Tuesday, November 23, 2010

When the fuel gauge is on empty: Gadgetry at the end of life

Today's post was going to be about false positives in screening trials, but this article in the NYT derailed me. So I will talk about false positives in a future post.

The NYT article talks in general about telemonitoring of elderly and chronically ill patients as it might impact both their health and the need for more acute and intensive encounter with the healthcare system. One specific case discussed is the Mayo randomized trial of home telemonitoring, complete with physiologic measurements and adaptive leading questions based on the derived data. If I understand correctly, the data are automatically conveyed to a nurse who can then contact the patient if something seems out of the ordinary. This sounds great, except for a few minor considerations.

One of these considerations, the fact that several recent studies have failed to show any differences in clinical outcomes of patients undergoing monitoring versus usual care, is well explored in the article. And of course, the newer and better studies use newer and better technologies that do not rely on patients to call in their results, and this is why we can expect better results from the Mayo study. Maybe. Or this could be a case of rescue and auxiliary hypothesis biases, no? I guess we will see.

But there is another elephant that stands in the corner without being discussed. This elephant is of course costs. Now, if I were designing the trial, I would also try to demonstrate that these monitoring devices and protocols will save healthcare dollars by reducing hospitalization rates and the need for other acute and costly interventions. Of course, in this case you have to ask "Compared to what?" Well, of course, this is compared to our usual care. And here is where I run into a problem, and in my mind this is the place where we should be intervening.

At the risk of sounding inhumane, I wish to point out several things. The patient discussed at the very beginning of the NYT story is 94 years old and has a chronic lung disease. Later on in the story, we learn that the average age of patients enrolled in the Mayo trial is 80; and we presume that they all have at least one chronic disease that requires monitoring. What am I driving at? No, it is not death panels, but it is a sensible approach to care at the end of life. Has anyone asked the 94 year old Ms. Hofstad with chronic lung disease whether she would prefer to see the healthcare dollars spent on prolonging her life or would she prefer that these dollars were used to provide Ms. Hofstad's daughter with prenatal care and her grandkids with vaccines? For this is the true trade-off: do we continue to invent ways to keep ourselves from facing our own mortality, or do we spend the limited yet wildly escalating healthcare dollars on sensible interventions that assure health for the next generation?

If any of this sounds unethical, I would submit that it is our current blinders-on discussion that is unethical. My guess is that the elderly who were manipulated by the "death panel" rhetoric are not aware of the very real choices having to be made between going on as we are, spending shocking amounts of money for infinitesimal gains at the close of life, being subjected to heroic interventions despite their futility, and allocating this money in favor of public health interventions that will ensure a huge incremental gain in our children's and grandchildren's future. These are personal questions, but when they are wrapped in political rhetoric, they lose their personal meaning. I can tell you unequivocally that, if it came to a choice for assuring ongoing life for me versus a healthy future for my children, even today, while I am still healthy and reasonably young, I would choose the latter. Is it conceivable that Ms. Hofstad and her peers would choose otherwise? I do not thinks so. So, we need to reposition our discussion of ethics of decisions at the end of life. The choices I gave as examples are real and need to be addressed explicitly, and we all need to be aware of these trade-offs in explicit terms.

I am not interested in terminating any life that is not ready to end. However, as I always say, the number one risk for death is being born -- we have not fooled nature or evolution yet to evade this outcome. Nor, in my opinion, should we try. We should all do our best to live a healthy and full life and learn to be comfortable with the idea of our own mortality. It is our evolutionary imperative to insure the durability of our species. Electronic monitoring at the end of life, although sexy and market-friendly, is not the way to set up the future generations for health and success. And it is certainly not a way to address our fear of death, the perennial third rail of our culture. It would be more ethical and responsible to start learning more about how to do this effectively than to continue developing new gadgets to keep the vessel moving even when the gauge is on empty.

I acknowledge that this is only one person's view, and the subject is complex and emotionally jarring. I am sure there are a lot of dissenting opinions on this subject, as there should be. We need a debate, where we name all of the factors and arrive at at a global solution that comports with our personal, societal and global interests. Let us start here and now.

1 comment:

  1. This is an interesting discussion to follow from the outside. Do you think many or most people/patients do believe that one type of health care spending competes with another, such that spending will be rationed one way or another? It seems obvious to me but I don't know if everyone thinks that way. It seems easy for the health care system to present a mirage of limitless health care provision, a dream which patients are happy to grasp.

    I'll try to avoid presenting a political line here. Your system in the US seems to be particularly prone to this false promise as the accounting for spending is circuitous; via employer via insurance company with lots of federal money thrown in as tax breaks, but direct government involvement only in Medicare/Medicaid. I haven't worked in the US but having worked in Britain's NHS and now the very similar Australian system I would NOT recommend the US move closer to these systems. The same false promises are made, but by politicians seeking election, who then spend their entire terms working out any and all ways to limit and cut health care spending. Throw in government bureaucracy directly running the show and decisions about provision of care are as strange and senseless, though cheaper than the US.

    Other systems have been proposed and worked in other countries which are very different to either US/UK model and which I think would work better. These all share the feature of placing much more choice and responsibility for health care decisions and spending in the hands of patients themselves.