Minimize patient waiting after a potential cancer diagnosis

I received a very troubling phone call from a close friend recently. He underwent a study, at the age of 40, and the physician came out of the procedure and said, “you have a large tumor, do you want me to call a surgeon for you.”

The purpose of this post is not to comment on the physician’s behavior or delivery techniques, but to define this very precarious and anxiety producing period my good friend now finds himself in. It is not uncommon for physicians to find a tumor or something wrong on an X-ray, MRI or colonoscopy, for instance.

While the information can be delivered to the patient in various fashions, the interaction will place the patient and his family into the “Gray Zone,” which is an exceptionally uncomfortable place to be.

After the initial 10-15 minutes, where the patient and their loved ones are not hearing a word you say, the inevitable, predictable and heart wrenching questions come forth as the patient regains some form of composure and ability to communicate.

* Is it cancer? “Maybe”
* Is it fatal? “We don’t know yet”
* Do I need surgery? “Maybe”
* Will I die? “We don’t know yet”

The patient has now entered the Gray Zone by the mere fact that their physician does not yet possess enough information to present a clear concise treatment plan, or prognosis. Very frequently, CT scans, MRI’s, blood tests, pathology specimens, surgical specimens and further consultations will be necessary in order to appropriately and intelligently address the aforementioned questions. Some pathology specimens, especially if special staining or a second opinion is necessary can take two weeks to come back.

Some patients will need to wait for approval from their insurance company to proceed with the tests necessary to answer the questions — which until answered — force the patient to remain in the Gray Zone. They do not have enough information to begin an actionable internet search. They do not have enough information to determine if they need to meet their attorney or whether they will be golfing in Costa Rica in two weeks.

The Gray Zone is an inevitable period of time that all patients who receive bad news will find themselves. I can not express how painful a process that can be (yes, I have experienced it). Physicians can help shorten the time frame, and try to answer questions to the best of their abilities with the facts they have at hand — and hopefully they have their staff working as expeditiously as possible to minimize the length of time the Gray Zone must last.

While the information the patient ultimately receives may not be good, at least they have an answer, and they now have been empowered and can head online (hopefully with the assistance of their physician and healthcare team).   They can obtain as much information as possible, digest and share it with a multitude of e-patients going through the same problem and ultimately arrive at a decision to move forward with “X” option(s).  Now they are no longer in the Gray Zone.  They are moving forward, hopefully to a cure and full and happy life.

Within minutes of the phone call I received today, I had spoken to his initial physician, his eventual surgeon, the anesthesiologist, CT scan dept, and hospital CEO, to name a few.  He is still in the Gray Zone, but the time frame has been shortened dramatically, and answers will be forthcoming tomorrow. And no, I did not do this only because he is a close friend.

Physicians have an obligation to understand how painful this position is to be in and to try and engage the patient and their staff to minimize the time spent wondering, worrying and sitting around simply scared due to the lack of knowledge and some degree of certainty.

One day the physician may look in the mirror and find a patient.  We must all work together to minimize the pain, suffering and lack of information.  After all, we are all patients.

Howard Luks is an orthopedic surgeon who blogs at The Orthopedic Posterous.

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