Scientific advances, says Dr. Gawande, have turned the process of aging and dying into a medical experience to be managed by healthcare professionals.
The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver's chance of benefit. They are spent in institutions...where regimented, anonymous routines cut us off from all the things that matter to us in life.
Gawande deftly lays out the path by which we arrived at our current "continuum of care" model - the route from independent living to assisted living to nursing home care to dementia care. In theory, it's a nice enough idea but, in reality, it has created a medical environment focused on safety and survival that strips individuals of the dignity of autonomy, removing them from the known and familiar, which are so crucial for maintaining meaning and equilibrium as faculties begin to dull. They are left floundering in a world of strange confusion in which they have little if any control over the simplest daily routines such as when and what they eat, whether they get dressed and what they wear, whether they take a walk outdoors or stay in bed for half a day, whether they accept or reject a specific treatment.
Dr. Gawande provides a helpful service in tracing the history of and highlighting various efforts to shift our approach - and therefore our model - of eldercare, but his greatest service is in addressing the fundamental reasons why we are getting it wrong.
The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine's focus is narrow...concentrating on repair of health, not sustenance of the soul. Yet...they are the ones who largely define how we live in our waning days. ...we have treated the trial of sickness, aging, and mortality as medical concerns. It's been an experiment in social engineering putting our fates in the hands of people valued for their technical prowess...and that experiment has failed. If safety and protection were all we sought in life, we might conclude differently. But because we seek a life of worth and purpose, and yet are routinely denied the conditions that might make it possible, there is no other way to see what modern society has done."
We unwittingly set our loved ones on a trajectory of unstoppable momentum of medical treatment that, ultimately, controls their narrative. We remove their agency, making decisions on their behalf and imposing treatments and solutions "for their own good" whether or not they want it. In so doing, we wrest from them the ability to author their own stories, the freedom to shape their lives in ways consistent with their character and loyalties.
The battle of being mortal is the battle to maintain the integrity of one's life - to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be.
Our mortality is certain and for most of us, that end will be reached through a prolonged process of aging and dying. We don't get to control the circumstances of that process, but we ought to be able to choose what we do with those circumstances.
I commend to you Being Mortal - Medicine and What Matters in the End as a worthwhile read. Dr. Gawande not only tracks where we've come from and where we are today, but he also proposes options for where we go from here, and how - with some thought and intention - we can transform the process of aging and dying into a more wholistic and human one. Because after all, he affirms, every life is a story and in stories, ENDINGS MATTER.
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