When will ‘ask the patient’ be something that doctors think of when they want information regarding the patient? 19 December 2017

This morning the doctors decided they would like an MRI of my spine.  I have an implanted nerve stimulator, which usually is compatible with an MRI machine.  Mine is.  On being told of this implant, the radiology department asked for additional information.  

They, the doctors, asked me for information about the implant surgery, the where, when, who etc.  I realised what they wanted and attempted to give them the information they needed: information about the device, and the person they needed to speak to.  No, no, they said, we know what we are doing, we need to get certain information to allow the MRI to go ahead ...

In the late afternoon the team leader of the doctors came back to me and said that the MRI would have to be deferred until the next day.  It had taken all day to get the information that they needed.  I tried to tell him that all he needed was to ask me for the name of my contact at the device’s supplier, who would be the person they would be at that moment be talking to...

After several minutes of the doctor trying to tell me why he wanted the information, that they do not want me in an MRI room if they did not know if the implant was ‘safe’, that is has no parts that can be magnetised.  I then politely told him that all he needed was the name of the contact etc, whom I had contacted that morning to confirm that the code I would be using was correct for the MRI machine.  He had to agree, finally, that I was right, his team should have asked me in the first place. 

When will ‘ask the patient’ be something that doctors think of when they want information regarding the patient?

Currently the last person a doctor will think of asking for information regarding a patient’s medical condition, or including in the decision making process, is the patient himself (I use ‘he’ to denote he, she, or they)

A nurse friend of mine told me seriously that it went like this: there is a hierarchy of people to whom a doctor turns when he wants to know something, starting with fellow doctors, then doctors external to his team or area of expertise, then technicians, then nurses, then the relatives, then the spouse, and then when all other avenues are exhausted ... the patient.

But why?  Surely the one who knows what is going on the the body concerned is the patient himself?  In these enlightened days one assumes the patient is a part of the process to decide on the path to be taken to get the outcome desired.  It is still, unfortunately, not the case.  

In the olden days, when doctors were above God, and a doctor’s word was considered like law, the doctor most often made decisions that did not involve the patient at all.  The patient was not told what disease he suffered from, nor the name or effect of medication he was asked to take, and a lot of the time was not told if he were dying.  Symptoms were offered up by the patient on being questioned by the doctor, the doctor deliberated and decided, and that was that.  No discussion entered into.  I recall my mother telling me of doctors making arbitrary decisions about her; she was not told, and had to find out by eavesdropping or some other unofficial method.  These decisions were quite often casually cruel with no regard for her feelings or her situation.  

In my lifetime, things have changed, and for the better.  When I started needing the medical profession, I was treated badly.  Assumptions were made about me that had little to do with my medical situation.  Doctors’ prejudices were reflected in their diagnoses.  If I complained about pain but was stoic about it, and since I am female, then my problem was hysteria.  I could almost see the vision of the errant womb wandering around my body in a bubble above the doctor’s head.  I often wondered if being female was considered a diagnosis in itself, given that most of the doctors I saw were male, and most of them seemed intent on proving that my illness - whatever it was - did not exist and that my symptoms were due to hypochondria.  

I cannot count the number of times in the 1970s and 1980s that I was told my symptoms to quite serious conditions could be cured by a good lie down, or a nice holiday, seeing a psychologist, or couples counselling.  This one was a doozy - a response to symptoms of early menopause - where the doctor seemed to think my relationship to my fairly new husband was the reason for my symptoms.  Five minutes of my gynaecologist’s time and a shiny oestrogen pill soon fixed this supposed glitch on the marital horizon.

As the years have passed by, I have noticed there appears has been a more concerted effort on the part of the medical profession in general to include all stakeholders (if one could call a patient a ‘stakeholder’, when the patient surely is the centre of the process; however my own experience shows that the medical profession sees themselves as equal to the patient in the broken-body fixing process).  Still, in that process of consultation with others, doctors still do not consider the patient to have any knowledge about his condition. The doctor is now not alone in collecting information about the problem; ie the patient’s condition.  He is assisted by a phalanx of assisting specialists; pathologists, radiologists, etc.  Each of these has input and the doctor no longer works alone like he used to in the olden days.  

But still, the patient is not considered an expert in any way.  The patient in this sense is (usually) not a medical professional, and it could be presumed has no or little knowledge of the workings of the human body - at least, that is what is presumed by the medical profession.  The patient does however have an intimate understanding of the workings of his body; he is undoubtably the one and only expert on the subject.  Despite this he is not consulted on this subject unless the other stakeholders are desperate.  

This attitude is reflected in the current practice in hospitals whereby the doctors talk firstly to the nurses regarding the patient’s condition.  I have been the patient when doctors have made bad decisions after talking to the nurse who did not pass on an accurate report (from lack of knowledge, misunderstanding, confusion or even laziness). In these instances a word to me would have prevented a mistake.  Whilst the nurse’s job includes observing and monitoring the patient’s condition, and relaying anything of concern to the doctor, the doctor should, where appropriate, speak to the patient to confirm before acting. 

The practice of talking to others rather than the patient appears even today.  I have also been present as a patient when a doctor turned to my spouse and asked him a question about my medical condition rather than asking me.  This was in 2016!

Perhaps these are isolated incidences; but I fear not.  From anecdotal evidence, that being other patient’s stories of what doctors have done and said, doctors are improving in their practice of including the patient in their deliberations but have not yet succeeded in achieving what is needed: a patient’s involvement in making decisions regarding his health.  Too often the doctor who does include the patient in the decision making process is the exception rather than the rule, the one talked about, the one about whom everyone says is a wonderful doctor.  

So why don’t doctors include the patient when asking for information or in the decision making process?  I think the doctor is still caught up with the notion that a doctor is someone more important and more knowledgeable than those around him; perhaps all those years of study and hard work can be justified by the thought that eventually as Dr John Doe, a doctor will be considered as good as or better than God, when really he is no better or worse than the rest of us?