When we first learn that we’re HIV positive, we are forced to assume a subservient role from the beginning. Our doctors are the experts and we’re the shocked recipients of knowledge way beyond our ken. Add that to the fact that we’re brought up to respect doctors as being super-intelligent beings, with our lives in their hands and the roles are more or less set in stone. We learn that we should do what they say at all times and without question and faced with the fear and uncertainty of HIV, we gladly do exactly that.
However, over the years, we learn much more both about the virus and what it can do and about our own bodies and how they respond to HIV’s quirky attacks. We learn how the medication affects us individually and how weaknesses in our systems or lifestyles make us vulnerable to secondary infections and long-term degradation. We become experts in our own health and slowly but surely, most of us learn to read the signs, predict outcomes and research every tiny thing that appears to be behaving oddly.
It’s at that point that the roles subtly change and the relationship between doctor and patient becomes more equal. The best doctors recognise that and react accordingly and many of us strike up unlikely partnerships and even friendships with our health professionals. Both parties recognise that we are thirty years into a ‘new’ disease and that we need each other’s input to achieve the best possible results for both doctor and patient.
The problem is, that not all doctors are flexible and not all appreciate, or are prepared to acknowledge the increase in the patient’s knowledge and expertise. Some of the people we have always put on pedestal, become all too human and display irritation, arrogance and disrespect if their patient dares to question their treatment. At this point, the relationship can quickly break down, leaving the patient unsure that they are getting the best care possible.
Before going any further, it has to be said that patients can of course also be royal pains in the backside and doctors are facing more unprovoked aggression in the consulting rooms (both verbal and physical) than ever before. Patients too have to learn that no matter how much research they do, it’s more than likely that the doctor will always have more knowledge at his or her fingertips.
A health partnership has to be built on mutual respect, or it will never be a partnership and acknowledging that the doctor is the expert is the patient’s responsibility. However, this article looks at the reasons why it might be best to look elsewhere if you feel that your medical professional is not giving you the respect you deserve.
The trouble is, just as with any relationships that start to go bad, staying in them is often the easier option but is it the right one? The following signs may suggest to you that it’s time to take the plunge and divorce your doctor.
Most people have excellent communication with the receptionists at their doctor’s practice but the first point of call in the doctor’s surgery or specialist’s policlinic will be the reception desk and doctors’ receptionists can be a formidable hurdle to overcome if you want to proceed. They deal with the administration surrounding your visit but also are evaluators, judges and jury as to whether your visit is justified and how smoothly it will proceed. They’re not to be underestimated. However, they are the link between you and your doctor and it’s important that they welcome you to the practice with friendliness and respect for the fact that you’re not there just to interrupt their coffee break.
First of all, a receptionist should be discretion personified. If they announce your condition loudly to fellow receptionists and waiting patients alike and discuss your latest test results, with people waiting in line behind you, they should be eating your dust. If they make you feel that they’re doing you an enormous favour when arranging your follow up appointment, you may want to try out the doctor in the next street. If they fail to pass on a message to your doctor, claiming work overload or if they ask what’s wrong with you when you turn up, you may want to reconsider your options.
That said, remember they don’t really have the power of life or death but can come pretty close. Treating them with the respect you would afford your local police chief is advisable but they have obligations too and rudeness, or failing to take you seriously can be enough to send you looking elsewhere.
What if your doctor is unreachable?
The best doctors will tell you at the end of each consultation that if you have any questions, they’re always available for follow-up appointments. However, many don’t and as with many complex conditions, HIV is never a question of ‘take the pills as prescribed and see me in six weeks’. You will have questions and concerns, especially during the initial period from diagnosis to the first year’s treatment and need to know that your doctor is prepared to make time for explanation and support. Most doctor’s appointments are very short and there’s never enough time to give you all the information you need, assuming you could take it all in anyway.
More and more doctors are offering e-mail, telephone and even Skype options to address follow-up questions but you have to remember that each one of those has to be justified financially, so daily phone calls to the surgery may not achieve the results you hope for.
Writing a list of all your questions is always a good idea. Nobody expects you to remember everything you’ve been told when you’re in a state of shock, so post-appointment, jot down what happened and make a list of the things you don’t understand and questions you may have. You could e-mail or snail-mail those to your doctor and arrange a convenient time to discuss them either in person, or via cyber space.
Your doctor may have hundreds of patients but should at least be prepared to communicate with you outside the confines of the fifteen minute appointment. It’s in his or her interests but also in yours, to establish a feeling of trust and being in good hands.
Time is money
If that’s your doctor’s motto, then maybe you should consider a transfer.
If you feel you’re being hurried through every consultation because the next patient is waiting, there’s nothing more unsettling than feeling rushed as you explain your problem. It leads to mistakes and misinterpretations. Of course you aren’t there for a cosy chat over coffee but you should feel relaxed enough to get your story across and feel that the doctor is considering it and offering the best solutions.
That said, in these days of accountability, a doctor has to account for every minute of his medical business because there is a price ticket attached to everything he does. That however is no excuse for ‘speed-doctoring’ in order to cram as many patients into a working day as possible. If that’s the case, then it’s his or her planning that’s the problem, not you the patient.
If you’re on time (very important) for your appointment then you deserve the necessary time to explain why you’re there. If you’re late, cancel and rearrange, it releases a little time for another patient and means you don’t have to waste either yours or the doctor’s.
The secrecy problem
Doctors very often have the tendency to keep their patients in the dark as to why a certain treatment is prescribed. It’s probably not deliberate: if you have to explain everything in detail to your patient, there just aren’t enough hours in the day. However, if you get the feeling that your doctor is not explaining things because he or she thinks you just won’t understand, that just won’t do.
Similarly, if he or she doesn’t share results with you and give you sufficient explanation as to why results have turned out the way they have, then that shows a lack of respect and a certain arrogance that doesn’t belong in this day and age.
They may also try to blind questioning patients with science, in the sure knowledge that you will quickly abandon the quest for information. A good doctor will take the time to explain the ins and outs of your condition in terms that you can plainly understand. If they don’t and if you feel that you’re not being told the full story, you may want to consider a move.
It’s also vitally important that you feel confident that your health picture is being treated with discretion. He or she may be your family doctor in your home town and you need to feel that discretion will be a priority. It almost always is but you need to feel confident about that. Apart from which, the other staff in the surgery may also be aware of your details and if you live in a small community, you want to be sure that nothing will slip out into the community.
Unfortunately, HIV still carries so much baggage and if you’re worried that your private details are not completely private, then you may want to consider a move.
Does your doctor look at the whole picture?
If you have HIV, you’re more than likely to be dealing with at least two or more medical specialists. These are very often based in different places and are responsible for different specialisms within the spectrum of HIV treatment. Someone needs to maintain an umbrella view of your health and tie all the findings and treatments together to create the best possible course of treatment. Your home doctor is probably in the best position to do that but not always. It’s possible that in the case of HIV, your HIV specialist may want to take control of your treatment but the same applies – it’s vital that all the specialists who are treating you are aware of the bigger picture. This means passing on results of tests and treatments where necessary. There’s nothing more frustrating than having to re-tell the same story again and again and then having it checked up by another health professional.
Someone needs to take a holistic view of your condition and ensure that all the communication wheels and cogs turn smoothly. If egos get in the way (and they sometimes do) and professional antagonism causes information to get caught in the traffic jam, it only leads to frustration and time wasting.
You may need to give permission for professionals to share information about your health but it can save so much hassle at a later date. If you find that your doctor is not passing on relevant information, or is reluctant to coordinate with other doctors, an important part of your care may be blocked when speed is of the essence.
The doctor doesn’t hear you
Does your doctor take the time to listen to your story without constant interruption? Does he pick up the phone when you’re in the middle of an important discussion? Do you get the impression that he or she is nodding their head without really hearing you? It happens. We all know that we’ve got to be as concise as possible in the time we’ve got but there’s nothing more depressing than feeling that you’re not being heard.
It’s all about good communication and whether you’re the first or the last patient of the day, you deserve to be heard and taken seriously. You’ll know right away if you’ve really been listened to, by his or her opening sentence after you’ve finished. If they give the impression that they’re not really interested or have heard it a thousand times before, then there’s little chance that you’ll be able to establish and equal partnership.
The old fashioned term, ‘bedside manner’ has never been more important than in these days of hectic schedules. Can you remember how good you felt when your health professional gave you the feeling that they knew exactly what you’re talking about and are going to do their best to make things better? A doctor’s smile, or hand on the shoulder, can make even the worst of situations feel so much better. If you don’t have that feeling, or he or she doesn’t have that ‘personal touch’, then maybe one of their colleagues elsewhere may be a better option.
You just don’t click
It can be as simple as that; the chemistry just isn’t there. No matter how much you try, you just don’t get along personally and all attempts at working together are met with coldness and dispassion.
Some doctors are by nature (as all people are) more formal than others but that’s no excuse for creating a gap between doctor and patient. Some patients like doctors who are brutally honest to the point of bluntness; other prefer warmth and empathy but if you have one who doesn’t fit your personal needs then don’t delay; move away – you’ll be better off in the end.
You also need to feel comfortable in telling the most intimate details, so having the right match is very important. The last thing you want is to feel that you can’t talk about certain aspects of your life.
It’s an intangible thing but it’s important to have that click’. You haven’t got it if you feel uneasy about decisions made, or recommendations and don’t feel you can voice your concerns.
Of course, in the same way that you have to be polite, avoid arrogance and have to remember your manners; you don’t have to put up with that from your doctor. If he or she trivialises your concerns, or bullies you into taking advice, or prescribed treatments without sufficient explanation, you should move on. If you don’t the chances are you’ll become subservient and by far the lesser partner in the relationship.
Taking the plunge
It’s scary and goes against the grain and you’ve got to take a few things into account (finding another doctor who’s better for instance) but there’s nothing more important than your health and that will only deteriorate if you lack confidence in your doctor, or feel that you’re not taken seriously in the surgery.
Doctors may have to face up to the fact that they are now part of the service industry and no longer untouchable demi-gods whose word is law. As a customer with a fiscal value, you deserve the best handling from walking into the practice to leaving with your prescription or course of treatment.
Apart from that, modern medicine and access to information means that the patient should be seen as a partner in his or her own health trajectory and not a statistic to be hurried out as quickly as possible. Most doctors are fantastic professionals and decent human beings who will welcome your input and your questions but unfortunately many of us may still have to bite the bullet and move on to a more caring atmosphere because some practitioners are still living in the Downton Abbey age.
You don’t have to put up with second class treatment and you do have your own responsibility to make the relationship work but you also have the right to seek out the best options to help you through living with HIV and anything else that may come along.
The quickest route to restoring health is via a partnership in which, the patient is fully aware of the problems he or she faces and the possible options there are to improve the situation. Anything less is insulting and patronising and unfortunately far too many doctors are still guilty of precisely that in order to make their own job easier.
Your health is too important to feel confused or uninformed.
Please don’t take my word for it; there are many sites on the internet which may help your decision-making process. They all pretty much say the same things and the following link is a good example: