A medical story for the forum:

[Ms. Toad]

40. I was 31 when I first refused medical intervention.

It has not been the only time when I have either refused medical intervention - or demanded it.

I was hospitalized and on heparin (a blood thinner). The doctors were having trouble regulating it - and my PT/INR (a measure of how long it takes for blood to clot) was frequently in the range that posed a high risk for a spontaneous bleed. The doctors repeatedly shut off the IV heparin drip for the period of time they calculated would drop the levels into the therapeutic range. They repeatedly restarted the IV heparin drip without testing the PT/INR - then tested it after an hour. It was always in the range that posed a high risk for a spontaneous bleed, so they disconnected me again. After the second round, I suggested that it had never dropped into the therapeutic range, so by hooking the IV up without testing my PT/INR they were making the problem worse. They ridiculed my suggestion and refused to test. After the third round, I refused to allow them to restart the IV until they could prove it was safe. They reluctantly tested - and - of course - I was right. Punch line to that story is that my primary care doc (back in that era they actually made rounds) yelled at me the next day for being mean to the hospital docs.

Since then, I have fired at least two doctors and one entire team, refused care (repeatedly) from my primary care doc - again being proven confirmatory testing that his concerns were vastly exaggerated, refused care from specialists at least twice, and demanded treatment/tests (sometimes very specific) at least a half dozen times.

I am not an easy patient for any doctor who lacks confidence in themselves - or sees patients as incapable of medical reasoning.

I also have a number of really fantastic doctors whose care I trust implictly (four I can count without any thought). They welcome an involved patient.

But I never go into a non-emergent medical situation without doing my own literature review, so that I am prepared for whatever questions or comments the doctor might make, so that we can have a meaningful conversation on the spot without the need for me to research after the fact then wrestle with whether any concerns that research raises are serious enough to make another appointment. When a doctor occasionally comes up with something I don't expect - it is often a good sign that s/he is one of those really fantastic doctors I value so much - it is inevitably either newer research, or a nuance that was not apparent from publicly available literature.

That approach has saved my life and my daughter's life.

In contrast - the "doctor is god" mentality cost my father-in-law his life, and has almost certainly shortened my brother-in-law's. My father-in-law actually went to a doctor because of blood in his urine (uncommon in a family where males just tough it out). The doctor assured him it was nothing, so he trusted him and didn't return until a year or two later when his urine was always bright red blood. He was diagnosed with stage IV bladder cancer, and died a few months later. My brother-in-law has an aggressive rare type of melanoma. He was on Keytruda after a recurrence, and went to the ER for an unrelated matter. "They administered steroids - which interfered with the Keytruda, and the tumor did not shrink nearly as much as early indications had suggested it would. Even though he had been warned about taking steroids, he had not informed the ER team he was on Keytruda, because "they have all of my records, so they know," and he assumed (without asking) that they had evaluated the situation and determined the risk was warranted.

Be your own advocate. If you find a doctor you can trust implicitly - keep them at all costs. If your doctor treats your concerns as annoying (or threatening to their ego) - drop them as fast as you can.