We may fear it, deny it, or avoid thinking about it, but in time it will come to all of us. No matter how alive we feel now, eventually we will come to the end of the line. What kind of ending do we hope for?
Unless you carefully express yourself on the matter, it is likely you will end up in a hospital hooked up to a collection of tubes and monitoring machines. Is that what you want? Medicine’s focus is on prolonging your life, repairing the breakdown of your bodies, using its technical arsenal to extend your life.
In Being Mortal: Medicine and What Matters in the End, Atul Gawande, says this approach has failed. It has failed because it neglects the quality of life at its endpoint.
We are living longer, healthier lives but our body eventually breaks down. Medicine’s model is to fix the broken parts, usually by hospitalizing you, where you are stripped of control of your life and subject to treatments that more often than not only increase your pain.
The story begins with the breakdown of teeth, bone density declines, lung capacity decreases, the brain shrinks, working memory and judgment are impaired. Old age is a continuous series of losses. Eventually these losses accumulate to the point where daily life becomes more than we can physically or mentally manage on our own.
This was not a problem when individuals lived in a multigenerational home where one or more of their children could assist them. In contemporary society this type of household is rare. Very few of individuals in their 70s or 80s live with their children, in fact, most live completely alone.
“There remains one problem with this way of living. Our reverence for independence takes no account of the reality of what happens in life: sooner or later, independence will become impossible. Serious illness or infirmity will strike. It is as inevitable as sunset.”
The consequence is that doctors try to extend life for as long as possible, dosing people with mind-numbing drugs, shocking their hearts back in action, delivering painful chemotherapy with unknown effects. He cites data that 25 percent of all Medicare spending is for the five percent of patients who are in their last year of life and that most of that money goes for care in the last couple of months that is of little apparent benefit.
Gawande reports that medical interventions for people in this stage of life cause more harm and suffering that doing nothing. “…terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions or admitted near death to intensive care had substantially worse quality of life in their last week that those who received no such interventions.”
Being Mortal describes several alternatives to medical treatment at the end of life. Gawande considers nursing homes, most of which have a checkered history and explores the benefits and drawbacks of assisted living centers, hospice and palliative care. There are enormous variations in the quality of care in each of these settings.
He asks readers to discuss the type of life they want at its end with their doctor. Is there anything that makes this stage of life worthwhile? Each of us probably has our own answer. Many want to be at home, others with their family. He describes one program that brought children, plants, and various animals into a senior housing setting. Compared to the period before this intervention, the director reported that drug costs fell by 38 percent and deaths declined by 15 percent.
Most people fail to discuss their end of life care with their physician, leaving them at the mercy of hospital treatment. In the event that happens, it is important to make clear your answers to four crucial questions:
1. Do you want to be resuscitated if your heart stops?
2. Do you want aggressive treatments such as intubation and mechanical ventilation?
3. Do you want antibiotics?
4. Do you want tube or intravenous feeding if you can’t eat on your own?
Ideally you should also give you doctor a notarized Advance Directive Form that is legally binding in your state.
Toward the end of Being Mortal, Gawande briefly discusses euthanasia. He critiques the end-of-life policy in the Netherlands in the belief that as a doctor “our ultimate goal is not a good death but a good life to the very end.”
The book is liberally sprinkled with case histories that document Gawande’s central themes.
“I never expected that among the most meaningful experiences I’d have as a doctor—and, really, as a human being-would come from helping others deal with what medicine cannot do as well as what it can…When to shift from pushing against limits to making the best of them is not often readily apparent. But it is clear there are times when the cost of pushing exceeds it value.”
Being Mortal is a difficult book to read, some will find it irrelevant to their life, others will find it quite timely. Most likely it depends on your age. But its difficulty is more than outweighed by the quality of Gawande’s writing and his honesty in discussing mortality.
