I just spoke with Maggie

Yesterday Maggie had trouble breathing so she was put on oxygen — not a mask, the tubes around the ears and a cannula in her nose. She also began to hallucinate and talked about cleaning gutters — a job I never saw her do. Her sister just told me that Maggie didn’t sleep all night, due to her hallucinations. She cleaned gutters, cooked and saw a man who frightened her. Yesterday and today the doctors said her test results look good and they seemed optimistic. They dismissed the hallucinations as a side effect of Maggie’s chemotherapy.

My mother’s dying process took place in our home under hospice care — hospice is a type of care, not a type of building. Five days before she died I noticed she seemed frightened and was laboring a bit to breathe. I called the hospice nurse and the palliative care doctor ordered oxygen like Maggie is having now. It greatly reduced her fear and strain to breathe. My mother’s hallucinations began a few weeks before she died. My father and Maggie and I were taking her to the urologist and suddenly she piped up in a cheerful, energetic voice, “I wonder if Mommy has the quilt finished.” My mother was 82 and her mother had been dead about 30 years.

When we got back to the house, Mother got settled in her spot on the sofa in the den under a heap of blankets and began to talk about going home. Maggie tried to orient her and tell her she WAS home. I tried to get Maggie to play along, the way I did. I asked my mother to describe the home she was talking about and the people she needed to meet there. It was the farm house she grew up in and her dead brothers and sisters. Of the 12 that survived childhood, she was one of only three still alive. Because I was curious and it made her happy, I asked her to describe the things she saw from her childhood — these were mental images or hallucinations, she’d lost her central vision to macular degeneration about 10 years earlier. I mentioned memories from her youth I knew were happy ones to cheer her up. When she got anxious and asked for a brother or sister by name, I told her they were in the next room, or out doing an errand or a chore, but would be with her soon. This seemed reasonable and reassured her, so she would relax. In five minutes or so she would forget, and we would have the same conversation. I always replied like it was the first time she had asked, since, for her, it really was.

I got to speak to Maggie for a few minutes just now. Her voice is weak and scratchy — her mouth and lips still have lesions, although they are improving. But I was glad to hear her having the clarity and energy to speak at all. I just told her I love her and listed by name all the people and kitties who love her. I also told her that her guardian angel and angels of healing and divine love were with her. She especially loved hearing about the angels that were with her.

My impression is that Maggie’s siblings who live three and four hours away from the hospital are being lulled into a false hope by the doctors’ optimism, so they are postponing the long drive. The sister and brother that are with Maggie see the symptoms of dying, but can’t talk with Maggie or the doctors about them because the doctors are only admitting in an ass-covering way that Maggie could go any time. The goal seems to be to be able to say, “We did everything we could.” The tragedy is that in our current healthcare system, you are not allowed to admit you could be dying AND do everything at the same time so you really aren’t. So I suspect that more often than not, instead of feeling vindicated by doing everything, instead no one gets to really talk about what’s happening — the dying process — and people feel hurt, angry and guilty because they didn’t get to say and do all the things they would have if they had known how nigh the end really was.

Another consideration is that acute care doctors do not know how to make a patient as comfortable with end-of-life symptoms as palliative care doctors do. Even when the medications are known to them, the doses are not only different but also a moving target. I am skeptical that Maggie’s pain, air hunger, anxiety and hallucinations are getting treated as well as they would in hospice. But I do admit that I wouldn’t be able to do better for her if I were there or she were here — even with my super ninja patient advocacy skills — because I would have to see that Maggie gets the care that SHE wants, which is acute care. Her sister told me the Markey Cancer Center doctors say that Maggie will be treated there for several more days. I think they really do know the end is near, they are just open to having Maggie surprise them. Just to be clear, I’m pointing out how the acute care system doesn’t address the end-of-life as well as the hospice care system does. My impression of the Markey Cancer Center is that it is easily one of the best in the world and that Maggie is extremely fortunate to be there, given that she wants to stay in the acute care system all the way to the end.