I recently finished the book Being Mortal: Medicine and What Matters in the End by Atul Gawande. Dr. Guwande clearly articulates what I have pondered and then through a compelling and personal narrative, provides concrete solutions. Even if you think you are not interested in end of life issues, you should read this book. Each of us will eventually face the dilemma of quality versus quantity of life — certainly for ourselves, but most likely also for a loved one. Read this now. Before you are in the crisis.
Dr. Guwande’s book is a call to change the medical and caregiving community from a goal of long-term survival to instead long-term well being.
Remember when you first got your driver’s license and your parents had all type of rules about when you could drive and where you could drive and who could drive with you? It was annoying and frustrating. They did it though because they cared and wanted you to live to see adulthood.
Then you became an adult. And some things you did may have been good decisions. You got an education. You didn’t get arrested (or maybe you did… but hopefully you grew up enough that eventually those type of things stopped happening!)
Some things you did though were not the best actions for a long life. Perhaps you smoked. Or drank. Or gasp… drove a car in traffic! You had the right then though to make those decisions. They may not have extended your life but they did make you happy to live that life.
Then slowly as you progressed through life, the people you cared about starting taking away the ability to make those decisions. You may have heard things like, “you can’t have a dog Mom. He may trip you and you might break a hip.” Or “That bourbon is not good for your health Dad.” Slowly, the right to make decisions that affect our quality of life are taken away and that is not necessarily a good thing. Compounding the problem is the lack of education for doctors working with end of life patients. They are taught to extend life, not enhance it and it is difficult for them to discuss end of life issues or suggest hospice or palliative care.
Dr. Guwande strongly advocates that not everyone can be cured but everyone needs comfort, kindness and the chance to have purpose in life. He recommends bringing pets and children into senior living communities to give the residents purpose. He gives specific suggestions on how to talk to the seriously ill. In particular, I love his approach of asking them what their goals are for the rest of their life and what their fears are. You may be surprised by the answers and the answers can help guide how you help the person in those last years or days they have left.