My wife has been battling with invasive lobular breast cancer for nearly five years now. Recently things took a turn when the cancer hit her brain (leptomeningeal disease). The prognosis is not good. She's currently undergoing 10 rounds of brain radiation as inpatient in the Atlanta area. Last week, I was called by Palliative Care and made arrangements for Hospice care on the basis that she was "not responsive" and not getting better (as I was told since I wasn't allowed to see for myself). Because she was at that time placed in "comfort care", I was able to see her, and was surprised to find her awake, aware, and fairly lucid (though still unable to communicate or move much). The day before she was to be transferred to Hospice, the attending Doctor called me and said plainly that he saw the same thing I did, and did not think it was time to stop the treatment. He thinks there is a chance that she could improve, and, if she's able to start eating solid food and get strong enough, could start the next phase (PARP inhibitor chemo).
The key part there is that she needs to be able to eat, or she won't be able to take the oral chemo.
Due to very strict Covid policies, the hospital only made exceptions for me to see her when she was in "comfort care". Yesterday I was able to visit her, and the hope was to see if I could get her to eat something, which I did. Today, the hospital is back to "by the book". She's not in "comfort care", therefore no visitors, no exceptions. I'm concerned that the staff doesn't know how to get her to eat, and won't try very hard. I don't want to undo the progress we made yesterday. I asked to talk to the nursing manager who makes these decisions, but she has not called me back.
I have tried to come up with ways to ensure Covid safety and meeting the goal if not the letter of their protocols. I suggested, for example, that I take a Covid test, like any patient being admitted, and if negative, I can come in, but I have to stay in the room at all times, and keep a mask on except when eating or drinking. My wife and I have been downright paranoid about this virus before it was fashionable to be. I don't have direct contact with anyone. I have groceries delivered. On the rare occasions when I have to go out in public, I double-mask (KN95 + regular surgical mask), use a mask brace to improve the seal, shave before putting on a mask (also to get a better seal). It takes me a good five minutes to get masked up. I inspect my masks regularly and disinfect them with dry heat at 100C for about 1 hour. I replace masks regularly. I make sure to keep distance from others, even outdoors, and even when masked. I wash my hands all the time.
Bottom line: I take this virus very seriously. I'd venture to say that my own Covid "protocols" are at least on par with the hospital's. I explained all this to the hospital staff.
The hospital makes exceptions for "special circumstances". I'd think that a patient who isn't able to communicate and advocate for herself would fit the description. This is a critical time. If she's to have any chance at all, she needs to keep on fighting, and she needs to eat. The hospital can only attend to the medical side of the equation.
She's supposed to end the treatment on Thursday, and I'm not sure what's the plan after that. She won't be in a condition to come back home. There was talk about Hospice care, where she can continue getting medication and food, and there is more flexibility in terms of visiting spouses and family. Maybe I just need to wait until then. I just worry that at this critical juncture some bureaucrat is not looking at the whole picture and may let us lose what little ground we were able to gain.
So, I'm not sure what to do or if there is something I can do. She's finishing treatment in two days. At that point, we can transfer somewhere less restrictive. Anyone with a similar experience that can share some ideas?
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