A close friend recently recommended the book, Being Mortal, by Atul Gawande. She thought it might help me. You see, my mother’s health is failing. She has severe dementia and is in a memory care residence. Gawande’s book has powerful messages and has helped me on the journey I am now on with my mother.
Gawande addresses current end-of-life care and presents a powerful alternative within the medical establishment and in our families. The book focuses on medical procedures and living conditions in later life. Through case studies, stories from his own life, and examples of individual experiences, he builds a strong case for reform.
When discussing living conditions, Gawande speaks to the reality that as people near end-of-life, decisions about their living situation are primarily aimed at ensuring safety at the expense of maintaining quality of life which can vary from person to person. He discusses the evolution of end-of-life living conditions. In the mid 1900’s the majority of deaths occurred in the home. By the 1980’s just 17% died at home. The experience of advanced aging and death shifted to hospitals and nursing homes. Then came the introduction of assisted living. Gawande also discusses the benefits of hospice and cites that almost 50% of Americans die in hospice.
He discusses how modern medicine is continually trying to “fix” old age with this treatment or that surgery, instead of managing care for quality of life. He strongly recommends that doctors need to have the hard discussions and to help patients determine what they want. Patients have priorities other than being safe and living longer, they want the chance to shape their own story. They need doctors and caregivers to empathize with them and help them find their own joy and comfort in their remaining days.
Here is how Being Mortal resonated with me: I think everyone should read this book. The topics he discusses apply, or will apply, to all of us. Gawande writes in a very passionate, personal, and sincere way. Here are some specific themes that spoke to me, which I share with the hope they will help you someday.
The book helped me feel better about having hospice care for my mother. Several weeks ago, my mother stopped eating and getting out of bed. As a result, the director of the memory care unit, along with my sister and I decided to bring in hospice. When “hospice” was first discussed, I was completely overwhelmed. To me hospice equaled “my mom is really dying.” Something I was in no way prepared to handle. I was in total resistance to the fact that my mother was in her final chapter of life. I have come to realize that hospice is here to help my mother have the fullest possible life right now. They also have a wealth of services to help not only the patient but all the family members. This is the best situation for my mother and us.
I also feel better about our decisions regarding my mother’s care. First, I remember her primary care physician wanted my mother to continue preventative care including mammograms and color cancer screenings. The physician also wanted my mother to see memory care specialists and have a multitude of tests run. My sister and I both said “No.” We knew these were things my mother didn’t want to go through. Also, with the help of hospice, we decided to discontinue her medications. Both decisions, while very difficult to make, were consistent with our goal for her of quality of life.
Probably most importantly, I learned just how important it is to see this phase of my mother’s life as one with meaning. Now that I have come to some level of acceptance of my mother’s situation, I am better able to help her create that meaning in her life.
Our situation is a little different than the examples in his book. The aging people Gawande discusses are able to express their desires. With my mother’s dementia, that is not possible. We, her children, need to speak on her behalf. One thing that is very important if you face this situation is to have all the siblings on the same page. This helps everyone focus on caring for their loved one and making the most of the time remaining.
I will end this article with my favorite line from the book. “You live longer only when you stop trying to live longer.”