Getting ahead of the doctors - worth the work

kw: book reviews, nonfiction, medicine, self help, self defense

My grandmother had her first child in a hospital in 1918. She hated the experience, and had the rest of her children at home, delivered by my grandfather. In her eighties, she had a stroke, was taken to a hospital, and died the next day without regaining consciousness. My mother said, "If Mom had woken up in the hospital, she would have died, either of fear or fury."

Most people live through a hospital experience, or so the statistics say. Yet nearly all of us die in a hospital. At the standard rate of one death per person, it looks like a good place to avoid! My wife and I have each survived multiple hospital visits and surgeries. Considering that medical errors are now at least the second leading cause of mortality in the US, I reckon we were among the lucky ones.

Among the rising tide of books by doctors, either seeking to correct "the system" or offering advice on how to most safely negotiate it, a quite recent offering is Doctor, Your Patient Will See You Now: Gaining the Upper Hand in Your Medical Care, by Steven Z. Kussin, M.D. Doctor Kussin was involved in a very serious auto accident several years ago. He keenly observed the way he was treated, as compared to non-MD patients. After a long recovery, he wrote his book, impelled by the many serious lapses of the "care system".

The opening section introduces two styles of medicine, conveniently labeled "Old School" and "New School." The former, and currently less popular, style, is based on experience and relies on "experts". The latter, driven by young zealots and their mentors, is based on experiment and the "gold standard" of the double-blinded, randomized, controlled clinical trial, which we can abbreviate RCT. There are significant problems with both styles. It takes a genius to sift the useful nuggets out of RCT's, and sufficient skepticism of the process to be willing to do so, for your doctor to provide you optimal care. As the author explains, RCT's are at best a somewhat tarnished bronze standard. The second section, "A Medical Day", drills home the multiple pressures on your doctor to provide "slightly better than the worst" care.

The next major section of the book, then, helps you choose a doctor, not according to friends' recommendations (notoriously unreliable) or advertising (worse), but upon the single criterion that makes a difference: Brains. How to assess brains? Look at the diplomas. You may have to ask to see them. Was the MD degree conferred at Harvard or West Nowhere? How about the other degrees? Every MD has at least three diplomas, and you can bet that if they are from top institutions, they will be prominently displayed. If, in addition to having "top smarts" a doctor can communicate well, and actually cares how you feel, you have a gem! But go for smarts over bedside manner. You can influence the latter, but have no control over the former.

Half the book is about hospitals. Unless you die "on the street", you are going to spend time in a hospital sooner or later. A hospital experience will most likely save your life, but it just might take it instead, or leave you with an unnecessary, lifelong problem. The doctor offers advice about researching hospitals, so you'll have two aces up your sleeve: Firstly, the best among those nearby, and secondly, the best of the best if you need something specialized. For example, I live in an area with three local hospitals, one of which is highly rated for cancer care. But when my wife needed to have a rare tumor removed, we researched a little beyond the local area, and found a hospital where the doctors were very familiar with this kind of tumor. The doctor we chose showed us his scar from the same operation, and told us he was doing three or four such operations daily. The best local surgeon was doing a few yearly. That isn't good enough.

The book is full of suggestions for the best web sites and other resources. A bit too full, as it happens. It is overwhelming. The best overall free web site to research treatment options is UpToDate's Patient section. The same site has a paid section that can be a life-saver, but is costly: $440 per year. Fortunately, they offer a $20 package for one week of access, which is typically plenty of time to locate what you need. First spend time in the free resource to get used to the format and the search techniques. Once you know what treatment has the best chance of helping with the least chance of killing you, look for a hospital that offers it. The US News and World Report Hospital ranking is the best place to start. The same site lists all the doctors for a hospital, but it takes a bit of perseverance to find the best doctor for the condition you have and treatment that you need.

Now, when you go into the hospital, what do you do? Here the list of things you must know and requests you must make is long and overwhelming. Make a checklist, for you can't possibly remember it all. Also, have someone with you. Never go into a hospital alone. You need an advocate, preferably someone who has a "hard forehead", because that person (a group is better, so they can take shifts) will need to enforce hand washing practice, request cleaning up of the room and furnishings (or do it themselves), and make sure your medications are appropriate (start with a list of what you are taking now, a very detailed list!). You'll need to read these last chapters a few times to become clear. Ideally, so will your helper(s).

But it can be worth it. Consider this: ten to twenty times as many people die of errors committed in the hospital, as die on our highways. Many of us spend hundreds of hours weekly in our cars, and the result is a US death toll of about 40,000 yearly. But of the 20% of us who will spend a few days in a hospital this year, the number who will die improperly is a half million or more. An hour in the hospital is probably 100 times as risky as an hour in traffic!

As far as I can find out, the author does not have a product to sell (other than the book), and no hidden agenda, so I place a lot of weight on his writing. But it is a whole heck of a lot of advice, some of it difficult to follow even if you are healthy and well-oriented. When you are sick, on your back, and perhaps disoriented, just getting up the gumption to ask a question can be too much. I'll give you an example.

During the months that led up to my cancer surgery in 2000, I was in the emergency room twice. During the first visit, for projectile vomiting and diarrhea and pain, it was determined that there were huge numbers of white blood cells in my (very runny) feces, but they could not find a causative organism. I was lying there, hearing this, and I thought, "No germ? Then it must be cancer. I need a colonoscopy..." but I fell asleep at that point, and never stated my request. The colonoscopy that I had two months later discovered a fulminating carcinoma the size of my fist. In that two months it had probably more than doubled in volume. I am lucky to be alive. Had I at least whispered my concern to my wife, at the very least she could have reminded me about it before I was discharged, and I might have had the guts to demand the colonoscopy before being sent home.

A final note. There is a detailed discussion of the trend for hospital care to be in the hands of a "hospitalist". This person's primary allegiance is to the hospital's profit bottom line, and he or she will try to get you out the door before you are truly capable of home care. Discuss this with your doctor while you are healthy, and make sure your doctor, or the appropriate specialist, will undertake your care and buffer between you and the hospitalist. Do your best not even to go to a hospital that has a hospitalist in charge. Trouble is, this can be hard to find out. Sometimes the best way is to turn off your computer and pick up the phone. Ask, "Who is in charge of each patient's care?" Everybody has free calling to everywhere now. Take advantage of it.

Also, get this book. Read it more than once. It is a bit like the Bible: too much to take it all in on first reading. Keep it for a reference.