Compromise

All of life, every moment of it, is compromise not just healthcare decisions. I can't believe that you paired the ultimate responsibility for healthcare decisions being that of the patient (a good thing) with the ugly and outdated idea that a 75 year old with heart disease has less to live for (or offer) in trade for medically induced suffering to gain a bit more time than a healthy 29 year old would with a child (assuming this 29 year old becomes ill). But then you add a 29-year-old with a progressive neurological disorder. What if this was the same aforementioned (previously) healthy 29 year old with child? Does that alter the question of the time gaining gamble of medical suffering? Then there's the matter of prognostics which aren't all that good and vary, sometimes widely, from practice to practice, facility to facility. Stephen Hawking was given very little time to live but not only did he live but he did pretty well for himself. Now for him there was the issue of resources (including m- - - y, which you asked that we set aside for this discussion). Should he have just gone home and curled up waiting to die instead of what he did? Worst of all, you stated “Do everything,” and die on a ventilator surrounded by strangers, instead of in the home you love. There are plenty of statistics of people having "done everything" and surviving, even being cured. Are these statistics all lies (or as a friend would rather I say, "material misrepresentations of fact")? There is no evidence of any kind to support that any patient capable to decide and choosing to endure medically induced suffering (for whatever reason) WILL die on a ventilator surrounded by strangers. This is fear mongering, pure and simple! Statistically, as well, not that many people die in their homes, even of the 75% of the population that the hospice industry claims already wants to die there per their "studies" of the issue. As I've said many times (and some people tend to disregard as "anecdotal" and of little consequence because of m- - - y and which I personally cannot disregard because of the love I have for my wife, our family and the fact that I was physically there), dying in the home is not all it's cracked up to be. My grandmother said she was going to take a nap and just never woke up. In my opinion, that's not a bad way to go if you have to go. My wife, alternatively, was "graced with the all the benefits and beneficence" of hospice in the home (yes, I'm being sarcastic if you couldn't tell). She, a quadriplegic but capable of feeling all pain in her remaining 82 lbs of flesh, with a spine cracked into three pieces, each leg internally severed at the femoral neck, pulmonary tumor load at 30+, Cushing's disease, agonizingly painful edema in her swollen left arm from a backed up chemo port the hospice refused to flush, was presented with an illegal and legally unconscionable "new and replacement" contract to sign (cue the laugh track, get it...quadriplegic...sign this...) How does any hospice or RN justify ignoring paralysis? How do they justify asking a quadriplegic to sign anything while holding the instrument for the relief of their pain mere inches above the patient's motionless body so that it is clearly within view? Added to this, the hospice revoked any and all comfort care measures for over 48 hours in order to "convince" her and I (no duress here) to sign this "new" contract. They presented this when they knew that her chosen attending physician was on vacation and told us so when our first reaction was to contact him. Repeatedly, and against the tenets of Medicare's Conditions of Participation for hospices, the hospice RN and management attempted to "persuade" my wife to revoke the hospice benefit. The IDT RN repeatedly attempted to convince us that my wife should take large doses of liquid morphine so that he could do his work "and she won't know what I am doing to her" along with attempts to get her to take lorazepam to which she was (and he knew) fatally allergic. In a discussion with the hospice's nursing director it became apparent to me that their concerns revolved around control...and only that they should have it. How else would you interpret the nursing director's comments of "I don't accept patient refusals," that we couldn't possibly understand the "expert medical care of the dying" they provide, their perceived lack of patient profitability (that per diem only goes so far yet we weren't asking for anything except to be left alone...i.e., not rolled) and an unfounded fear of future litigation and the "real" reason for their fixation on rolling her, I suspect, as they had injured her back (on a protruding tumor) during hospital to home transport. Why else go to such extreme and illegal lengths (aside from knowing that neither the State nor Federal government will intervene on a patient's behalf, the industry will back you up and possibly the AMA & ANA will support you too as happened to us once the severity of the hospice's actions were disclosed to them)? For her additional 48 hours of pain, fear and worry, my wife having verbally "agreed" at its end (spelled "under duress") to be rolled on her side (to get the pain relief from the edema) was unceremoniously moved so (like rolling a log) and held there as she screamed she couldn't breathe while the tumors in her lungs compressed together and reduced her already reduced breathing capacity to near zero. I'm sure I need not say the sarcastic "compassion in action" comment that I'm thinking but I just did. Ultimately, she went into respiratory arrest and I had her taken to the hospital. The hospice downplayed it as dyspnea and logged the incident as "caregiver breakdown." This was done in order to bill the insurance (fraudulently) for the "unauthorized" (by hospice) admission. They wanted me to agree with them which I refused to do but they wrote it up that way anyway. They could have refused to cover the admission but they had to know that the events leading up to this, the illegal contract, extortion and withholding of necessary care from a dying patient would have become public while she lay dying (not afterwards when they could deny everything). Just for the record, during her hospital stay she was given oxygen but never placed on a ventilator. I was with her at the moment of her death and all the family had been there all throughout the day and evening hours. She was hardly with strangers. The hospice tried to get the hospital to remand control of her body over to them and away from either me or the family. The hospital appropriately refused this illegal request, as well. So you left out something in your reasons a person might not make their own decisions (i.e., ignorance, trust or fear). You need to add loss of the capability for decision making either overtly with threats or subversively using many, many semi-innocent to despicable methods. It's easiest to do this in the home setting because there are no witnesses except hospice branded "pre-grieving family members in denial" who they claim lack any understanding of medical care for the dying which they also claim to hold absolute "expertise" in, above all others. As I was told, in no uncertain terms, who are they going to believe, you or us? Put yourself in our place for a moment and answer 'What would you do?' So to answer your question...How much therapeutic suffering would you endure to save your life? I would have to say very little, if any. It's not from a death wish but I'd have to have confidence in those who were providing that care. I no longer have that with most care providers. There's too little actual skill and too much incompetence, too much guesswork and far too much patient manipulation for my taste. I will never die in the hospital, on a ventilator, surrounded by strangers, either. I expect to die at home or on the street (coming or going from home) and I suspect I will be alone. Our friends tell me they won't allow me to die that way. I appreciate the sentiment but doubt the ability...it's not like they follow me around. If I were given the choice of dying under the "care" of the hospice we had (there's one other for our area but claims are that they are even worse...though I doubt that) and dying alone and face-down in the gutter, I would choose the gutter. I say this with absolute sincerity. Fear of (our own) death is the primary reason we make bad decisions or no decisions regarding it. Lack of that fear does just the opposite (barring causation by mental illness). Each of our deaths will come. There's no denying that. More often than not, it's simply a roll of the dice, luck of the draw as to how it plays out. You can have all the pre-discussions and best laid plans you want (as you should) but they're only good if they are followed. Too many times, even when known, your directives are not followed and you're in no position to do anything about it. What can we do to change that?

Very good points. Time and time again, though, for as long as I can remember, I never got all the facts...info was withheld, etc. One cannot make good decisions or choices without the facts. When I hear that a Dr. said he told of the risks..everything that could goes wrong, patient would never in a million years agree to treatment if he/she really though this would happen.