Just a year ago my little sister sent me an email saying she had heard a review of the book Being Mortal and that she thought I would like it. She knows what I read. I am well versed in end of life care books, such as Dying Well, How We Die, Final Gifts and The Etiquette of Illness. Not wanting to spend top price on the new book, I called my friend, Kathleen, who was visiting her daughter in Portland. I knew she was visiting Powell’s Bookstore and asked that she purchase it for me as they always offered new books at a discount for a few weeks. Mission accomplished. I started the book immediately and could not put it down. It seemed to me the summation of all that we do wrong in our Western approach to living and dying and the better way to look at aging and declining through the eyes of other cultures could only make our dying in America better. The fact is that in the last 40 or 50 years we seem to think we are immortal. It is not difficult to see why this has evolved with all of the extraordinary medical treatments; we survive awful physical problems that have now become treatable. The long-term outcome of that is that we live longer and we are much more likely to live and die with multiple chronic illnesses. So, essentially we are living much longer with potentially and often worse quality of life issues to face than ever before.
Atul Gawande’s book has made readers ponder how we face death in a culture that does not like to have that conversation. Instead we medicalize rather than humanize aging, frailty and the dying process. At times we focus more on dying and preventing dying than on living and loving what our life is at the moment or the days we have left.
Gawande is a surgeon whose parents grew up in India where the elders were brought into the home of the oldest child to live out their years. Being a surgeon, he always wanted to believe he could fix the problem and send the patient home to resume their life. When encountered with several life-altering medical experiences, he decided to refocus his approach to cure at all costs with quality of life. He came to realize that he needed to be honest with himself and his patient that he could not fix everything and some people should be sent home to enjoy and appreciate what time they had left with the best quality possible. He discusses a heart-wrenching story of a young new mother who faced aggressive cancer. On reflection he wishes he did things differently for her, her new baby and her husband. But much of his reflection is a focus on aging and deferring death. We have long avoided those discussions. In my twenty years of hospice work, I still come across families who don’t want to talk about dying with their dying family member but prefer to go on with life as usual ignoring the “elephant in the room.” More often than not it is the patient who is comfortable talking about dying but not the family, so barriers go up.
Many of my friends have read this book and some have said, “Oh it was so depressing.” I did not find it that way. I found it to be an affirmation of a belief system I have long held to be prepared to face the end of life having thought it through and made choices for care in advance. Oliver Sacks, a neurologist, scientist and well-known writer, was faced with advanced widespread cancer in his liver at the age of 81. He wrote of Gawande’s book prior to knowing of his cancer’s progression, “We have come to medicalize aging, frailty, and death, treating them as if they were just one more clinical problem to overcome.” I wondered as did others, how will Sacks face his own death? Well, he faced it with this statement, “. . . I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more . . .” Six months later he died at the age of 82.
So my point in this lengthy diatribe is not only to urge folks to talk about dying a bit more and to consider options, but to also look at our care in general of our elder population. We should perhaps look at every healthcare encounter in terms of what is the burden of the test and what is the value of the information we might gain? If the “test” or procedure will be greatly taxing to the senior and the benefit not substantial, perhaps we should forego the test. Seniors need to know that those kinds of decisions are or should be collaborative.
In one of the final statements in his book Gawande reflects, “I never expected that among the most meaningful experiences I’d have as a doctor – and, really, as a human being – would come from helping others deal with what medicine cannot do as well as what it can.” I believe that this is one of the hardest things for doctors to acknowledge is that they cannot fix or cure all things.
So, with November being a time of reflection and thanksgiving, we should better prepare ourselves to answer some of those questions for ourselves, share our thoughts with our family members and not expect to live forever.
Have a safe and warm holiday season.