On Being Mortal

Ken and I have written a lot about disease causation, prediction and prevention but we haven't written much about the other side, when prediction, prevention and treatment aren't enough, when disease becomes fatal.  We have just read Dr Atul Gawande's book Being Mortal, a beautifully written heartfelt exploration of the end of life.  Dr Gawande is a surgeon at a major teaching hospital, and a professor of health policy, and his job is to save lives, and to teach medical students how to do the same.  He is presumably very good at this.  In the book, though, he writes about the process of learning how to be a doctor when there is no cure and he can't save a patient's life, something he didn't learn in school, and that has taken him decades to learn.  Presumably these are lessons he now teaches to his students, to the great benefit of us all.

Dr Gawande tells his story through many case histories, including that of his father, as he made decisions about how to live, and die, with an untreatable cancer.  He told some of these same stories in the BBC Reith Lectures last fall.  He writes about the tremendous regret he now has about instances in which he just was not able to have the kind of conversation with a dying patient that he now knows he should have had.

We are used to two common medical models, he says, the 'paternalistic' model of the 1960's, when a patient could be treated with a blue pill or a red pill, and the doctor made the choice. "Take the red pill.  It will do you good."  Then, the 'information' model took over -- the doctor supplied information, telling the patient that his/her disease could be treated with a blue pill or a red pill, explaining the pros and cons of each and then asking the patient to choose.  But, we don't face the end of our lives statistically, and weighing the pros and cons of different treatments is not what helps us make decisions about how to proceed, which is what Gawande finally realized after too many painful conversations with his very sick patients.

When terminally ill, a patient is overwhelmed with fears and concerns, and recognizing and acknowledging these is the truly important role a doctor can play when a patient is facing life-threatening illness. After much thought, hundreds of conversations with gerontologists, palliative care physicians, managers of the best assisted living facilities, and with patients, Gawande has come to see that there's another model, the 'interpretive' or 'shared decision making' model.

Gawande now asks his patients, What are your priorities if your time is limited?  What are your goals for treatment?  What are your fears?  And what trade-offs are you willing to accept as a result of your care?  And, he, the patient, and the patient's family choose the course of treatment with the patient's answers in mind.

One patient said that as long as he could watch football and eat chocolate ice-cream he wanted to keep living, so treatment continued for this man longer than it did for, for example, Gawande's father who said that he wanted not to suffer, did not want to be paralyzed, and if he couldn't enjoy seeing friends and family, he wanted no more treatment.  So, he refused further chemotherapy when the trade-offs were no longer acceptable to him.

In modern medicine, it's important to recognize that 'no cure' is not the same as 'no treatment'.  There is almost always something else that can be tried, some heroic measure, some experimental surgery or medicine that can be used to give a patient hope, or even a little more time, even when the illness can't be cured.  Doctors are very good at plugging ahead with all of this, without stopping to ask their patients the kinds of things that Gawande now asks.  The proper goal of the medical system, Gawande now believes, is not to stave off death as long as possible, or even to make a good death, but instead to assist in assuring "a good life to the very end."

According to Dr Gawande, modern medicine is very good at a lot of things, but preventing and treating aging and death are not among them.  Until the 1950's, people in the developed world most often died at home.  Then, increasingly, as it became more and more possible for medicine to intervene in the process, people began to die in hospital -- indeed, at ever increasing expense.  Now, however, people are beginning to choose to die at home again, and the hospice movement is largely responsible for making this work as well as it can.

The primary role of nursing homes (an industry which, according to Gawande, began to grow when the number of hospital beds for the elderly wasn't sufficient once aging and dying were medicalized) is to keep the elderly safe, but at the cost of lost privacy, dignity and control over one's own life. Nursing homes are run for the convenience of the system, not the residents. Fortunately, there are increasingly alternatives that allow people to 'age in place,' in their own homes, or if that's not possible, in an assisted living alternative, with as much or as little aid as they want or need.  

If Gawande's book is an indicator that we are wresting aging and dying back from a system that appropriated it, at great cost in money and suffering, it is reminiscent of the movement to demedicalize pregnancy and childbirth, with the increasing popularity of birthing centers and home births, or of menopause, which once meant hormone replacement therapy for all but no longer does.  There are many things modern medicine does very well, of course.  But there are things it can't and will never do well, including preventing aging and death.  

Still, many people do opt for heroic measures at the end of life.  This is in a sense because of the hope that they can be cured, and perhaps a deeper yearning for immortality.  Is this because medicine has over-promised?  Surely in part.  As Gawande says, patients are usually thinking in terms of 10 or 15 additional years when they hear that yet another treatment can be tried, not weeks or months, but it's more like weeks or months that these heroic measures have to offer.  

But this over-promising is nothing new.  Genetics has been doing it for decades, and the new commitment to precision medicine, genetics and so much more, is more of the same.  Some of this is because of snake oil salesmen, certainly, but not entirely.  Just as we have to blame Trump's popularity not just on Trump, but on the people buying his 'message' as well, it is the age of genetics because the people have bought the message being sold.  This isn't so different from the promise of miraculous cures by some religions (or mountebanks).

Surely there will come a time when we recognize that all that has been promised just can't be done, we won't be able to foretell our medical, academic, economic, or romantic futures from our genomes at birth,  and we'll understand that geneticizing our lives is as much over-promising as is the idea that one more experimental chemotherapy is going to finally cure our incurable disease.    

We put our faith in medicine when we are most vulnerable, hoping against hope that it will save us.  Perhaps it was the miracle drugs of the mid 19th century that encouraged this faith -- antibiotics really did save lives.  And then technology -- kidney dialysis and heart transplants, hip replacements and triple bypass surgeries.  We're very good at technology.  But, we still don't really understand cancer, or mental illnesses, or the cause of so many diseases.  And we won't be able to predict complex disease from our genes (which we've written about many times before on the MT), and we certainly can't prevent aging or death.  Despite the promises.  

Atul Gawande's message is sane and oddly reassuring, but as such it's a radical one as he aims to return control of a patient's present and future back to the patient.  This is a challenge to vested interests, yes, as well as a challenge to the usual way medicine is done in the industrialized world.  But it's a welcome and important one, because it's something we all will face.