Humanist Perspectives: issue 153: The Partially Informed Patient

The Partially Informed Patient
by Ted Merrill

When I signed a form and lay down 40 years ago for repair of my hernia, I had a large advantage over other patients. Though ‘informed consent’ was much less clearly defined at that time, my consent was extraordinarily well informed, for several specific reasons:

First, I knew intimately the anatomy and pathology of the inguinal area.

Second, I had repaired many hernias myself and knew the potential pitfalls and errors or accidents that might occur, from surgical to anaesthetic to pharmacologic, and had a sense of the odds on each.

Third, the surgeon was my partner with whom I had worked for years. He and I had assisted each other on numerous hernia repairs, so I knew exactly how carefully he would handle the tissues, how he would place that first important stitch in Cooper’s ligament, what was the chance that he might skewer my spermatic artery or tighten the external ring too snugly or leave a blood vessel leaking inside as he closed the wound. And I knew and trusted the anaesthetist and her methods. All went well, as I had expected.

Many years later I signed a consent form again. This time, however, it was with much less assurance because, despite all my knowledge and all the good intentions of the health care providers, my ‘informedness’ was full of gaps, uncertainties, hopes, hesitant faith and hopeful assumptions. I had developed aortic stenosis and was bargaining for a new valve.

I had once watched Albert Starr, a pioneer in cardiac surgery, install a mechanical valve. Since that time the technology had advanced, the mortality had decreased and there were now many accomplished heart surgeons available; but most of what I knew about it was third-hand and sketchy.

I knew that I had the choice between a mechanical valve and a pig valve; that the pig valve might fail before the rest of me did; that with the mechanical valve I would be expected to take coumadin daily in carefully calibrated doses the rest of my life to prevent blood clots from forming on the valve; and that I would have to choose a surgeon, a total stranger, sight-unseen. I had never watched the placement of a pig valve nor a modern mechanical valve. My knowledge of anaesthetic techniques was obsolete. I had never operated a heart-lung machine, nor met the person who would be running it to keep me alive. I had only the vaguest notion of all the niceties of craftsmanship required, the complications that could occur, little glitches in technique, mechanical or electronic failures, problems with blood replacement, the details of stopping and restarting my heart, preventing clots or air emboli from entering my circulation as the heart restarted and numerous other potential problems that wouldn’t even occur to me.

When I first noticed an aortic systolic murmur I consulted an internist. I went back for the report on the echocardiogram and he said the stenosis was quite mild.

“Dr Schutz, who read the tests, is a superb echocardiographer,” said Dr Hodge. I had never met Dr Schutz, but from that moment he became the cardiologist who would follow my four-year progression from ‘mild stenosis’ to ‘critical degree of obstruction’, and who did the angiogram and ventriculography. I signed the ‘informed consent’ for this procedure (snaking a thin tube up from my groin into my heart to inject dye and take x-rays and pressure readings) though I had never seen him do one, nor had I compared his mortality/morbidity track record with that of other cardiologists.

Dr Schutz regularly worked with several surgeons, doing echocardiograms in the operating room to check the newly placed valves for leakage and pressure gradients. It seemed that he should be in good position to give an opinion.

“If you were choosing a surgeon to give you a new valve,” I said, “whom would you pick?”

“I know several I’d be happy with,” he replied. “I heard someone speak well of Albert Krause. Yes, Al would be a great choice.”

Since I had not yet experienced any of the ‘big three’ symptoms of aortic stenosis — dizziness, chest pain, or sudden death — there was no clear consensus as to when was the right time for the surgery. I decided to get a second opinion from another cardiologist of my acquaintance.

Dr Ames reviewed the history and the records and listened to my heart and lungs. He agreed that I would indeed need the surgery. “But I would say that you don’t need to rush it; it doesn’t have to be done before the holidays. I’d plan it for early next year.”

I thanked him and we stepped out into the hall. Dr Hattenhauer, another cardiologist, was just walking by. I was introduced and I briefly described my mission with Dr Ames.

“Oh, yes,” said Dr Hattenhauer. “I’m familiar with that dilemma. When I was in my fellowship I had three patients worked up and scheduled for aortic valve replacement in one week. Two of them died before they got to the operating table.” I swallowed hard and then mentioned the choice of kinds of valves.

“Go for the St Jude mechanical valve,” said Dr Hattenhauer. “It’s been perfected and tested and will last a hundred years.”

Yes, I said, but the anticoagulant…?

“That’s a minor problem,” he said. “You wouldn’t want to have to go through the surgery again because the pig valve didn’t last.” This was the same advice I had had from the internist and another cardiologist. But I could not agree with their view that lifelong dependence on daily anti-clot medicine, the nuisance, the discipline required and the attendant risks of either bleeding or embolism were trivial matters.

Fortunately my appointment with the surgeon was that same afternoon. Thinking of Dr Hattenhauer’s three patients, I walked eagerly but gingerly down the block to Dr Krause’s office. He was as brisk in his conversation as in his surgery, and as careful and thorough. On his desk were samples of different valves: a St Jude valve with its fracture-proof, carbon-fiber, eccentrically-pivoted disc, serviceability indefinite; a pig’s aortic valve — about the same size as mine — estimated durability seven to ten years; a modified version of the pig valve with a metal stent added, which it was hoped would add a bit to its life expectancy; and a newer type of valve fabricated from calf’s pericardium, durability thought to be about comparable to the modified pig valve.

The choice was going to be even more complicated than I had thought. I sat silently looking over this array.

“Another possibility is a human allograft — a preserved valve from an organ donor,” Dr Krause said. “We haven’t done many of them in this country, but they’ve been used quite a lot in Australia.” I hadn’t known this option existed.

“And how long will that last?”

“It’s not certain, but we think some may be good for up to twenty years.”

“Would it require long-term anticoagulant?”

“No.”

I looked from one of the specimens to another. There wasn’t a human valve to look at, but I’d seen plenty of them at autopsies.

“Before the surgery you’ll have to make a first, second, third and fourth choice,” he said, “in case for some reason one or more turn out not to be technically feasible while we’re in there.” He seemed to be pressing me for a decision now. I thought some more.

“Suppose you were in need of a new valve. Which would you choose?” I asked.

He paused for a moment. “I’m fifty-two.” Another pause. “I’d probably take the human allograft.”

“That sounds good enough to me,” I replied with a relieved smile. “I’d like the human valve.”

A date was set for ten days hence. My wife and I were shown two videos to orient us as to what to expect before and after the surgery — but they did not show Dr Krause at work.

I got my first choice of valves. The surgery, I was told, went very well, and my recovery was smooth. I had not been informed that there would be two little barbed pacemaker electrodes stuck into my heart muscle as an arhythmia precaution, to be jerked out by their wires on the day I went home; but this too went without a hitch.

Looking back now, with my new valve already 12 years old and functioning flawlessly, taking no medication and with no cardiovascular limitations on my activities, I feel only gratitude for the technology, the craftsmanship, the resources and the donor and his family who made this extension of my life possible. I know that, as a physician talking to other physicians, I had the best information possible under the circumstances. But it wasn’t the same as with the hernia repair. This adventure brought home to me the realization that for most of our patients — even when the patient is a physician — ‘informed consent,’ as we glibly call it and as I had once experienced it, is not really possible.

Some years ago the Journal of the American Medical Association published a study of about 1,000 taped interviews on routine visits between physicians — family doctors, internists and surgeons — and their patients. The report concluded that in 9 out of 10 cases “the doctor did not discuss the issue enough to allow the patient to make an informed choice.” The article went on, “The findings suggest that the ethical model of informed consent is not routinely applied in office practice.”

What information does a patient need? What, indeed, are the implications of designating a person as a ‘patient’?

When one desires help with a health-related problem, the first move is to decide what health-care discipline makes sense. Counselling? Chiropractic? Homeopathy? Naturopathy? ‘Alternative’ medicine? Surgery?

This decision requires some information, which the patient may or may not already possess to his satisfaction. And one can never say glibly that his choice is correct and therefore all the others are wrong.

What are the differences and the similarities between a patient and a doctor that make a useful encounter possible? Information, knowledge and skill are of course the primary differences, the resources the patient seeks.

He must then choose (or accept) a specific individual doctor, and by entering the encounter he is acknowledging — or at least hoping — that the doctor has skills and knowledge that he himself lacks.

He is now ready to seek more information about the nature of his problem. But the amount and kind of information he can accept is different for every patient. How is his command of the English language? How much does he understand about the body, about anatomy and physiology and pathology? How much does he want to know about dangers of his condition, side effects of treatment, the odds of complications, the real prognosis?

As a physician I must evaluate the patient with respect to all of these factors, and then try to convey as much information as he needs, in a form and language that he can understand. One patient says, “But why not…? What if…? How do you know…?” Another says, “Never mind all that. Just give me the prescription. I’m in a hurry.”

What the patient really needs is advice, and just enough information to validate a decision about it to his satisfaction. The true measure of the encounter is not so much the outcome, but the satisfaction that results on both sides.

Everyone’s point of satisfaction with the information lies at a different level, so no simple formula is possible. The evening before my heart surgery, Dr Krause came into my room. Though my mind was awash with small technical details, questions that I knew could not be answered, I was as satisfied as would be possible.

My wife did not know the anatomy of the heart and aorta, nor any of the technical details, so none of these questions occurred to her; her satisfaction point lay in a different place. The surgeon asked, “Mrs Merrill, do you have any further questions about tomorrow morning?”

“No, thank you,” she said. “Just get a good night’s sleep.”

Ted Merrill is a retired MD living in John Day, Oregon.