A Life Worth Living: considering the limits of science in medicine and life

O day and night, but this is wondrous strange!
And therefore as a stranger give it welcome.
There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy.

Hamlet Act 1, scene 5, 159–167

Don’t get me wrong, science is awesome. I spend most of my time reading about science, learning about science, or doing science so I’m the last person you’d need to convince.

Sometimes I wonder, though, if we’ve taken this whole science thing too far. If we follow it to the letter and appeal to its authority in situations where it shouldn’t really have the last word.

I just finished a very interesting book on medical ethics:  A Life Worth Living, by Robert Martensen. Martensen, an emergency physician and professor of bioethics, draws from the personal stories of patients and friends to examine the questions that arise in the hyper-technological, hyper-scientific world of twenty-first century medicine. Like what it means to be alive in a time where a brain stem and some machines are enough to sustain the basic organs. What was once defined by a beating heart must now be redefined. Does one need to be conscious? Or is it enough to be able to perform basic biological functions?

Or whether aggressive chemotherapy is actually the right choice for a cancer patient, when such therapy rarely cures, but only prolongs. Is a longer life in a state of suffering necessarily better? In other words, just because science can help us understand and battle the disease indefinitely, should we use it? To what end? What is the end?

Should science really have the last word in these cases? Or are we using science as a default answer to avoid the moral and ethical dilemmas of our world and our time? Many of these dilemmas, created by science itself.

A few months back, there was an article in the NY Times that sparked my interest. It discussed a lawsuit filed by the Havasupai Indian tribe against the University of Arizona for using Havasupai DNA in studies for which no permission had been given. Legally, the Havasupai were found to be in the right. (As an aside: The issue of who “owns” DNA is interesting and important in its own right. As any psychologist will tell you, studies involving people must be done with express permission and full awareness of what the data is being used to study. Should DNA be any different?)

More interesting to me, however, was what sparked the lawsuit. The Havasupai were objecting, in part, to genealogical and evolutionary studies that suggested their tribe had emigrated from Asia to Arizona over the Bering Sea. A claim that directly conflicted with their traditional stories and cultural identity. According to the article,

Though some Havasupai knew already that their ancestors most likely came from Asia, “when people tell us, ‘No, this is not where you are from,’ and your own blood says so — it is confusing to us,” Rex Tilousi said. “It hurts the elders who have been telling these stories to our grandchildren.”

Others questioned whether they could have unwittingly contributed to research that could threaten the tribe’s rights to its land. “Our coming from the canyon, that is the basis of our sovereign rights,” said Edmond Tilousi, the tribe’s vice chairman.

I think this raises a question. Is there more than one kind of truth?

Are there truths other than the scientific, the concrete, the rational proof? Truths–cultural, spiritual, ethical–that are equally important? More important? Here is a case where two truths, the scientific and the cultural, are in direct opposition. Must one of them then be discounted?

In his book, Martensen describes one doctor in charge of an intensive care unit who boasted that “no one ever died on his watch”. But, Martensen asks,  did they live? ICUs are a direct product of biomedical science. The culmination of all our advances and technological strides forward. But what are they really? Eerie, artificial environments where patients reside for months or years in a stasis facilitated by science.

Martensen’s stories suggest that, when faced with illness, we put all our stones in the basket of science to fix whatever has gone wrong with our bodies. Even when what’s gone wrong has never been fixed by science to date. Even when what’s gone wrong is simply old age.

They make me wonder if we rely too heavily on science in medicine to avoid dealing with death. But then, what’s the alternative? Somehow, not trying everything scientifically possible feels like surrender. How does one decide when enough is enough?

Perhaps the key is to acknowledge that the act of living contains dimensions beyond the scientific and the biological. The history of a people includes their stories and traditions. The life of a person is more than a heart beat. After all, a mass of cardiac cells on an agar plate will beat if left long enough.

I am reminded of an American poet, Agha Shahid Ali, who was diagnosed with terminal brain cancer a few years back. He wrote his best and most beautiful poems while coming to terms with his death. It’s as if the act of facing his own mortality uncovered a layer of lyricism that had lain dormant his whole career. Biologically, scientifically, he was “sick”, “dying”. Poetically, he was speaking with a voice that jumped off the page with life long after his death.

In a letter from Emma Darwin to her husband Charles, sent while he was first formulating his new theory of evolution, she writes:

May not the habit in scientific pursuits of believing nothing till it is proved, influence your mind too much in other things which cannot be proved in the same way, & which if true are likely to be above our comprehension.

Like Martensen, I wonder if these are words we should all keep in mind when addressing the role that science ought to play in medicine and in the larger context of society.

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Sarah Andersen is both a wave and a particle.