July 3, 2012
Let me start by saying that most of the information here is based on personal opinion, which you may or may not disagree with. However it does stem from a great deal of unwanted, personal experience with doctors and specialist hospital departments. Having also talked to doctors about many of the issues discussed here, I have realized that there are always two sides to every story. Living with HIV is a great big learning curve!
I often find myself having conflicting feelings about doctors. I've got several specialists, who take care of various complaints both pre and post-HIV and a home doctor who deals with everyday ailments and tries to keep an eye on the big picture too. Sometimes I'm enormously grateful that I live in a country where that's possible and where I don't have to pay extra for any basic medical services. Other times, I seethe with frustration at mistakes, or wrong diagnoses, or misguided treatments.
I've had five different HIV regimes and their side effects to deal with because details of my original resistance to HIV drugs were lost in a move from one city to another. I've been "fired" by an irritated lung doctor, despite having lung emphysema, because I refused to give up smoking when he said I should (six months later I did it anyway). I had to go to Germany, at great expense, to get a series of private MRI scans to prove to my rheumatologist that the problems in my spine weren't between my ears after which I just moved on from him. I've also had to work my way through the ineffective pantheon of drugs used to treat neuropathy, when I had already been told that they probably wouldn't work (the neurologist was right there). So I've got some experience with doctors and not all of it was good. That said; my home doctor is a sweet and understanding younger woman, way older than her years; my HIV-specialist takes me seriously, admits his mistakes and admits when he just doesn't know, and my neurologist's door is always open if I need him. I can't complain, I really can't because all the years of experience of doctors and specialists have taught me one thing: they're doing their best; sometimes under very difficult circumstances.
I'm of a generation that was brought up to believe that what the doctor said was law and the absolute truth. The doctor was regarded as an upstanding member of society, ranking alongside the best teachers, the clergy and law enforcement officers. Things have changed since the '40s, '50s and '60s, however, and a culture of litigation has sprung up to buy lawyers the lifestyle they always wanted and expose the all-too-human failings of the above-mentioned pillars of society. This has led to mistrust on all sides. Doctors have become defensive and hesitant and patients have become questioning, distrustful and sometimes aggressive in their demands. Put this alongside the pressure that medical personnel are under due to financial and time restrictions and relationships have become much harder to build.
Medical authorities and hospital committees are demanding quicker turnover, less waste and adherence to budgets. Young doctors are being taught how to deal with "difficult" patients, irrespective of their complaints, and a part of their job has become social management and damage control, instead of solely dispensing medical advice and treatment. Patients also now have the Internet to back up their claims and fears and in the last 30 years, a doctor's work has become a minefield where mistakes are unavoidable and the stress has never been higher. It's absurd really that in this day and age where medicinal and technological advances have given doctors more ability to heal patients than ever before, that constructive human communication in the consulting rooms has never been more difficult.
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The phrase, "A little learning is a dangerous thing" (Alexander Pope, 1688-1744) has never been more appropriate for the modern doctor/patient relationship. Although doctors can offer more in the way of treatments than ever before, patients are also demanding more and arriving armed with pieces of knowledge and hearsay, gained from the Internet and social media. This information can be well-researched and be sourced from reputable sites but often, people visit one site and take the information presented there at face value and see it as absolute truth. The doctor then has to spend his time tactfully correcting the patient's inaccurate findings and that can be difficult in cases where the Internet is somehow seen as more trustworthy than the doctor.
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A case in point is in the field of HIV-related neuropathy. Both HIV and neuropathy are incurable and have many shapes and forms. That makes it perversely easier for many unscrupulous, independent, commercial enterprises, clinics and alternative therapists to go online to make claims for effective treatment and sometimes cures, which are sometimes not only untrue but at times dangerous. The problem is that there is always a certain amount of truth to be seen on the sites. The patient sees this; assumes that everything is fact and takes that information to the doctor or specialist who is treating them. The resulting conflicts of views immediately waste an enormous amount of time and set up unnecessary tensions within the session, when time is limited and the best treatment has to be found. No wonder many doctors see the Internet as an annoyance rather than the help it should be. Nobody wants to see the Internet policed but maybe someone should be keeping a closer eye on exaggerated claims in the medical sphere and taking steps to remove sites that make false claims (easier said than done) and promote sites that are trustworthy.
The person looking for medical information should therefore adopt the "let the buyer beware" attitude. You don't always trust claims made by commercial advertisers of everyday products, so why would you take medical information on a website to be gospel truth? It's always advisable to go to respected sites and then check and double check that the same information appears on other reputable sources. The sad truth is that there will always be people who are prepared to put your health at risk in order to make money.
That said doctors themselves could make much more effort to acknowledge how valuable the Internet and social sites can be. The idea of creating a dialogue with a patient rather than a monologue where the patient answers questions and then sits and listens, may actually be helped by patients' access to the Internet. They can arrive at a consultation with enough basic knowledge to save time and get to the crux of the matter. Making your doctor aware that you first want to know what's wrong with you and then what the doctor is going to do about it will be greatly helped by your own willingness to do some ground work. The difficulty often arises, if either side succumbs to the temptation of arrogance. You really don't know all the answers and the doctor needs to feel that he or she's still in control of the situation, so neither partner can afford to be overbearing.
If you're ill, you may well be emotional at that moment. The doctor should be aware of that as a matter of course but you can help matters by trying to stay calm and concentrating on how the doctor can best help you. Getting angry, however understandable, is a sure way to ruin any constructive relationship with your doctor. He or she will immediately become defensive and given the alarming rise in dangerously aggressive patients, this may be justified. A consultation and the ensuing care should form the basis of an equal partnership where respect for each other is paramount.
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How we can get to this point is a matter of cultural adjustment and the medical profession must realize that people are not only quite capable of checking up on any information they are given but will also lose trust if they are palmed off with platitudes. It's all about being taken seriously but that applies to both sides. It will help greatly if you can convince your doctor that you're an intelligent person who deserves to be taken seriously but demanding anything based on what you've learned elsewhere, is not a good start. In the case of HIV and several associated illnesses like neuropathy, doctors will not have all the answers and should be able to admit that in a good relationship with their patient. Only then can both parties move forward to achieve the best possible solutions.
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Unfortunately, recent developments in hospitals and doctors' surgeries have led to the medical profession being ultra careful with both what they say and how "close" they feel they can get to their patients. Aggressiveness and violence, either due to emotion, or drugs, or alcohol, or even cultural misunderstandings, have created an atmosphere which isn't always conducive to real dialogue. The numbers of medical staff who have been physically and verbally assaulted is staggering and a relatively modern social trend.
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As already mentioned, patients have also learned the power of litigation and doctors fear it like nothing else. This has led to patients subconsciously having the idea that the "balance of power" has shifted in their favor and the feeling that they are entitled to demand immediate, or extra attention. Raw emotions, or alcohol, drugs, or even extreme pain, can spark confrontations which unfortunately often get out of hand. Little wonder then that the medical profession is more nervous than ever. Many doctors look back longingly to the time when their word was law and argument from the patient was rare. It's happening in the education profession too, often with the same results; as parents demand more and more from long-suffering teachers and become aggressive if they don't get it.
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That all said many patients, especially older people, are reticent and just don't want to appear "pushy" in the doctor's consulting room. They weren't brought up that way and it's often difficult for doctors to coax the correct information out of them, especially if it's perceived as being of an embarrassing nature. Many older people with HIV may be able to relate to this. However, today's society is unfortunately one where he who shouts the loudest often gets what he wants. When all's said and done, you're not there to make your doctor feel good (though if it helps, it can be a good tactic!) but to get the best treatment possible.