Next week on February 10 Frontline will air a feature following writer and physician Atal Gawande as he explores relationships with patients nearing the end of life. It’s one of many examples of the extraordinary impact his new book Being Mortal: Medicine and What Matters in the End has had on the national conversation around death.
This new conversation about death has been dominating headlines and casting light on the failure of health care and medicine to help people navigate the final stage of life. From my perspective it feels like a genuine shift in public attitude is underway and I’d like to know if our readers agree.
Ironically, this conversation kicked off in September with a horribly ageist essay by Dr. Ezekiel Emanuel about why he didn’t think life was worth living past age 75. He argued that all medical interventions and efforts to prolong life should be abandoned after age 75 because older people have little to offer society and increasing frailty and illness reduces their quality of life.
His essay only lacked the suggestion we recycle old people into Soylent Green to make it perfect satire. Fortunately, greater minds than Emanuel’s quickly weighed in on the subject.
The real game-changer on death came the following month when Gawande’s book entered the conversation. It became an instant bestseller and elevated the topic of aging and death to the highest level of media attention I’ve seen.
Being Mortal touches on similar theme’s to Emanuel’s pessimistic rant. But this passage by Gawande perfectly captures what Emanuel was probably feeling but totally failed to grasp:
Medical professionals concentrate on repair of the health, not sustenance of the soul. Yet- and this is the painful paradox- we have decided that they should be the ones who largely define how we live in our waning days. For more than half a century now, we have treated the trials 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 more for their technical prowess than for their understanding of human needs.
That experiment has failed. If safety and protection were all we sought in life, perhaps we could 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.
There’s an assumption that our society’s dysfunctional approach to aging and dying is a consequence of our fear and reluctance to talk about death. I’ve often made that argument. But our feelings about death and how it relates to the health care system are much more complex. As health care report Sarah Kliff posits in a brilliant essay for Vox, Gawande’s book makes it clear the debate is more about autonomy than death. Kliff writes:
This conversation is really about autonomy. It is about what makes life worth living, and if, in keeping people alive for so long, we are consigning them to a fate worse than death.
Autonomy is at the heart of every decision we, and our loved ones, have to make when it comes to living with frailty or facing death. As we lose functional independence, it is our autonomy that is quickly sacrificed in exchange for “safety” and in favor of the routines of medicalized, institutional care.
And when we lose track of what makes life worth living (often in desperate pursuit of life itself), we truly see the limitations of highly medicalized system of care. There are genuine reasons to fear a highly medicalized death in America today. As Dr. Ira Byock points out in the recent New York Times op-ed Dying Shouldn’t Be So Brutal:
Since 1997, the Institute of Medicine has produced a shelf of scholarly reports detailing the systemic dysfunctions, deficiencies and cultural blinders that make dying in America treacherous. Most people want to drift gently from life, optimally at home, surrounded by people they love. Epidemiological and health service studies paint an alarmingly different picture.
Byock is a pioneer of palliative care and hospice and literally wrote the book the Best Care Possible at the end of life. He argues in his op-ed that better approaches to end-of-life care are both feasible and affordable, if only consumers would demand it.
Those of us who have been on a quest to transform care have been standing on a two-legged stool. We’ve demonstrated higher quality and lower costs. Missing is the visible, vocal citizen-consumer demand. Without it, large-scale change will not happen.
This argument will sound familiar to fans of Dr. Bill Thomas and our readers active in the culture change movement in long term care. It can be different. The models to improve both long term care and end-of-life care have been developed, tested and proven. What will it take to get them enacted on a larger scale?
The answer to that question is going to be a major focus for ChangingAging in 2015. It ties directly to the theme of Dr. Thomas’ upcoming national #DisruptAging Tour (details to be released soon). I would love to know if our readers are seeing similar changes — ESPECIALLY readers who are currently facing end-of-life decisions, either for themselves or loved ones.