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Kent A. Sepkowitz, M.D., Medical Experts And Patient Autonomy

We have written quite a bit lately about health care and medical issues. We told the story of my father’s battle with cancer with a piece titled Never Tell Me The Odds: One Man, One Disease, One Battle and a follow-up titled Pundit Poppa’s Medical Report: Drawing Strength From Infusions Of Love … We’ve chronicled our friend Jan Fleming’s travails here, here and here. We gave tips on chemotherapy and critiqued a New York Times piece with an article titled Dr. Sloan Misses The Point: A Fighting Spirit Is Vital In Overcoming Illness and a follow-up titled Pundit’s Mailbag — Fighting Spirit And The Challenge To Live. All this, of course, in the context of the Special Note we wrote five years ago when my father had a stem cell transplant for his Leukemia.

Now The New York Times has run a different piece… this one by Kent A. Sepkowitz, M.D., a vice chairman of medicine at Memorial Sloan-Kettering Cancer Center in New York City. The piece is titled, If Only All We Wanted Was Expert Advice, and his point seems to be that people don’t really want experts; they want people to magically solve their problems or, perhaps, just to agree with them.

After explaining that he has a chronic plumbing issue related to his dishwasher at home and that plumbers dismiss his layman’s theories as to the cause, Dr. Sepkowitz realizes he does the same with his patients:

“…often I dismiss their ideas with the same careless flick of the wrist I have come to expect from the latest in my long line of plumbers and dishwasher subspecialists. Like the plumber, I’ve heard that one before, whatever the complaint; I’ve previously spent time and wasted patient hope chasing the same false lead down a dead-end path. I hope I have learned from my missteps, gained in wisdom, tempered my own eagerness to order test after test. I am the one with more experience at this, right? Isn’t that the point?

Many patients sense my reluctance to consider their theories. One recently asked me to evaluate him because of a sense of deepening fatigue without fever or weight loss; might it be an infection? I explained that I had tried many times through the years to diagnose infection in patients with his specific set of complaints but had never turned  up an answer. In my judgment, the “million dollar work-up” was a waste of his time and money. After I finished, we stared at each other in awkward silence. I had broken his heart a little, and I too was demoralized. It is not enjoyable to trample hope.”

The doctor sees the matter as a problem of our expectations of experts:

“It seems to me that what we have here is a basic problem with our attitude toward experts. The calculation ought to be simple: we all seek people who know more about a situation than we do exactly because they know more than we do. Of course, we always want experts. And when we find them, we ought to trust them, right? Instead, however, we dismiss them when they aren’t whistling our tune.

We suddenly become more expert at the very thing we thought they were expert at. After all, patients come to see me in a major research hospital, the ultimate house of science, a temple to the rational mind built on a foundation of countless sharp-edged logical observations made by experts from Hippocrates right up to the doctors and researchers published in this week’s New England Journal of Medicine. I am the somber keeper of this great tradition, the translator of the randomized double-blinded placebo-controlled studies conducted by thousands of researchers on hundreds of thousands of patients. I have the facts.”

Ah, but there’s the rub. When matters of personal health (or home appliances) are at stake, we want a lot more than expertise from our experts. The rational world suddenly loses its appeal; dull, steady scientific observation seems only dull and steady. We want some pixie dust, a little magic, an eccentric genius who can see through the usual mumbo-jumbo to the core of the problem (paging Dr. House).

It is an interesting theory but more than a little inadequate to explain the phenomenon the doctor describes. Yes, almost surely, there are people who are unrealistic and want experts to deliver more than humans can deliver.

But having worked with many doctors, first as I tried to help my father deal with his leukemia and stem cell transplant and currently as I try to navigate my father’s pancreatic cancer, other possibilities seem more plausible than a desire for pixie dust and magic.

Dr. Sepkowitz ends his essay with the notion that the relationship between a patient and his physician is almost religious in nature: “…we are left with the most basic, bare-bones determination: do we trust this guy or not? And this decision, rather than following along a perfectly manicured line of reasoning and evidence, relies on that least scientific of all human inclinations — the simple leap of faith.”

Well, one does need to trust one’s physician, but as Ronald Reagan urged in the context of nuclear agreements with the Soviet Union, it is prudent to “trust, but verify.”

Even the most trust-worthy of physicians is still a human being. He can forget, make a mistake, and overlook something important. And, in medicine today, dissatisfaction with the experts can often be traced to four things:

1) The Way Doctors Are Paid Doesn’t Encourage Them to Explain Very Much

If one needs a complex legal matter explained, one’s lawyer will be happy to explain it – and bill you for every minute he does so. The lawyer will fly to your office and discourse in your conference room or over dinner at your country club. And after explaining the matter to you, he will come back and explain it again for your partner, investors, etc. If you want him to write up a legal opinion letter on the subject, your attorney will do that as well.

In contrast, it is very difficult to get a doctor to explain much of anything that takes more than a few minutes to explain. If you ask a doctor if it is possible that you might have a lymphoma rather than adenocarcinoma, he is likely to say that the pathology is inconsistent with a lymphoma, but you won’t get an explanation of what precisely is inconsistent, why it is inconsistent, etc.

The image Dr. Sepkowitz seems to have of experts—as people one goes to and places one’s hopes in their hand—reminds one of nothing so much as the way ignorant sports stars or movie stars sometimes turn over their financial affairs to some adviser and then wind up penniless.

I think it is fair to say that more intelligent people typically use experts but recognize that, in the end, they are responsible for their own money… and their own health care.

The expectation that respecting expertise means surrendering to an expert is in a way very insulting to patients. Some may want doctors to just handle everything, but others want doctors to explain why they are recommending various choices of action, to define alternatives, etc.

2) Is The Expert Working For The Patient, the Hospital or Insurance Company?

My father’s chemo protocol was developed by Dr. James Abbruzzese at M.D. Anderson. He is a great expert in the field and he developed a protocol that included a roughly two-hour chemo infusion preceded by two hours of hydration, and followed by two hours of hydration.

He justified this by pointing out that the cisplatin in the chemo mix was highly toxic and that pancreatic cancer patients often have trouble drinking enough water.

We took this protocol to a South Florida hospital and another pancreatic cancer expert and, although he said he was willing to execute the protocol developed by Dr. Abbruzzese and M.D Anderson, when push came to shove, he was unwilling to order the hydration. He never gave a clear reason except to say he had other patients do a similar protocol without all the hydration and they did fine. In the end it became obvious that he was under heavy pressure from the institution where he worked to “turn” chemo beds.

We found another doctor and another local institution that was willing to execute the M.D. Anderson protocol as written –with hydration.

The key issue: We were sitting with our doctor and he had issues other than my father to deal with. How much faith can one have in the best expert if he has many masters to appease? If we are going to put faith in a medical expert, we sure better know that he has no obligation or incentive to work for anyone other than the patient. That is not the situation today.

3) Is the Expert Working for the Patient At All?

Dr. Sepkowitz works at Memorial Sloan-Kettering, one of the world’s premiere cancer institutions. In this type of environment, it is very common for patients to visit, get a chemo or radiation protocol set up and then go home to a distant state or country and have it executed by a local oncologist.

This makes enormous sense. The cost of healthcare is only partially what is paid to medical facilities. There are enormous costs in lost wages, transportation, apartment and hotel rentals, etc. When my father had his stem cell transplant, my family stayed in Houston almost six months.

Not to mention that patients who are ill are then further burdened with having to live in a strange city without family or friends nearby. So the idea of having great experts at major academic cancer centers planning the treatment while being executed locally makes perfect sense.

But those great doctors at Sloan-Kettering or M.D. Anderson or similar institutions get paid absolutely nothing for continual consultation with the local physician and with a patient.

Forget about being experts; we think our doctors and other medical personnel at M.D. Anderson are saints. They work for free, taking phone calls, sending e-mails, doing research, etc.

The problem, though, is that the relationship shifts. In many ways, all patients are like the Blanche Dubois of Tennessee Williams, forced to depend on the kindness of strangers. It shouldn’t be that way.

4) Do Experts have Enough Knowledge to Make Expertise Relevant?

Dr. Sepkowitz makes the point in response to a patient’s request for testing that “In my judgment, the ‘million dollar work-up’ was a waste of his time and money.”

This is an interesting question because Dr. Sepkowitz is a medical expert – but not an authority on the value of other people’s time or money. He also gives no indication of attempting to ascertain the value the patient may place on these things.

One issue may be, as we mentioned in point two above, that the doctor feels an obligation to an insurance company or Medicare or Medicaid or his own hospital to not order tests that almost certainly won’t pan out since any of these organizations might wind up paying. But that may be a conflict with the patient’s wishes.

Here is a real life example: Somewhere along the line, a family member who is a doctor mentioned that my father might want to have a genetic test for the BRCA gene mutation.

In pancreatic cancer, it is widely agreed and not at all controversial that if one is positive for this mutation, one’s tumor will be more responsive to “platinum” chemotherapies such as cisplatin and oxaliplatin.

The test for the BRCA mutation can be done through a simple blood test.

So we have a very low risk test — as opposed to something that requires surgery, etc. — and, if positive, a proven benefit — a more effective chemotherapy.

The problem: Only 0.2% of the population will test positive for this mutation and it costs $3,200 to do the test.

That it is not standard treatment is not surprising. Insurance companies and Medicare will generally only pay for the test if there is a family history of the mutation. Uniform testing would, in fact, confer very little benefit for very large costs. But these are considerations for public policy experts, not for an individual doctor with an individual patient.

The family member who is a doctor and suggested the test was not only a medical expert, but quite familiar with my father’s attitude and situation.

We instantly ordered the test, even though we had to pay for it. Why did we do so? The long and short of it was that my father had $3,200 and we were more than willing to spend it on anything that had any chance of helping my father. It is his money; if he dies of a terminal illness he won’t need it.

Nobody would think ill of my father if he wanted to go spend $3,200 on a vacation because visiting Aruba was on his bucket list, so why shouldn’t he be able to spend it on a test that has only a tiny chance of a payoff?

Yet, recommending or even informing patients of the availability of such a test is not standard operating procedure at even the top cancer centers.

This brings us to the key critique of Dr. Sepkowitz and his assessment of the way people deal with experts. The experts tend to be expert in a narrow field. When patients refuse to take the “leap of faith” that Dr. Sepkowitz seems to want to recommend, in part it is because even the greatest doctor just has no training or expertise in knowing how others value their time and money. Some may be ready to die and don’t want to spend a nickel; others want the “million dollar work-up” that Dr. Sepkowitz wants to deny them.

It is widely recognized that patients have rights. We are sure Dr. Sepkowitz would defend the rights of patients to die as they choose, indicating on advance directives etc., the right to not be resuscitated or to not have extreme measures taken.

Yet, he wants to deny the same patients the right to be treated as they choose, thinking that, instead, they should rely on experts. It is a chilling thought.

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