The state of health care past, present, and future is a matter of heated debate. I understand that, because our health is very important. Paying for it, trying to decide who should pay for it, and how much is reasonable are all topics debated for decades; and, no matter what happens in the future, it will still be debated. I am not interested in discussing the political side. I want to discuss the human side. This is the part that has always been there regardless of which system or country or political party is in charge. The human side is what happens when you are in that little room one-on-one with the doctor. To me, this is the crucial point. This is where it is decided what is needed and what should be done. There is only one way anything good can happen regardless of what else may be involved. The question of the day . . . Is your doctor really listening to you?
I am 53 and have had significant enough health issues from a very young age to be a qualified witness of the state of medical care in regards to this all important question. In my early years, people would have one doctor who followed them for decades, if not their whole life. That doctor didn’t always know everything, but he knew you inside and out and was willing to go to any length to find out about anything he didn’t understand or know how to fix. As medical science grew as a field and specialists developed from baby doctors to heart doctors, to lung doctors to whatever-specific-thing-that-ails-you doctor came along, it was great because people started being cured of things that used to kill them, or live with things more comfortably. The down-side was that you went to more than one doctor over the years and even at the same time for different things. No one got to know you inside and out. General Practitioners came to mean more of a case management doctor than your actual doctor. The premise was that this one doctor would be kept in the loop as a central housing of information and provide general testing in-between specialist visits to be a connection link for all of your doctors. Idea in theory sounds wonderful, but it didn’t always work like that in practice.
Some people stopped going to the GP for the most part, or when they did, some specialists ignored the knowledge that the GP could provide to help provide better care for the patient. This led to doctors treating symptoms and specific situations rather than treating the whole person. Next, throw in the factor that doctors began needing to see more and more patients in one day to pay bills leaving very little time to actually talk to a patient about issues. It actually came to a point where there was just no time to listen and finally to that is the norm, so no one even wanted to listen. Patients actually learned not to talk any more than necessary, to answer the general questions being asked. Gone were the days that a doctor wanted you to ramble, so he could pick up the flags that could lead to correct and subtle diagnoses. If you haven’t noticed, it is the patient who suffers in this scenario. I know I noticed and almost died because of it. With everything I have gone through, I just don’t trust doctors anymore.
Having doctors who don’t listen is a dangerous problem for anyone, but in certain populations it can be more prevalent and brazen.The DeafBlind population is one such population I have found. I have no problem advocating for myself and never have had that problem. I am bold and blunt. Becoming DeafBlind only took the wind out of the sails for a short time, and then I came back full on, especially after I noticed that doctors were literally ignoring my serious complaints because they were too busy calculating the minutes of office time to avoid more fees for using an interpreter. Even getting a doctor to see me at all took several years of politely trying to educate on the need and the ADA law to outright legal action in almost every single case. Several doctors would finally give in to seeing me with an interpreter, but literally ignore me and give me such lousy care and rush me out the door that I would not want to go back to them. The later few who were forced, but also knew that I was developing techniques to prove that care was subpar or even dangerous, just gave me lip service and tips to eat less and exercise more to whatever ailment I was describing. Yes, I am overweight, but I do exercise a lot (I have reams of data from exercise monitors to prove it), but I was also throwing up every morning and unable to keep food down while I also had severe upper stomach pains. This went on for three years under one doctor particularly toward the end until I was too sick to care anymore and didn’t care if I died. When actually sick with something in between regular checkups, I was refused appointments saying they couldn’t schedule an appointment with an interpreter. There is only one medically certified interpreter here for a twenty-six county area. The doctors and hospital refused to pay for an interpreter for emergency room visits or ill appointments from the larger city of Atlanta because of the extra costs. I was told that I would have to wait until my regular appointment, sometimes three months in the future.
On one such appointment, after having tried almost weekly for two months to get in because I could not eat any food and drink little water and keep it down and was in extreme pain, my regular doctor just happened to be out of the country, so a new doctor who was just finishing up residency saw me. Her first words at my verbal and written descriptions (I always bring a written one to help speed the process of communication) was that we should check my gall bladder. I had never heard this from a doctor, though I knew what a gall bladder was. Two days later after blood tests came back, my husband was called to take me to the emergency room immediately. We asked if it could wait until the next day since my husband was finishing his work day 60 miles away, and it would be late when we could go. “No, you can’t. You must go now, not later. Your liver is failing. If you wait, you will die!”
I went, of course, and found I needed emergency surgery immediately; but further tests showed I wouldn’t survive the surgery due to infection, dehydration, dangerously low levels of potassium, magnesium, and other minerals necessary for life. I was pumped full of IV antibiotics and the needed vitamins and minerals for 12 hours before it was deemed safe to do the surgery. Hospitalization was over a week. Others who heard that I had gall bladder surgery kept remarking that it was a simple surgery that often could be done out-patient. Well, yes, that is totally correct; but when a doctor ignores you for years, a simple problem can become a threat to your very life. I was more aggravation than the normal patient who at least provided income deemed justifiable for the aggravation. The perceived aggravation of a DeafBlind person – who needs an interpreter for a slow method of communication and is deemed less valuable because all I can and should do according to one doctor is “sit in a corner and wait to die”- isn’t worth what I pay despite good private insurance and Medicare. It is considered better to ignore me. As I said, I don’t trust doctors now.
Years of fighting have begun to pay off. I do have a couple of specialists that will now see me with an interpreter and are giving quality care, but even then I still have to work hard to get past the routine assembly line medical routines that force a doctor to limit conversations and that encourage only cursory listening. I am now facing another surgery that has been too long in coming leaving me to suffer longer than needed and reach severe potential of damage. Fortunately, I don’t think I will get as critical as before because diligence is paying off.
In medical care, we need more than just state of the art technology and advanced medical knowledge that has become the modern way. We need a little of the past along with the new. State of the art technology and highly trained doctors need to have all the information that they can get about a patient and their individual situation even beyond the moment. Doctors in the past asked questions and listened carefully to the answers to help them analyze the problem; and even today, with all our medical advances, that skill of listening can give doctors information that can be just as useful, if not more useful, than all the sophisticated tests and equipment.
In this fast-paced world of diagnose and push them out the door, how do you get the doctors to listen? Speak firmly and repeatedly, and find ways to prove what is happening. Be diligent for yourself and your loved ones in insisting that a doctor listen and consider what you say before they rush on. It is about putting the human side of medicine first again. If they refuse, find another doctor. It is your body. You have to live with whatever care they give. Make sure it is the best it can be.