My 61-year-old cousin had a persistent smudge on the tip of his nose. His dermatologist looked at the lesion under his microscope and saw nothing worrisome.
“Freeze it off,” my cousin said, thinking of the various lesions he has had removed this way.
Three months later the lesion reappeared and my cousin returned to his dermatologist, whose biopsy indicated melanoma. He sent him to one of the best Mohs surgeons in the U.S.
My cousin’s wife called me. I thought “Abandon hope all ye who enter here—the U.S. healthcare (non)system” and flew to join them.
The Mohs surgeon’s biopsy was sent to a medical school pathology department. The signing physician, a top dermatopathologist and medical school faculty member, shared the slides with others for their diagnoses before presenting the final report, ending with “Thank you for the opportunity to review this challenging and extraordinary case.”
This type of melanoma is typically mistaken for a benign lesion at the first visit. My cousin’s has spread very quickly along his facial nerve and so one might think his physicians would be in a hurry to grade the tumor and get on with treatment—radiation? Nerve removal? Further excision?
This is complicated.
Over a month after the pathology report was sent to the referring physician, I accompanied my cousin and his wife for a PET scan to look for metastases, or “mets”. The PET scan shows no metastases.
My cousins are sophisticated healthcare consumers and excellent online researchers. Thank goodness for Tim Berners-Lee who gave us the Internet, decreasing the information gap between physicians and patients. My cousins, his physicians, and I have access to the same scientific information. Fortunately, the Mohs surgeon is particularly interested in my cousin’s care and spends off-hours researching treatment. Being an “extraordinary case” offers benefits as well as curses.
Even with the Internet, there is still considerable asymmetry between provider and patient, given the tremendous anxiety involved. Doctors determine the work-up pace, order the diagnostic tests, and get the results first.
Several years ago, I was getting ready to leave my office late on a Friday evening to join a friend for dinner. Another friend called my inside line. His wife was in the midst of a medical workup for a potential seizure disorder. A CAT scan had been done that day. The ordering neurologist was out of town. The covering physician who read the report said they had a policy of not conveying test results to other physicians’ patients. My friend would have to wait until the following Tuesday.
I called the covering physician. After I assured her I would take full responsibility for anything that happened, she told me the diagnosis was normal. I told my friend. I have the union card, a doctorate of medicine, and know the secret handshake.
There is a serious disconnect between the differing perceptions provider and patient have of the passage of time. Take your ailing car to a mechanic who performs the diagnosis and says, “You have to wait four days before I will let you know what needs to be fixed.”
Call a plumber who comes to your house, looks at the overflowing toilet and says, “I’ll let you know what’s wrong in four days.”
Four days driving a car with an unknown problem, four days of a house filling up with sewage, or four days waiting to see if you have a brain tumor.
I bet you would change providers.
Each additional referral can return you to the beginning. If you have copies of your test results and various reports, you have a head start—if your new provider reads the material. There are no financial incentives for spending a lot of time reviewing a patient’s history.
My cousin’s melanoma treatment is complicated by the lack of a precise diagnosis for the type of melanoma. Treatment depends upon the diagnosis. My cousin, his wife, and I are learning together about melanomas—desmoplastic, neurotropic, spindle cell, and others. Whatever he has is rare and there are few medical articles. I asked one physician what evidence backed up the recommendation she gave.
“There isn’t much evidence. It’s empirical.”
I understand. You mean Imperial, translated to “I’m-the-doctor-so-don’t-ask.” I have been in health policy too long to believe in “empirical”.
One decision is radiation therapy or not? Another is facial nerve excision or not? Will surgical removal seed melanoma cells in unaffected tissue during excision? Is the melanoma headed to my cousin’s brain? How fast is the melanoma spreading along the nerve? Has the melanoma replaced nerve bundles or infiltrated the dermis? Probably both, according to the dermatopathologist.
My cousins are getting all records so I can summarize his care and ask for advice from impartial, clinically superb doctors. This is a labor of love and I am driven by my personal interest. Fortunately, I know excellent physicians. What do people do without this help?
Where is the national electronic health record? Where are incentives for physicians who read patients’ histories? How might we use a national health record to extract de-identified data to create treatment evidence?
Both my cousin’s care and changing the healthcare system are works in progress.