Three recent headlines from a U.S. News and World Report issue devoted to the topic of health care:

Get Ready to Take Charge

Patients Making Their Voices Heard

The Kind Of Give-and-Take [between patient and doctor] That Gets Results

The harsh reality of our rapidly evolving medical care today is that the patient who adopts the  “doctor knows best” attitude of our parents’ generation is likely to become a victim of a system that has no understanding of the patient’s own values. There is no longer any choice about becoming an informed patient; doing so is a self-protective act.

Here are some examples of the ways in which our being informed about John’s medical situation and options saved us from many unnecessary headaches and heartaches. In each case, although we were able to avert disaster, we continued to find ourselves absolutely floored by the inadequacies and inefficiencies of the medical system. Ours was a top-notch HMO in so many ways, one that was characterized by outstandingly compassionate doctors and nurses; I shudder to think of the possibilities in less-than-optimal medical care models.

1. Have a Living Will/ Durable Power of Attorney for Healthcare and carry it with you during all interactions with your medical system.

Even though this was our basic policy whenever John went to the hospital, and even though he made a point of telling each doctor and nurse that I was authorized to make medical decisions for him, we were still shocked by what transpired before one of his RFA procedures. Our normal favorite anesthesiologist was not on duty  for this procedure, but he had given very detailed instructions to everyone involved. In particular, he had ordered a big dose of Ativan to be given at the time of check-in at the surgicenter to allay John’s acute phobia of needles. This had become our standard protocol. Unfortunately, the anesthesiologist at the front desk at the time did not know us, and totally balked at this order. He said this dose was enough to take down a horse and he would not authorize it– despite clear written instructions from his colleague.

We continued to plead our case with the nurses after being ushered into the inner sanctum of the surgicenter, but as  luck would have it, there were no familiar faces that day. When I explained to the head nurse that John had to have the Ativan before they could insert any IV’s or access his port, and that it took about 20 minutes for it to begin to have an effect, she refused again, saying that John had to sign a consent form for the surgery, and that he could not be “under the influence” when signing, so he would just have to wait till the paperwork was taken care of. It was obvious to us that this would be disastrous from the point of view of John’s mental health and well-being.

When John explained that he had a living will, that I was his authorized agent, and that my powers as his agent were effective immediately, the nurse actually (unbelievably!) countered that  “My lawyer told me that that is not possible.” At which point, I whipped out John’s Durable Power of Attorney For Healthcare, and pointed to  the page which specifically stated “if this box is checked, my agent’s powers to make decisions for me are effective immediately.”

Unfortunately, by this time the consent forms had arrived– John signed them himself and was finally given the anti-anxiety meds he desperately needed, but too late to do him much good. Never in our wildest imaginings could we have dreamed that we would need a Living Will in order to get an anti-anxiety pill!

This experience underscored a point that cancer patients (and indeed, anyone planning a risky surgery) might wisely consider. Most Living Wills are written so that the healthcare agent’s decision-making powers take effect only when 2 doctors have certified that the patient is incompetent to make decisions for  himself, although there is the option of making that power effective immediately. In the case of unexpected complications, John’s thinking was that he did not want to lose a single precious moment  by requiring a committee of doctors to conference and come to agreement  in a time of crisis. He was confident that I understood his wishes and would do my utmost to carry them out.

What we learned was that even though our HMO requires that every patient have a Living Will before they are admitted to the hospital, few within the system know how to access this via computer. The patient is lost if they do not have a copy in their possession. Even more alarming was the realization that the healthcare agent’s powers might be disputed, even with the Living Will in hand.

2. Know why every test has been ordered for you and what the doctor is looking for. Verify the test with the technician before they begin. Question alarming or unexpected results.

Patients often laugh about having a body part marked before surgery, and yet, after many CAT scans, it never occurred to us that we might need to verify exactly what part of John’s body was being scanned. Actually, it turned out that it was our oncologist who did not stop to ask himself this question. It was yet another scan for yet another suspected metastasis, but the order was written for  a CT of the liver– when the metastases in question were in the lungs. This is despite the fact that John had written a letter to the oncologist specifically detailing the need for a scan of both the liver and the lungs.

It was only due to the  vigilance of our trusted interventional radiologist  that the error was discovered prior to the scan; he just happened to be walking by, saw the order, knew that it was wrong, and took the time to re-write the order on the spot, thereby not only averting a wasted trip to the hospital and unnecessary radiation, but the  headache and heartache of having to do it all over again.

Our problems didn’t end here, however.  The  radiologist who read John’s scan that day not only completely failed to make any reference to the lung lesions, but commented that it appeared that one of the liver lesions had grown in size since the last scan. What about the lung lesions for which the scan was ordered? WAS there new, unexpected tumor growth in the liver? The more we looked at his “reading”, the less sense it seemed to make. We referred our questions to John’s trusted primary care doctor, who told us that even though this report was written in English, the radiology-speak was completely unintelligible to him.

Thanks to our many post-scan conferences with John’s interventional radiologist and his thorough explanations of the RFA process and its aftermath,we  soon came to our own explanation of the alleged “growth” of the liver lesion. From the description of its location, we deduced that this was a tumor that had been previously fried with RFA. From our previous educational post-scan conferences, we knew that tumors that had been treated with RFA appeared larger than their original size, simply because a skilled radiologist takes care to extend the kill margins slightly beyond the  outer edges of the tumor. Could it possibly be that the radiologist who read the scan, the head of the radiology department, was unaware of this? Unbelievably, the answer was yes. There WERE  four new tiny tumors in the lungs. The “larger” liver tumor was the result of RFA, not metastasis. As our interventional radiologist succinctly stated,

The doctor who read this wasn’t paying attention. The report will have to be re-written.”

In reflecting on what went wrong, and how we might prevent  similar mistakes in the future, we realized that the only doctor who was capable of interpreting John’s CAT scans at this point was the one who had supervised all of his RFA’s. John’s liver was now so dotted with holes and necrotic tissue from previous procedures that interpreting his scans had become more of an art than a science. The solution: ditch the hospital protocol and request a new protocol that would be unique to John’s case. No more scan readings by the doctor on duty– all future scan orders would be written with instructions that the scan be routed directly to our trusted interventional radiologist for reading.

Our take-away from these two experiences was that the level of vigilance required for a successful medical outcome was far greater than even our three years of  constant interactions with the system could have prepared us for. The process of being an informed, proactive patient is a never-ending education.


About surfingon

I live in Hawaii. I surf in the winter and swim in the summer. I have been a hospice volunteer with a contemplative-care oriented hospice for 25 years have been part of their team that trains new volunteers for the last 9 years. I have walked the colon cancer path with my beloved husband these past 5 years. He died very peacefully in April 2009. I now seek to share what we learned, to shed light on the many dark corners of this often mystifying, heartbreaking and heart-opening journey.
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