Being Mortal: Medicine & What Matters in the End by Atul Gawande 2014.

I read this for a book group; these are some of the notes I made.

People only die once so we have no experience to draw on.

Before the intervention of modern medicine with its scans to diagnose problems early and its treatments to extend life, the interval between recognising you had a life-threatening ailment and dying was commonly a matter of days or weeks.

Now it is different. Yet, is being housed, fed, kept safe and alive necessarily in itself enough? What more is it we need in order to feel that life is worthwhile? What gives our lives meaning, what cause, large or small, can make it worth making sacrifices for?

Death is still the enemy . But the enemy has superior forces eventually it wins, and, in a war that you cannot win, you want someone who knows how to fight for territory that can be won and how to surrender when it can’t. Someone who understands that the damage is greater if all you do is battle to the bitter end.

So I will probably struggle with the uncertainty of how, and when, to accept that the battle is lost. Will I still hold out hope for a cure. Will I think that the doctors simply aren’t looking hard enough?

Bill Thomas’s experiment at Chase nursing home, the Eden Alternative, gave the people reasons to live and made it possible for them to live out their days wherever they can call home. There is a deep need to identify purposes outside ourselves that make living feel meaningful and worthwhile.

Talking matters, and today in the Social Care system we have in Britain, there is scarcely time to wash the patient, let alone talk. And the way of talking matters too. Not “I’m sorry things turned out this way” but “I wish things were different”. Not “what do you want when you are dying” but “If time becomes short what is the most important to you?”

One of the accounts was so similar to the experience of a friend of ours that I found it difficult to continue reading. The personal involvement certainly changes the rational approach; even though Gawande had become involved in end of life care for his patients, his experience with his father was a revelation to him.

I hope I remember to consult this book again when the time comes.