Thomas Hobbes described life as pitifully “nasty, brutish, and short.” Thanks to the free market and the state, life is no longer a Hobbesian nightmare. But death has become nasty, brutish, and long.
Surgeon and writer, Atul Gawande, explores the medicalization of ageing and death in Being Mortal. Gawande points to a glaring deficiency in medical education. Taught to save lives and fight death, doctors don’t bow out gracefully and say enough is enough. We’re not taught about dying. We’re taught about not dying.
In our lexicon, life is a constant war against the Grim Reaper. We say inactivity kills; screening saves lives; an intervention reduces mortality by 5 %—an arithmetic impossibility as mortality for our species, barring select prophets, remains 100%. Words have precise meanings. Words also hide precise desires. It’s not that we can’t distinguish between a murderer and colorectal cancer; but by giving cancer moral agency—we wage war on cancer—we imply that death is an anomaly that must be fought.
And we fight. We fight death in the hospices. We fight death in the hospitals. In many parts of the world, more people die in hospitals than in their homes. Some die, attached to a noradrenaline infusion, in the CAT scan—the last pit stop of hope between the intensive care unit (ICU) and the morgue.
It would be easy to blame doctors, their incentives and egotism and offer fixes—such as fee for value, alignment of incentives, value to stakeholders, and other management speak. But Gawande doesn’t take the easy path, instead exploring death compassionately.
Gawande contrasts two cultures: the traditional east and the modern west. His grandfather, Sitaram Gawande, in a village in India lived fruitfully and died gracefully. He lived with extended family who supported him but didn’t dictate how he should live. Sitaram checked the farmland every night on horseback even at an age when, according to Gawande, he might have been in a nursing home in the United States.
I saw self-sufficiency in my grandfather as well. His family fretted about high blood pressure and his smoking. He would indulge them and then ignore them. He enjoyed their company but remained sovereign in his (bad) choices. I admired his chutzpah.
Modernism’s paradox is that strange calculus between independence and dependence. Individualism has oddly increased dependence. Dependence, that is, with the medical profession. But doctors did not cross this line willfully, even though many crossed happily. They were invited to fill a space that was occupied traditionally by religion, family, and community.
For while the rise of the nuclear family has made many people more independent, it has also left them more lonely and insecure as well—and left many people feeling guilty for ignoring their parents too. The guilt swells when a frail parent is in hospital. Physicians are caught between older patients and their children. For some relatives, medical intervention shows that they truly care, the more aggressively they push for treatment the more evidence that they care. For the doctor, intervention is the path of least resistance.
Zero paternalism hasn’t helped. The doctor no longer knows best, although other cultures are different in this. My grandfather in India fractured his femur after a stroke. My relatives paid for his care as there is no Medicare in India. The CAT scan showed a large brain infarct. Fixing his femur was deemed pointless as meaningful recovery from the stroke was unlikely. After a couple of days of unconsciousness in the ICU, his physician asked my relatives to take him home saying, emphatically, that he needed his family and not an operation.
The physician was paternalistic. He didn’t dwell on what the family might have wanted. The family accepted his judgment. They had no choice. This would be unthinkable in the US. But my grandfather died in his home surrounded by his children and grandchildren, not in a CAT scan. Paternalism sent him home.
Paternalism is a good thing to shun and patient empowerment is a good thing to encourage. But even good things have side effects, and one side effect here is that physicians would rather intervene than risk being accused of undertreatment or paternalism.
Culture explains a lot. Indians are fatalistic. The British used to be stoic. Americans are optimistic. India taught me reality. The NHS taught me limitations. But it was the US that showed me medicine’s possibilities. Reality—Limitations—Possibilities. This is fodder for cognitive dissonance. The “can do” spirit of Americans, that admirable and infectious optimism and hope, means they throw the kitchen sink to extend life. Hope drives medical care: it is a state of mind and can’t be switched off by pressing a button.
Gawande doesn’t patronize the reader with sound bites and solutions. Being Mortal is his best writing, by far. His treatment of death is transcendental and tirelessly reflective. His treatment of death’s prequel, the nursing home, is searing. He indicts politely, but indict he does.
The nursing home is a mirror for healthcare’s warts: regulations that ground innovation, concerns about safety that defy common sense, and—most depressingly—an unwillingness to individualize. Nursing homes have become mirthless, soulless places where the elderly are literally dumped.
Standardization may or may not be good for healthcare, but standardized care for older people in nursing homes is bland. It doesn’t have to be this way. Gawande describes how a maverick physician transformed the mood in a nursing home by bringing in birds and animals. Nuance, not six sigma, ails the human spirit in its twilight.
Physicians can make ageing and dying less medical. Doctors are known to die differently, tending to use less medical care. What’s good for the gander is not good for the goose. Why don’t doctors prescribe thrift to others?
But doctors, alone, can’t beat culture. Modern society obsesses about not dying. Recently, an eminent physician, Ezekiel Emanuel, in an essay wrote that he wouldn’t seek medical care after 75. It was deeply personal writing that somehow offended readers, including physicians. Some interpreted from his writing that an unproductive life is a life not worth saving.
This paranoia over nullifying the sanctity of an unproductive life reaches even the courts, as in the famous case of Terri Schiavo, who was eternally fed in a persistent vegetative state for years despite her husband’s objections. Even President Bush thought it important for her to be fed.
Where demagogues rush, doctors fear to tread. Death’s demagogues are bipartisan. Some warn that people are dying because of toxins. Others caution that in socialized healthcare there will be death panels—mythical committees that deny life saving treatments to save costs. But costs aren’t trivial. Nearly a third of healthcare spending happens in the last six months of patients’ lives—costs that may break apart US healthcare.
Dying is a vexing problem for the medical profession. The “can do” blends with the “won’t give up,” which is difficult to give up. As long as we give health an infinite value we will demonize death. In the age of plenty it is not easy to lighten up about life. But to live a little we must risk dying a little. If we die to live, we will live solely to not die. Which would be an overmedicalized life, and a dull one.
Saurabh Jha is skeptical by nature not because he hates you. He can be reached on Twitter @RogueRad. This post first appeared in the BMJ Blog
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1. Atul Gawande also wrote a great piece in the JAMA Jan 19, 2016 issue devoted to death and dying: http://jama.jamanetwork.com/article.aspx?articleid=2482308
2. I read Paul Kalanithi’s book ‘When Breath Becomes Air’ almost in one sitting. Spoiler alert: his demise is in the ICU.
3. BJ Miller of the Zen Hospice Project very eloquently talks about our struggles with imperfection and impermanence: http://www.ted.com/talks/bj_miller_what_really_matters_at_the_end_of_life
4. In contemporary culture while we focus on colonizing Mars, accepting the inevitability of death feels like a moral failure no valiant human seems to be willing accept.
5. I reminded time and again of Mary Oliver’s fantastic poem The Summer Day:
…Tell me, what else should I have done?
Doesn’t everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?
Nicely written, Saurabh, but I don’t share your outlook on this topic. I’ll just make a couple of points here:
1) “One third of healthcare spending happens in the last 6 months of life.” That’s a fact often mentioned as if it is an obvious indication of waste. But why is that too much? How much should it be? And so far as we can tell, docs are not so good at predicting death. When we do cause all this spending, we don’t always know that death will ensue.
2) As Tomas Szasz noted, Terri Schiavo was loved by her husband, who wanted her dead, and loved by her parents, who wanted her alive. The activity under dispute was hydration and nutrition, hardly a matter of medical intervention. When is a life “unproductive” enough that it is worth “nullifying?” And who decides?
On the walls of the of the individual units in the hospital were notices about how different cultures acted towards death and disease, even particular diseases such as cancer (I often wondered if someone was going to complain about PC and the fact that we are all equal and identical). The destruction of the doctor/ patient relationship makes things much more difficult in todays world where we are able to cultivate vegetables.
Death’s demagogues are bipartisan
I agree – this is not something that the medical profession can solve with our hands tied behind our backs. End of life counselling may help at the margins, but for a wholesale change you need a change in culture, which can’t simultaneously hound people to get screened and then say “oh relax a bit about death.”
I agree that this won’t be solved by regulations, and that regulations have made the care of the elderly worse. I do think fatalistic cultures have a gentler fight against the last throes of death.
I agree – it’s not an easy fix. The opportunity for cure looms larger than the chances of failure.
I don’t recall the right objecting to a living will which has existed for decades if not more. The living will is a creation of the patient.
Perhaps the way the ACA “injected sanity” would be more to your point.
Obamacare attempted to inject some sanity into end-of-life by promoting a living will, but true to form the radial right religionists labeled it a slippery slope to an obligation to die. Further attempts at some intelligent dying is the right to die movement facing uphill battles by those who demand we ignore a patient’s wishes and spend whatever (not their money) to get that last minute of breath.
Medicare now pays for hospice, a good thing.
The war on death is one we will not win.
In the last 50 years we have developed extensive technologies and surgeries for saving life and limb. We have also developed new treatments for previously fatal diseases such as AIDS and many cancers.
We have also extended life spans for many individuals with heart disease and diabetes, many of which would not have made it past middle age 50-75 years ago.
It is rare (but changing, I think) for the dying to be cared for at home, more likely in hospice or a hospital setting, so most modern Americans have little or no experience with death.
Religion or spirituality has declined, which for many may bring a comfort level that after death, a new life may begin. It always astounded me that the Evangelical Christians were so adamant about the Terry Schiavo case, when, after all if there’s a better place beyond this life, why not let her go there? (and I mean no disrespect as I count myself as a Christian).
All the above reasons, plus physicians’ fear of doing something wrong or against someone’s wishes make it extremely difficult to fashion good coherent approaches to death and dying in this modern tech-heavy country.
Someone wrote an article in the recent past either on this blog or another medical blog about “living well”. If we take the approach that death is inevitable, and living well (whatever one’s definition) is the ultimate goal of medicine or health care, we may get somewhere to resolve an unresolvable situation.
Saurabh, in the early years of my practice I had patients that intentionally died at home. I even had patients who wanted to leave the hospital to die, but rules were such we had to make all sorts of pretenses. I am sure that many of my patients that passed away at home accelerated their own deaths. One of these “accidental” and “accelerated” deaths actually ended up at the hospital while I was there. I resuscitated her, a relatively healthy woman compared to those in similar straights. We had a long discussion afterwards which was quite insightful for she admitted that she wanted to die and detailed why. Totally reasonable, sane and considered. She discussed all aspects including the physicians role. I should have had her write up what she was saying and then had that placed into a textbook as an individual chapter. Less than one week later she was dead.
Are the cultures that much different or has society forced the differences to an extreme? I don’t know, but we see movement after movement to counterbalance the rules created by an over regulated and an over polarized society. This is what leads to the controversy over the deaths of people like Terri Schiavo who become pawns to political interests on both sides where each side on a personal basis had good strong reasons for their beliefs. There is too much pushing for a fast and a slow end to life. We need families to independently determine how when life should come to an end.
My daughter and her husband are both oncologists, one medical and one radiation. They comment as to how often people change their minds about “leaving” as they proceed toward that event. Some folks want full-steam-ahead with every conceivable idea tried; and some folks want a peaceful rest to supersede and for the dark curtain to fall. Yet these same folks, two years before, might have held the opposite views and written them in advance directives.
Your writing is wonderful, but I can’t figure out how I feel. Sorry you haven’t convinced me. I would think that patients would also be getting irritated and mad at being cajoled and wheedled–from every angle –to go quickly.