No, the routines don't last. Nothing is stable on this territory.
Sunday night, a call from the unit. My father has developed a fever. They're monitoring it. Nothing for me to do but to wait for more news.
Monday night, the unit calls again. Chest x-rays have come back and my father has pneumonia. They're treating it with antibiotics.
My first reaction - a spike of hope at the word "pneumonia" and confusion about why they're treating it.
You need to understand that years ago - I remember this vividly - my father told me about the older generation of physicians and how they used to refer to pneumonia as "the old man's friend." Some apparently still do.
For years - even back when he was in better shape - my hope was this: I want him to run into something other than Alzheimer's that takes him out, as quickly and painlessly as possible. Dying from Alzheimer's is far and away the worst case. I look at the other patients on his unit - not all of them, but the immobile, unconscious, bedridden ones - and wonder what the point is of maintaining him so he can wind up like that. My reasoning runs along these lines.
And here they are trying to cure him?
I asked the unit staffer if there was someone I could speak to about the treatment protocols. There wasn't, but he suggested I talk with the charge nurse first thing in the morning.
So yesterday morning the conversations started. The charge nurse was sympathetic and sent a message to A, a senior nurse who works in the palliative care program - a nursing home offering that isn't exactly hospice (its patients don't qualify) but that uses some of the same approaches. A agreed to come onto the case and work with me on a course of treatment. Reviewing my instructions - the ones I gave at the initial treatment conference - we weren't able to come to any immediate conclusions. I'd refused extraordinary interventions and pneumonia vaccine, refused hospitalization except for pain management, but asked for consultation on most other matters, so I'd be able to judge on a case-by-case basis. In this case, IV antibiotics would count as an extraordinary treatment (they'd require hospitalization, and possibly intubation as well). But oral antibiotics are another matter. They won't necessarily help (according to A, my father's white blood cell count was high enough that in the absence of Alzheimer's, he ought to be hospitalized) but won't necessarily hurt, either. In the end, after I'd talked her through my viewpoint about keeping him alive to die of Alzheimer's, she suggested that we arrange a hospice consult in a couple of days, assuming he pulls through the pneumonia. She also thought that on balance it might make sense to discontinue the antibiotics - she'd talk to his physician about that.
I went off to have some oral surgery done - it was that kind of day.
A couple of hours later I was back at home, wondering how much Tylenol I could take without doing myself real harm, when the physician, Dr. H, called. Dr. H is an internist who's been managing the general medical side of my father's case since we brought him to the nursing home. What followed was the single most bizarre conversation I've had in the six-plus years I've been looking after my father's Alzheimer's.
Dr. H told me forcefully that he wanted to treat my father with IV antibiotics, hospitalization and all. "If I treat him, there's a 50 percent chance that I can pull him through. If I don't, he will be dead in 48 hours. " Dr. H explained that by treating, and setting up the 50 percent odds, we would truly be putting the matter "in God's hands - and I mean that in a very religious sense." He also told me that he himself had Parkinson's, and that that colored his viewpoint. He said that letting my father die of pneumonia would be equivalent to letting him die of a headcold. "It's not like we're talking about intubation [we're not?] or some other extreme intervention - it's a simple thing that could bring him back."
Bring him back for what? I told him that letting him die of a headcold seemed merciful to me.
I said that I was also proceeding from a religious viewpoint (true), and asked what shape my father would be in if we pulled him through, explaining that in the last two visits, he seemed profoundly disoriented and had a hard time recognizing me at all. "Oh, his mind is gone," Dr. H said. "That won't come back. But his heart is very good." "So we're trying to preserve a heart?" I said. "I'm sorry, but that makes no sense to me."
All I can see in my mind's eye is my father two years from now as one of those bed cases, all because Dr. H went all out to "save" him.
Dr. H said he needed to talk to a patient, and asked me to call back in 90 minutes with a decision on the antibiotics.
There followed 90 minutes of near-panic. Here I am, suddenly under the gun, having to decide in the next hour and a half whether my father dies in the next 48 hours or not, or so it seemed. I placed a couple of calls to A, talked to my wife who talked to her sister (both favored a fast humane exit), even tried to call Dr. B, my father's New York geriatrician. Her office suggested I send an e-mail and they'd alert her to it, so I wrote one. Finally I called A again and the front desk at the nursing home had her paged and she came to the phone.
We went through it all again. She clearly didn't want to give too much away, but allowed that Dr. H "wasn't comfortable" with hospice or end-of-life issues - which, as a side note, raises a question in my mind about what the guy is doing practicing on the dementia unit of a nursing home. A's suggested compromise was this: continue the oral antibiotics for the moment, on the grounds that they're unlikely to have much effect but will keep Dr. H satisfied, then set up an immediate hospice evaluation.
I agreed, got off the phone right at 5, and called Dr. H. I told him I wanted no IV antibiotics, and oral antibiotics only pending a hospice evaluation, and could he put in the order for the hospice consult. He agreed.
At 6:30 I drove up to the nursing home to meet with the hospice admitting nurse.
She and I had one of those good conversations that you have with talented hospice people. I took her on a quick but thorough tour through my viewpoint about keeping my father alive (it gets faster and more focused the more I do it). She agreed with it. She took me through some expectation setting, and had me sign a sheaf of forms. I've been here before - went through it with my mother - so I'm familiar with my reactions - the way the emotion sits just behind the efficient, cordial discussion, and breaks out occasionally, but not too much. She has these conversations for a living and seemed to understand.
We went downstairs to see my father so she could run her evaluation - a formality since she'd already admitted him based on the nursing home's request (she said they were good at selecting their cases). He looked awful - pale and slumped over to his right, asleep, with his jaw dropped wide open and set hard. He was wearing a nasal cannula and was hooked up to an oxygen tank. It was an end-of-life look - not technically (the nurse pointed that out) but he seemed like he'd crossed a threshold and was getting beyond us. She took vital signs, ordered low dose morphine for respiratory distress, and told me I'd be hearing from the hospice nurse who'd be managing the case. She explained that management now passes from the nursing home to the hospice agency - my father will stay at the nursing home and the staff will continue to care for him, but hospice will direct the care.
I came home in a daze with my folders of information - yes, have been through that part of the drill, too - and tried to assimilate it all.
Dr. B helped. While I was in the hospice meeting, she sent me an e-mail that - in contrast to Dr. H and his messiah complex - was a model of how a physician ought to behave. She didn't take a viewpoint one way or the other, but instead laid out the facts as she saw them: that my father would have repeated episodes of pneumonia, caused by his inability to swallow properly and clear fluid from his lungs, and that one of the episodes would kill him. She said she'd support any decision I made.
That should have put a period on it, and as of this morning, I should have been working smoothly with hospice. But of course, nothing goes that way. Already, as I was leaving the nursing home last night, there were signs of trouble - we met A briefly and she suggested to the hospice admitting nurse that we raise the question of discontinuing the oral antibiotics, "but not 'til tomorrow - Dr. H isn't on the same page as the rest of us and it'll take him time to come around." I wondered to myself in passing whether it was a good thing to have to walk on eggshells around the physician of record, but I was too tired to make anything of it. There were other comments to the effect that Dr. H "didn't get" hospice or palliative care, not nearly as much as Dr. M, but that we could find a way to work with him. Again, I took it in but didn't react.
Then, as I was writing this post, I had a series of phone calls from S/2, the hospice nurse now assigned to the case. The first call was a status update - my father is sleeping comfortably, was able to eat, and they'll continue him on the oral antibiotics through January 21. I asked whether there'd been any discussion about stopping the antibiotics, and she said she'd check with Dr. H about that. She told me she had the impression that continuing the antibiotics was a compromise between the family's's wishes and what Dr. H wanted to do.
I asked her why, exactly, we were trying to compromise in order to make Dr. H comfortable. His comfort isn't what's at issue here - it's my father's comfort. I explained in detail - since this was another first conversation - what my father's history was, what his current condition was, and what he would have preferred. She told me that she agreed completely with my viewpoint, and that most families in this situation, faced with pneumonia, opt not to treat. But she had to clear it with Dr. H.
She called back to say that she'd spoken to Dr. H - who had declared that he was completely uncomfortable with the family's wishes and that he was taking himself off the case. To which I said, fine - let's move on and work with Dr. M.
Except that a half-hour later I got a third call - she told me that Dr. H had reversed himself, ordered the antibiotics discontinued, and would continue as my father's physician. At which point I said, no, he won't. Enough grand opera. The chances are that there are going to be other tough decisions to make as we go through this, and I need to work with a physician who basically understands my viewpoint and can be calm and professional about it. I don't have to agree with him all the time - in fact, at a certain level I'm grateful to Dr. H for his strong pushback, since it gave me a chance to test and sharpen my own thinking. But there has to be a cool, objective working relationship, not one that's swamped in the doctor's imperatives and inhibitions and emotions.
So, final act for today - I called A and left a voicemail requesting that Dr. H be removed from the case and replaced with Dr. M, or someone else of their choosing. A necessary formality - I'm healthcare proxy and I'm the only one who can make the request. Now it's in and we'll see if we can't get somebody new in place tomorrow.
You always expect this to be a solemn process and it never is - there's always massive confusion and some sort of blood feud. At least we're having ours early.
There's also the underlying reality that my father might be dead tomorrow or the next day - or might pull through and go on for weeks or months or years. I'd like to be able to process that but you never get the chance, except on the fly. So for the moment I'll try to get us from today to tomorrow and see how it goes.
For the moment, here we are.