Being Humane

Thursday, June 25, 2015

At a certain point in our lives, when we are not well, perhaps we need to change the definition of “well.” Dr. Mike Martin, a tall, soft-spoken, German guy at University of Zürich, made this argument. At first blush, this sounds like a terrible idea—if you can’t make the goal, well, shift the goal post. That makes it an unfair game, because you can just keep on shifting the goal post every time you miss the mark. With such a strategy, there will be no standards, no absolutes, no baselines. After all, certain qualities such as health, human rights, education, etc. should be universally uniform.

Mike is a gerontologist, and while gentle and soft-spoken, he is also persuasive. Think about it… instead of spending increasing amounts of resources—money, energy and emotions, with diminishing returns, on patients with a limited life ahead of them, it might be better to focus on improving their quality of life. This may mean redefining what is “well.”

This is the argument made at length by Atul Gawande in his book Being Mortal. For being human is being mortal, and having a strategy to deal with our mortality with respect, kindness and acceptance is also being humane. Gawande recounts an upstate New York physician, Bill Thomas, saying, “I believed that the difference in death rates can be traced to the fundamental human need for a reason to live.”

And yet, as reported in NPR, we continue to have more intensive care provided to those who would not only not benefit from it but would likely be harmed by it. Per NPR:

Dr. Diane Meier, director of the Center to Advance Palliative Care, says, “Of course you would want to be put on a ventilator if it was going to return you to health.” The more important question is a qualitative one: What is the quality of life that is unacceptable to you? Would you want every measure taken to treat an illness or injury even if it meant enduring extreme pain with little likelihood of improvement? Or would you rather forgo such intensive treatment and be kept comfortable instead? Those are the conversations that need to happen, experts say.

In an invited commentary in JAMA, Dr. Charles D. Blanke writes:

“These data… suggest that equating treatment with hope is inappropriate. Even when oncologists communicate clearly about prognosis and are honest about the limitations of treatment, many patients feel immense pressure to continue treatment. Patients with end-stage cancer are encouraged by friends and family to keep fighting, but the battle analogy itself can portray the dying patient as a loser and should be discouraged.”

But, it seems that lacking clear guidance, the current system chooses to err on the safe side and institute more treatment rather than limit or withhold it. This goes back to Mike Martin‘s assertion that instead of trying to fix something that may be irretrievably broken, perhaps we need to figure out better ways to live with the new reality.

Besides its more obvious implication, Being Mortal has some clues toward my own personal queries and activities in life. Gawande makes the argument over and over again that we need to listen to the patients, and help them construct and live their lives the way they want, not impose on them a standard of wellness that we think is right. I have believed that citizens need to be more involved in science, and not just as observers or data gatherers but also has active participants who affect the conduct of science and the policies that come out of it and impact the quality of our lives. The bottomline is, if we are not going to involve citizens, they are going to do it alone, as is evident from the rise in informal learning. So, let‘s involve the elderly in figuring out what they want instead of deciding for them what is best. Now, that would be humane.

Goal posts are already shifting. Technology is changing our culture as well as power-relationships. Old, long standing systems are resisting, and in that resistance is heartburn. A better way is to work together, and find context-appropriate solutions. That is basically what Mike said.