Being a successful patient means educating yourself about your body, about the health issues you have. It's also about knowing yourself, what kind of life you want, and how to live when you're dying. Well, technically, we are dying from the moment we are born. But after about age 50, mortality starts to become much more of a subject for thought and for planning. We live in a society that focuses on youth and good health. As a result, we don't know how to talk about dying or how to live in the face of our mortality, i.e. the last months of living in old age or when terminally ill.
Since my lung illness last year, I've been thinking more about mortality. But like anyone, I really didn't want to think seriously about it. I still don't. I'd heard about a surgeon who writes interesting books about his work and was curious to read his books. His name is Atul Gawande and he's a general surgeon in Boston. The first book of his that I found was Being Mortal: Medicine and What Matters in the End. I borrowed it from the library. Reading the front inside cover copy, I wasn't sure I'd picked the right book. But then I decided to read it anyway.
I'm glad I did. Dr. Gawande writes about what medicine does right and what it does wrong when doctors treat elderly people or those who are terminally ill. He writes about how he was trained to heal, to cure, to treat, and to be informative so that patients could choose treatments. He wasn't trained to help the elderly and terminally ill to make choices of how to live in their final months. Describing cases from his own medical practice, he writes honestly about his own feelings of inadequacy, frustration, and confusion about what was expected of him and what he should do. His tone is real, human, warm and personal, and I found it hard to put this book down, even when a story brought tears to my eyes.
Dr. Gawande searched for answers for other doctors and for us. I'm grateful that he wrote this book and shared his hard-won wisdom. It has helped me to think about my own mortality and my own wishes. Dr. Gawande learned that it was necessary to ask patients questions about what they wanted in their lives, no matter how sick they were. It wasn't about medical treatment, but about living well when sick, failing in health, and dying. He sums it all up:
"We've been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?"
There is one thing any adult can do as a first step in this process: do an Advanced Directive (find an example here). This is a legal document that spells out your wishes on paper so that if you are ever incapacitated and cannot speak for yourself, it provides medical professionals, family and friends with a legal record of your wishes. It also provides the names of at least 2 people whom you'd trust speaking for you. I've done one. It takes some time, but it's worth the effort. I spoke with my Primary Doctor about the technical medical details. I asked two people I know will honor my wishes to be my medical proxies, and gave them copies of my Advanced Directive.
Doing the Advanced Directive forced me to think about my beliefs about living, dying, and medical care. It is a tool for starting conversations among family members about end-of-life decisions. It is a huge step toward answering the questions Dr. Gawande wrote in his book. As a successful patient, I've found that being prepared gives me the power and the control that I need when dealing with doctors, nurses, and other medical professionals.
My father didn't have an Advanced Directive. At that time, in the mid-1980's, there really wasn't a document like that that an individual could fill out, sign and notarize. My father told us what he wanted. Even then, it wasn't enough because he could not have anticipated everything that was going to occur. Fortunately, Hospice provided my mother with much needed relief by sending a volunteer to stay with my father, take him on drives, and help out. My mother hired a part-time nurse also during the final months. What would have been especially helpful? To know exactly what happens to the body in the final weeks and days before death. I think this would have helped us immensely. But it's hard to ask that kind of question, and we really didn't know whom to ask.
Thanks to Dr. Gawande and his book, I now have a much better idea of what to expect and how I want to live out my last days. I highly recommend it for everyone.