Tuesday 11 June 2013

The Doctor/Patient Relationship For People With Chronic Pain

Today's post from thebody.com (see link below) follows on from Dr. Rob's excellent letter to patients in yesterday's blog. We sometimes underestimate the value of a good relationship with our doctors and get so caught up in our own illness, that we take them for granted and expect faultless treatment every time. At the same time, doctors are also not perfect. They're human and make mistakes but relationships like this will serve both parties best if they are based on trust and respect. This article talks about exactly that.



They May Not Be Your Best Friends ... but Doctors Need Love Too! 
By Dave R. July 3, 2012

Internet links shown in these posts are designed to provide more detailed information if required.

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.

More Information: Medical Liability Litigation: An Historical Look at the Causes for Its Growth in the United Kingdom

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.

More Information: Patients Have Become Proactive in the Philippines

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.

More Information: Humanizing the Doctor-Patient Relationship

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.

Communication Is the Key

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.

More Information: Tips for Staying Calm in the Emergency Room

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.

More Information: Can You Trust Your Doctor? Get the Truth at Your Next Visit

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.

More Information: Approaches to Coping With Aggression in Medical Situations

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.

More Information: Fears of Malpractice Litigation

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.

People have to find the happy medium between passive respect for the doctor and yelling at him or her because you don't hear what you want to hear. We also all need to make adjustments in our approaches and learn to use the wealth of new information available in such a way that a consultation with a doctor becomes a constructive and rewarding process for both sides.

If you use the Internet or health forums, to research information, this will often bring up more questions than answers and for that reason, it's a really good idea to write everything you want to know down on paper, before you go to your appointment. It's another time saver. One of the greatest causes of frustration is when the doctor more or less ushers you out of the room before you feel you're finished or furnished with enough information. The problem is that it is easy to forget that there are patients waiting and they have problems too. Time constraints are putting too much pressure on the system and although that's surely a matter for the administrators and their budgets, it doesn't help doctor or patient when they've got 15 minutes or less to get everything dealt with. It's up to the patient to save as much time as possible themselves and that's where sensible pre-consultation research and lists of important points can come in very handy. We've all been in the situation where you get home after a doctor's appointment and kick yourself because you forgot to ask this or that. Careful preparation can avoid that problem. Another possible tip is taking someone with you as support. They will remember things the doctor has said that you haven't and can remind you to ask things you may have forgotten. Most doctors have absolutely no objection to this, partly because they realize the value of a second pair of ears.

More Information: Getting the Best Out of Medical Consultations

Doctors also tend to have their own way of giving information. This involves using medical terms which are sometimes not within most people's vocabularies. Occasionally this may be a deliberate tactic, in that they know the patient is unlikely to understand and more likely to accept any given treatment without question. It is always advisable to ask the doctor precisely what he means, or to repeat a piece of information because you haven't quite grasped it. They may be irritated but you do have the right to understand everything that's happening to you. Apparently medical organizations recognize this and are working on improving their communication skills. Again, this may be a direct result of patients having far more knowledge of their own complaint than ever before. Always remember, you have a right to an expert opinion but not one that will blind you with science: telling a patient that the subject matter is too complex to explain in five minutes is, to my mind, not really an option.

More Information: Patient-Physician Communication: Why and How

For people with HIV the doctor's communication skills apply especially to the potential side effects of medication. We know that it's a question of risks versus benefits but doctors should explain that to you very clearly so you at least know what to expect. Of course, many doctors are reluctant to do this because of the hypochondria factor. Putting side effects into people's minds carries the risk of patients then looking for them at every turn. However, if a doctor tells you what's possible and what's unlikely and then what to look for, you will leave the surgery feeling much more aware of what you're dealing with and that will save time at a later date.

It's also true to say that many people living with HIV and various co-morbidities can become more aware of their own disease(s) than their doctors. My HIV-specialist is a caring and careful man; a general internist and a specialist in HIV but he practices 90 percent of the time in a hospital environment. The sterility of a doctor's consulting room bears little relation to real life. He doesn't always fully understand what living with HIV means in the day to day, real world, where the patient has to cope with many external influences. Very often things are black or white from his point of view and require treatment according to the book, when we all know that HIV is a whole box of tricks which doesn't follow the rules. He does listen to his patients though and not rush them out before they've told their story. Although he is renowned for keeping people waiting, I can forgive him for almost anything because he listens so well. So, although the doctors may find it a little disconcerting, we have to impress on them that we do listen to our own bodies and have learned to trust various signals when something is wrong.

Patients also need to realize that doctors are not all the same and certainly in the case of HIV may have differing levels of experience and expertise. The home doctor is not a specialist in HIV, or any of the potential secondary infections, but is invaluable as a first port of call regarding the sorts of problems that both we and the rest of the population meet on a daily basis. Keeping him or her up to date with your HIV status and general condition will help him or her understand the nature of anything else that may happen to you. In theory the specialists should regularly write to the home doctors with reports of their own findings, but in the real world this may happen only sporadically. Even if you just hand over a piece of paper with your latest test results on it, it won't take up any time but will help your home doctor better understand your general health. Of course, some people prefer that their home doctor is kept out of the picture, especially in lands and culture where HIV is still an extremely sensitive subject, but this is a shame and a possible hindrance to future effective treatment. It's all about trust though, and the patient must do what he or she feels is best to protect his or her present situation. If discretion is necessary then that's the way it is.

There will always be cases where things go wrong between doctor and patient. You just may not click, or you may be unsatisfied with the treatment and approach you are receiving and as a result, the trust can break down. Many countries have the option of a second opinion and whilst many patients may see this as a hurdle, involving starting again with someone new, it may be of more benefit to you in the end. Like all relationships, human beings are involved and not everybody gets on with everybody else. It's just a fact of life and mostly nobody's fault. If that's the case, then it may be best to realize that your health is paramount and move on to someone, or somewhere, else. Similarly, if your doctor has made a mistake, your first reaction may be of anger and frustration because doctors are supposed to be infallible. Realizing that they are human beings with long working days and incredible pressures too may help you avoid long and ultimately frustrating complaints procedures. To move on and make it right with someone else may be the philosophy that saves you a lot of heartache.

More Information: In Better Health: Doctor-Patient Relationships Improving

You're ill, so the likelihood is that you'll be spending some time in various hospital departments and doctors' waiting rooms. Making that as pleasant and constructive an experience as possible may turn out to be a social skill both doctors and patients will be concentrating on more and more in the future. So if it's possible to sum up the best approach for receiving the best of care then some of the following points may help you make decisions.

Bring a friend
Whether in a hospital bed or in a consultation, a patient may receive better attention than if they were on their own. It's sad but true and we should all be aware of people who are on their own in life, especially the elderly. There are enough horror stories of neglect when there's no one to witness it, so offering a little of your time to accompany someone who lives alone may be of more value than you think.

Keep your cool
Although you're ill and under stress and may have to go through endless bureaucracy before you even see the doctor, it won't help if you bring that emotion to the consultation. Tell the doctor how you're feeling and why but if you can explain it calmly you will have much more chance of sympathy and less chance of anti-depressants being hurriedly prescribed.

Don't exaggerate, or play down your symptoms
Your doctor will quickly see through you if you do either and may come to conclusions that lessen the effectiveness of your treatment. Don't feel guilty, we've all done it because we're either desperate to convince the doctor that we're really not well, or hate complaining and feel we are somehow weak, if we moan.

Find your hidden sense of humor
This can diffuse what is normally an abnormally formal situation, especially with a new doctor. If you smile or make jokes at your own expense, you'll come over as more relaxed and put the doctor at ease too. However, the latest smutty joke, or incident from Ru Paul's Drag Race may not have the desired effect.

Be prepared
Like all good boy scouts, do your research and make a list of everything you want to know. If necessary, jot down things during the consultation too -- you'd be amazed at how much you forget especially if the news is not good. Also ask questions if there's anything you don't understand -- the next appointment may be some time away.

Look at your doctor in a different light
He or she may not have all the answers and you're entitled to be allergic to BS but doctors are human beings, with families and lives outside the consulting room. They may be having an off-day, or not feeling too great themselves, or just be in a foul mood. We're entitled to professionalism but we're dealing with human beings not robots (yet) so try to adapt your approach to what you read in their body language or attitude. You want the best possible outcome and so do they but if you're the twentieth patient, after a long and complicated day, try to be aware that they are only human too. That's why I always try for first appointments. Providing they've had their coffee and aren't Nurse Jackie, Oxycodone dependents; they should be at their best early in the morning.

It's a complex social interaction between doctor and patient and it's changing very quickly with the times. Some doctors and medical authorities are still not aware of the new possibilities that patients have to arm themselves with information. Some still feel that their position makes their opinions unquestionable and fail to take patients seriously. Equally some patients are too quick to judge, or find it difficult to communicate with doctors, or "self-destruct" by becoming angry or frustrated. It's sometimes a delicate balancing act but communication and the building up of trust and good relationships are what we all must strive for; it's in our own interests. Similarly, we don't have to put up with sloppy treatment, or inappropriate personal interaction. It is how we deal with it that will determine how well we are treated. We need the medical profession on our side and they need us to help them understand what it is to live with HIV and its associated medical problems. Still some work to do then.

"In the sick room, ten cents' worth of human understanding equals ten dollars' worth of medical science."

-- Martin H. Fischer (1879-1962), German-American physician

More information about the doctor/patient relationship can be found in the following links.

The Doctor-Patient Relationship: Challenges, Opportunities, and Strategies

Physician-Patient Relationship

http://www.thebody.com/content/67715/they-may-not-be-your-best-friends--but-doctors-nee.html

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