In this case, there's nothing left to do.
All the consent forms have been signed, whether it's "informed" or not remains debatable; all the well-meaning friends have sat in on meetings, although they couldn't tell you IP from IV from subcutaneous; all the available lines of communication have been tried, to no avail.
It is a helpless, frustrating feeling, this place. All of my psychology training has left me with not knowing what to do or what to say, how to react next week....because it is different when it is not a patient/client. It is different when you have a personal, familial stake in things. When you watch someone offer themselves up for sacrifice in the hopes of gaining time, under the false impression that studies have shown benefit, because they've been misinformed by the provider they trust....and chosen not to hear the information you've provided.....it is hard. It hurts.
When I watch this unfold, it reminds me of why I feel (still) so strongly about being an oncologist. So things like this don't have to happen to another person and their family. Because in medicine, decisions don't just affect the patient. You don't just work with the patient in front of you; you work with their family, whether you ever meet them or not. And this....this.....this just blows my mind. On a professional, medical, and human level.
2 comments:
Whenever you witness a physician delivering less-than-complete information to a patient, you should record the time and date, the persons who can substantiate what you witnessed, and place the document in a safe place.
A copy should be ANONYMOUSLY sent to the Risk Management Officer of the hospital. If no inquiry results from these actions, then you can at least rest easy knowing that you have done whatever you can to further the case of the patient.
As for people NOT listening to you, but rather listening to what the oncologist says, that is sheer wishful thinking and most probably a serious ego problem to boot. Do you really think you know more about the case than the physician who is in charge of the patient's care?!?!
Hi Anonymous,
thank you for the information; that is exactly what I have been looking for, what to do in this situation. As for the ego problem, no, I don't think it is. When I say they are not listening, I am talking about seeking a second opinon, especially at a Comprehensive Cancer Center. I am talking about sending records to other gyn-oncologists to get other recommendations. Hell, I am talking about seeking someone who will follow NCCN guidelines for ovarian cancer (which have not been followed here, with no explanation as to why). No, I may not be an MD, but I am highly familiar with NCCN guidelines, best practices, and have spoken with gyn-oncologists at MD Anderson and other gynecologists, and I have yet to find someone who concurrs with what has been done in my aunt's case. So yes, this worries me. Leaving the ovaries IN with ovarian cancer, suboptimal debulking, not telling my aunt she was on a chemo regimen that was NOT standard, without giving her the opportunity to choose between standard and not standard regimens...yes, that is an ethical problem to me, not one of ego. When a doctor does not have time to explain to the family why things were done, and does not tell the patient things she should know about her care and choices that should be available to her, yes, that is a problem, and not an ego problem of mine.
thank you for reading my blog, though, and I'd love to be able to address you properly next time. :)
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