“Being Mortal: Medicine and What Matters in the End” by Atul Gawande speaks to much of what my family went through a few years ago when it became clear that our parents would not be able to continue to manage on their own.
If we had been able to read this book back then I think we would at least have had a better understanding of what was going on, and perhaps have been better prepared to navigate through the situations that developed and the decisions that had to be made.
Dependence and autonomy
Gawande, a surgeon at Brigham and Women’s Hospital in Boston, tells the stories of numerous patients in this book. And he also shares how he and and his family worked through these issues themselves when his father’s health declined as he suffered from a rare spinal cord cancer.
In the early chapters of the book, we learn how society’s efforts to deal with the needs of frail elderly citizens who could not live alone led to the mid-twentieth century idea of the nursing home, and later the concept of “assisted living.” Gawande also shows us, through a number of moving stories, what it’s like to be in the shoes of an individual who needs assistance with continuing to live his or her life.
As children of parents in this situation, we wanted our father and step-mom to be safe and to be happy, and we tended to see those goals as at least somewhat related. But Gawande shows that in fact, what people in declining health more often want, even if they are quite incapacitated, is to retain a measure of autonomy, to be able to continue to shape their life’s story. Much as we children get concerned about safety, that is not their concern.
We eventually found an assisted living residence with very caring and capable staff and, most importantly, where both my father and my step-mom could live together. But it was my father who figured out how to make his days there meaningful. For example, it was he who found some very specific ways, despite his own limitations, that he could help our stem-mom as she continued to decline with Alzheimers.
The good news is that the options for those who can’t manage on their own are beginning to change, if very slowly. Gawande describes how a number of different communities and groups have found ways to provide help and support to very old and sometimes highly incapacitated individuals, while retaining living arrangements that are not at all institutional. What residents gain, in terms of more life enjoyment, reduced needs for medication and even greater life expectancy in these situations clearly outweighs the slight increase in safety risk that is entailed. Gawande sums it up this way:
The battle of being mortal is the battle to maintain the integrity of one’s life–to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be. Sickness and old age make the struggle hard enough. The professionals we turn to should not make it worse. But we have at least entered an era in which an increasing number of them believe their job is not to confine peoples’ choices, in the name of safety, but to expand them, in the name of living a worthwhile life.
The default goals of medicine and its institutions
Gawande goes on in the book to tell the stories of younger patients and their families who were in the difficult position of having to make decisions about care in the face of very advanced cancer. He points out that in this situation, patients are often better able to make choices that truly benefit them if they understand the trade-offs in terms of both risks and potential benefits of the treatment options that are offered. Sadly, the real risks, including the possibility of increased suffering, as well as the actual expected benefit of a treatment, which may be quite small, are sometimes glossed over by both doctors and patients in the desperate effort to find a “cure”.
Why does this happen? Gawande explains that it’s in part the way our medical system is set up. And it also reflects the fact that we don’t really understand well enough what medicine can and can’t do, and often haven’t really thought through what our goals are in our own medical care. The focus of our medical system has been on prolonging life through whatever means possible, but when people reflect on what really matters to them when time runs short, there are other goals that surface as more important. He says this:
People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The question therefore is not how we can afford this system’s expense. It is how we can build a health care system that will actually help people achieve what’s most important to them at the end of their lives.
Better ways to navigate end of life decisions
So how does a patient with very advanced cancer decide whether to proceed with yet another round of chemotherapy treatment, when treatments so far have failed them, and when it is time to say enough is enough? You’d think that doctors would be well equipped to help patients navigate through these decisions, Gawande says. But he points out that it doesn’t work out this way, in part because doctors themselves overestimate how long their patients with terminal illnesses are likely to survive. And in addition, although doctors usually tell patients when a cancer is not curable, they are very reluctant to give a specific prognosis.
Arriving at a clear understanding of the limits of what medicine can offer, and of one’s own mortality, is a process, Gawande notes. It takes time and, often, a series of conversations. And he argues that the reason that more physicians aren’t prepared to have these kinds of conversations with patients stems from “a still unresolved argument about what the function of medicine really is–what, in other words, we should and should not be paying for doctors to do.”
Gawande says that right now we are caught in a transitional phase. People increasingly realize that there’s an alternative to the established system where the problems associated with our mortality are medicalized, resulting in an institutionalized approach to aging and death. But the problem, he says, is that even though we may understand there’s an alternative, we as a society and as individuals are still learning how to put a different way of doing things into practice.
Modern medicine has given us remarkable capabilities, but it doesn’t serve us well when we fail to pay enough attention to what we really want out of medical care. Gawande tells us:
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?
I felt reassured after reading this book. It has given me a lot the think about, in addition to putting into context experiences my family has already gone through. Even if we can never be fully prepared to face our own mortality, we can be much better prepared than we are to make decisions when the time comes that can reduce suffering and improve quality of life for our loved ones and for ourselves.