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The 'Demanding Patient'?

Our only "demands" are that we and our physicians have the time to properly address our health questions and that we both have access to and choice in treatments without "unnecessary" obstacles being placed in our path.
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One of the ways public health experts (oh, where would we be without these experts?) propose to slow down the growth in medical costs is to stop what they deem are unnecessary tests and procedures. They believe that -- on average -- most cancers or other chronic diseases won't kill us too quickly and can be addressed later or we merely wait for our livers to be sufficiently scarred before administering the cure for Hepatitis C.

Since we patients are not all average, these experts are playing roulette with our health, saving money in the very short term by avoiding tests and treatment but losing lives and the quality of lives in the process. Rational efforts to "bend the cost curve" down are laudable, but improvement in health care is better accomplished through investment in innovation, not random cost cutting. To try to bend the curve over the backs of chronically ill patients is simply immoral.

During a session at the American Society of Clinical Oncology annual meeting in Chicago in 2014, Dr. Ezekiel Emanuel, an Affordable Care Act architect and one of the public health expert's favorite speakers, addressed a roomful of oncologists. He told the assembled doctors that they did too many of these "unnecessary tests" and that the doctors would have to reduce the usage of such tests for the common good of health care in the United States.

Putting his money where his mouth is, Dr. Emanuel then participated in a study of Philadelphia area hospitals that was published in the Journal of the American Medical Association on February 12, 2015. It examined the issue of overuse of testing, particularly by those pesky cancer patients who it was assumed wanted every treatment under the sun when they were diagnosed with their disease and supposedly asked for medically unjustifiable regimens. To quote the first paragraph of the article:

"Surveyed physicians tend to place responsibility for high medical costs more on 'demanding patients' than themselves. However, there are few data about the frequency of demanding patients, clinical appropriateness of their demands, and clinicians' compliance with them."

The results of his intellectual curiosity and attempt to support his thesis? Per the study:

"At least in oncology, 'demanding patients' seem infrequent and may not account for a significant proportion of costs."

And as analyzed by Dr. Anthony Back of the Seattle Cancer Care Alliance in the April 2015 issue of JAMA Oncology:

"Only 8 percent of the patient-physician encounters at 3 cancer centers in Philadelphia involved a patient 'demand,' and the majority of those 'demands' were viewed by the physician as 'clinically appropriate.' Suddenly, the demanding cancer patient looks less like a budget buster and more like an urban myth."

How did this stereotype that patients are causing severe economic strains on the health care system develop?

Simple. Doctors do not listen to patients or are so encumbered with added regulations, costly and time-consuming re-certifications and the maintenance of electronic health records that they do not have the time to properly interact with patients who have questions. Every question from a frightened cancer patient cannot be answered by the frazzled doctor because of a schedule that is rapidly getting out of their control due to excessive administrative mandates. Any pushback is viewed as a personal insult and an additional waste of billable hours.

Part of the problem as described by Dr. Back:

"The demanding patient myth reflects an old paradigm of patient-clinician interactions: The paternalistic physician told the patient what to do, and the patient who did not like it had to resort to a demand to cut through the physician's cloak of authority. But that old posturing is receding in the face of a new dynamic."

As a multiple myeloma patient (6+ years post diagnosis), I can attest to the need for a lack of paternalism and true partnership between an attentive, inquisitive medical professional and an informed patient as it relates to access to medical information, proper diagnosis, treatments, questions and follow-up care.

It saved my life.

During a routine physical examination, my family physician saw something out of the ordinary and performed an extra test. Testing for cancer in a relatively healthy 54-year-old? Well, that potentially unnecessary test led to my cancer diagnosis. Without his scientific inquiry and thoroughness, any care that I received may have come too late and proved futile. Ironically, the "waste" in the system would have been from treating me for an advanced, incurable cancer which could have been prevented by doing the right test (and right treatment) at the right time.

After a few months of successful treatment with a pill-based regimen, I was advised that I may need an autologous stem cell transplant. I was not convinced and disagreed, but my oncologist listened to my concerns and helped me obtain a second opinion. Now assured after being armed with information, I decided to undergo the procedure with my original oncologist. Since then I have not registered any M spikes and I am as close to being cured as one can be from this chronic but manageable disease.

Increased use of Big Data and social media allows for more communication of timely information throughout the entire medical value chain -- especially between physician and patient. All parties will have to adapt to these changes in technology to create personal and personalized care. Anything that creates a stronger two-way relationship between patients and the physicians who treat us will break down barriers and allow cancer patients like me to have hope that we will endure.

We patients are not demanding. We, the unwilling consumers of health care, are merely becoming more educated about our conditions. Our only "demands" are that we and our physicians have the time to properly address our health questions and that we both have access to and choice in treatments without "unnecessary" obstacles being placed in our path.

In an era where insurance companies and medical administrators focus far too much on dollars and not patients, we need to develop a strong relationship with our physicians to make them our allies in order to get the right care at the right time. When these doctors are able to treat us as individuals and try to satisfy our needs and stated goals, real value in health care is created.

According to the aforementioned health economists, value equals quality over cost, but their "Weapons of Math Destruction" approach results in valuing dollars over lives.

Our lives.