The U.S. health care system is the best in the world, but is heavily burdened. Its personnel and infrastructure are stretched thin, HMO bean-counters and lawyers drive decisions about your health, and you’re just a drop in your hospital’s and your HMO’s buckets. More than four times as many people are killed by hospital error as by automobile accidents. And if you think health care is overburdened and overpriced now, just wait until it becomes free (i.e., socialized) and collapses under its own weight as people swamp it.
Until government control takes away freedom of choice in your health care, it can be significantly improved at no financial cost. Loose ends can be tied up, tests and treatments can be accelerated if necessary, your confidence in your treatment will improve, right tests may replace wrong tests, and you can actually choose your own doctors. The result will be better care, plus immeasurable satisfaction in important cases.
Here’s the free improvement you can implement immediately: Do It Yourself. No, don’t heal yourself; just make sure the existing system heals you properly and promptly. Take charge of your health care, up to the point medical expertise is necessary. Doctors diagnose your ailment and plan its treatment, nurses execute your treatment (with help from surgeons when needed), HMO accountants strangle it, lawyers bleed it dry, and you fund it with your insurance, cash, and taxes. But who in that whole system and process is looking out for you? (OK, the nurses are, but they’re also looking out for a few dozen other patients as well.)
The person in the best position to look out for you is you. Who in the health bureaucracy is coordinating everything? Who knows your symptoms best? Who cares the most whether you’re pain free now and ultimately healed? Who makes the ultimate decision about your treatment? Who’s in the best position to catch things that fall through all the cracks in that cumbersome “system”? Who’s the only person thinking about your case up to 16 hours every day, if warranted?
The obvious answer is you, of course, but what the heck do you know about serious diseases or injuries? What do you know about illnesses, medical tests, prognoses, treatments, drugs, and drug interactions in general, or about chemotherapy, 5-HIAA tests, OctreoScans, or carcinoid tumor metastasis, surgery, and chemoembolization in particular?
Me, neither, until personal experience and urgent need motivated me to start reading and get involved in my health care. What did that gain me? All of the benefits outlined in the third paragraph of this article. When I realized that my government-appointed medical provider had ignored obvious red flags until my PSA rose so fast last year that I’m likely to die from my prostate cancer (PC), not just with it, I began devouring authoritative PC websites and books. The most useful are written for patients, obviously, but after a few of those some of the doctors’ books and websites begin to make sense if we skim over the technical mumbo-jumbo.
Two major warnings are in order. First, be very careful which websites you trust. Previous columns from June 2001 and September 2001 will help you find sound medical information. Second, don’t expect your doctor to test for every scary thing you read about. Way too much of that stuff is just alarmist pap -- much like media sound bites -- and we want our doctors to appreciate, not resent, our involvement. [OTOH, my table comparing my vertigo symptoms with the known causes of vertigo helped 10 interdisciplinary physicians determine that I had a treatable inner ear problem (Meniere’s disease) rather than a few days to live with the brain stem emboli they feared a decade ago.]
So, if we don’t hit our doctors over the head with it, how do we use this extra knowledge? Concepts like preparation, comprehension, presentation, justification, decision, and action come to mind. That’s a lot of benefit from free effort.
Read. Learn enough about your medical issue to understand it, discuss it intelligently with your doctors, ask important questions, understand the answers, anticipate follow-up steps, and recognize departures from treatment norms. Example: reading led me to anticipate my prostate biopsy and learn that it requires a week without aspirin, so I avoided aspirin for the week preceding my urology appointment. This let my urologist biopsy me right away, accelerating my overall treatment by a week.
Present your case to your doctor clearly. List your symptoms and questions on paper, present them clearly and thoroughly, listen to and make notes on her answers, and be sure both of you understand the next step each will take. I’ve been praised by many physicians for my preparation and involvement, which, I am certain, helped motivate and enable them to speed up the ongoing process. They knew the next doctor in the chain could review my case very quickly and efficiently because everything they needed was in my hands, well organized and ready to discuss. I anticipated this (anticipation is cheap), and always had my lists of data and questions prepared at least one optimistic step in advance, just in case. When I first visited the surgeons, for example, I had my data and questions ready for the anesthesiologist in case they sent me directly to him. They did, and within the hour, rather than the next week, he pronounced me qualified for surgery. Another week cut from my timeline.
Compress the timelines. If it takes too long to get follow-on appointments with your doctor, make an extra one in advance each time you think it may be necessary. If you’re wrong, you can cancel it later (cancel well in advance). Each time this works may accelerate your treatment another week – important if you’re in pain or at risk, and cumulatively worth several weeks in a complicated, repeat-visit case. If your next test or appointment is right after a current test, ask people administering the current test whether they can accelerate its analysis and reports to meet that follow-on schedule. If the schedule is tight, call the doc’s receptionist a couple of hours before that follow-on appointment to make sure they have all the data they need. That buys a few more days’ compression without pressuring anyone. Don’t coerce, just ask, but only if your case warrants urgency. Remember: impatience and urgency are not the same. These people are in the business of helping others, and most are glad to oblige if they have the time and you justify your urgency. My current case has included 10-12 tests (e.g., biopsies, MRIs, CTs, X-rays, multiple blood and urine workups, other nuclear medicine scans taking days), plus at least 17 appointments with at least 10 doctors in 6 different medical facilities spread over 230 miles under three different “HMOs” (VA, primary insurance, and secondary insurance). We coordinated every step with the appropriate HMO in advance, made sure my records made each appointment (hand-carrying if necessary, especially with visits an hour apart or 230 miles apart), brought my X-rays and MRIs and CTs and OctreoScan and multiple biopsy results with me to each new physician, made sure new docs had previous biopsy samples if they wanted to re-evaluate them, proposed to two surgeons in different departments that they combine two surgeries related only by their anatomical proximity in my abdomen (the internet revealed both surgeries used the same incision) so I had to get opened up only once, made sure each physician’s office had the direct phone numbers of my other physicians’ offices if they had any reason to confer with them, kept up with very confusing billing and payments -- and, oh yeah – had two major surgeries performed at once . . . all in about ten weeks. That would have taken half a year, maybe much more, if I had just let it happen spontaneously, and neither of my problems had that much time to spare.
Not one hospital, lab, or HMO receptionist or records clerk, nor one technician, nurse, general practitioner, specialist, or surgeon complained about my active participation in this entire process. On the contrary; almost every physician and several nurses and techs praised my efforts. Three physicians said their jobs would be far easier if everyone was this prepared. A few have asked what field of medicine I practice in, until discussion quickly revealed the extent and sources of my knowledge: I had stayed at Holiday Inn last night, reading the books and internet data I had gathered. If you can follow my monthly column, you can duplicate my research. If you can figure out and include what your providers need to know (your medical history and symptoms) and leave out what they don’t need (your mother-in-law’s personality), and can write it up succinctly, it will help the doctors quickly ask the right additional questions and move towards a solution. Both your body and your doctors appreciate expediency.
When I first phoned the VA – my socialized medicine HMO -- with my initial problem, two appointments got set up: an initial fact-finding appointment the next month and a follow-up initial consultation with a specialist in three months. I saw months of delay coming, got involved, and got my case from a suspicious annual blood test result to dual major surgeries all before that initial specialist consult was even scheduled to occur. Under government-run socialized medicine I’d have been doomed even worse than I am already by socialized medicine.
I could confuse you further with more discussion of getting involved in your own care, but sometimes nothing educates better than example. The Seasoned Cooking editor eagerly agreed to post my notes, questions, case data, etc. on this website to give you a first-hand look at my examples of all this. You’ll notice the questions are detailed and full of jargon. That’s not due to prior knowledge; it comes specifically from bookstore and the Internet (be careful!) research focused on this problem. I’ve omitted some details for privacy, but most of it is right out there in the open in case it helps you wage the good fight against the next big medical challenge your family faces.
Think most problems are too small for your involvement? I once noticed that a nurse was using a bigger syringe than usual for my hundred-and-somethingth hay fever allergy shot. She was about to inject ten times the proper amount, which could have put me in life-threatening anaphylactic shock.
Get involved. If your doctor resents it, change doctors. If two or three resent it, you probably are getting too pushy.
Example: One of my early surgeons hadn’t planned to test for metastasis of my colon tumor before removal of my prostate. I knew that aggressive colon tumors often kill us much more quickly than prostate cancer usually does, rendering prostate surgery a waste of time, money, and pain. That test was on my list of questions for my next surgeon, and I quietly crossed it off the list when he suggested it on his own. No point in letting them know we’re watching them. (My surgeon called across the state as I was typing this to tell me that test cleared me of any metastasis.)
If you’re still with us, you may wish to see examples of all this at this link.