I think the main thing is that ideally the patient, family and doctors are on the same page. Sometimes that isn't always the case which leads to very difficult decisions.
I think that the doctors are typically leading the cheering crowd (made up of the family), and eventually they wear the patient down into trying "just one more time". I wouldn't accuse the medics of crossing the line into "misleading", but I'd certainly say that the focus leads to "false hope".
I can understand a patient developing the will to live through a birthday or a holiday or even just one more sunrise. But at some point the quality of the sunrise is affected by all the medical equipment between you and the window.
Meanwhile when the doctor is the patient, they have no trouble flipping off the crowd and heading for the locker room.
I'm a little cynical on this perspective. My father's finished five of six chemo sessions for multiple myeloma, and he came through with such flying colors and great results that the oncologist may stop there. Meanwhile my brother, who's been sitting with Dad through these visits to the chemo and the doctor(s), has noticed that Dad's health has now perked up to the point where he's realizing what it's like to live with Alzheimer's. Waking up nearly every morning with no idea where you are. Not being able to remember any of the names of the staff or the patients. Reading the newspaper or watching TV from habit, not with retention. Going out for Sunday lunch and having nearly verbatim the same conversation every week. Tomorrow it starts all over again. Groundhog Day with every sunrise seeing the script for the "first" time. And Dad's symptoms are considered "good" as far as Alzheimer's goes.
Dad's not exactly capable of what anyone would consider to be "informed consent". An eager medical professional could get him to agree to just about anything, at least until the chemo starts to hurt. What if the myeloma symptoms return in a few months? What if the oncologist comes back with a new wonder drug or a different protocol? My brother and I
are considered capable of "informed consent", for whatever that's worth, and at some point this whole process has to cross the line from "getting healthy" to "heroic measures". Dad's medical directive is very clear about heroic measures, and I have a stack of his hand-written correspondence to back up that attitude.
At some point my brother and I have to decide whether it's really a good idea for Dad to be the world's healthiest Alzheimer's patient, or whether it's better to start loading up on the palliative measures. However multiple myeloma does not sound like an easy way to die. At this point it's hard to claim that there's any "quality of life" in either lifestyle. How does one balance the relative quanta of pain between the two approaches?
Keep in mind that my brother and I happen to agree on this. Even if I had my doubts, my brother is the guy charged with the responsibility of making the decisions. It's my job to back him up and help us get figure it out, not obstruct the discussion or the decision. But we're just not sure how to have the conversation with the care facility or the oncologist. This is why I end up reading so many books on the situation and nudging my brother to get to know the care facility's hospice staff.
Last week was Dad's one-year anniversary in the care facility. 54 weeks ago he came within 30 minutes of dying on the operating room table from a perforated ulcer. From what I've been able to reconstruct of his files, he had cognitive-impairment symptoms as early as mid-2008. He lived independently for nearly three years until his cognition sharply declined and he could no longer live the way he preferred. I think that ever since he went to the ER with that ulcer, he's been living on borrowed time. Not that he can tell.
I don't have any answers to this conundrum. I'm hoping to have a clue before we have to make a decision. Maybe events will help cue us into it. My worst fear is that Dad falls and breaks a hip, forcing a quick discussion/decision about the next step. Or maybe at this point, that's Dad's best hope.
