Wednesday, September 13, 2017

Being Mortal - Atul Gawande

Atul Gawande explores life and death - or more precisely death from the eye of the living and the about-to-die. He looks at life from the eyes of the old and dying - the sudden oncoming of illness one fine day, the distance from people, the lack of support and care, the feeling of helplessness. He discusses roles of hospitals, doctors, nurses, caregivers and the patients. He comes to the conclusion which to me also defines what marks a thoughtful person - someone who gently helps make a decision for the other person - not seemingly the right one all the time, because the person may not be capable of handling the right choice, but the choice that is best, given the circumstances. In this case it is the decision regarding how and when you may want to die and what is important to you and what is not. Can the doctor help you decide on it yourself to some extent when you still can?
Penguin, 263 p, Rs. 399
There are so many stories and examples - of the fiercely independent Alice who suddenly had to go through many indignities of the illness because no one cared to ask and her life (and death) was taken out of her control. The case of Lou who was well taken case of by his daughter Shelley (Atul says that one is better off having s single daughter because daughters seem to go to great lengths to take care of their parents). Shelley does a great job and Lou's life after his debilitating illness recovers some. Young mother diagnosed with a terminal illness and then his own father, a doctor, with a cancer growing in his spine. Each story heads to a grim end but what Atul is worried about is the period between knowing your life is now finite and choices are now limited and how do we cope best. One example that stands out is the case of Harry Truman, the old man who refused to leave his house in the wake of a volcano about to erupt and who chooses to die with his dogs and in his house - a case where he chose and got an end he wanted.

Atul Gawande discusses nursing care, hospices, assisted living spaces, old age, medical expenses and quality of care. The extraordinary experiment of Bill Thomas who decided to add life into the lives of terminal patients for whom life was fast going out. So he added 'life' in the form of dogs, cats, birds, plants and even children visits and gave them all exposure to life and even a purpose to live. Certainly a fine experiment. Somewhere he says - we seek a cause beyond ourselves. Words Viktor Frankyl would agree with.

The three plagues we deal with in old age are - Boredom, Loneliness and Helplessness. How can we help the old and the inform to counter these productively. A little creativity and more importantly, caring and thoughtfulness.

Atul stresses on the need to have the hard conversations. To state the brutal facts and not sell illusions. That way they can make clear choices and plan their limited time better. I was guilty of not telling my mother the extent of her illness and perhaps her last years were not as fruitful as they could have been. Now I advise anyone who has a parent who is diagnosed with terminal illnesses to give them the facts - it helps them deal with it better because they at least know all the facts. Among other things Atul advocates is to figure out what their goals are - if you lose these faculties what do you want, what would you like to do if this happens etc.

Questions typically asked were like
Do you want to be resuscitated if your heart stops?
Do you want intubation/ ventilation?
Do you want antibiotics?
Do you want tube or intravenous feeding if you can't eat on your own?

Also to look at the trade offs. This operation is doing this to you and this is possible but what do you want? Like someone wanted to be able to watch football and eat ice cream and if that surgery enables that, he was willing to take that risk. Else not. So the doctors worked around that and took their calls accordingly.

'I am worried for you' says Atul to a patient who seems to have fully recovered and is now planning a vacation but whose reports now show that the cancer has come back. He says the words must be chosen with great care. All options presented and course of action taken then. He cites types of ways in which doctors deal with patients - paternalistic information (take it, its good for you) and shared decision making where the doctor helps a clueless and distressed patient make decisions that are most important to him.

It is a book that makes one think about old age and the decisions that one needs to make now in those years when one is losing their faculties. Old people hate losing control over their lives, anyone would I guess. So living away from home in a place that does not seem like home (regimented) makes them die before they die. But they need help because most of them start falling and hurting themselves, cannot drive or perform basic functions by themselves. The assisted living parts really took care of their needs while giving them the independence and comfort of their own spaces.

There is some talk of money and financial planning but then nothing can buy full comfort because the illnesses he describes leave no chance for recovery. A bit of love and care from some - like the Tolstoy story where the servant Gerasim takes care of his dying master with great love, seems to help a lot. Another tidbit I remember, the care of feet when one is sick. And old. Or perhaps even the young.

Wonderful writing on a morbid topic and in a way that sensitizes us to the process. This is my second in recent times after Paul Kalanithi's 'When Breath Becomes Air' dealing with mortality and our choices or lack of them. What stands out is the lack of hope, the anger, the resentment and even the violence of surgeries and procedures. Could we be gentler with our words, our bodies, our attitudes? Could we bring that into the doctor-patient relationship, or even the hospital-patient relationship? Would that then be, like Gerasim's care, an automatic balm, much better than the palliative care and the many invasive methods allopathy offers? Could we let people exit gracefully (like my friend Hari says) and completely?

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