#1 ·
I think this might have been discussed before, but since I’m brand new to the forum, I’ll just ask anyway: what are actually my rights as a patient when you find yourself stuck in a situation like this?
A few years back, I had surgery at a major hospital in Chicago due to an ectopic pregnancy. It was diagnosed early enough that they said an emergency intervention wasn't necessary.
My husband and I share the same blood type and RH factor (AB+), so he offered to donate blood specifically for my surgery, but they told us that isn't how things usually work here. They didn't even consider his offer or run any tests—they basically just brushed him off. Before the procedure, I made it crystal clear that I did not want any blood transfusions unless my life was in immediate danger. They didn't offer me any paperwork to sign or anything; they just supposedly "noted" my decision.
The surgery itself went fine, but just a few hours after I woke up,
the doctor mentioned during rounds to the nurse that I looked "a little pale" and suggested they could give me "one dose just to perk me up." Now, I am naturally pale—I'm a total blonde, light hair, light eyes, so appearances can be deceiving! But I still repeated my decision to the doctor: no blood unless it's a life-or-death emergency. I even reminded her that my husband had offered to donate if it was truly vital—and she just snapped back, "I don't make the rules, I'm not the President." I insisted again that I felt perfectly fine and didn't want the transfusion, but she went ahead and ordered the dose from the nurse anyway. The dose the nurse brought out was A+ (okay, I know, AB+ is the universal recipient, but there was absolutely NO NEED!) and the woman starts hooking me up while I'm still protesting the whole thing.
The only other thing I could have done was cause a massive scene and rip those needles right out of myself! 😠
To make matters even worse, instead of the laparoscopic surgery we had originally discussed, they performed an open surgery. And instead of repairing the fallopian tube, which was just slightly stretched (according to them), they ended up removing the whole thing! The doctor's breezy explanation was simply that "it was easier that way." 😠 😠 😠 😠 😠 To top it all off, my gynecologist later suggested it might actually be better that way, because if they had tried to repair it and messed up, I could have had another ectopic pregnancy in the same tube. "There's less chance of it happening naturally on the other side now," she said, as if I should be thanking her! Result: I can NEVER get pregnant again because that surgery left me with a ton of adhesions. I have one child from before, but I wanted more, and I'm just not satisfied with "well, at least you have one."
Now, I've been diagnosed with an ovarian cyst and they've recommended surgery (supposedly laparoscopic again). It’s not an emergency, but it needs to be handled, and I am running away from making a decision like the devil from a holy water sprinkler because I just can't imagine going through that again. It absolutely terrifies me to think that I have zero control or say over my own body. By the way, my late husband was a specialist in transfusion medicine, which is where my aversion to transfusions comes from—unless it is absolutely, critically necessary. And don't even get me started on the lack of any principle regarding respecting a patient's choice once options have been presented.
Is there even a way in this country for a person to normally express their opinion, get actual answers, advice, and a list of options from a doctor, and then decide for themselves what to do? It would be so much fairer if those jerks at the hospital had just told me, "Look, we can do laparoscopy, but that costs, say, $5,000 out of pocket, or we can do the traditional way which Medicare will cover." Fine! Then I have a choice. But this...
A few years back, I had surgery at a major hospital in Chicago due to an ectopic pregnancy. It was diagnosed early enough that they said an emergency intervention wasn't necessary.
My husband and I share the same blood type and RH factor (AB+), so he offered to donate blood specifically for my surgery, but they told us that isn't how things usually work here. They didn't even consider his offer or run any tests—they basically just brushed him off. Before the procedure, I made it crystal clear that I did not want any blood transfusions unless my life was in immediate danger. They didn't offer me any paperwork to sign or anything; they just supposedly "noted" my decision.
The surgery itself went fine, but just a few hours after I woke up,
the doctor mentioned during rounds to the nurse that I looked "a little pale" and suggested they could give me "one dose just to perk me up." Now, I am naturally pale—I'm a total blonde, light hair, light eyes, so appearances can be deceiving! But I still repeated my decision to the doctor: no blood unless it's a life-or-death emergency. I even reminded her that my husband had offered to donate if it was truly vital—and she just snapped back, "I don't make the rules, I'm not the President." I insisted again that I felt perfectly fine and didn't want the transfusion, but she went ahead and ordered the dose from the nurse anyway. The dose the nurse brought out was A+ (okay, I know, AB+ is the universal recipient, but there was absolutely NO NEED!) and the woman starts hooking me up while I'm still protesting the whole thing.
The only other thing I could have done was cause a massive scene and rip those needles right out of myself! 😠
To make matters even worse, instead of the laparoscopic surgery we had originally discussed, they performed an open surgery. And instead of repairing the fallopian tube, which was just slightly stretched (according to them), they ended up removing the whole thing! The doctor's breezy explanation was simply that "it was easier that way." 😠 😠 😠 😠 😠 To top it all off, my gynecologist later suggested it might actually be better that way, because if they had tried to repair it and messed up, I could have had another ectopic pregnancy in the same tube. "There's less chance of it happening naturally on the other side now," she said, as if I should be thanking her! Result: I can NEVER get pregnant again because that surgery left me with a ton of adhesions. I have one child from before, but I wanted more, and I'm just not satisfied with "well, at least you have one."
Now, I've been diagnosed with an ovarian cyst and they've recommended surgery (supposedly laparoscopic again). It’s not an emergency, but it needs to be handled, and I am running away from making a decision like the devil from a holy water sprinkler because I just can't imagine going through that again. It absolutely terrifies me to think that I have zero control or say over my own body. By the way, my late husband was a specialist in transfusion medicine, which is where my aversion to transfusions comes from—unless it is absolutely, critically necessary. And don't even get me started on the lack of any principle regarding respecting a patient's choice once options have been presented.
Is there even a way in this country for a person to normally express their opinion, get actual answers, advice, and a list of options from a doctor, and then decide for themselves what to do? It would be so much fairer if those jerks at the hospital had just told me, "Look, we can do laparoscopy, but that costs, say, $5,000 out of pocket, or we can do the traditional way which Medicare will cover." Fine! Then I have a choice. But this...