When Patients Think They Know Best

From Medscape Hematology-Oncology > Cheson on Oncology
When Patients Think They Know Best

Bruce D. Cheson, MD

Authors and Disclosures

Posted: 05/01/2012

Video link - http://www.medscape.com/viewarticle/762796

Hello. This is Bruce Cheson from Georgetown University Hospital and the Lombardi Comprehensive Cancer Center. This is Medscape Hematology.

I shouldn't do one of these when I am upset about something, but I'm going to ventilate a bit. Yesterday was like Goldilocks and the Three Bears in clinic. The irony was striking. The first patient was a young woman -- a lawyer -- whose father is a prominent lawyer and who always comes to clinic with her. She has Hodgkin's lymphoma and had agreed to participate in a Cancer and Leukemia Group B (CALB) Alliance intergroup study. In this study, patients with limited-stage Hodgkin lymphoma get 2 cycles of adriamycin, bleomycin, vinblastine, dacarbazine (ABVD) chemotherapy. If positron emission tomography (PET) is negative, they only get 2 more cycles of therapy. Four cycles has now become the standard in this situation. If they are PET positive, then they get radiation or other treatment.

This patient had her 2 cycles of therapy. She went elsewhere to get another opinion and the other physician agreed with our approach. She returned to get her PET scan and it was negative. Everybody was happy. Yesterday, she came to clinic with her father and her mother for cycle 3, day 15. I walked in the door and she said, "We have decided that I'm going to get 6 cycles of ABVD. We have read the literature and this is our decision."

Needless to say, I was a bit perturbed. Not so much because she would no longer be on the clinical trial -- that is every patient's right to drop off -- but because of the temerity to just tell me what they wanted rather than to discuss with me what they wanted. I produced a recent paper from the New England Journal of Medicine [1] showing that 4 cycles of ABVD for limited-stage Hodgkin's lymphoma was associated with an almost 90% survival at about 15 years. Their response was, "Well, yeah, but that's a Canadian study." These are supposedly intelligent people. I was very upset by that and I will not be giving her 6 cycles of therapy. If she insists on it, then I am sure she can find someone who will do so. I try not to overtreat patients.

What was ironic was the next patient. This was a somewhat older woman in her early 40s who came for a second opinion because she had the same stage Hodgkin's as the previous patient. She said that she had received 4 cycles of ABVD. Her PET scan was negative and her doctor wanted to give her 2 more cycles, but she thought that was too much therapy and came to me to get my opinion.

We had one patient saying, "Gee, this is too little therapy," and another patient saying, "This is too much therapy." In fact, what they had received was just the right therapy, and in their situation, it was 4 cycles.

The second patient was very happy and the first one wasn't terribly happy. It just shows you that patients can be right. They are not always right, but you need to at least have a discussion with them about the reasons for doing what you are doing. I explained to the first patient about the risks for secondary malignancies, infertility, cardiac dysfunction, and the reasons why over the years (since we are curing so many patients with Hodgkin's lymphoma) we have been trying to reduce the amount of therapy to decrease the long-term adverse effects. Somehow, it just didn't sink in.

We do our best and we try. Most of the time it works, but sometimes it doesn't. I made one patient happy and one probably not quite as happy as she could have been, but she will be cured of her disease.

This is Bruce Cheson. I'm sorry if I am just venting and rambling today, but it was an interesting contrast. Signing off for Medscape Hematology until next time.

This is interesting. When I

This is interesting. When I was in the ER with my parent, three people came in. One ER doctor said, what the hell have they been doing all this time? An aide came in and said he disagrees with what I said. That person was wrong. The third was a doctor and his English was hard to understand and he had an attitude, but said get that patient to ICU. Those two doctors saved my parent.

Hmmmm..... Identifies

Hmmmm.....

Identifies patient, provides video and written descriptions of her treatment, AND the patient, and her father are lawyers. How long do you suppose it'll take for the summons to be served on the good doctor?

Blue Skies

"Temerity?" Maybe both

"Temerity?"

Maybe both patients were right. They just had different priorities and comfort levels about treatment protocols.

Patients should be treated as

Patients should be treated as individuals. The “standard” treatment may not be the best option for everyone.

I agree the first patient should have discussed it with the doctor rather than walking in and saying, this is what I want. They are supposed to be working as a team.

Had the doctors given the patients all the information at the beginning and explained why 4 cycles was the best treatment maybe neither patient would have questioned their treatment plan.

The best doctors listen to their patients.

"The best doctors listen to

"The best doctors listen to their patients."

They're so rare. Maybe if there were reimbursement codes for listening and thinking, they'd become part of clinical medical practice once more?

I just want to add that Osler made it clear that patients *do* know best, in some of the most important ways. Doctors who have forgotten that patients are those they're supposed to serve, rather than just perform standard cookbook expedient procedures on in high enough volume to make it financially rewarding and safe from censure for not being one of the sheep herd are anathema to quality health care.

Sadly, they're also the community standard.

MCF wrote: Maybe if there

MCF wrote:

Maybe if there were reimbursement codes for listening and thinking, they'd become part of clinical medical practice once more?

I'm not sure how they could actually document the listening and thinking, but I do think that they could have reimbursement codes for reading test results and communicating those results to the appropriate parties.

I'm sick of having tests

I'm sick of having tests instead of extensive history and context for diagnosing. The most important evidence in "evidence based medicine" should be the patient's report of the experience.

Frivolous assessments,

Frivolous assessments, frivolous tests, and frivolous interventions are all reimbursed by OHIP in Ontario, Canada.

The patient's chief complaint should be clearly documented in the chart and on the OHIP billing.

If the patient's concern is not addressed, and there is no plan for intervention, then the doctor should not get paid. He should get fined for negligence and improper billing, and the CPSO and the CMPA should not work together to protect him.

In working together to protect the doctor, patients can suffer futher unnecessary harm.

Ventilating is good.

Ventilating is good. Smiling

I've got enough iatrogenic

I've got enough iatrogenic injury to debilitate 10 people... and still counting.

MCF wrote: I've got enough

MCF wrote:

I've got enough iatrogenic injury to debilitate 10 people... and still counting.

Have you ventilated? Puzzled

At times. I'm still fighting

At times. I'm still fighting for my life, with facial bone infection of more than 4 decades duration spreading all through my jaw, maxillary sinus and eye orbit, from the way it feels and responds to IV antibiotics.

Are you saying that you've

Are you saying that you've had a bone infection for 40 years? Puzzled

45 and counting. In March,

45 and counting. In March, when I had a large crypt created in my jaw to remove granulation but not the whole mess, my internist said "I can't believe you've had that smoldering in there all these years and didn't die." I came close more than once. Images didn't show the severe extent of it, not even high res MRI with dye, so I kept getting blown off. I have basically no max sinus floor left, a sinus membrane with no integrity and silver oxide and granulation all through my sinus, jaw and facial bones. Result of botched silver point root canal at age 13 or so, making me increasingly ill my whole life by extending into my sinus and destroying it and heavily oxidizing black gunk all over.

"Needless to say, I was a bit

"Needless to say, I was a bit perturbed. Not so much because she would no longer be on the clinical trial -- that is every patient's right to drop off -- but because of the temerity to just tell me what they wanted rather than to discuss with me what they wanted."

This reminds me of the guy at the Jiffy Lube who got perturbed when the customer had the temerity to say he didn't want the synthetic oil.

John

RateMDsJohn wrote: "Needless

RateMDsJohn wrote:

"Needless to say, I was a bit perturbed. Not so much because she would no longer be on the clinical trial -- that is every patient's right to drop off -- but because of the temerity to just tell me what they wanted rather than to discuss with me what they wanted."

This reminds me of the guy at the Jiffy Lube who got perturbed when the customer had the temerity to say he didn't want the synthetic oil.

John

Your statement makes no sense.

The above physician presents a well thought out statement on patients who present with demands that are not in keeping with what is clinically indicated.

This doctor indicates a willingness to communicate with these patients, and also states the reasons ( with clinical evidence ) for the therapy
( chemotherapy in this case) being what it is ; how is this person comparable to the " guy at jiffy lube? "

Your comparison is highly inaccurate, and in this particular scenario Dr. Cheson was recommending against treament. In particular, he wasn't selling the proverbial "synthetic oil ", as he clearly stated this could potentially result in a higher risk of i) secondary malignancy, ii) cardiac dysfunction and iii) infertility.

I believe that patients need

I believe that patients need to be as involved in their care as possible, but I think that some might feel uncomfortable questioning their doctor, and it's possible that these lawyers came on very strong because of their discomfort.

Sometimes doctors don't have the time to get the message behind the words. The message being "I'm afraid".

Sometimes they write you off as being nuts.

If the doctor can avoid appearing perturbed, then communication can be received more clearly, rather than appearing perturbed, and making the patient feel even more uncomfortable, and potentially shutting down communication.

I'm not a lawyer, and I don't think like a lawyer. I think like a patient.

On the other hand, as a nurse, I have been perturbed by patients too. I have always tried to treat them the way that I would want to be treated, but sometimes, I'm sure - my facial expression has communicated what I should not communicate.

It's an involuntary eye roll; I don't even know that I'm doing it, but my daughter says that I do, so I'm sure that I do.

I'm lucky (and those that I care about are lucky too), that I have often had the time to fully express myself and communicate beyond the non-verbal communication.

I want the best for my patients. This doctor obviously did too. It must be very frustrating not to have the time to ensure that the patient fully understands what is best.

The issue is that despite the

The issue is that despite the rush to boil everything down to a single cookbook response for every condition, every patient is different in clinical terms. Evidence based medicine has all but ruled out the patient as a source of information.

Genetics, environment, many factors make us variable in our treatment needs and responses. And we each have different risk/benefit calculations which are our decisions to make, not a doctor's. I've learned the hard way, acquiring medical injuries nearly my whole life from very respected academic and community medical providers *never* to accept physician recommendations and act on them until I have thoroughly researched them myself. It's very rare that I don't find that there are higher risks than I've been told and unconsidered contraindications when I examine the information.
In fact, I am stunned at how ignorant physicians are about the treatments they rx and how they affect body systems beyond a few basic considerations.

Anyone who thinks that it's appropriate to expect patients to believe them outright without question or making the final decisions themselves, or who thinks that the consensus standard fits all like a once size garment is a danger to the health of any patient caught up in this system.

For the record, I served very ill folks in my professional life, and they were very mentally ill. Never failed to make sure that they were decision makers in their own care. It's amazing how collaborative and increasingly successful provider/patient relations are, with better outcomes when the provider shows that much respect for the individual and for flexible thinking and highly individualized treatment plan. It takes more time, care and thought to treat every person as an individual, and a lot of time spent listening, not talking. Which is why so many folks are unhappy with health care, the opposite is what almost always happens.

Sick people are scared, vulnerable and are entitled to be viewed as unique individuals requiring customized treatment plans, not some consenus guide tossed at them and rammed down their throats.

If you treat the patient in a less than optimal way, hey, maybe you've had a bad day at work. The patient may be suffering the results for a life time.

MCF wrote: The issue is that

MCF wrote:

The issue is that despite the rush to boil everything down to a single cookbook response for every condition, every patient is different in clinical terms. Evidence based medicine has all but ruled out the patient as a source of information.

I agree. God help you if test results come out negative. I am lucky my MRI showed an injury. I really feel for the patients like Pam’s husband and MCF whose results did not show anything, and they are left untreated and in pain.

If I had a dime for every time a doctor told me it works on most of his patients.

Doctors advertise about treating patients as individuals, but they do not. We are all treated the same IF we are lucky enough to have test results coincide with our symptoms.

Maybe we should type our symptoms into the computer and let the computer diagnose and prescribe a treatment plan.

GAGAL wrote: Quote: Maybe

GAGAL wrote:

Quote:

Maybe we should type our symptoms into the computer and let the computer diagnose and prescribe a treatment plan.

That's exactly how I diagnosed a friend's mastocytosis during the hellish months when she was in constantanaphylaxis and being tortured and misdiagnosed and failed by doctors at Sloan Kettering, NYU, Lenox Hill hospital and elsewhere.

I typed her three top symptoms into a search and came up with it, later confirmed by an expert in another state, hand picked. We're talking very prestigious facilities in NYC with doctors in high positions playing Keystone Cops in white coats, a nightmare.

The closest to correct was my niece, a medical resident at the time who suggested carcinoid, but fortunately, that was not it.

Maybe we should type our

Maybe we should type our symptoms into the computer and let the computer diagnose and prescribe a treatment plan.

I was looking for the "LIKE button" so I could give you a thumbs up! Perhaps soon we will simply go to the medical kiosk, enter our symptoms into a computer (as you say); it will kick out our diagnosis and list of prescribed meds. We will then proceed to the pharmaceutical vending machine next to the diagnostic computer, insert our meds "script(s)" and money and voila, our meds will be dispensed !!! We will waste a lot less time, suffer so much less stress and aggravation, and probably get the same or better medical care/results than we are getting now !! ;^ }

A computer doesn't think like

A computer doesn't think like a doctor might think. It doesn't judge; it is objective.

But then again maybe it would have a default to "so what", and just ignore your symptoms, for example if you are elderly, or have mental health issues, or don't matter for whatever reason the computer program objectively defined.

wishandaprayer wrote: A

wishandaprayer wrote:

A computer doesn't think like a doctor might think. It doesn't judge; it is objective.

But then again maybe it would have a default to "so what", and just ignore your symptoms, for example if you are elderly, or have mental health issues, or don't matter for whatever reason the computer program objectively defined.

I don't think a computer would do that, only human doctors. That is the advantage to the computer model health care system. Instead of an ATM we could call it an ADM.

gagal wrote: wishandaprayer

gagal wrote:
wishandaprayer wrote:

A computer doesn't think like a doctor might think. It doesn't judge; it is objective.

But then again maybe it would have a default to "so what", and just ignore your symptoms, for example if you are elderly, or have mental health issues, or don't matter for whatever reason the computer program objectively defined.

I don't think a computer would do that, only human doctors. That is the advantage to the computer model health care system. Instead of an ATM we could call it an ADM.

I'm beginning to think that this deserves a new thread. Evil

Comment viewing options

Select your preferred way to display the comments and click "Save settings" to activate your changes.