Turbulence in health care...requires serious questions

By Gina Kolata, New York Times, December 18, 2010
(Ms Kolata's story focuses on a patient diagnosed with Alzheimer's and her receipt of that diagnosis.)
The new diagnostic tests are leading to a moral dilemma. Since there is no treatment for Alzheimer’s, is it a good thing to tell people, years earlier, that they have this progressive degenerative brain disease or have a good chance of getting it?

“I am grappling with that issue,” Dr. Rafii said. “I give them the diagnosis — we are getting pretty good at diagnosis now. But it’s challenging because what do we do then?”
It is a quandary that is emblematic of major changes in the practice of medicine, affecting not just Alzheimer’s patients. Modern medicine has produced new diagnostic tools, from scanners to genetic tests, that can find diseases or predict disease risk decades before people would notice any symptoms.
At the same time, many of those diseases have no effective treatments. Does it help to know you are likely to get a disease if there is nothing you can do?

• Diagnoses without cures....
• prescriptions with far more warning signs than any medical doctor's intervention would warrant...
• medical orders that are only partially followed by conscientious practitioners...
• new infectious (and potentially fatal) diseases that result from over-prescribing anti-biotics and destroying the body's capacity to fend for itself...
• the PSA test and potential interventions that could leave the patient struggling in more ways than before both diagnosis and treatment...
• phony clinical trials conducted by researchers funded by pharmaceutical firms seeking to market their products, approved by bureaucrats seeking the approval of their political masters

These are just some of the many obvious and newly reported hiccups in the practice of health care, apparently with more to come, as new knowledge outstrips our capacity to design and deliver effective treatments. And then there is the report from McMaster University that points to the potential to generate new blood cells from sample skin cells, in order to provide "compatible" blood for all patients....simply revolutionary!
According to some reports, we are going to go through a period of some turbulence, as the various and different rates of discovery continue, with the accompanying treatments coming along much later, resulting in serious ethical questions about the patient's right to know, desire to know, need to know and the medical profession's responsibilities in those cases.
For one, I have made a conscious decision never to have a PSA test, simply because I do not want to know the results. If I were to develop prostate cancer, and become conscious of that fact, I would then have to make another decision about whether to have it treated. And of course, the medical profession would seek to intervene. However, at this time, the treatments, including surgery, could result in more damage and complications than my not knowing and living with the unknown and undeclared "sentence" or diagnosis would generate.
I have discussed this position with one family practitioner, who was virtually incredulous at my response. He simply could not understand, having practiced medicine effectively for nearly forty years.
Nevertheless, I learned much from my mother about withholding complete trust, and thereby complete access to my body by the medical fraternity. She graduated from St. Michael's Hospital School of Nursing in Toronto, in 1931, and had occasion to say to a doctor, "You are not going to operate on my body" for her own valid, if unique, reasons.
There is a phrase in the legal profession that runs something like, "He who has himself for a lawyer has a fool for a client." A similar expression could apply to the field of one's personal health regimen. However, a healthy skepticism is a necessary part of any visit to a doctor. There is a culture to the practice of medicine which includes a commonly accepted maxim that most interventions are better than no intervention. Not always so.
When my father, at ninety one, was diagnosed with three cancerous tumours, the medical team advised "no" surgical interventions, given his age. The family concurred.
It seems appropriate, especially during this turbulent time in the field, to ask as many questions as come to mind, and even to find an advocate to attend our visits to the doctor, to absorb the information prior to making important decisions on the information we are given.