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All of my focus on this website has been to empower patients to become more informed and complementary partners in their healthcare delivery process.

Over time I have become increasingly aware of deficiencies in the reporting of medical results to patients that reflect a 'sickness' of the reporting process itself.

Obtaining the best diagnostic tests and medical opinions in the world will be of little use to you if the results are not communicated to you completely, honestly, and in terms you can understand.

Unfortunately, this failure, or deficiency, of appropriate reporting can result in your being the victim of a missed, or delayed, diagnosis, such as cancer, and, therefore,  being denied the opportunity to receive prompt and appropriate care.

To learn more, read on.

The MEDICAL-RESULTS REPORTING DEFICIENCY SYNDROME

An Unrecognized Disorder of the Healthcare Delivery Process

WHAT IF DYING FROM CANCER ISN'T ALWAYS NECESSARY?

“The truth? You can’t handle the truth”

So said Jack Nicholson in A Few Good Men, 1992.

Well, patients can handle their medical truths, but, there is evidence that doctors can't, or won't provide them.

DIAGNOSTIC ERROR

The March 11, 2009 issue of the Journal of the American Medical Association published an article titled: Diagnostic Errors-The Next Frontier for Patient Safety (JAMA, March 11, 2009-Vol 301, No. 10, 1060-1062).

According to the article “Diagnostic error can be defined as a diagnosis that is missed, wrong, or delayed, as detected by some subsequent definitive test or finding.”

Not all diagnostic error results in harm. Diagnostic error that results in harm can be defined as harm that results from the delay or failure to treat a condition actually present when the diagnosis given to the patient was wrong or unknown or from treatment provided for a condition not actually present.

EXTENT OF DIAGNOSTIC ERROR

According to the article, about one of every twenty causes of death (5%) determined at autopsy differs from the cause of death written by the primary care provider on the death certificate and represents a lethal diagnostic error for which a correct diagnosis coupled with treatment could have averted the death.

Each year in the U.S., an estimated 40,000, to 80,000, hospital deaths result from misdiagnosis.

Why so many? Bad doctors, or could it be poorly informed patients?

MEDICAL INFORMATION and MEDICAL RESULTS

The culture of medical practice has traditionally been that of a secret society. Keeping the skills and knowledge of medicine within the society of physicians, specifically, to the sons of physicians, dates back to Hippocrates and is written into the Hippocratic Oath.

Unfortunately, that tradition has mutated into trends that keep patient’s medical records, reports, and medical truths away from patients, and today represents a malignant feature of healthcare delivery.

The reader might reply indeed the opposite is true given the current efforts towards providing patients access to their electronic medical records. However noble these efforts are, they are few in number and often offer limited, or no, access to the detailed reports of radiologists, pathologists, and the letters of consultation of specialists. Even if they did these are written by physicians for physicians and offer little in the way of interpretation or personalization. Most important is that these records are often inadequate themselves, or complex, at times with important content hidden in fine-print.

The usual standard of medical practice, in this regard, I call ‘don’t ask-don’t tell’ meaning that ‘if patients don’t ask the right question, doctors generally feel under no obligation to tell the right answer’. Tell not-Sue not.

The prime sign of this approach is the reluctance of doctors to release to patients copies of the originals of documents and to invest the time to share the knowledge contained in them.

It is a well known fact that physically obtaining copies of one’s medical records or medical reports is made arduous, if not, impossible, by the medical establishment. And, the notion of being obligated to explain those records or reports in detail to the patient in patient-understandable terms just doesn’t happen in the normal practice of medicine. As a result, complex and revealing medical information contained in medical results are rarely reported to patients in terms they can understand.

It is not uncommon for detailed and complex results to be summed up to a patient by the words ‘everything is normal’ spoken over the phone by a doctor’s secretary.

However, these reports often contain life-saving or life-threatening information created by the most sophisticated and complex means by the most advanced machines and expert physicians, yet often get trivialized to a simple phone call or card in the mail.

The results of tests and the opinions of specialists form the content of reports that are, I believe, primarily for the immediate benefit, knowledge, and ownership, of the patient, and secondarily, the ordering physician. I doubt many doctors would agree as current medical practice doesn’t practice this philosophy.

Collectively, the various ways in which medical results reporting fails the patient I call The MEDICAL-RESULTS REPORTING DEFICIENCY SYNDROME.

SOME EXAMPLES

BREAST CANCER and MAMMOGRAPHY-WHAT DOES ‘APPEAR TO BE NORMAL’ MEAN?

Breast cancer is the most frequently occurring cancer in women and the second leading cause of death, yet the recommended screening procedure, digital mammography, will miss, at least, 4% to 8% of cancers present. That equates to missing 1 in every 12 to 25 cancers present at the time of the test. Most women, are never told this although the fact appears on the report their doctors receive.

Dense breasts can be a significant risk factor for breast cancer, and it is well known that moderately, or significantly, dense breasts, a commonly reported finding on digital mammography, can obscure tumors that are present. One would think, therefore, that this finding would be routinely reported directly to the patient in order for the patient to consult her doctor and consider other imaging such as MRI.

Yet one major mammography center I know of reports the finding of dense breasts, and the associated limitations of the mammogram, ONLY to the ordering physician, and not to the patient. This is done at the same time the center sends the patient a card stating simply, in carefully constructed words, that her results “appear to be normal”!

Does not each woman have the right to know if her mammogram was sufficient to detect breast cancer and if not that there are other tests available that could find it, or, should she be left ignorant of her medical truths only to become an unfortunate statistic of inadequate reporting and a later victim of cancer?

THE ABNORMAL 'NORMAL' PATHOLOGY REPORT

A patient’s medical truths are often hidden in ‘fine print’.

Some pathology reports check -boxes marked 'Normal' or 'Abnormal' and use fine-print to make comments that can contradict the box checked. This kind of reporting is, in part, at the root of missed and delayed diagnoses.

Pathology results are transmitted from the pathologist to the ordering physician, indirectly by fax or mail, rarely personally. It is unusual for a pathologist to call a physician directly to discuss findings. I have never heard of a pathologist every discussing result directly with the patient.

A busy primary care doctor will rarely read the entirety of a pathologist’s report, or any report for that matter.

Rather doctors tend to ‘scan’ a report, looking for a ‘flag’ like ‘H’(high) or ‘L’(low), or look for a ‘checked-box’ or a line labeled ‘Impression’ or ‘Conclusion’. In many cases a quick look finds a ‘Normal’ result and the fine-print with comments stating otherwise is overlooked.

In one report I have, the pathologist reporting on a FISH TEST (for cancer), having checked the 'Normal' box, stated in the smallest font the following:

“3 positive (meaning ‘cancerous’) cells were noted which is below our cutoff for a positive result (greater than or equal to 4 positive cells). Suggest repeat if clinically indicated”.

This patient was one cell short of a diagnosis of cancer and yet assigned to the ‘Normal’ category! This statistical and impersonal method of ‘reporting’ critical medical truths and the fact that this tiny message was the pathologist’ main communication of the likelihood of cancer to the doctor is representative of the inadequacy of current methods of reporting medical results to patients and an example of the MEDICAL-RESULTS REPORTING DEFICIENCY SYNDROME.

CAN A DOCTOR'S EGO INFLUENCE REPORTING|?

In another example the pathology report from a patient who went to her GYN for a routine pelvic exam and Pap smear revealed, otherwise, unspoken truths. It was the patient’s intent, in part, of course, to learn if she had any evidence of pelvic cancer. Her expectation was, that the Pap smear would inform her of the presence of cervical cancer.

The GYN examined her and performed a Pap smear and sent the specimen to the pathologist. Shortly thereafter, the patient was called by the doctor’s nurse and told the doctor said:

“the Pap smear was ‘inconclusive’, but, based on the examination you can wait another year for a repeat”.

A close look at the pathologist’s report, which of course the patient never saw until she was advised to obtain a copy, revealed the following:

DIAGNOSIS: UNSATISFACTORY FOR EVALUATION

1. Specimen adequacy: “…unsatisfactory for evaluation.

2. Reason for test: “Screening for malignant neoplasm of the cervix”

Instead of being told, honestly, that the Pap smear was inadequate to determine cervical cancer, and why, and that the test needed to be repeated, she was deceptively told the test was ‘inconclusive’, which it was not, It was unsatisfactory for evaluation. The purpose of the test: “Screening for malignant neoplasm of the cervix” went unanswered.

Did the primary care doctor violate a basic trust between patient and doctor. The patient had the rightful expectation that the Pap smear would be done correctly and the results would indicate whether she had evidence of cervical cancer. Was the doctor too embarassed to report the facts?

Most importantly, this example gives additional credence to the notion that the current method of reporting of medical results is itself sick and a contributor to the delayed and missed diagnosis of cancer. Did the pathologist have an obligation to notify the patient?

HOW DOCTORS WORK

Here is how doctor offices typically work. Reports come in by mail, fax, or office-based printer. An assistant attaches the report to the front cover of the patient’s chart, usually by paper clip. It should be noted that not infrequently the report is attached to the wrong chart.

Through the course of a day there may be twenty to thirty, or more, such charts piled-up on the doctor’s desk. There can be two or three, or more piles of charts often reaching two-feet in height.

These charts, with the days lab results, letters of consultation from specialists, pathology and radiology reports attached, are usually addressed by the doctor in between seeing patients or at the end of the day. Allowing them to accumulate is unacceptable to any doctor as they continue to appear every day and the pile only gets higher.

Therefore, doctors, typically, do not, cannot, read each report, there is simply no time to do so. Rather they hurriedly search for the ‘Conclusion’ or ‘Impression’ line, or an ‘out of range ‘flag’ such as the trusty ‘H’ or ‘L’. Very often critical information is missed. This is not necessarily the doctor’s fault. It is however, symptomatic of a flawed system of reporting medical results that incredibly bypasses the patient.

MY FIX

There is no healthcare ‘system’ to fix the problem, indeed the problem is, in part, a result of the absence of an organized system of healthcare delivery. Healthcare is a scattered, unconnected, and unorganized collection of individual practitioners, or groups, with little to no oversight.

These practitioners are loosely connected to, and somewhat governed by, professional organizations, medical societies, hospital affiliations, and insurers.

Any ‘fix’ to the impaired reporting process will have to be voluntary and achieved through a process of publicizing the dangers of the current system and the benefits gained by changing it.

The culture of medicine is deeply ingrained and practitioners are hardened to a practice style that is wedged deeply between the wish to provide quality and compassionate care, which I believe most doctors want to do, inadequate reimbursement, and the ever lurking threat of malpractice suits.

Indeed, one of the biggest obstacles to be faced in creating an environment of responsible reporting of medical results to patients will be the fear of increased liability incurred by giving patients more information then is the current practice.

The other obstacle to be faced will be the acceptance of the concept presented here that the originator of medical results is also responsible in some degree for reporting, in some fashion, results to the patient.

After much thought, and due diligence, I, hereby, propose an:

ALLIANCE for RESPONSIBLE REPORTING of MEDICAL RESULTS TO PATIENTS

whose acronym is ARRMED as in ‘ARRMED to OBTAIN THE BEST HEALTHCARE’.

I see this as a voluntary ‘alliance’ of individual practitioners, including primary care doctors, radiologists and pathologists, persuaded by their inherent desire to help their patients and encouraged by their professional organizations to voluntary agree to adopt ARRMED’s principles of responsible reporting of medical results to patients.

I see the ‘alliance’ extending to all good institutions, hospitals, and major centers willing to support and participate in ARRMED’s mission.

I see the ‘alliance’ also being grounded on educating patients about the urgent need for this change and to take shared responsibility to make it work.

A proposed set of Principles and Mission Statement:

ALLIANCE for RESPONSIBLE REPORTING of MEDICAL RESULTS TO PATIENTS^©

ARRMED to OBTAIN THE BEST HEALTHCARE^©

The Ten Principles of ARRMED are:

1. Patients are the primary beneficiaries of all medical results created for their benefit.
2. Patients have the right to receive all medical results as soon as they are created.
3. Patients have the right to receive medical results in terms they can understand.
4. Patients have the right to receive the same reports sent to their physicians.
5. Patients have the right to receive results directly from the originator of the results.
6. Patients have the right to receive their results directly from their primary care doctor.
7. Patients have the right to know if test was sufficient to answer the reason for the test.
8. Patients are partners with their providers and share responsibility obtaining results.
9. Patients must learn to become owners of their health.
10. Patients must learn to become owners of their health information.

The Mission of ARRMED is to build a community of healthcare providers who believe in these Principles and are willing to commit to their patients that they will cooperate in achieving the goal of responsible reporting of medical results. It is also the Mission of ARRMED to educate patients about the need to take responsibility for their health and healthcare, and to teach them how to become empowered patients and complementary partners in their healthcare delivery process.

CONCLUSION

The MEDICAL-RESULTS REPORTING DEFICIENCY SYNDROME is real and its effects, if they could be measured in terms of missed, or delayed, diagnosis could be significant.

It seems to me that a public awareness campaign is required. The effort would certainly have more credence were it led by a public figure known for compassion, devotion to good causes, the ability, passion, and interest to persuade the good men and women of healthcare to change and the wish to answer the question posed in the title of this article with the answer:

No, dying from cancer isn’t always necessary?

Louis Siegel, M.D.

April 28, 2009