Fifty percent of health-care costs are incurred in the last month of life and those costs rarely change the outcome of the patient’s illness.
I am not quite sure that the statistic of "50% of healthcare costs are incurred in the last month of life" is exactly correct. I have previously heard that it is more like 50% in the last six months of life. Either way, the point is that for most people, the majority of the dollars spent on their healthcare will be spent right before they die. This is, however, a rather specious statistic. Of course one's healthcare costs go up right before one dies! It would be much more remarkable if the costs went down. Most people get sick with the illness that eventually kills them right before they die. Saying "these costs rarely change the outcome of the patient's illness" is also specious. If the costs (i.e., treatment) changed the outcome of the illness, it wouldn't be the last months of your life; those months, and the costs accompanying them, would come later.
But let's ignore the speciousness of this argument and acknowledge that the point being made is that in this country we spend a tremendous amount of resources and money on care that ultimately turns out to be futile. The dirty little secret is that most of the time -- not all the time, mind you, but most of the time -- the doctors providing this futile care know, or at least have a pretty good idea, that this care will be futile almost from the get-go. So why do we not say so?
Would you, if you were the patient or the family member of the patient, want us to?
Be honest now. Think before you answer that question. I am sure that most readers here will respond to that question with an immediate "Yes, of course I would want my doctor to be honest and up front with me!" But put yourself mentally into that position, especially in the position of being the family member, and turn off your brain and let your heart answer the question. Because that is how you are going to answer the question when your time comes to answer it. For your time will come. I've been there as the family member -- twice. And being a physician doesn't change the fact that I am a human being as well and I respond with my heart just like all the rest of you.
I am not going to go into the details of my personal experiences with this type of situation. For one thing, it's none of your business. For another, the details don't matter. It's the decision making process that's the issue. Anyone -- everyone -- can look at these situations when they are the dispassionate outside observer and easily say that it is clear what the 'right' decision to make should be. But when you are faced with making those decisions for yourself, or for someone you love (which in my experience as a doctor seems to be more common and more difficult), it's not that easy. Because you need time to come to grips with the fact that you are face-to-face with the ultimate no-win situation, and the very last thing the human heart gives up is hope.
So now imagine that I come to you, the emotional, brain-deactivated relative, at the outset of some horrendous disease process for your cherished loved one, which almost universally you have had no preparation for, and say to you, "I know that what I have just told you comes as quite a surprise. But we have to think about how we are going to address this problem. In my experience and training as a physician, this condition has virtually no chance of recovery. The most reasonable thing to do at this time is to consult the hospice service and keep him as comfortable as possible." How do you think you'll be likely to react? I'll tell you how you'll react. You'll think I am the most callous human being you have ever had the misfortune to meet. You'll ask for a second opinion. You'll fire me. You'll tell me to go to hell. You might even take a swing at me. And I would deserve it.
Why is it this way? It has to do with how the human mind deals with grief. Because when faced with the inevitable loss of one's own life or the life of a loved one, there is grief involved. I cannot describe this any better than it was outlined by Dr. Elisabeth Kubler-Ross. This process cannot be rushed, and every person goes through it in their own time. Biological reality often forces some people to have to deal with such an issue in a compressed time period, and those poor souls are usually devastated. Believe me when I tell you that you would handle being told that your relative had died in a car crash better than if I told you that your relative was going to die in a short number of hours or days and there was nothing that could be done to stop it. Why? In the first instance, the loss is instantaneous, and there is nothing you can do about it. In the second, the loss is still at a point in the future, and your heart refuses to accept that the situation is hopeless.
And now we have the Obama Administration seemingly heading down the road to creating a healthcare system that will arbitrarily say what can be done and when it can be done. By arbitrarily, I mean based on factors that you would not consider were it you making the decision, and that is primarily the factor of cost. This is unfortunate, because they are going about this in the wrong way. And the only really unfortunate thing about it is the way they are going about it, for the reality really is we cannot afford to continue doing things the way we have been.
I have a colleague who has been pushing for quite some time for organized medicine (e.g. the AMA) to call for the establishment of rules regarding futile care. He proposes that when a doctor determines that care for a condition will likely be futile, that he tell the patient/family, and at that point if the patient/family wants to pursue that care, it will become solely their financial responsibility, that they can expect no assistance from insurance or the government (whose monies are the confiscated property of other people). I think this is a dreadful idea, because it puts the doctor in the position of deciding what should or shouldn't be done, and I feel is should always be the patient doing that. Besides, it sounds callous, and I rightly predicted that the first group to make such a proposal (of de facto rationing) would receive a firestorm of criticism regarding it. Just look at the opposition the current reform plan is generating (even from me!) just because it hints at rationing. It's best to leave that job and the subsequent fan-propelled feces to the politicians!
The sad part of this is that to a great extent this situation was brought about by us doctors, by our stubborn refusal to accept death as an acceptable outcome (for it is and always shall be inevitable), even at a time in the past when we were truly impotent. And now, when we have more abilities to try to intervene and cheat death than we ever have before (as puny as they are), a growing number of us are coming to the realization that to do so is often a disservice to our patients, but we have a great deal of difficulty saying this because we have (or rather, or forefathers have) convinced the public that we are nearly omnipotent. So the public, our patients, can't accept it when we might suggest that there is no point to fighting to the bitter end -- what's going on here, this isn't what the doctors used to say!
So, how do we change this situation? It isn't going to be easy.
My suggestion has always been that the AMA, and now I will include the government, begin an educational campaign to teach doctors how to have realistic end of life discussions with their patients. I would hope that the medical schools and the residency programs would have already started this. When I went through my training, such a thing didn't exist in a formalized way at all, and it was more or less on-the-job training. Some doctors learned it well, and some didn't. My observation of some of my younger colleagues doesn't give me a lot of encouragement in this regard. This education needs to extend, at first subtly and later more overtly, to the general public at large as well. As one example, TV shows give a totally unrealistic expectation of how successful CPR will be; it seems as if the majority of patients survive the attempt, when the reality is that CPR even in the hospital (much less outside the hospital) leads to a patient leaving the hospital only about 3% of the time. (This statistic is for CPR for conditions other than the setting of an acute coronary event like a heart attack, where the odds are much better, around 55% or so.)
But in addition, there needs to be a change in our society's attitude toward death. Currently, death is seen as an enemy to be feared and fought against with all our might. But this is a fight that we all must someday lose. Death is merely the final stage of life that we all must go through. For me, and I hope for you, death does not mean an end but rather a new beginning. The results of this poll, however, are not hopeful on this idea, and I fear that as fewer people believe there is a life after this one, protecting and extending earthly life will become ever more crucial. Whatever your religious views or lack thereof, my hope is that we can all begin to cherish each day of life we have, whatever their number, and make the most of each and every one.
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