I've railed about the many medical fiascoes I've battled over the last thirty years. And I've mentioned that there are great resources that help weed out the "professionals" who are urged by pharmaceutical companies to alter our lives by pushing meds for diseases that aren't even recognized by Lancet, JAMA, nor any other medical journal. What I haven't talked about much is the way you need to interview a medical professional to find out if he or she is the right type of LISTENER for your disorders and symptoms.
A friend of mine is going through a lot of the same issues I've been battling since teenhood. She is easy to gain weight, despite a healthy diet. She has very little steady sleep patterns. Her joints are unstable, and her stomach issues are creatiing pain and have no specific source for the issues. I know her symptoms first hand, as I am also someone who can't sleep, gains weight when my calorie count is in the 1200 range, and both of us are consistent at a body temperature of 97.1 or within .1 of this. She has thyroid issues. She has digestive issues. She has connective tissue issues. She's also 20 years younger than I am, and has already given up on getting any help from any medical professionals. Her care has always been during the years when HMOs and PPOs are the only source of care. As a child all the way until my early twenties, I was fortunate enough to have a personal physician- a Family Doctor. Within twenty years, the model of Family Doctor has given way to Corporate Designated Healthcare professional. We no longer have relationships with our doctors. She is a victim of this, and I can see how it is destroying her ability to trust any medical professional.
Concierge Medical Care is the newest catch phrase, but it really is the once common practice of finding a doctor you trust, making an appointment, and having enough time to talk to a person who has professional experience and is willing to use that time to help us discover the reason for our symptoms. Symptoms seem to be lost on the current health care models. Symptoms are secondary to tests. Symptoms are what we are hoping lead to a solution, a diagnosis. But we don't see medical diagnosticians. We see formulaic, must-fit-in-a-medical billing code push to diagnose. We are losing contact with the humanity of our doctors. What once was common and general practice is now an overpriced, option for the have's, and seems out of reach for the have-nots.
I am, as a disabled person, on a Medicare program. This program isn't the government run Medicare- but a contracted health organization that is supposed to help support the system. According to the 153 page package I received this month, allowing me to determine if I should keep this option or move onto a different option, I am supposed to expect to have at least 15 minutes with my healthcare specialist, can have up to four "covered" appointments, and I am allowed at least two psychological related visits per year.
My friend, who has been seeking employment for months, is on a waiting list for Medicaid, a state run program. While she waits for the approval, or disapproval, she is unable to afford any concierge visits. If she goes to a county hospital, she cannot guarantee being seen by the same doctor on any visit. And, she has to pay out of pocket. For anyone on a fixed income, this can be a decision between paying rent or finding a diagnosis. Then, once a diagnosis is reached, medications or tests become another large financial concern. My friend is too sick to afford the help she needs to be healthy enough to find a job that would pay her benefits.
The problems for most who struggle paycheck to paycheck come from doctors who don't take the time to hear and understand the symptoms a patient is trying to explain. Because the low income patients have allotted less than 15 minutes per visit, no real medical history can be documented. The battle is getting years of poor health understood by someone who has up to 20 patients to see a day, and to expect that individual attention to lead to at least relief, if not a diagnosis.
Some ways to expand the amount of time a doctor takes with us is to ensure we schedule an appointment during a slower period of the week. Most doctors are fully booked Mondays, Wednesdays and Fridays. Ask your medical office which days seem to be less booked, and try to get in on those days. Another way to be heard is to find out if the doctor has a history of taking time to read a full chart before s/he sees you. Some doctors will ask for your records, and simply not bother checking through them before you're seen. Ask the NURSING staff of the medical office if the doctor has a set time of day to read through charts prior to your visit. If the doctor is NOT a chart reader, find a different doctor, or you'll be wasting your time repeating information that is already documented.
Do your research with the internet and determine if the doctor you are considering is aware of other patients who have a similar history. My friend will likely see a doctor I spent years seeing because the office is experienced in dealing with people with my condition. Her symptoms are so similar to mine, she can use me as a referral case. YES, letting someone share your doctor and saying "When you saw Cathe you noticed she was experiencing similar issues with pain in joints, a history of insomnia, migraines, and agitation, along with pain when eating." Letting a doctor know that you're aware of similar symptoms in a diagnosed patient can help lead her to the correct tests to offer, and the right diagnostic tools to use.
Don't let a doctor dismiss your history or symptoms. NOTHING is more frustrating than hearing a medical professional say, "oh yeah, that's going around, you'll be fine after a few days." The fact is, you may have similar symptoms as someone with a flu but Lyme Disease can hide that way. Gallbladder disease can appear as Irritable Bowel Syndrome. Hives and rashes can appear to be psoriasis, or it may be an allergic reaction. Being dismissed as having something "everyone else" is going through is probably why so many people are misdiagnosed for hundreds of illnesses. For instance, a friend who has narcolepsy was misdiagnosed as having depression. If your illness is similar to common disorders, then you MUST get your doctor to hear you by explaining that this is NOT situational, it has a pattern, and you have documented the patterns.
If your body temperature is 99, and the doctor thinks that's just above normal, having a record of weekly body temperature charts- showing a "normal" for you as 97.1, you have a reason to say, "Listen to why this isn't normal for me." My left shoulder and rotator cuff were dislocated for up to 8 months one year because a doctor kept trying to convince me it was "just muscle strain from carrying a purse." To dispute his comment, I showed him photographs of the shoulder in the normal position on a Monday and dislocated on a Tuesday, back to Normal on Wednesday. Then, since he was just too stubborn to believe photo evidence, I simply put the shoulder blade in a position that was apparently and obviously just plain twisted and then back into the sockets again. After his jaw came off the floor he finally admitted that it might not be a "purse strain" afterall.
Doctors seem to be under the impression that if a disease is in a magazine or on the news that month, we're going to be sitting in the office just to discuss that disorder du-jour. A great many people probably see a disorder and assume that their illness is "swine flu" or something similarly over exposed by the media. In fact, the influx of patients who are armed with Web-MD information has done a lot to discourage medical professionals from listening to actual patient history. But, if you are armed with a family history, a documented history of your own symptoms, and perhaps even a few testimonies from family or friends that state- this is not normal for you- you may be heard with a more sympathetic ear.
Doctors also have a deaf ear to the idea that medications they are giving us could be causing other problems that appear as illnesses. Seniors are victims of this almost rampantly, with blood pressure medications given to someone who is having side effects of cholesterol medication, and then antidepressants given to help battle the side effects of sleep medications. The side effects need to be documented as soon as they appear. Just by documenting side effects, I was able to reduce my medication list from 24 different prescriptions per day to 9. I had a diary of what happened to my body after what prescription was given, and was able to show a pattern of several effects that directly correlated with new medications handed to me to combat disorders that apparently don't exist for me.
My current doctor with the Veterans Health Care office sets up one appointment per hour. That means, she spends 15 minutes before the schedule appointment to read through my charts. When I sit with her, she goes over any tests that were returned, and we also view my weight and temperature history. We go through my menstrual history to see if the depression I have is related to hormonal changes. We do this at every appointment so we can verify patterns. Fifteen minutes of the appointment is her examination to see if there have been any changes physically, mentally, and even if my appearance has changed. The last fifteen minutes is about the current prescriptions, side effects, and changes that have improved or have become worse since medications are added or removed. I see her at least once a quarter due to my autoimmune disorder, and chronic joint dislocations. Because of the documentation in my care, she can easily see when there are decreases in muscle tone, increases in calcium deposits, a change in my general mood, and if my body temperature has steadied at any particular level. She listens and she pays attention when I tell her something isn't right.
My civilian doctor hands me 15 minutes total, including the time she views my charts. She is focused on blood tests, and doesn't fiddle around with small talk. In fact, I think I've said less than ten sentences to her in the four visits I've had this year. Her documentation of my blood work is pristine, but she probably couldn't pick me out in a crowd of people if I left my cane in the waiting room. Because she is all business and no play, I hand her documents of diaries of the changes in my body, physical changes, and even comments from friends and family. She notes these, and after a few weeks, I will generally get a call stating what she sees has changed. The care is not personalized, and it feels like Jiffy-lube medicine, but at least since the homework is done for her, I know she will read through it.
The worst listener is one who is so scheduled that he will only nod at you, tell you what your condition is before you have even opened your mouth, and will shuttle you out with either a pill or a "get some rest". You are a number that fills the quota for the HMO and nothing more. If you find yourself being told your illness before you've had any chance to utter a word, fire that doctor. File a complaint with the HMO, and ask for a history of any doctor you are considering , including references. Not all doctors are working for their HMO quota, and you may find the right one will be the one that has been listening since the days before Concierge and Managed care. Listen to your gut. You'll know if you're being heard. And, if any doctor makes you feel humiliated by your symptoms or illness, again REPORT that doctor to the health care provider. You deserve health CARE not health apathy.
Today's questions- Have you felt dismissed or judged by a doctor before you had a chance to explain your symptoms? Do doctors you see prefer to look at numbers, or are you considered more than the sum of your blood counts? What have you done to get your doctors to hear you, and really listen?