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.
The awareness of death as a part of life one cannot avoid, and thus the intense interest on being able to set conditions to make it gentler, has got to be in some part because of the leading edge of the Boomers ( and not we are not a monolith)is just about 70 and both handling parents’ deaths and at long last facing their own mortality. The great trust in science and medicine that this group was raised with has given away to shock that the “machine” has gotten out of control – in that unthinking treatments to “cure” some problems create far worse ones for the person.
So I think this is a generation where many are ready to take personal control of their own demise to the extent possible. I don’t think everyone is talking about it, and I do think that many have a completely unrealistic idea of what the process is like. Someone responded to a recent NYTimes post ( “Seeking a Beautiful Death” by Jane Brodie) about dying noting that there seemed to be a new competition to create a “perfect dying” surrounded by loving family and friends, segueing from life to ?, which ignores the fact that many of us do not LIVE surrounding this way….
I hold onto a story about my mother’s father, a hard headed farmer who left a hospital to consult with an equally old and pragmatic GP: the GP confirmed his beliefs that he was definitely dying, and told him he could do it at the hospital or just stay home and save the money, which is what he did. It was once the norm; then we developed faith that professional medical care made everything better,or at least neater; and now we are re-examining how we CAN use medicine, but with conscious choice about what fits at a given time.
rosemary weston says
before the greenhouse project came along, i thought i would rather kill myself than go into a nursing home..”.too be or not to be…” “it is a far far better thing….” death would be preferable to such a horrible existence. but there are certainly other alternatives. old age can be rewarding and productive in it’s own way as every other time of life is in it’s own way. there may be times when “assisted suicide” or “pulling the plug” may make sense, but not because of old age…that would be a great loss! our society needs the wisdom of it’s elders…each age has strengths and weakness that are different and we can help and learn from each other.
I work in health care and still see terminal patients grasping desperately to life, frequently refusing to go to a hospice program often supported by their families. On some levels there is discussion about death, but for many of those dying, is about living.
Karen B. Kaplan says
I think the resistance to letting someone “die naturally” is less about fear of death and more about fear of engaging in the grieving process. –Hospice chaplain Karen, off offbeatcompassion.com
Karen–this really resonated with me. Thank you for your insight!
Thomas Rowan says
Maybe the shift is to embrace the reality of living by “AND”.
I read Ezekial Emanuel’s essay much differently………he never advocated that his position be anyone else’s position. He raised something for consideration: why opt for medical procedures that might reduce one’s quality of life or one’s view of what is acceptable for him/herself. His personal choice was that 75 was a good age to attain, and that he would want to keep living but wouldn’t accept extensive medical intervention. As an individual who is working to bring “Death with Dignity” to California, I found it an eminently reasonable position, not ageist at all. It all comes down to personal choice.
Kavan Peterson, Editor, ChangingAging.org says
Read this: http://www.salon.com/2014/09/27/the_atlantic_is_wrong_about_aging_why_our_anti_elderly_bias_needs_to_change/
I also agree with many of Emanuel’s points. However, the ageist subtext is undeniable, and it is rampant throughout our society.
Ann MacKay says
I want to be part of the discussion. I have read Being Mortal and now have The Conversation: A Revolutionary Plan for End-of-Life Care. I watched my 95 and 96 year old parents being sent to the hospital days being they died. It was not necessary. They both died within days fortunately not in the hospital. There has to be a better way.
Rich Mayfield says
I’m not sure ad hominem attacks are helpful in this important discussion. I think we can disagree with Dr. Emmanuel without impugning his intelligence or writing style.
Kavan Peterson says
Thanks Rich, that is good advice. I found his article so deeply frustrating I couldn’t find strong enough words to articulate my disagreement — hence the sophomoric ad hominem attack. But given his work on ACA I figure he’s grown pretty thick skin 🙂
Perfect! I’m a fan of Atul Gawande’s work, and others who have begun this conversation (Katy Butler for another). Is there a national organization or registry that allows us to add our voices to a well crafted demand for better, more compassionate end of life care and education? If you can point me in the right direction I’d appreciate it greatly.
I’ve spent countless hours looking for well written and valid books on aging and dying as a normal part of life. The few I’ve found are a good start but the definitive word here is “few”. The level of denial around both aging and dying would be comical if it weren’t so very tragic.
Thanks for all your great work!
dalvacat… for your library: Beyond the Veil: Our Journey Home by Diane Goble