Yet another patient has just described to me a situation with which I am all too familiar: They want to get certain things from their doctor, that they've been asking for for some time, but for which there seems to be an endless stream of excuses for why they can't have it. When I explain to the patient some steps they will need to take to ensure they get what they're after, which essentially means taking a more assertive approach and being willing to pursue a series of incrementally challenging steps if necessary, the patient immediately says, "But I don't want to get into a confrontation with them - I need them".
In other words, the patient is exactly where the doctor wants them: Feeling in a vulnerable, dependent position which essentially gives the doctor control of the patient, even if the patient largely dissents with most of the orthodox position on AIDS. Now having either witnessed for myself or having heard enough stories from patients, it's become apparent to me how doctors achieve this.
To start with, most people grow up with a meta-belief that 'so many doctors can't be wrong', despite all the evidence from medical history that of course most people simply don't know about unless they go looking. An even more deeply embedded belief is that, even if the doctor may not be entirely correct about something, they at least have the patient's interests at heart and have integrity about what they do. This could be shortened to, "They wouldn't lie to me". Sadly, some patients find out that indeed AIDS doctors absolutely will lie to and mislead patients to get them to do what they want, and yet even when the evidence is unequivocal, patients can have a hard time accepting that this is what actually happened.
For example, one patient had been so negligently handled when they immediately started suffering from severe side effects on commencement of taking AIDS drugs that they felt it was appropriate to sue for medical negligence. When changing their ordinary doctor they were told that the AIDS specialist being sued had sent a letter mentioning that they were being sued for symptoms the patient had experienced on a previous occasion when they weren't taking the drugs. In other words, the AIDS doctor was making a claiming that evidence existed that the symptoms that were blatantly obviously connected to the AIDS drugs had nothing to do with it. The patient was shocked at this claim as never had any such symptoms been experienced previously. On receipt of the medical records, lo-and-behold there was an entry purporting to be of the patient reporting the symptoms on a previous occasion. What was interesting as an observer was that I watched the patient staring at this fraudulent evidence, knowing it was not true, yet desperately trying to find some justifiable explanation for it that would enable him to let the AIDS doctor off the hook. "But he was my friend", the patient said to me by way of justifiation for his search for an 'honest mistake' rather than accepting the blatant fraud for what it was.
And that is the crux of the matter. While we tend to perceive doctors and nurses as being 'healthcare professionals' who are driven to medicine as a vocations because of their caring nature are neglecting that the business of healthcare is a global industry that rivals the arms industry for power, influence and sheer financial clout. And in any profession there are people who attracted by the power they have over others, or career professionals who are in it for the money they can earn. I believe that for most medics who seem to be ideologically driven, the underlying cause is the desire for power.
In either case, these doctors who are driven more by their own interests are much more willing to sacrifice truth when it is convenient and when they think they will get away with it. Often they will pretend to be your friend as it's a more effective means of manipulating you to do what they want. They may also make out that they are doing their best but they are trapped by the system that only allows them certain options This can be true by the way because medicine in Britain has become a totalitarian state in certain key areas, AIDS of course being one of them, but the question is, is it true in relation to the specifics that the patient wants from the doctor?
The language that doctors use can be very manipulative and hypnotic too, saying things like, "We've got to go through your results again in 3 months", which implies that it is something compulsory about it with no specific mention of who is making it compulsory, whereas what they really mean is, "I want you to come back for more blood tests so I get anothe chance to terrify you into taking the drugs".
So by making out to the patient that they are trying to work the system on the patient's behalf they create the feeling in the patient that they are lucky to have them as a doctor, battling on their behalf. The doctor has successfully created a feeling of dependency in the pateint. Therefore, even if the patient really wants something that is constantly not being delivered, such as certain tests, or results printed so they can take them away and look at them properly, the patient feels they'd better not push the doctor too much in case the doctor gets upset with them and stops cooperating, and they are left with no-one that understands them and is on their side.
Most patients perceive that doctors have a lot of power and are hard to challenge. Of course, doctors do, because of their influence over people such as judges. But a lot of the power is perception on the part of patients only. It's like banks - they only work because people have confidence in them. If people stop having confidence in them then the credibility and perception of safety of the bank disappears and there is a run on the bank. Doctors carefully cultivate this perception of power, which having seen it so many times as an observer, they bring in to play every time a patient steps into the consulting room. What most patients don't realise is that when doctors are manipulating and bullying their patients it's only because they believe they will get away with it, and that a patient who will not take such nonsense from their doctor and insists that the doctor is there to serve them and not the other way round, gets a far more cooperative response than someone who is in fear of upsetting the doctor.
But if there is a blatant clash where a doctor is being obstinate, then it is only by being willing to go to the next stage, and any further stage if necessary, that a doctor may be brought under control. That means rather than 'asking' for something, you insist upon it. If insisting doesn't work, say, the doctor won't give you results you have asked for, or the delays and excuses keep coming, then you need to start enacting formal procedures such as using the Data Protection Act to get some or all of your medical notes. Doctors have extremely limited opportunity to refuse this, and only in the most extreme of circumstances where there is a credible belief that the information would cause extreme distress to the patient. In practice this would have to be for someone who already had severe mental health problems and there was credible justification that they would simply not be able to cope with the information. It is almost never going to apply to anyone sufficiently compus mentis to apply for their medical notes themselves.
There is also PALS - Patient Advocacy and Liaison Service. Some people have had mixed responses but the key is to be clear, logical and persistent. A medical insider certainly told me that doctors fear PALS getting involved in a case so clearly there are cases where PALS does become very effective. It appears PALS is not effective as an avenue for challenging medical decisions where it essentially means challenging the doctors expertise, but in terms of patient rights, such as doctors following obligations, they can be helpful.
Then of course there are complaint procedures and legal avenues too. If you want to get what you want, you must always be prepared to follow through, but you won't always need to. In the same way that doctors manipulate patients in ways they don't technically have the right to enforce, by making the patient think they can, patients can get doctors to be a lot more cooperative by making the doctor be aware that they're prepared to go to PALS, complaints procedures and legal means if necessary, without necessarily having to do so.
The point here though is that the doctor-patient relationship needs to be re-balanced in many cases. Patients too often regard the doctor as a usually competent and honest professional acting in their interests, but who is also easily upset at the 'ungrateful patient' and may turn against them if they do or say the wrong thing. It's time for patients to recognise that doctors are there to serve them; that the relationship with these imperfect servants of the public needs to be one of cooperation between individuals of equal standing aiming to achieve the same goals of health and well-being of the patient, not one of master and servant, where the patient is in servitude of a capricious god. As doctor Robert S. Mendelsohn said in his excellent book, 'Confessions of a Medical Heretic', "M.D. does not mean, 'Medical Deity'".