“What do I say?” I frantically pondered. The hours passed, my shift ended. A young nephew sat on Barbara’s lap as other children enjoyed cartoons on the television. Then a new truth manifested, and I would try to give it voice. In Barbara I saw a bit of all us humans, suffering through victories and losses and illness and health. In her I saw a stalwart will, finding meaning and joy amidst mortality. In her I found a wisdom to heal my future patients, even when there is no cure. In that moment, all these truths amalgamated into a semi-coherent babble of honest, authentic love.
I placed my hand on her shoulder, squeezing a little tighter this time. We both knew what the moment meant. “I have to head out now, Barbara,” I said, as our eyes talked over the words, “It’s great spending time with you. You mean a lot to me, and you always teach me something new. But I should let you enjoy your family. They’re lucky to have you. I’ll miss you; have a good night, Barbara.”
Weeks later, as I sat in that seminar room, the question returned: What do I say? There was no right answer. But still I thought, pondering the inelegance of that visceral human moment—the diffidence, the locked eyes, the inaudible truth beyond words. I thought on what I had said, and what it all meant.
If I had to do it again, Barbara, I wouldn’t change a thing.
You may be wondering what, exactly, you’ve just heard. What you’ve heard is a story – a story about a patient named Barbara, whom I had grown particularly close with during her two months in hospice. Barbara, whose name and identifying details are altered for privacy, was dying of cancer. Her care team had worked tirelessly to manage her pain, she and her family eventually opted for terminal palliative sedation – where a patient, facing intractable pain at the end of life, receives a cocktail of sedative drugs to induce a coma in their last days or weeks. Barbara and I had never discussed the choice; I, a volunteer with her hospice team, had only learned of it during a staff turnover meeting. When I walked into her room for the last time, a large swath of visitors prevented any mention of the topic. The excerpt you heard was from an essay I wrote for a geriatrics journal – reflecting, in those last moments of our time together, on all that Barbara meant to me. The question you may now be asking, is why stories like this matter?
End-of-life stories matter because they speak to the passing plotlines in each of us. You see, human beings are basically storytellers: we speak in metaphor and simile, we live through characters and plot twists. Our lives revolve constantly around the implicit narratives which we tell about ourselves and our world.
But at the same time, not all stories are created equal; each generation and culture must find its own existential tension. In the ancient world, it was a search for the divine. In 19th century Europe, it was inevitable progress of the enlightened mind. In the following century, oddly enough, it was a world at war with evil and disease. In our current Western age of technological and biomedical revolution, what compelling stories will endure? No longer does the plot revolve around outside forces like plague and war, I would argue. Today, our most important tensions arise from within.
The modern fear is, more and more, that something is wrong inside our own bodies. Cancer, Alzheimer’s, the very fact of aging, have all taken place of the most gripping Victorian thrillers. Ultimately, this public medical conscience has coalesced into one simple motif: death. Death, of course, is nothing new – as long as people have lived, they have, more or less, died. But that ancient fact is now holding our contemporary attention, especially as issues begin to play out with an aging U.S. population. Our culture has, somewhat begrudgingly, landed anew on an age-old question: We cannot escape death, so what do we make of dying?
Enter medicine. This is a profession whose fate is inherently tied to death; and as mortality continues to grow in the public imagination, medicine cannot sit idly by. No, I would argue that medical professionals have as much to teach – and to learn – as anyone wrapped up in the story of our human mortality.
I myself am an aspiring physician, and I’ve long been convicted by such themes of suffering and storytelling. When I arrived at Stanford, after college, I engulfed myself in the latter, authoring a regular series for the Palo Alto Online. There, I write narrative essays on people battling illness, disability, and poverty. I’ve told the story of a 22-year-old with chronic Lyme disease, and that of a middle-aged couple who battled alcohol and opioid addiction before losing their own son to an infected needle.
But what of mortality – that universal struggle, so entrenched in the narrative of lives? This question would, ultimately, lead me to spend hundreds of hours volunteering in hospice over the last twelve months. In those hours, sitting and talking with the dying, I found a sense of rightness. But even more so, I found a question – an inquiry more urgent than the one which brought me to hospice in the first place: If narrative is the means by which we interpret life, how might the same tool be used to reimagine death?
Around January of this year – before Barbara, before any of my end-of-life writing – a patient of mine answered that question for me. That patient’s name was Marianne, and her story – more than any speech I might give – weaves together medicine, mortality, and what matters in the end.
An elegant woman in her late-sixties, Marianne exuded a special grace. That grace, however, was tried and tested as she battled terminal pancreatic cancer. When Marianne and I first met, she was a new hospice patient, and I was her volunteer. At the time, she retained many of the qualities which had defined her in health and vibrancy; but Marianne was suffering – physically, mentally, emotionally – with the implications of death and dying. When I helped nurses turn and reposition her, she exhaled groans of exhausted pain. (My medical colleagues would manage that pain, with timely medication and personal support.) When the purposeful pace of caregiving had slowed, though, Marianne and I sat together.
In those moments, Marianne was freed from expectation. She was free to show pain, confusion, and weakness without judgement. But often, she would softly speak a few caring words, which rattled through my skull every time:
“You’re too young for all of this.”
My regular response was one of loving contradiction: “Absolutely not. It’s a privilege to be with you as you go through this. You’ve had a hard few weeks; but you’re not alone.” But in reality, those exchanges often led to an uncertain self-examination.
“Too young for what, exactly?” I would ask myself, “Death?”
To be sure, Marianne’s words made perfect sense. She was not facing death as some philosophical inquiry; she was facing the pain of metastatic cancer, and the end of her life. Why would such a caring woman ever want anyone to shoulder any of that burden? Marianne’s words were, and always will be, a loving act of mercy.
But death and dying are not exclusively personal. Death and dying are universal. So, to this day, I cannot escape the question: “Why am I too young to think about death and dying?” Through reflection and experience, I’ve formed the rough sketch of an answer. Or rather, I have reframed the question entirely – and in doing so, reminded myself that dying is, in fact, still about life.
The idea that young, healthy people should not burden themselves with mortality is part of a much broader Western attitude, one in which death itself is pathologized. For our culture, conversations of death and dying are rather like policemen, showing up at the door of a vibrant party. Life is meant to be lived, so why waste time talking of death?
Our culture values healthy bodies; it exalts the human will not only to survive, but to thrive. No wonder, then, that people and communities often neglect this important topic. Our obsession with life has made us avoid discussions of death as if they were – well, the death of us.
But one cannot ignore such a deeply human fact without consequence. While a person is alive and well – while their kidneys are functioning, and they remember what day it is – those ramifications may seem irrelevant. But the death conversation cannot go ignored forever. We do not have a choice.
What does “the death conversation” even mean, though? This leads to my reframed question: What do we talk about, in end of life care, when discussing death? Why should everyone, not just the dying, take part?
When we talk about death in hospice care, one might imagine a melancholy room, filled with hopeless and defeated people. One’s imagination, though, would be somewhat inaccurate. The best and most productive conversations about death are not depressing; they are difficult, but people walk away with greater peace and preparedness. When we discuss death in hospice, we get to the bottom of things, probing thoughts and conflicts which should not go unaddressed at any stage of life.
A patient, despite all efforts, is dying. Knowing this, how does that person want to spend their day? What is that person’s favorite part of his or herself – whether it be wit, piano-playing, a warm personality – and how can we maintain that? What traits and activities are expendable, and which are necessary for a meaningful existence? What does a good day look like? A bad one? These questions are not mere rhetoric. Their answers provide a rough blueprint for a quality end of life.
Recently, my own grandmother entered hospice care. She is a diabetic with a history of poor blood sugar maintenance, and a rhinovirus infection led her to bouts of hospitalization, kidney failure, intermittent delirium, fatigue, edema, and fluid in the lungs. For days at a time, she struggled to communicate at all. After my grandmother’s physician recommended her for hospice, my family felt this was the best direction. But how could we know?
Long beforehand, in those ostensibly awkward death conversations, my grandmother had given clear directives: she did not want to be intubated, placed on dialysis, or kept alive by invasive and intensive medical intervention. She was almost 90 years old and had lived a good life – with a late husband, two children, and three grandchildren to her name. Life, for her, was not merely about living longer.
My grandmother valued independence, and the ability to live life on her own terms. A good day was a restful one, where she could play the piano and see her grandchildren. A bad day was one spent in the hospital – with needles and tubes and beeping and humming – laying tired and confused in a strange bed.
My family was aware of those desires, precisely by giving the death conversation its due attention. Yet even with that knowledge, her situation was difficult to manage. Could the kidney failure and edema be stopped if we sent her back to the hospital? Had grandma simply been discharged too early? Had physicians merely been impatient with an elderly woman’s physiological puzzles? Had we – given up?
My grandmother’s narrative is, at present, still ongoing, and knowing her desires has not made things simple. Dying is messy, just like life. There are still questions to be asked, and nuances which smudge the lines of advance directive. But these questions, these conversations, have nothing to do with death. They are conversations about life, and what a good life looks like when mortality is no longer an abstract idea. Those dialogues, however difficult, are helping give my grandmother her best life, right now.
For Marianne, I’m happy to say, the right people were there to have the right conversations as well. In a calm and lucid state, made possible by caring hospice professionals, Marianne looked out around her backyard. The afternoon sun had left a warm haze over the red patio. She smiled softly at the quiet, comfortable world which she loved so dearly. Turning back to her hospice physician, she asked, “When the time comes, do you think I can die out here?”
“Are you serious?” he said in surprise.
Marianne spent her last days surrounded by the friends and family, doctors and nurses, who cared so deeply for her. Even more so, she had peace, comfort, and control – as much as possible for one with metastatic cancer. Until the last moment, her life was her own.
Tough conversations and vulnerable moments have helped remind me what I do for the dying: I help them live. Whether for my own grandmother or a complete stranger, I know exactly what the death conversation means.
It means life.
Having served Marianne for months, I knew she would want her love to outlive her. So I wrote that essay, the first of many. Soon after, I wrote Barbara’s story. Others followed. I became wholly driven by one unifying purpose: to tell medical stories which illuminate our most human tensions.
If Barbara taught me communicate the messy complexities of life at its end, Marianne’s teaching was quite different. Marianne’s story shows us that dying is not an isolated event. It is a part of one’s life. Death a process, replete with fears, desires, tensions and – if we do things well – resolutions. Marianne’s transition from a groaning and uneasy sufferer, to a calm and reflective one, happened within a narrative arc. She was the protagonist of her own life. She was a participant in an ongoing dialogue with mortality. Eventually, with medical care and loving support, she found a sense of peaceful resolution. By engaging with stories of wisdom, compassion, and mortality, we in this Western world might find resolution to our own plotlines as well.
Medicine needs narrative at the end of life, most of all for those who are still living. I learned that truth from Marianne, from Barbara, and from countless other patients with stories to tell. The rallying cry from all these patients, silent but stalwart, rings true even in their absence: Humans are storytellers, and mortality is that universal theme of the human story.