I am in Florida with my mother, waiting for my 94-year-old father to die, which the doctors now assure us will happen within a week.
I have four questions for those doctors, which I will be asking not in the spirit of second-guessing anyone's decisions, but in the spirit of understanding the alternative ways this might have played out, so that I'll be better-informed if I find myself making the same sort of decisions for someone else (my mother, my spouse or myself) some day.
My question to you, dear reader, is: Are my questions clear, well-articulated, and free of unintentional belligerence --- and if not, how can they be improved?
In the sections below, I will give some brief background information, then a history of the past week, then a list of my questions. I'll number paragraphs for ease of reference.
Background
B1. For the past couple of years, my father has had moderately severe Alzheimer's. He functions perfectly well as far as eating, bathing, using the bathroom, etc. But he gets confused about a lot of things, and at least once a day becomes frantic about some imaginary problem that must be solved right now. He suddenly realizes he's going to miss his plane (no, there is not really any plane) and empties his closets, filling suitcases in a frenzy. Or he calls the police and reports that my sisters have been kidnapped. Or he decides his wife has gone missing and insists that his actual wife, who he mistakes for his long-dead mother, accompany him on a search-and-rescue mission.
B2. There are also plenty or times when he seems like a pleasant, mildly forgetful old man who is quite enjoying life. During those times, he sometimes knows who most people are; other times he doesn't. (The last time I was here he spent several days believing I was his cousin Milt, who has been dead for forty years. But he quite enjoyed my company.)
Current Events
C1. About a week ago, my mother noticed that he had spit up a small amount of blood and called 911, though he had no other symptoms. He was taken to the hospital, diagnosed with pneumonia, and put on antibiotics.
C2. The doctors explained to us that when an Alzheimer's patient develops pneumonia, it's almost always because he has started swallowing incorrectly, taking food into his windpipe. Once this starts, it never stops (because with the Alzheimer's, you can't retrain them in how to swallow) and therefore his pneumonia was likely to recur, and we should view him as nearing the end of his life.
C3.The following day he was examined by a swallowing expert who said he was swallowing just fine. (The other doctors expressed quite a bit of skepticism about this.) Moreover, all agreed that the antibiotics were working extremely well and he was well on the road to recovery from this particular pneumonia, at least.
C4.Then he decided to go to the bathroom, and was informed he had been catheterized, and should just pee into the bag. This caused him almost unbelievable anguish. He did not understand the catheter, and thought that not being allowed to use the bathroom was almost unspeakable torture. We explained the catheter, he understood it briefly, then five seconds later, he decided to go to the bathroom and we replayed the story. Then again and again and again and again, with more franticness and more anguish each time, till he realized that if he was being tortured so mercilessly by the catheter, he was probably being tortured in other ways as well and so was absolutely terrified. He frequently begged us to kill him rather than let this torture continue.
C5. Eventually, when nobody was looking, he ripped out the catheter, causing himself a relatively minor but non-trivial physical injury.
C6. They insisted on re-catheterizing him, though I asked if this was absolutely neccessary. They said it was, for a variety of reasons, including the fact that he had been refusing his usual prostate medication and might not be able to urinate without a catheter. While they were re-catheterizing him, I stood on the other side of a closed door and heard him yelling PLEASE DON'T DO THIS; DON'T YOU UNDERSTAND THIS IS KILLING ME PLEASE PLEASE PLEASE OH I ONLY WANT TO DIE etc.
C7. We begged them to sedate him. They gave him an antipsychotic, which worked fine for a while, then stopped working, so they went to Ativan in small doses, which worked better.
C8. They gently suggested that we move him to hospice care (down the hall in the same hospital) where he could get whatever sedatives were necessary to keep him calm, at the cost of receiving no further treatment (except insofar as it was palliative) for any recurrence of the pneumonia, etc. We jumped at this. It took them a few hours to get the doses right, but he's now on an Ativan/Morphine/Haldol cocktail that has kept him pretty much blissed out for the past few days.
C9. The doctors say he has at most a week.
My Questions
My questions for the doctors:
Q1. He came in with pneumonia, and an expectation that pneumonias would recur. The pneumonia got cured, and the swallowing expert disputes the expectation of recurrence. So in some sense there was, as of a few days ago, nothing wrong with him except for mental anguish, triggered by the catheter. Now, I don't want to get into a dispute about the neccessity of the catheter, but here's what I do want to understand (because I might face this again somedday): In the absence of the catheter, how might this have played out? Is it plausible that he'd have returned home and been as fine as he was the day before the pneumonia? Or was the stress of the pneumonia and the hospital visit (together with his natural inclination toward torturing himself) going to drive him to the same point with or without the catheter?
Q2. My understanding is that there's a big trade-off with the Ativan: It calms him down but also frequently causes death in Alzheimer's patients. I think I understand that the reason for the latter --- the reason you and I can safely take Ativan but my father can't --- is that it causes subtle changes in breathing patterns to which you or I would easily adjust but are too demanding for the brain of an Alzhiemer's patient. My question is: Do I have this right, and if not, what is actually the deal with Ativan and Alzheimer's?
Q3. The choice we were given was: continue to treat his physical ailments (if any), but keep him inadequately sedated, or move him to hospice, sedate him as much as necessary, but give up on treating physical ailments. (It should be noted though that we are allowed to reverse this choice at any time.) My question is: Why is this either/or? Why can't he have both the sedation and the antibiotics? N.b.: If the answer is that the combination is just too damned expensive, I can be perfectly on board with that answer.
Q4. What, exactly, is my father going to die of? He no longer has pneumonia. He's taking Ativan, which I understand sometimes kills Alzheimer's patients --- but sometimes doesn't. Presumably lots of his organs are shutting down under all the stress. But---which of these things make the doctors so sure he's got less than a week to live? Looking at him, he looks almost like a corpse already (though a blissful one), so it's easy to believe he's almost dead, and I don't question the prognosis. But I still feel like there's a key step I'm not getting.
In Conclusion
Those are the four things I want to ask the doctor. Have I worded them clearly? Have I worded them in a way that the doctor won't mistake as a veiled threat to sue him? Have I left anything out? Is there anything else I should be asking? And do any of these questions have answers so obvious I shouldn't have to ask them in the first place?
Your comments are welcome.
EDITED TO ADD: AN UPDATE
I had a long talk with the hospice doctor. About 85% of the time I thought we were communicating pretty well. I attribute part of this to the good advice I got from reedrover and fenicedautun. The doctor never once became defensive, which was a blessing. Here are what I understand to be his answers to my four questions, followed by a fifth question that I still need to ask:
1) How might this have played out in the absence of the catheter? The doctor, who was not part of the decision to catheterize, professed total agnosticism about whether the catheter was actually necessary. He also said that in the absence of the catheter, it is definitely possible, but also extremely unlikely, that my father might have simply recovered and gone home. The reason he considers this extremely unlikely is that Alzheimer's patients (at least those who are as advanced as my Dad), once brought to the hospital for almost anything, nearly always fixate on something to get frantic about, which puts them in the very state of mind my Dad was in, where the anguish and frenzy just build on themselves, until you reach a point where they are unable to eat, drink or function, which leads to rapid decline and, usually, death. In other words, if it hadn't been the catheter, it almost surely would have been something else.
When I asked for clarification, the doctor repeated that in most cases, advanced Alzheimer's patients who go to the hospital for anything at all --- even a minor cut --- go into this cycle of frenzy, leading to death. If this is true (and I mostly trust the doctor on this), then I'm shocked that I didn't know it. It seems like the sort of thing one should know, since one might some day be in the position of deciding whether to bring an Alzheimer's patient to a hospital for something relatively minor.
2) Am I right in believing that Ativan frequently stops the breathing of Alzheimer's patients? No. The doctor couldn't figure out where I got this idea (which I sort of pieced together from the web and some not-entirely-clear comments made by other doctors), and said it's certainly wrong. Ativan will stop the breathing of anyone who overdoses, but that has nothing to do with Alzheimer's.
3) Why can't we give both antibiotics and sedatives, instead of having to choose? Well, the doctor pointed out that's not exactly an accurate statement of the choice --- in hospice you can still have antibiotics as long as the purpose is to alleviate symptoms rather than to prolong life. But the basic question remains. He talked at some length about the reasons for this, but I'm still not sure I really understood him. On the other hand, my guess is that once you've got a patient as sedated as my Dad is, there's no point in prolonging his life, since he'll never be conscious again anyway. (Unless you unsedate him, which just puts you right back into the frenzy.)
4) What is my Dad going to die of? The doctor seemed totally taken aback by this question and professed not to understand what I was asking. When pressed, he said that it's hard to say what will stop first, but the most likely thing to stop will be his breathing. The gist of his comments is that pretty much everything is shutting down at once, so there's no real point in trying to predict the winner in that race. The doctor points out that it's impossible to feed him at this point, so he's not getting nutrition, which is contributing to the overall decline.
This raises the question I wish I had asked (and will tomorrow if I can):
5) Why aren't we feeding him intravenously? I suspect again that the answer is that there's no point, since we've already decided to keep him sedated to the point of unconsciousness. But I'm somewhat taken aback to realize that it's taken me till now to even ask this question, and that the doctors never seemed to feel like it was worth bringing it up. In fact (and here my own exhaustion is probably showing) I no longer remember when I became aware that they'd stopped feeding him, and although they've been very solicitous about asking my opinion/permission on every other major decision, I don't remember ever being consulted on this one.
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