Modern American Deathways

Some notes on Sharon Kaufman's _...And a Time to Die_, which we looked at in class last week

[I think there was a glitch in the system and this didn’t go out this morning as planned—my apology if in fact you got it twice. Still trying to figure out how this Substack thingy works…]

The medical anthropologist Sharon Kaufman’s study of modern American hospital culture, and specifically the ways in which that institution shapes the experiences most of us have with deaths, our own and those of our loved ones, is an informative but often distressing read. Much of what …And a Time to Die reveals about how most of us die today in this country is bitterly depressing, and it is not clear how we can change what needs to be changed to make things better for more of us in our final days.

Kaufman describes the two pathways that the very old and the very ill often find themselves on at the end of life, both of which make ‘the good death’ unlikely and very often increase suffering. 

Some at the end of life find themselves in a limbo in which their status regarding resuscitation and other heroic intervention in the event of acute incidents is unclear, perhaps unconsidered by the family. When they go into cardiac arrest, they are revived with CPR, which can itself be a traumatic experience. This may happen to individual patients multiple times, and they frequently end up spending their last hours or days in ICU. 

Others are released to die at home, often because there is no billable condition to legitimate keeping them in an expensive hospital bed, but then suffer the onset of some new crisis that convinces the family to bring them back into the hospital. There, they are stabilized, and then released and sent home, often to start the cycle again. The last days for these people become a constant shuttling from one place to another.

Heroic intervention or the revolving door will be the way to the end for too many of us. 

One of the important problems at the core of our cultural insecurity about death has to do with the process that inevitably leads to death: aging. Kaufman argues it is increasingly difficult to separate in the medical world into its normal components and its production of disease states.  Where does normal aging end and disease begin?  The answer is blurry, and this means physicians and, still more so, the general public have an increasing tendency in the midst of our surplus of medical technologies to think of normal consequences of aging as pathologies to be cured.  ICD codes produce a structure for potentially understanding all death as a result of disease. It is no longer even possible to be classed as having “died of old age,” as was common only a bit more than a century ago.

Death has steadily become something we believe we can control, as we believe we control everything else.  Of course, we can exercise some degree of control over at least probabilities of dying of particular diseases.  Avoid too much red meat and, absent genetic predisposition, you probably drop your risk of colon cancer by some measure.  But death itself evades control insofar as it inevitably comes, always, to everyone, whatever precautions they take and whatever interventions they prepare. This fact, unavoidable as it would seem, is nonetheless apparently somewhat less than clear to many of us.

We are simply not well-prepared to die.  Our medical establishments want to cure us, and this is a good thing, of course.  But if they are not at all prepared to help us die well, and given that most of us today will die in hospital, our chances of achieving that goal are reduced.

We do not even know what to want when we get toward the horizon.  Some of this accrues to lack of knowledge, and an inability of physicians to effectively commit the full complexities of options to medically ignorant patients and families.  Some of it is due to our cultural veil of youth and immortality and the technological fixes we believe can always save us. 

When we discuss this book, I often talk to students about how our culture depicts aging and older people in advertising and other visual culture.  These elderly folk in the commercial images never really look like old people, at least not like the old people I can see by just going outside and paying attention to passersby in town. The people in the ads appear nearly always as just very slightly older versions of the young prototypes of modern American visual culture. They are always fit and thin, with remarkably preserved and unmarked skin, all the men have muscular arms and full heads of hair that is sometimes white but never the dirty grey that is so common in the actual elderly, and the women have curvy figures and a bounce in their step. 

These old young people are often playing tennis, or out on the town enjoying themselves.  They are never obese, and it is clear that none of them has high blood pressure or diabetes.  They have never heard a cancer or dementia diagnosis and could not possibly fathom such a thing. 

The images are not real, and most of us know this, but we are so saturated in them and we so want them to reflect the world that it is easy for us to forget it.

The last section of Kaufman’s book deals with the parts of hospitals in which we place people who exist in the interstitial space between life and death.  The specialized unit, the “zone of indistinction” as she chillingly refers to it, where reside individuals whose lungs and hearts have stopped doing the work necessary to keep them in the realm of the living but who are artificially maintained in limbo by the use of machinery that breathes or pumps blood for their failed organs. 

This part of the book makes for terribly sad reading.  Even if you know before coming on material like this that such places exist, the details and the realization that the number of people existing in such states is in the tens of thousands across the country, and that some of them have been lying in such a state for a decade or longer, is almost more than one can bear.  Add to this that fully half of the physicians attending such people consider them to be clinically dead.

I grant that some families are certainly cheered by the ability to maintain some physical connection with a loved one in this manner. I can scarcely even imagine the emotional weight of the responsibility to determine when and if someone you love who was being maintained in such a state should be pushed out of the interstitial space into death.

How much better will our technology become at blocking our passage from the realm of the living to that of the dead while yet failing to restore us fully to life? It is a near certainty that the numbers of our fellows existing in those wings of hospitals, lying unaware while family members visit over months or years, will grow.

Does that mark progress?