But one plus one is not two in medicine, like it is in biology!!!"

7) Next Patient!:  Don't be pushed by the 'Next patient' war cry that doctors often use - take your time to read and understand (and ask if you have any questions).  Also make sure you have enough time to put back all the papers and reports that are strewn over the doctor's table, into a folder, before you leave their office.  Good luck!

Finally, here are a few quotes on medicine, healing and curing, written by exceptional doctors, that I like:

"In a community like ours we have put all the emphasis on cure.  We want to be professionals: heal the sick....  But the temptation is that we use our expertise to keep a safe distance from that which really matters and forget that in the long run cure without care is more harmful than helpful.
   When we honestly ask ourselves which persons in our lives mean the most to us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand.  The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not-knowing, not-curing, not-healing and face with us the reality of our powerlessness, that is the friend who cares."     (Henri Nouwen, Out of Solitude)

"My advice is to live YOUR life.  Allow that wonderful inner intelligence to speak through you.  The blueprint for you to be your authentic self lies within.  In some mystical way the microscopic egg that grew to be you had the program for your physical, intellectual, emotional, and spiritual development.  Allow the development to occur to its fullest; grow and bloom.  Follow your bliss and be what you want to be.  Don't climb the ladder of success only to find it's leaning against the wrong wall.  Do not let your age limit your future growth as a human being...
   ...Remember I said love heals.  I do not claim love cures everything but it can heal and in the process of healing cures occur also."     (Bernie S. Siegel, Love, Medicine and Miracles)

The Importance of Unhurried Diagnosis

For the past week, I have been trying to get my peculiar jaw-ear-head pain diagnosed. At the end of this process, having dealt with eight doctors in as many days, I sit and write a few thoughts on the importance of diagnosis - not to relate in tremendous detail my medical troubles but just to emphasize how important it is not to rush into any kind of treatment without giving it due thought.

Initially I thought I needed a root canal and went hurriedly to my dentist who stood his ground and said my teeth were perfectly fine. I must have been the only patient there longing for a root canal that day, to put an end to the pain! However, he said it was likely to be a joint pain and gave some muscle relaxants and asked me to return in a week if things did not change. He is quiet, steady and very skilled and unwilling to rush into intervention. I went back home and tried the medicines but did not feel much change. Decided to visit a general physician as I wasn't able to sleep; I was told I had neuralgia and asked to stop the previous medication, was given some medicine for nerves which completely knocked me out - I began sleeping half the day and all the night and still I felt that things were not what they should be.

Went back to some doctors I had been seeing for other ailments to check if the medicines they prescribed could have side effects - but they all (youngest to oldest in hierarchical fashion) shook their heads.

My next trip was to the ENT specialist, a very gentle competent man, but who had a line up of patients for the next two weeks. I explained to his secretary that this was an emergency and he said they would see me after the regular patients; the doctor was expected at 6 p.m. But the doctor was delayed at surgery and when I reached his residence cum clinic, they were cancelling all appointments. I said I could return later at night in case the doctor got back and was seeing patients and when I called later, they asked me to come. I finally saw the doctor at 10.30 that night and I was the second last patient. He looked worn out and I felt tremendous sympathy for these doctors who see masses of people from morning to night in endless succession. Is there enough time or energy for them? Perhaps not, but there are certainly not enough good doctors though almost every second person in the country wants to pursue medicine.

The doctor said I had trigeminal neuralgia and prescribed some medicines for a week. He said the general physician's medicine was to be stopped as it was normally a long course, and prescribed something else, with the cautionary note that if I had trouble opening and closing my eyes, I should contact him. As it was late at night I did not want to begin a new medicine and decided to start in the morning. When I awoke and checked details on the net, I found unbearably horrible descriptions of trigeminal neuralgic conditions and realized that I had been given the standard line of treatment - anti epileptic drugs.

I did nothing for a couple of days except re-visit the bevy of old doctors for other conditions and check with them. As they were treating other parts of me, they were uninterested in this new twist. Fortunately, my family thought of an old, experienced neurologist and I trundled off to him, hoping I wouldn't be sent off for CAT scans or other scary sounding things! He was old and low key with a completely unhurried and relaxed air, appearing interested in everything I said without dismissing any of it. We went over descriptions of the pain again and again - the location, the feeling, the intensity and finally he said gently that he did not agree with the previous diagnosis. He asked me to stand and pressed a few points, flashed some lights and finally, settling back in his chair, said he thought my temporomandibular joint (TMJ, located somewhere between the ear and the teeth) was the cause. He said the dentist would confirm (or reject) this and meanwhile no medication was to be taken if I could tolerate the pain.

As I learnt more about this condition and about why he ruled out the other (there is often some confusion as there are different types of trigeminal nerve pains, but the treatment is drastic enough to warrant further testing before a conclusive diagnosis, I feel) various things began falling into place, including my previous medication and small twinges I have been feeling over the past several months.

Back to the dentist, who immediately called in my father and gave both of us a lecture on how this was not trigemninal neuralgia and indeed a TMJ condition, the seriousness of taking anti-epileptic medication, how ENT specialists are not trained to tackle this, how his own strategy was to relax the muscles (and the mind as well) which generally worked and how this condition was painful but not alarming and would subside in due course. He also agreed that it could be triggered by some of my previous medication given by the bevy of doctors in denial (and indeed when I scanned published medical literature I found many such reports). So of course I have stopped my earlier medicines and will visit the doctors to inform them just for their records, but they will probably not be interested (it's not jaw dropping enough!)

Anyway, the bottomline is just mental relief, not finger pointing. But the consequences of doctors being in too much of a hurry, too confident of areas that they may not know enough about, of dismissing data that does not fit in with a model and also of patients feeling compelled, through frustration or alarm, to do things in a hurry - can be grave. The internet brings a lot of information as does each doctor, and for unusual complaints (not emergencies obviously), one should begin a course of treatment only after thoughtful consideration. The body, mind and spirit send us signals of all kinds and it's often hard to unravel them, but when the right solution comes along, several things click into place and not just the stray observation or symptom. This is the beauty of medicine and physiology - the science of the subject and the art of diagnosis are equally important.

As I write this, I think of my old, trusty doctor, who I wanted to visit to get an input into what other medicines I could try without developing strange pains. I have known him for over ten years and each time we have a leisurely consultation session followed by many stories of other cases (keeping identities confidential but discussing the medicine and science) - these have helped me manage my own medication, even if I disagreed with other doctors on issues, and also helped me save my own life once. As I write this, he lies critically ill in hospital and I may never see him again. But all the sessions of unhurried, thoughtful and path breaking diagnoses and treatments that he prescribed will stay with me forever.

Sweet Sixty five!

A landmark British study - and its subjects reached the age of sixty five last month, and I hope it sees many more happy years ahead.  The 1946 British birth cohort study, initiated at a time when there was a great deal of interest in socio-economic planning and reform, is the only one of its kind in the world, in terms of number of years spent and amount of information gathered.

The post war years had an optimism and momentum that lent impetus to this ambitious study that was thought of by the Medical Research Council (MRC) and implemented by a physician, James Douglas, who had been studying effects of air-raid casualties during the war.  The study identified 16,695 babies that were born in the UK in one week of March 1946.  It then looked in more detail at 5000 of these babies and documented social, economic, physical and mental aspects of their lives over time.  The data collected was enormous, the cost and infrastructure considerable, but the study managed to proceed,uninterruptedly, under the leadership of three very different personalities over more than six decades.

Douglas's initial work demonstrated the vast economic gap that existed in society and its effect on health and lifestyle options.  He showed the disparity in medical facilities available for the care of the mother and infant and how these affected their health and survival.  Later on, he addressed the issue of the relative success of the educational system and how children from different socio-economic backgrounds fared in national school exams.  Several of his publications led to changes in parliamentary bills and policy regarding health care and education in Britain.

In 1979, when the project seemed to be stagnating, a social epidemiologist, Wadsworth, who was a part of Douglas's team, took over and steered it in a new direction.  He persuaded the MRC to fund the study to follow important medical parameters (heart, lung and general physical functions) and aspects of people's lifestyle for the next two decades.  He wanted to see if conditions of early life affected people's health and lifestyle when they were adults.  A large amount of data was obtained and several new correlations discovered.  The general impression seems to be that early life experiences do affect one's later choices and also affect one's susceptibility to specific kinds of health problems (though the researchers stress on the fact that one's fate is not ultimately determined by early experiences).

This study, being continued under the leadership of Diana Kuh, now looks to interpreting some of the medical correlations in molecular terms- the genetic variations of the people being studied and epigenetic changes that occur (small modifications of DNA that are induced by environment or stress of some kind and that change patterns of gene expression).

The study is conducted in a highly personalized fashion and several of the subjects, when interviewed, said they were happy to participate.  Obtaining consent in the mid-forties required much less effort (and red tape) than currently, which certainly helped a study of this magnitude.  However the nature and scope of investigations early on was more limited, mainly owing to social reservations about certain issues.  The research has evolved in an interesting way over time and I suspect it sheds light on many more aspects than it was originally intended to.  Other such cohort studies have since been initiated, but it will be many years before one sees whether they succeed in their stated aims.

This study has shown a link between cognition, hormones and aging, something people did not think about much.  The effects of lifestyle, environment (physical and emotional) and social trends on a person's life have been shown very clearly for thousands of people who were born within a few hours or days of each other.  This has made people begin to think about factors influencing life, health and aging.  The study is remarkable  not only in the quality and quantity of data collected but also because the data was not taken just when people were ill or facing difficult times, but periodically through their lives.  It would be wonderful if eventually one could look at alternate or traditional medical systems (several of which emphasize the maintenance of balance and prevention of illness) and incorporate aspects of these in the questionnaires and tests that such people are subjected to.

The MRC has made a small documentary recording to mark this 65th anniversary which can be viewed at http://www.nshd.mrc.ac.uk/nshd__65/about_the_nshd/the_douglas_children.aspx

Gentleness And Patience While Dealing With Pain

A recent visit to a hospital brought home once more the importance of gentleness and patience while dealing with pain.  I was sitting quietly in a corner of the hospital room when a head peered through the chinks of a curtain and I saw the frightened looking face of a young woman.  She asked me if I had been through various procedures and what the process would be etc. and I did my best to reassure and amuse her until the nurses appeared and the curtain was pulled back into place.  Soon I could hear her crying aloud a little from time to time as she went through the preparatory stages for her examinations, which are not really particularly painful. I guessed she had just worked herself up into a state, but even when I felt she could not be subjected to anything very painful, my nerves jangled at every sound.  I suppose it is a reflex action; every association with pain - be it images or sounds, even if not directly concerning us, bring about a kind of wincing from within.  Anyway, after a few minutes she began to complain that she was bored, so maybe she was a habitual complainer or perhaps she was looking for reassurance or attention at a deeper level.

At the next bed lay another woman who was being given some injections that she had never taken before.  She asked the nurse about side effects and the nurse reeled out the list - nausea, headaches, vomitting...  The lady, in a burst of positivity (or defiance?) said that she usually didn't have side reactions with most medication and the nurse replied in a matter of fact way that the woman would only know after taking the injections!  Undoubtedly logical but certainly not reassuring.

At this stage I switched off and actively attempted to relax.  At this time, my mind wandered occasionally to incidents of pain or discomfort that I had felt, how I had dealt with it and what it taught me.

Physical pain compels us to focus on our bodies, diminishing temporarily the importance of everything else that might be unfolding around us.  In this way, it also limits our thoughts, actions and affects emotions.  During moments of intense physical pain, I find it useful to remember that pain is not our natural state, that it will pass one way or another, that is is caused by muscles, blood vessels and nerves being out of gear.  In many conditions (except very extreme ones) this pain generally responds favourably to a gentle and reassuring touch, be it ours or someone else's.

Mental pain is often rooted in an apprehension or lack of trust of the future, sometimes a replaying of past trauma.  It begins (as most things do, I think) from a lack of wellness in the spirit that reveals itself in the mind and trickles down to the body.  In most natural situations (not extreme or exceptional ones), the solution, therefore lies within ourselves.  I find it almost futile to attempt to negate this pain when I am caught up in it.  It is generally helpful to try and switch the mind, if necessary by picking up a cheerful book or watching a relaxing film.  When the mind threatens to swing back to its old pattern I try and pull it back to the present as much as possible.  The present rarely contains pain; an emptiness perhaps, sometimes physical problems but those can be tackled differently.  I also find that practicing some aspects of yoga (especially those involving focussing on the breath), consciously relaxing and affirming positive statements at periodic intervals during the day and being out in the fresh air amidst nature reduces a build up of negativity.  Ignoring rather than fighting seems a more effective way to deal with this kind of condition.

Pain is a very real and troubling aspect of lives, not just of people but of other creatures as well.  I end with an excerpt from James Herriot's book 'All Things Bright and Beautiful' that reminds us that we must not lose hope in the natural healing power within us, which may be eclipsed during moments of great pain.

"And as I walked back up the field a message was tapping in my brain.  I had discovered something, discovered something by accident.  That ewe's life had been saved not by medicinal therapy but simply by stopping her pain and allowing nature to do its own job of healing.  It was a lesson I have never forgotten; that animals confronted with severe continuous pain and the terror and shock that goes with it will often retreat even into death, and if you can remove that pain amazing things can happen.  It is difficult to explain rationally but I know that it is so."

Perceiving Pain

In response to my blog on the anti-placebo effect (as I called it), a friend sent a link to a recent report on how our expectation (positive or negative) affects our perception.  http://www.bbc.co.uk/news/health-12480310

 An experiment using specific drugs to alter pain levels showed that people's perception of pain changed according to what they were given to believe. The interesting aspect here was that the doctors took into account 'negative expectation' or the fact that patients (especially those with chronic problems) may develop a negative conditioning which prevents them from responding to specific drugs.

I experienced some form of 'positive conditioning' recently when I visited my dentist.  I had to get a difficult filling done and he had said he would be giving me an injection for it.  So I went in, expecting no pain except for a needle prick.  But once he actually looked at the tooth, he seemed to change his mind and went straight ahead and drilled into it.  The procedure lasted for just a few minutes and, while I wasn't comfortable, I didn't feel traumatized or particularly disturbed.  Of course, this was not just because I had gone in feeling comfortable, but because of the faith I have in my dentist, developed painstakingly over decades.

I know that he is swift, sure, alert and extremely competent.  He avoids unnecessary intervention and excess medication.  He has a good idea of my pain threshold.  All these facts came together to provide a cover of reassurance while I was sitting in that chair with my jaws prised open.

And so I feel that one's response to the medicine depends not just on what one is told about it, but also on who is doing the talking. Apart from this, people are more likely to be open to taking medicines if they know that doctors are willing to listen to them should any side reactions occur, and more importantly, to modulate the treatment if it is causing sufficient discomfort.  This process can only work optimally if both the doctor and the patient are reasonable and balanced in their views.  Doctors are what they are, we can only do our best to select one who best suits our needs, but as patients, we can certainly alter our conditioning (especially negative conditioning) to a great extent to help ourselves- but that's another story!