Patients Need To Be Proactive About Getting Test Results From Their Doctors
Posted Jun 26 2009 7:08pm
She wasn't exactly waiting by the phone, but the call was never far from her mind. Linda was anxious and hopeful. She wanted to learn the results of her recent medical tests asap. She wanted to be ok. Most of all she wanted to just move on and get back to living her life with her husband and 12 year old son. She was diagnosed with endometrial cancer years earlier when she and her family lived in a different state. The treatment had been difficult and exhausting, but now she had been cancer free for two years. Linda was in a different place, felt terrific and was optimistic about her future. She was only 44 years old.
Shortly after moving to the Chicagoland area where her husband's job had led the family, Linda sought out a well regarded cancer specialist to screen her, to check for any return of the disease. When she saw her new doctor he preformed a phyical exam, did a pap smear, ordered blood work and CT scans of Linda's chest, abdomen and pelvis to see if the cancer showed up in other parts of her body. The blood work and CT scans were done in short order. All that remained was for Linda to receive the results, for the telephone to ring and a voice on the other end to give her the news.
There was cancer in Linda's lungs. Microscopic endometrial cancer cells had traveled through her body to her lungs and had multiplied and grown. Her new doctor knew that, but that is not what Linda was told when the phone finally rang. Instead, the doctor's nurse on the end of the line told her that everything was fine, that the tests were negative, that she was cancer free. Linda's relief would not last. Nearly a year later she developed a troublesome cough. At first she associated it with her history of allergies and saw her family physician for treatment. Soon though the cough became severe enough that she felt compelled to go the emergency room at a nearly hospital. There a chest x-ray showed "multiple lesions consistent with metastatic cancer ." The lesions were more numerous and much larger than they had been a year earlier. Linda was quickly referred to a new cancer specialist who confirmed that she had cancer in her lungs which had spread there from her endometrium . He started her on the chemotherapy treatment that she should have had a year earlier. After a few months the number and size of the cancerous nodules had been reduced signficicantly and her disease was declared stable. That stability did not last, however, and 14 months later Linda died.
After Linda's passing, her husband called me. We hired experts to look at her medical records. They concluded that Linda's cancer doctor failed her by not expeditiously making her aware of the findings from her chest CT scan. His failure to do so, they felt, delayed the start of chemotherapy and very substantially reduced the effectiveness of her treatment. The doctor, and his nurse, cost her years of time with her husband and son.
During the litigation which followed, the defendants could never adequately explain why the true test results were not communicated to Linda. What I found upon investigating was shocking indifference regarding doctor-patient commuincation and arrogance. When I took the deposition of the defendant doctor he told me that he did not think it was particularly important that Linda be informed that her cancer had spread. Apparently, in his mind she was a goner regardless. Here is a portion of his deposition testimony
Q. What does it mean for cancer to metastasize?
A. It means a spread of cancer from the organ of origin to a distant site in the body.
Q. And when we are speaking of metastatic disease, we are making reference to this spread, this process, correct?
Q. Finding of cancer spread or metastasis is something a patient should be informed of promptly.Would you agree with that?
A. Depending on the clinical circumstances.
Q. But as a general principle, you would agree with that?
A. I don't -- there are no, you know, general principles. Every case is different.
Q. So there are -- can you give me an example of a circumstance in which it would not be important to communicate promptly to a patient that their cancer had spread or metastasized?
A. If you take, for example, a patient that -- if we can follow the example of [Linda], a patient who metastasized to the lung in July of 1999 and in July of 2001, there is an equivocal X-ray and I plan to follow that with serial X-rays and the metastatic pattern is such that the patient is categorically incurable, I don't have to report that instantly to the patient.
Q. I didn't say instantly. We are talking about promptly.
A. That is what I mean.
The doctor's lack of caring, the nurse's incompetance and the medical facility's lack of procedures for communicating test results to patients took something from Linda and her family. She probably wasn't going to live to a ripe old age, but she was entitled to more time with her family.
It was reported earlier this week that, according to a recent study in the Archives of Internal Medicine , doctors failed to inform patients of abnormal cancer screenings and other test results 1 out of 14 times. This is truly disturbing. Modern medical break-through treatments for cancer and other diseases mean nothing if communication between physicians and their patients breaks down. The medical community obviously has to fix this situation. Patients too need to take the bull by the horns. Many people - especially those awaiting potentially bad news - wishfully assume that no news is good news. When waiting for medical test results, however, you must be aggresively pro-active with your doctor's office. If you do not hear, call. If you are forced to leave a message, call again, and again. Linda was in an especially tough position because she was notified of her test results; only they were not accurately reported to her. Make sure you speak with your doctor, not simply a member of his or her staff. Ask questions too. Doing so should provide you with greater detail about your condition and will serve to test the credibility of the results being reported to you. Also, make sure you schedule a follow up appointment to return to your physician. Whatever the medical concern was, it's a good idea to follow up in person before too long.
Here is a link to some additional advice on this topic