Atul Gawande is a gifted writer, perceptive physician and compassionate humanist, (and probably a pretty good surgeon, but I can’t speak to that). In his new book he writes beautifully about aging, care for the elderly, and the importance of the medical practice of geriatrics. What fascinates me, is that in all the book reviews and interviews that I have seen about this book, I didn’t understand that it was, in fact, about aging and old folks. Instead, what I understood the book to be about was end-of-life decisions for the young, particularly in the face of a cancer diagnosis.
I’m not picking an argument with Gawande or the book, in fact, quite the opposite. The book begins with 4 chapters discussing aging and the dilemmas faced by an individual experiencing increasing frailty. He includes some history and policy about the growth of nursing home care and the changes and expectations about medical treatment. He beautifully raises the question of at what point and at what cost do families and individuals embrace safety as their greatest priority over independence and autonomy. I have often framed this same question as a family’s tolerance for risk vs. safety vs. personal choice.
Why then isn’t the media discussion about older adults and their end-of-life choices rather than the 29 year old with a brain tumor, or the 57 year old with breast or colon cancer. I suspect the issue is that with cancer the medical establishment and culture has been able to offer a variety of options and treatments. But there is no treatment for old age. Not surprisingly, there is an implicit and underlying ageism in the media and it is for this reason that the public conversation veers away from talk of the frail and oldest old.
Gawande’s point in this very fabulous book is that we need to have the difficult and courageous discussions about the choices and priorities at the end of one’s life. And it must happen for even the older adult who is managing one or two chronic conditions and the assorted aches and pains, muscle weakness and fatigue of normal aging. Even without an acute episode of a major or serious illness, we can and should still have these conversations. And without being too cynical, for what is aging if not a terminal illness?
What I liked best, was the simplicity of just asking, “What are your goals?” This resonated for me in a way that the vocabulary of “quality of life” I never completely understood, it was always too esoteric and obscure. Goals are concrete and goals can change as one’s condition and circumstances change, as one’s thoughts and perspectives change.
However, what didn’t get answered for me, is what can one do. In the case of serious illness, one can choose to stop treatment or try one therapy over another, but just the mere fact of aging doesn’t give you options. What treatment would you stop for the pain of arthritis? What options do you have for muscle weakness and poor balance? And if memory loss and cognitive changes begin, what do you do? Still the discussion is a necessary one and perhaps there are no answers. I believe older adults navigating these difficult transitions need to actively work at acceptance of a changed physical status and learning adaptive ways. For those of us nearby, “being with” and being present for the old people in our lives feels like the appropriate approach. This is new territory for a physician such as Gawande and he speaks well to his struggles with learning the skills and the vocabulary. Social workers, therapists, home care aides and nursing home staff often have more experience in this realm, but we too can’t be afraid of asking the questions and addressing the obvious: the end of a life is nearing. Gawande recounts several instances of the sense of relief experienced when end-of-life is spoken about openly and honestly and then giving voice and clarifying choices, options and goals. It is well heeded advice.
I will pick one argument with Gawande. He characterizes aging as an endless series of losses, both physical and emotional. We must re-think this characterization and recognize that aspects of aging can be inspiring despite nearing the end of life. Slowing down, the choice to keep friends and family close – finding the meaning in introspection — seem to me what needs to be the mutual understanding between the old and the young.