Some mornings I wake up very early with my son, Erik. In those quiet pre-dawn hours, I imagine that I can hear the human world awakening: a truck driver trudges out to his truck amidst the hissing of the engine; a farmer wakes before the roosters to spread feed for her chickens and goats; a coffee shop worker switches on the lights, grinds the beans, brews the coffee; parents like me who rock babies or stroke fevered foreheads, and all the people—children, spouses, home care workers, and elder care workers—rise to care for the old and ailing. Chaplains sit with those who may not live until dawn, nurse’s aides who raise beds, pick out clothes, slide on shoes, offer water and coffee, and inquire “How did you sleep, Gloria? Was it a good night?” I think about the rustling of bodies, old and young, who are being helped lovingly and willfully to rest comfortably as the sun rises.
In the twenty-first century many of us are living longer, dying slower, and more importantly, dying differently than our ancestors. The longevity dividend is the name I give to the extra thirty years our generation enjoys compared to our recent ancestors. Thirty years! In the United States, average life expectancy was forty-seven at the turn of the last century, rising to seventy-seven by 2000. The longevity dividend provides three extra decades after formal retirement to enjoy partnerships, friendships, hobbies, children and grandchildren, neighbors, political commitments, and one’s own development. Combined with rapidly declining birth rates, the longevity dividend is quickly aging the planet. Demographers predict that by 2050, elders will outnumber youth for the first time in human history.
I’m a feminist ethnographer of labor, which means I study the lives that women and men make out of work, specifically low-level, emotionally messy paid labor. My interests lead me to study the fastest growing category of workers in the United States: nurse’s aides. Nurse’s aides are positioned at the frontlines of the longevity dividend. I wanted to spend time observing and working alongside them so I could witness what they know, how they help others die, and the consequences for them of their caring, spiritual, and physical labor. How does a worker train to be with a family at the moment of death? Does her work change how she views death, or life?
Helping other people die has been and continues to be women’s work. Women have always cared for their own elders and often the elders of their husbands’ families when they were married. Women have ministered physically and spiritually to people in the months and years before death, and have cared for the body after death occurred. Now, the work of dying takes many forms and creates many different job categories including nursing, chaplaincy, hospice workers, and nurse’s aides. I was particularly interested in the least privileged of those positions – nurse’s aides. Women make up more than ninety percent of nurse’s aides nationally. Demographically, fifty percent of nurse’s aides are white, while a remarkable forty percent are black. Most of them have a high school diploma, and in 2010 their average income ranged from $10,000 to $30,000 per year. In the medical end of elder care facilities – what people refer to as “nursing homes” – nurse’s aides provide as much as ninety percent of all care provision. I was interested in learning from this group of workers who, on the one hand, are paid wages akin to McDonalds’ workers, and on the other hand, may be the last people we see before we die.
Women not only make up the vast majority of end-of-life front line service providers, they are also the primary consumers of end-of- life services. As women, we live longer, have our pain managed less well, and are more likely to be widowed, live alone, and reside in residential care than men. If you could preplan your death and be born into the body with the longest life expectancy, then your best bet would be to be born a white woman in an advanced industrialized nation, preferably into a wealthy family with good health insurance. Then you are looking at the greatest actuarial likelihood for a long life. Should you survive into your eighties, nineties or even early hundreds, you will find yourself surrounded primarily by women.
I expected nurse’s aides to complain about the heavy lifting of helping people out of bed and onto toilets; instead they worried over the less palatable aspects of the longevity dividend. Specifically, they hated to see the residents in their care live long past the point that their lives seemed meaningful. The routines of daily care opened up channels of confidence and trust with residents, and so many nurse’s aides were well aware how ready the residents were to die – not in a suicidal way, but in an intentional way. They railed against the many “end run” efforts when doctors and families rushed into the residents’ lives for additional interventions and attempts to prolong life, and the often-unsatisfying declines that can follow such heroic attempts.
Paid to care for bodies, nurse’s aides worried instead about ethics, identity, and the opportunities for something like grace at the end of life. So they advised fewer heroics and more steady company in the final months and days. Their advice to the rest of us, the death novices, was to lean into our elder and dying loved ones: to develop a nuanced understanding of their end-of-life desires and preferences, to maintain daily and weekly and seasonal rituals, and to ask specifically about their wishes and their readiness for the path ahead.
Once the active dying process started, nurse’s aides were saddened by how many loved ones missed opportunities to be present, to witness the departure from life, to say what they had left to say, to hold a hand, to feed an ice chip, and to tell stories. Aides were worried that Hollywood portrayals of death left many death novices waiting for some drama or formal recognition of life’s end but only those in the care of hospice, and not all of them, received such guideposts and touchstones.
Touch. Talk. Plan. That’s what I learned most immediately from my foray into end-of-life care. Fewer heroics and more stories, eye contact, and foot rubs. We are already reliant on each other to make it through the night to face the dawn. The experts I consulted who are doing the work of helping us die now reap the rewards of helping others die in ways that honor their preferences and histories. As we move further into the longevity dividend, we each have an opportunity to take on the labor of aging and dying as important work – work that parallels birth in its significance. In this work, I believe we will discover new capacities within ourselves, and new possibilities at the end of life.
How We Die Now cover: Temple University Press
Checking in with patient: photo by Jose Luis Pelaez, Inc./Blend Images/Corbis
Elderly woman by window: photo by Chalmers Butterfield