While medical science has given us the ability to extend life, it does not ask – or answer – the question of if that extended life still has meaning. I read this book last year, but never got around to summarizing my notes. It is written by Dr. Atul Gawande, the author of “The Checklist Manifesto”. In this book, Dr. Gawande calls for change in the way medical professionals deal with illness and final stages of a patient’s life.
The Central Argument
Modern medicine has provided tremendous benefits, transforming birth, injury and infectious diseases from painful death to manageable treatment. However, in the big scheme of things, the goals of modern medicine run exactly opposite to the well-being of a human. The incentives of modern medicine is to prolong death, no matter at what cost. Often this extension comes at the expense of the quality of life of a patient.
A better incentive
If the incentive should not be to avoid death at the cost of quality of life, is there an alternative? The answer is in the second chapter, “Things Fall Apart”. The job of any doctor, is to support quality of life, which usually means two things:
- as much freedom from the ravages of disease as possible, and
- the retention of enough function for active engagement in the world.
Most doctors treat the disease and figure that the rest will take care of itself. If it doesn’t - well, then it’s time to send the patient to a nursing home. This is a medical problem. Give modern medicine a disease, and it can do something about it. But give it an elderly woman with high blood pressure, arthritic knees, and various other ailments, when the elderly woman is at risk of losing the life she enjoys–and doctors hardly know what to do and often only make matters worse.
The real issue
It is not death that the very old fear. It is what happens short of death - losing their hearing, their memory, their best friends, their way of life. There is a line in the book which really made me think: “The assisted living and the elderly nursing homes aren’t really built for the sake of older people so much as for the sake of their children”. We want autonomy for ourselves and safety for those we love. What happens when those we love want their autonomy, as well? This is indeed a paradox.
Many of the things that we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe our sense of self. The elderly are left with a controlled and supervised institutional existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about. The three problematic issues of nursing home existence are: boredom, loneliness, and helplessness.
As one nears his end, one does not seek power, or more riches. They only ask to be permitted, insofar as possible, to keep shaping the story of their life in the world. To make choices and sustain connections to others according to their own priorities.
The insight from the book is to avoid unnecessary intervention - resisting the urge to fiddle and fix and control. People with serious illness have priorities besides simply prolonging their lives. Top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware and not being a burden on others. The technological medical care has failed to meet these needs. Spending one’s final days in an ICU because of terminal illness is a kind of failure. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process that might help change perspectives of modern approaches towards death.
As I read this book, I couldn’t help but reflect on the amazing lives both my grandparents, who are both in their late 70s, are living back in India. As we live in a big joint family, they are surrounded by all their relatives all the time. They get to see their grandchildren every day. Almost every year they visit the homes they grew up in. They still get a major say in big decisions in family, such as marriage (and they keep pestering me). All my extended family members consult them for advice. Although they have the common health issues brought by the old age, their days are filled with joy and pure happiness.
As much I enjoy my newly acquired Canadian personal freedom, I do want the same quality of life shared by my grandparents, surrounded by the pestering relatives, uncles and aunts who are always in your business. It has it’s own meaning.