Around work I'm not really known for mincing words. Most, not all, but most, of my patients grasp the message better if I'm just direct with them. But with some patients I just have to skip calling a spade a spade and start out by calling it a damn shovel. Sadly, that's because lots of the time I'm telling them something they don't want to hear.
So from the time of her diagnosis I have been very clear with Bimbette (not her real name) about what it will take for her to get to transplant. You may remember her.
Now, we do stem cell transplants at the hospital where I work, but not the kind she needs*. Since no one in our state does that kind we begged and pleaded and made arrangements with an out of state hospital and doctor to accept Arkansas Medicaid and get this done for her. Without it she will die, there is no question. I have told her that in just those words. More than once. If I try to use different phrasing, she doesn't hear me.
There are certain requirements that have to be filled before a patient can go to transplant. First, they have to be in remission. Not as easy as it sounds. Second, they have to be in reasonably good shape, because it is physically very debilitating. Third, they have to have good dentition**.
There's where we ran into difficulty. Bimbette needed most of her teeth out. And that's not so easy for someone with no money. So we worked and whined and begged and pleaded and fought our way up through hospital administration and finally, finally got them to agree to pay for her dental work. Then we found a dentist, also not easy, who would accept what Administration said they would pay and would come to the hospital to remove her teeth. Plans were made, arrangements were put into place, everyone was on go.
But then, somehow, idiocy struck.
You see, the work was scheduled to be done under general anesthesia because there was so much to do, so she was not supposed to eat from midnight until the time she went to the OR. Everyone was very clear on that point, including the patient.
So why? Why, why, why, did she send her SO out to get her some breakfast?
Once so informed by the nurse I went and asked.
After much sobbing and hysteria finally came this, "In three weeks I have to go for my transplant and be away from my family and it's a holiday and..."
Ah, yes, there's the crux of the matter I thought. No one wants to have dental work the Friday before a holiday weekend.
So now, after much wailing and gnashing of teeth on the part of everyone involved (Administration, Social Workers, Dentist, OR Staff, etc, etc, etc) we are expected to completely rearrange everything. Reschedule the dentist, and the OR, re-admit to the hospital when the dentist can come back (which may be a while as he was not perky about the delay after he'd taken time out of his office hours to do this and was already at the hospital when we had to cancel), and re-convince administration that they want to do this.
Because she has to have time to heal, her transplant will likely be delayed too. The transplant that is to take place at an out of state hospital? The out of state hospital that we had to make special arrangements with? Yeah, that hospital. She will also need more maintenance chemotherapy to stay in remission until the transplant can be rescheduled. And a process that was going to cost in the hundreds of thousands of dollars just got even more expensive.
Here's my question. When did we decide as a society that we owe help to people who not only will not help themselves, but make it as difficult as possible for us to help them?
*They come in 3 varieties, one uses the patients own cells (autologous), one cells from a full sibling (allogeneic) and the 3rd is from a matched unrelated donor (MUD).
** There are a few more requirements, but those are the ones pertinent to this tale.