Vital Signs: Staying Alive Until You Die
Bravo to Atul Gwande for writing a book about the end of life that is both a pleasure to read and chock full of vital information about what happens in our current health care system when our bodies fail us in old age or fatal illness. If we are not prepared with some kind of self-determination and perspective, we are doomed to emotional overwhelm and confusion in trying to make the best decisions about our medical options and care. Instead of enhancing our last years, months, weeks or days, we could imprison ourselves in a round of “health care” that is unrelated to our actual survival, supported by statistical analyses that don’t take the individual into account, and often psychotically delusional about hoped for “recovery” — holding out fantasies about what “could” be accomplished from painful and expensive medical treatments.
As Gwande, a doctor and writer, says, “[O]ur most cruel failure in how we treat the sick and aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.” When Gwande sat with his mother (a doctor) and his father (also a doctor) to review his father’s “options” in dealing with a progressive spinal cancer at the age of 75, the three Gwandes were overwhelmed and confused. “The oncologist was now center stage, but she lacked [the] ability to take in the whole picture. We missed it keenly. She proceeded in information mode. She laid out eight or nine chemotherapy options in about ten minutes. Average number of syllables per drug: 4.1. It was dizzying. He could take bevacizumab, carboplatin, temozolomide, thalidomide, vincristine, vinblastine, or some other options I missed in my notes. She described a variety of different combinations of the drugs to consider as well. The only thing she did not offer or discuss was doing nothing.” And at the end of her speech, she added, “You could be back on a tennis court this summer, hopefully” – an utterly bizarre fantasy, as the Doctors Gwande (but others would not) recognize.
Why we — as a society and as individuals — operate in the ways we do, when faced with our mortality, is a story that Gwande sets out in careful biological and historical detail. Mostly, though, it is a story of psychology. In a society that holds out fantasies of being forever youthful, and has intelligent citizens who believe (honestly) that technology will (soon) unlock the secret of eternal life, we have forgotten how to face a debilitating and fatal diagnosis with any hope of happiness in our remaining time on earth. Instead, both doctors and patients indulge in impossible fantasies about fixing things, even when people have lived past the normal lifespan. We seem to have forgotten how to remain vital while turning out the lights.
What Gwande shows, again and again through his well-crafted stories of individuals of different ages with fatal diagnoses — and his review of large-scale research about life’s meaning — is that, in fact, we do not want to lose our autonomy (our ability to make decisions for ourselves) or our dignity in the final chapter of our life story. And yet, when offered unrealistic and poorly informed “choices” (even though the doctor may be giving us all the “facts” and consequences) both the dying and their loved ones tend to lean into the “choice” of “extending your life.” BUT, that choice too often goes in exactly the wrong direction — into a prison of miseries that defeat the individual, exhaust the resources of the family, and guarantee an undignified death.
Gwande begins the book with a contrast between his Indian grandfather — a wealthy farmer in India, who lived to be 110 years old, surrounded by family, living in his son’s home, still surveying his property on horseback at the age of 100 — and his wife’s grandmother. The latter was a strong-willed Southern lady (American) who lived alone for two decades after her husband died, unwilling to make any arrangements for residential care. One day she took the (typical) fateful fall, broke her hip and eventually died in circumstances that she did not want. At first, I thought Gywande’s narrative was headed into a comparison between extended and nuclear families: “Look how the extended family and home care provide exactly what elders want and need while the American nuclear family abandons its elders, hyper-valuing individualism.” But, no, Gwande’s account is, thank goodness, more nuanced. His Indian uncles (his father’s brothers who stayed in India after his father moved to the States), especially the one who housed his grandfather, resented their father and hated losing their own autonomy during the many years the old man remained in charge of the family, while being in their care. He insisted on his ways about everything and never let his sons emerge into their rightful leadership of the family business. Conflict reigned over the years of his slow demise.
And Gwande tells other stories, too, about family members having to care for the ill and aging over decades, losing their own will to live and engage with their lives. The picture of caring for debilitated and old family members is never straightforward and smooth.
I know because I cared for my beloved husband for ten years as he reversed his emotional and physical maturity in the course of early onset Alzheimer’s disease. I wrote a memoir about my experience, The Present Heart: A Memoir of Love, Loss and Discovery (published by Rodale). My husband died a day after the book came out in October 2014.
My dedicated care for him and my fight to retain my own autonomy is the story I am now attempting to talk about in programs for the general public and mental health professionals (I am a psychologist and Jungian analyst and I do speaking engagements). Presenting this material to any kind of audience is difficult, though. Listeners don’t seem to believe that it is possible for early onset Alzheimer’s disease (especially as they’ve seen it in the movies, rarely in their lives) to be tolerable, acceptable, or spiritually transformative in the way that other life events (the birth of a baby, the growing up of a child) inform us as human beings. The fact that I continued to cherish my husband (while moving on in my own life), to place him into a supportive and pleasant residential care center, to recover from the financial disaster his illness spawned, and never collapse into resentment or hopelessness, does not seem to be readily understood as good news. The story seems instead to be too Pollyanna-ish.
Not only that: My story is rooted in spiritual practice. I have been a Buddhist for 45 years and that perspective has grounded me in the reality of impermanence and mortal being. My husband was a Buddhist, too. I wanted to write our story in a personal and revealing way because I thought it would be good news that early onset Alzheimer’s can be not only a soft landing (mostly it is not painful), but that it could mean spiritual development in both the stricken and the caregiver.
What I went through was tragic and upending and completely unwelcome. But it was not a bitter disaster. I didn’t freak out. I started accepting it, the moment I knew that it was not possible to fix it. Through taking everything one step at a time, and holding tight to my own compass, I found that both my husband and I could retain our dignity, our vitality, and our humanity even when his functioning reverted to being a very young child and then an infant. There was a reality about his situation that could not be changed, but could be embraced. He had some of his happiest years in this “second childhood” as a result of the disease.
That returns me to Gwande and his book. In some ways, he doesn’t tell the story of caregivers as well as he tells the story of the patients and the elderly. He implies that caregivers need to retain vitality and autonomy. What he does not tell us clearly, though, is that caregivers must look just as honestly and wholly at their situation as they look at the patient’s. He spends quite a lot of time supporting the development of humane and livable residential care houses that can support people when they have long-term illnesses, but he doesn’t emphasize how important these setting are to caregivers.
Gwande has done a great compassionate service in writing this book. He clarifies that we need to be wary of a “health care system” that does not recognize the meaning of our everyday lives and that loses track of the bigger picture of our humanity as soon as things cannot be reasonably fixed. Our vital signs must remain connected to being truly alive until we die — instead of feeling trapped and imprisoned in the sad analogy of “fighting the good fight” while lying in a hospital bed or being tied to regime of gut-wrenching treatments.