Anticipating my family’s ocean jaunt to Alaska on an oversized, floating hotel, I heeded the advice of a friend of mine in DC: “Get a copy of this book for each of your family members. Read it. Discuss it.” Brian is one of those friends who dishes out advice with such directness and intensity that it’s virtually impossible to say no. But he is also a brother of great integrity. He practices what he preaches: “My siblings and I read and discussed it. It changed our lives.” The book was Atul Gawande’s Being Mortal: Medicine and What Matters in the End, a reflection on end-of-life practices in the United States from the perspective of one born, raised and trained as a physician in India.
And so this past Christmas, I did just that. I purchased and gift-wrapped a copy of Gawande’s book for each of my family members and said, “Let’s read this and discuss it on the boat in May.” Much to my delight (and relief), the idea was enthusiastically received. However, the question of why their father wanted the whole family to read a book about death was, particularly for my two daughters, a source of considerable consternation. Is there something Dad isn’t telling us? “Why this book, Dad?,” they asked. My answer was less than satisfying: “I actually don’t know. My friend Brian said we should,” to which they replied, “Who’s Brian?”
And so, after setting sail and taking our seats in the ship’s extravagant mess hall, we discussed Being Mortal. Suffice to say, the book had been a somewhat sobering read for all of us. Gawande paints a grim picture of America’s approach to end-of-life care for her elderly: an aggressive application of medical, life-extending technologies at the expense of dignity, agency and quality of life for those we love. In so many words, Gawande argues that the goal of end-of-life care shouldn’t be “a good death but a good life to the very end.[1]”
Gawande’s musings moved each of us. Kirby, our youngest, bemoaned how capitalism trumps well-being by adversely affecting our eating habits, the condition of our bodies, and the health care systems upon which we rely. Jacob, next in the age order, emphasized the importance of autonomy, recognizing that the elderly need to be able to exercise freedom and agency just as much as the young people he serves as a mental health therapist. Kiana, our eldest daughter, stressed the importance of “avoiding avoidance,” in other words we turn blind eyes to the realities of aging, suffering, pain and loss to our peril. Jeremy, our oldest, came away with deepened conviction about the communal nature of well-being: we truly need each other to stay happy and healthy. My wife, Tina, zeroed in on a key culprit, our incessant need to “fiddle, fix and control,” which, more often than not, causes more harm than good for those we are trying to love.
For me, the book brought mom (affectionately known as Tutu) and my late father to mind. Truth be told, it has been tempting to reduce the last twenty years into one long, arduous blur. Shortly after the turn of the millennium, my father was diagnosed with early-stage Alzheimer’s. It upturned our lives, especially our mom’s. The ensuing decade was replete with drama: the daily consequences of forgetfulness at home, the frustrating quest for competent caregivers, a harrowing “search-and-rescue” operation across two cities, myriad medical decisions, and that dreaded final deliberation: intubate or not?
And then, soon after my Dad’s passing, my mom started falling. The first fall happened during the kind of sidewalk stroll she’d done a thousand times. But times change. This time signaled the start of a marathon – or perhaps a long-distance obstacle course – rounding through emergency rooms, hospitals, rehab centers and assisted living facilities (ALF) for so many laps that I’ve frankly lost track. Several times along the way, we truly believed her hour had come. This was reinforced by somber meetings with the hospital’s palliative care unit. I’ll never forget the soul-piercing message in their eyes: “We know this is hard, but you must embrace the inevitable.”
That afternoon in the emergency room, we could have sealed her fate by forgoing invasive surgery on her fragile, 90-year-old body, but instead, some seven years later, she continues to wheel herself into her ALF’s recreation room to play Scrabble. But while my siblings and I look back at that collective decision with gratitude, Being Mortal nonetheless raised a haunting question for me: Was Tutu actually experiencing a “good life” and, if not, what was I doing to make such a life for her a reality? Was placing my mom in a home, with its well-meaning but oft mind-numbing activities, merely a convenient way to preserve my own convenience?
My wife is a caregiver for the elderly, a vocation for which she is uniquely and marvelously gifted. Beyond helping with drug prescriptions, doctor’s appointments and medical exams, she also tirelessly arranges shopping trips, fun excursions and social visits. But she has also become intimately familiar with a kind of despair, among some, that comes with being stripped of dignity, agency and voice. “I really don’t want to live any longer,” is a not-uncommon refrain she hears. For individuals with remediable psychological struggles, however, we as a society still go to great lengths to dissuade the depressed from taking (or outsourcing the taking of) their lives. However, for those enduring great physical suffering and want their lives terminated, “only the stonehearted can be unsympathetic,[2]” as Gawande puts it. But he addresses medical aid in dying (MAID) in this way thought-provoking way:
“Certainly, suffering at the end of life is sometimes unavoidable and unbearable, and helping people end their misery may be necessary. Given the opportunity, I would support laws to provide these kinds of prescriptions to people. About half don’t even use their prescription. They are reassured just to know that they have this control if they need it. But we damage entire societies if we let providing this capability divert us from improving the lives of the ill. Assisted living is far harder than assisted death, but its possibilities are far greater, as well [italics mine].[3]”
Gawande, not a professing Christian, has an important word for us, the professing Church. For the ekklesia, seeking to live faithfully to the gospel, such discernment is called of us: How are we fostering the “sanctity of life” beyond mere dogma to within our families, our homes and the modern hospital (which, unbeknownst to many, emerged historically out of the Christian tradition)? How are we loving our neighbors (i.e., the elderly, the dying) as ourselves? Is the advocacy, legality and practice of assisted suicide outpacing and undermining humanity’s most sacred, life-giving manifestations, that is, the experience, celebration and propagation of dignity and love inherent to being human? Are we pursuing and cultivating life’s infinite possibilities made possible in Christ?
As I look back with fondness at my family’s dinner discussions, on the high seas, about death and dying, I’m struck by what that time represented: an intergenerational “third space” for co-learning and communal discernment around matters of ultimate purpose. Conversations that are not only informative, but transformative. Meaningful exchange that forges the difference between life and death. May this also be true of the Church that, amidst the weight of the world and its demands, we might gather at the table and do likewise.
[1] Atul Gawande, Being Mortal: Medicine & What Matters in the End (Metropolitan Books, 2014), 156.
[2] Gawande, p.156.
[3] Gawande, ibid.
Dr. Craig Wong is the Executive Director of New College Berkeley (NCB), a theological “third space” to help the Church discern and contextualize the gospel in the San Francisco Bay Area. He recently completed a DMin at Western Theological Seminary in Holland, MI, after completing an MA at the same institution. Before NCB, Wong served on the staff of a Presbyterian church in San Francisco’s Mission District where he formed and led a congregation-based, community nonprofit that served immigrant families from Latin America and Asia. He also served for over 12 years on the board of the Christian Community Development Association and the corporate board of Dayspring Partners, a gospel-centered technology company in the Bayview Hunters Point neighborhood of San Francisco. He and his wife Tina have raised four children (now adults) in San Francisco’s Excelsior neighborhood.