I recently finished reading this book. I had read Atul Gawande's earlier two books - Better and The Checklist Manifesto and had been impressed by both. This book also has the familiar Gawande style - incidents from his practice interspersed with various insights into the issue.
Many years back, when I had healthy kidneys, I had briefly studied a Jain text called 'Vairagya Shatak'. I vividly remember a line from that text - '.... tinni jana anulagga, rogo-a, jara-a, macchu-a' which roughly translated to '(Once an individual is born), three people run after him - disease, aging and death'. During those days, I was too young to understand the importance of that line. I was invincible. None of these could catch up with me! Or so, I thought.
Gawande's book talks about people in their last few years and the challenges healthcare faces today in looking after them. He emphasises that what is a priority for medicine may not necessarily be the priority of the people being treated.
He highlights the need to give people a purpose in life. He narrates the happenings at Chase Memorial Nursing Home where eighty severely disabled people were being nursed. The nursing home was a depressing place to be, with strict routines, fixed times for everything from waking up to eating to sleeping. Until Dr. Bill Thomas entered the scene. Dr. Thomas tried an experiment. He enlivened the place by putting in green plants in every room, creating a vegetable and flower garden and bringing in animals. The authorities and the staff balked at first but decided to give it a shot. The results were amazing. Outcomes improved dramatically. The number of anti-depressants people were taking reduced.
The above experiment is a lesson to a lot of healthcare experts. Even on dialysis, I strongly believe, people should work. A purpose in life is often what differentiates people who do well from those who don't.
Another important thing that Gawande explains in his book is independence. Even the elderly like to be independent. He explains how people preferred to stay in centres where they had individual apartments with a door that closed to common living areas where people did not have any privacy. Even though, at first thought, it might seem that having such apartments might be risky for the elderly (should there be a fall or something), the amount of control that is lost by not doing so can play a huge part in keeping the person depressed.
Healthcare professionals have been conditioned to save lives. They are not, however, taught about the importance of the quality of life after it is saved. What purpose is saving a life if it is sustained by means of a feeding tube or on the ventilator? He advocates that people who are particularly vulnerable be asked, well in advance, what is important to them? "...what trade-offs he was willing to make and not willing to make to try to stop what was happening to him?"
For some people, complete physical paralysis, for example, may just not be acceptable. For some, just being around to see their grandchildren play, even if from a wheel chair might be good enough. The important thing is each of us is different. This is what medical professionals must realise.
This applies to anyone with a chronic condition as well. It is important for us to think through what we would be willing to compromise on should things come to that. And then give an advanced directive to our kin. The directive could be simple answers to the following questions: (from Gawande's book)
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?
You could also have answers like - try this for x days only.
If we don't do such a thing, these decisions are left to people who would not know the answer and we would be putting them in a very difficult situation.
I would recommend this book to every person in healthcare even if he or she is not caring for the elderly.