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.

Requiem for my father

My father passed away about two weeks ago after battling a brain tumor for some time. Initially diagnosed with an extensive inoperable mass one and one-half years ago, upon presenting with a focal seizure, he did well with only one medication for seizure control for about ten months. Around Christmas of 2009, however, he landed in the hospital in status epilepticus that took three days to control. After these days of florid hallucinations alternating with pharmacologically achieved stupor, he came out of it remarkably cognitively intact, still able to quote poetry and sing Italian opera arias in their entirety. Although he was now unable to use his legs, he eagerly accepted the prospect of getting back on his feet by working hard in physical therapy. And though this never came to be, he managed to survive for additional seven months.

But my Dad was not your average guy. A survivor of World War II, an immigrant from the Soviet Union, a retired professor of mechanical engineering, he was at once a brilliant and an infuriating man. His stubbornness knew no bounds, and, even though he did not have the affinity for competitive sports, his drive to win was strong. He was a survivor by his nature and by his experience. So, when he was faced with the choice of a rapid decline and death versus some form of treatment for his tumor, he opted for the latter. As he and my mother put it, "doing nothing was not an option". So, when offered 6 weeks of radiation (5 days/week, with the risk of cognitive decline, the prospect of which terrified him as much as dying) together with oral and intravenous chemotherapy, he bravely accepted all.

As the days and the weeks of his treatment wore on, he would give me regular updates on how many radiation sessions he had completed and how many were still left to go. He suffered side effects with minimal complaining and never lost hope that the treatment would help him achieve a measure of meaningful recovery. This was not to be.

While I accompanied my parents to many of his appointments, I did not go to them all. And for this reason, I cannot say for sure what was said in some of them, and how different the content might have been from what they actually heard. But I did make the point of talking to every one of the specialists on the phone after they saw my father. They were all appropriately measured in their enthusiasm and recommendations while talking with me. But did they have the same demeanor with my family? Did my parents, both highly educated but neither medically savvy, take their enthusiasm for palliation as a promise of a cure? More importantly, are similar offers to try to prolong life by well-meaning and compassionate physicians to their desperate patients routinely misinterpreted on a grand scale by thousands as promises of cure? Is it possible that most people accepting the wonders of Avastin and other high tech interventions do not really internalize the reality that this and similar wonder drugs may give them merely two months of additional life? And further, do they think that these added months will be "normal" life?

Well, in my father's case, he got superb care at every institution he went to. His doctors and nurses were knowledgeable, compassionate, humane; in other words they were everything that healthcare professionals should be. Yet their eagerness to help a desperate and scared man may have inadvertently registered as false hope for results that were unlikely. My father tolerated his treatments, but over time began to exhibit cognitive decline, at first subtle, then more pronounced and made exquisitely more painful by his over-achiever baseline. He eventually succumbed to aspiration pneumonia after we made the painful decision to provide him with comfort care only.

After seven months of this most intense good bye, my mother now understands end-of-life issues better than many healthcare professionals. She is a seasoned and experienced decision-maker in a grave situation. But this experience comes at a steep price and a little too late, since I hope she is never faced with having to apply it again to a highly personal situation. She will not regret any of the choices that she and my Dad made in this journey -- they were all correct for them. But I have once again to question the wisdom and utility of making available treatments that make a difference at the slightest of the margins, that cost the society enormous resources and exact such high emotional costs from patients and their families.

Death is a natural conclusion to a life. Since we are not that good at "just sitting there", the vocabulary of "do nothing" needs to change to "helping patients die with dignity and comfort". The manipulative rhetoric of "death panels" has to be replaced with empathy and compassion. We are not above the laws of the Universe, we are not above the laws of physics and biology. We have to reposition our societal attitude toward death as an avoidable nuisance. And we have to ask: what are we prolonging in many of the cases that we treat at the end of life -- life or death? In his better days, my Dad might have asked an analogous question: are we living longer or does it just seem longer? And then he would have chuckled. Rest in peace, Dad.