alt Hacker NewsThanks for writing this. It's really thoughtful. My Dad is being treated for Stage 3 at the moment, and after months of delay was told that he wasn't on "real" chemo, just some sort of palliative treatment. No one can get a clear read on what the doctors told him, and he's fairly confused himself... it's basically a nightmare game of telephone.
When it comes to what the OP was talking about... those of us who are conflict-averse and can't get ourselves to make dozens of unanswered phone calls, are we just shit out of luck if we get into that situation? As much as I hate it now if it involves disputing a mistaken Amazon purchase, I imagine I would just give up if I were already suffering. Is handling bureaucratic gatekeeping the only way to get care, outside a top tier cancer center, in your opinion? My dad's got some money, he's got private insurance. I want to say that if I were him I would have hired an advocate of some sort, to process all of this. I don't even know if a thing like that exists.
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In the U.S., many hospitals have some sort of patient navigator or advocate. I’m aware of at least some insurance companies even offering such services (although I can’t speak to whether they are necessarily well aligned with patient interests). See if you can request these services.
A trusted family member is always a huge help at appointments: even if it’s infeasible to go in person, ask to listen in remotely. I’ve been in those shoes too.
Be overcommunicative, be the squeaky wheel: for our part, we know the difference between even zealous advocacy (great!) from disruptive behavior (not so great!).
Sorry, the system can suck. I promise you that every oncologist has had to make those unanswered calls too, so we do know something of this end of things. But you and your loved ones don’t deserve to suffer for it, so don’t be shy.
We had something similar with my father in law who just passed from pancreatic cancer.
The doctors each saw one small part of the case, he was being passed between multiple doctors and NPs. There was no coherence. At one point he ended up on so many medications that made no sense he passed out. Only at the hospital when a doctor looked at everything together did they realize what a mess had been created and got him back on his feet.
I ended up giving all of his records to an agent and making it the coordinator. It found a bunch of problems. He was being given the wrong pain medication on the wrong schedule, the moment that was fixed he felt a lot better (unfortunately he lost so much weight on the wrong schedule it's what got him in the end). They also use voice transcription software, which led to a key error about what genetic markers he had. Fixing this changed his treatment plan!
In general, I wish we had been much more aggressive with this. Last time we had a major medical issue an NP almost killed my wife. At the time there was no AI, so we just had to recognize things were in decline and start being aggressive about getting in with the right doctors (the moment we found the right one she was diagnosed, had surgery and was cured in weeks).
He started doing better when the AI became the central coordinator and doctors/tests/etc. became their inputs. It was an excellent advocate. And while we have science backgrounds, we aren't doctors. But it could present evidence for actions in ways that the doctors appreciated (his oncologist was impressed and called the AI a member of the team).
Unfortunately his physical reserves were very drained at that point. He probably would have had another 6-12 months with his family if it wasn't for the disorganized mess of a care system that we have.
I’m so sorry you’re dealing with this. One thing I would strongly suggest is look for the patient advocacy/advocate for the organization handling your dad’s care. They helped me in one case with my wife’s care, which unfortunately was beset with incompetence and indifference from the start.
Memorial Sloan Kettering is widely considered one of the best treatment centers for gynecological cancers, and they were completely useless for us. The Dr. spent about 15 minutes talking to us and reviewing the case, gave no advice, said nothing in favor of or against the current plan and just said to reach back out after the current treatment plan played out.
This was six years ago and I still can’t think about it much without raising my blood pressure.
Anyway, patient advocate and phone calls/office visits are about the only tools you have. It can be a full time job keeping things on track.