Being Mortal: What Matters in the End

My grandparents are getting older.

A few months ago, I made a list of the questions I want to ask after I graduate from high school. One of these was about death.

I couldn’t fathom the thought of death. It seemed such a distant question, yet constantly looming around me. A few years back, my papa died from cancer. I have a distant memory of Mom crying on the bed at night, with me not knowing what has happened. One year ago, my uncle died. I came to know about this only one month ago. My grandparents already picked their shouyi (寿衣). My mother signed for her body to be donated when she dies. One day, they will die. One day, I will die.

We associate death and aging with fear. Fear of not being able to see our loved ones anymore. Fear of losing our dignity. Fear of the suffering during our last days on a ventilator. Atul Gawande, doctor and the author of Being Mortal: Medicine and What Matters in the End, addresses the fear behind death and aging in this must-read for people like me who are seeking a clue on how to face the inevitable.

Aging

You may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.

Atul Gawande, Being Mortal: Medicine and What Matters in the End

Thankfully, my living grandparents are rather healthy and still independent. I have seen worse among my relatives, however, with debilitated family members and constant quarrels over what to do. To add on that, we too often see news of another old person stuck in a nursing home or on a hospital bed with all the tubes and ventilators. That’s the worst fear of many of us.

In the book, Gawande asks the key questions: “What does it mean to be good at taking care of people whose problems we cannot fix?” “When does the need for safety leap past a person’s need for independence?” He makes clear the gist behind the fear: people need a reason to live, and people need control of their own lives. “You may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.” Indeed, the old are safer in a nursing home where there is a rigid schedule that everyone follows, but that’s not living. That’s merely surviving. People don’t want to feel like they have to rely on others for the basic functions of life. People want dignity.

Gawande discusses the history of senior care from the poorhouse to the nursing home and the options available nowadays, pointing out their downfalls: none of them could provide the dignity that people need. But simple approaches like allowing nursing home residents to have pets or care for the nearby kids make a huge impact. He takes a lot of effort to discuss assisted living communities—a new model for late-life care that preserves both privacy, autonomy, and safety. People can still enjoy their lives while getting the help they need. The costs of these communities, however, are still unfathomable for many. Similarly, these communities face constant regulatory challenges.

Dying

Our ultimate goal, after all, is not a good death but a good life to the very end.

Atul Gawande, Being Mortal: Medicine and What Matters in the End

There comes a point at which one passes from being old to dying. That was the case with my papa over his final years. Even if I didn’t know it, he must be deteriorating and suffering.

Reflecting on his own experience as a surgeon, Gawande says, “We imagine that we can wait until the doctors tell us there is nothing more they can do. But rarely is there nothing more that doctors can do.” It’s easy for us to latch on to the final lines of hope, fighting with the unfightable, hoping for the impossible. But none of us want to end up on a ventilator. Treatment after treatment after treatment only made him sicker and sicker and sicker. Until finally, it was just, “Let me die.”

The lesson that Gawande learned and began to apply to his patients was to make the hard conversations early on. What were the trade-offs that they were willing to make? How do they want to die? When should they stop the medications? But these are often the hardest questions to start answering. These questions are illustrated by exemplary personal stories about how the answers could shape the quality of a person’s final days.

The power of hospice and palliative care is also fundamental to “a good life to the very end.” The book cited studies revealing that patients who stopped chemotherapy sooner and entered hospice sooner had less suffering and lived up to 25% longer. Hospice care also allows family members to take less time to recover from their losses. The key is not to fight with the unfightable, but to accept reality and make the most of it.

Courage

Whatever the limits and travails we face, we want to retain the autonomy—the freedom—to be the authors of our lives. This is the very marrow of being human.

Atul Gawande, Being Mortal: Medicine and What Matters in the End

Gawande ends the book on a personal note—the death of his own father. Even if, through decades of experience, he knew much that there is to handling aging and death, it was still difficult to gain the courage to deliver the final goodbye.