There was nothing unusual, in the early 1970s, about a student hearing one of his professors preach during chapel.
But one sermon — “How Would You Like to Die?” — impressed the seminarian who would later become United Methodist Bishop Timothy Whitaker of Florida. Theologian Claude H. Thompson had terminal cancer and, a few months later, his funeral was held in the same sanctuary at the Candler School of Theology in Atlanta.
“What hit me was that he calmly preached on that subject — even while facing his own death,” Whitaker said. “It hit me that that, if death is one of the great mysteries of life, then that needs to be something that the church openly discusses. …
“Yes, we live in a culture that is reluctant to talk about death. But I decided that it’s important for us to hear from our elders who is facing this issue, head on.”
Thus, soon after doctors informed him that his own cancer is terminal, Whitaker wrote a lengthy online meditation, “Learning to Die.” The 74-year-old bishop is retired and receiving hospice care, while living in Keller, a small town near the Virginia coast.
“Being a pastor, I considered it a privilege and also an education to linger beside many deathbeds. I have tried to never forget that, unless I die abruptly in an accident or with a heart attack or stroke, sooner or later the subject of death will feel very personal to me,” he wrote. Now, “in the time that remains for me I have one more thing to learn in life, which is to die. … I had always hoped that I would be aware of the imminence of my death so that I could face it consciously, and I am grateful that I have the knowledge that I am going to die soon.”
Certainly, Whitaker noted, the Orthodox theologian Father Thomas Hopko was correct when he quipped, while facing a terminal disease: “This dying is interesting.”
Dying is also complicated — raising myriad theological questions about eternity, salvation and the mysteries of the life to come, he noted. The Bible, from cover to cover, is packed with relevant stories, passages and images. The same is true of the writings of early church leaders who preached eternal hope, even when suffering persecution and martyrdom. Over and over, the saints proclaimed their belief in the resurrection of Jesus.
Whitaker noted that Methodists can ponder this quote from their pioneer John Wesley: “But what is the essential part of heaven? Undoubtedly it is to see God, to know God, to love God. We shall then know both His nature, and His works of creation and providence, and of redemption. Even in paradise, in the intermediate state between death and resurrection, we shall learn more concerning these in an hour, than we could in an age, during our stay in the body.”
But what about the big questions that modern believers might struggle to ask? What about their fears of living with a terminal disease and the complicated questions surrounding death itself?
Early Methodists believed that preparing for death was simply part of life, and outsiders noted that “Methodists die well,” Whitaker said. The problem in churches today is that dying is often viewed as “a counseling issue,” or merely a “therapeutic challenge” for busy clergy.
For centuries, Christians developed rites linked to what they called the “good death,” or even the “happy death,” he noted. While millions now shudder at the thought of dying alone in a hospital, clergy should teach — especially in the age of hospice — how believers can plan to die surrounded by family and their fellow believers.
Yet many clergy are reluctant to discuss these subjects from the pulpit or in educational events addressing modern realities, as well as centuries of rituals and prayers.
“I can understand this reluctance — because they’re going to have many parishioners who will be alarmed or upset by any open discussions of these topics that our culture wants to ignore,” Whitaker said.
“But the church is supposed to help us prepare for death. And this isn’t just about someone receiving a terrible diagnosis. Death is something that can strike at any moment. … The church can’t be silent, in the face of death.”
Celebrating a new year — as Jews the world over will do this week, when Rosh Hashana begins on Friday at sunset — is all about making changes. It’s a time for new beginnings, for wiping the slate clean and starting over from scratch. In that spirit, on Rosh Hashana Jews say prayers and listen to readings that celebrate the creation of the world and of human life.
But Rosh Hashana also strikes a different, seemingly discordant note. Unlike so many other New Year’s traditions, the Jewish holiday asks those who observe it to contemplate death. The liturgy includes the recitation of a poem, the Unetaneh Tokef, part of which is meant to remind Jews that their lives might not last as long as they’d hope or expect. “Who will live and who will die?” the poem asks. “Who will live out their allotted time and who will depart before their time?”
And we’re not talking about a gentle death at the end of a reasonably long life; we’re talking about misfortunes and tragedies that can cut any of our lives short. “Who shall perish by water and who by fire,” the poem continues, “Who by sword and who by wild beast / Who by famine and who by thirst / Who by earthquake and who by plague?”
This focus on death might seem misplaced, bringing gloom to the party. But as a research scientist who studies the psychological effects of spiritual practices, I believe there is a good reason for it: Contemplating death helps people make decisions about their future that bring them more happiness. This is an insight about human nature that the rites of Rosh Hashana capture especially well, but it’s one that people of any faith (or no faith at all) can benefit from.
When planning for the future, people typically focus on things that they think will make them happy. But there’s a problem: Most people don’t usually know what will truly make them happy — at least not until they are older. Across the globe, research shows, people’s happiness tends to follow a U-shaped pattern through life: Happiness starts decreasing in one’s 20s, hits its nadir around age 50 and then slowly rises through one’s 70s and 80s, until and unless significant health issues set in.
Why the turnaround at 50? That’s when people typically start to feel their mortality. Bones and joints begin to creak. Skin starts to sag. And visits to the doctor become more frequent and pressing. Death, hopefully, is still a good ways off, but it’s visible on the horizon.
You might think this morbid prospect would further decrease contentment, but it ends up having the opposite effect. Why? Because it forces us to focus on the things in life that actually bring us more happiness. Research by the Stanford psychologist Laura Carstensen has shown that as we age, we move from caring most about our careers, status and material possessions to caring most about connecting with those we love, finding meaning in life and performing service to others.
That’s a wise move. When people in the Western world want to be happier, research shows, they tend to focus on individual pursuits. But that same research confirms that this strategy doesn’t work well: Pursuing happiness through social connection and service to others is a more reliable route.
Of course, you don’t have to be old to confront death. During the SARS outbreak and the Covid pandemic, younger adults changed what they valued, research showed. When death suddenly seemed possible for anyone, even those in the prime of their lives, younger people’s opinions about how best to live suddenly began to look like those of seniors: They turned toward family and friends, finding purpose in social connection and helping others.
You don’t even need to face something as drastic as a pandemic to experience some version of these changes. Research shows that simply asking people to imagine that they have less time left, as congregants do on Rosh Hashana, is sufficient.
Rosh Hashana hardly has a monopoly on this insight. Christian thinkers such as Thomas à Kempis and St. Ignatius of Loyola urged people to contemplate death before making important choices. Stoics like Marcus Aurelius argued that meditating on mortality helped people find more joy in daily life.
But the particular brilliance of Rosh Hashana is that it combines thoughts of death with a new year’s focus on a fresh start. As work by the behavioral scientist Katy Milkman and her colleagues has shown, temporal landmarks like New Year’s Day offer an effective opportunity for a psychological reset. They allow us to separate ourselves from past failures and imperfections — a break that not only prods us to consider new directions in life but also helps us make any changes more effectively.
There is a lesson and an opportunity here for everyone. Contemplate death next Jan. 1 (or whenever you celebrate the start of a new year). Any brief moments of unease will be well worth the payoff.
Mary Phelps, a grief massage therapist and Shiatsu bodyworker, gives a client a massage on Aug. 28, 2023, in Chicago. Phelps’ work focuses on getting the nervous system to calm down. Phelps is a member of the Chicago Death Doula Collective.
By JENNA SMITH
At age 19, Mary Phelps stood at her grandmother’s bedside. In mere minutes, she would watch the woman with whom she had shared a home and a life take her final breaths.
She held her grandmother’s legs, lightly massaging them as the seconds ticked by. “I just remembered her becoming so young in the face and relaxed,” Phelps said. “That’s when it came to me. Death can be calm and peaceful.”
Phelps’ perspective toward death and dying would forever be changed.
“It was just a really beautiful moment,” Phelps said of her grandmother’s passing. “So to see that, I realized death can be positive.”
Now, six years after that transformative moment, Phelps is one of Chicago’s youngest death doulas at age 25.
The role of a death doula is to educate clients on what to expect at the end of life. The little-known field is centered around easing an individual’s dying process, such as by informing the person of their burial options, serving as a point-of-contact between the person and their loved ones, and assisting in caregiving. And Chicago’s young and diverse end-of-life care workers are striving to provide comfort and representation during an inevitable period of life.
Young doulas say they aim to change the perception that death is laden with gloom.
Phelps, for example, opened the door to her North Center office sporting a messy bun atop her head and a welcoming smile. She pressed her hands together in a namaste symbol and offered a small bow.
With an elephant tattoo on her arm and beads in her hand (a gift for completing her doula training), she sat down, folded her legs in a rolling office chair and began to share her story. When the beads broke between her fingers as she spoke, she smiled and said, “must be the energy clearing.”
Phelps describes herself as “death positive.” While the expression may raise eyebrows, she uses it as a way of calling attention to the impact of her work.
“I think some people hear the word ‘death’ and they’re like, ‘What witchcraft is going on here?’ But it’s not like that,” she said. “It’s just helping us to give better care to those that are dying, because they get neglected a lot.”
Phelps channels better care through touch. She offers massages to hospice patients, fulfilling a need that she feels is underappreciated in the elderly community.
“A lot of times, they may not even be getting hugs or even gentle pats on the back,” she said. “So the way I see it … touch can help them feel more comforted and safe. It brings a calming presence. Yes, this is a scary time, but this can be a safe space.”
The fear surrounding death is something that Phelps has encountered throughout her career. However, she and her partners at the Chicago Death Doula Collective work to help communities unlearn that fear.
Phelps may be one of the youngest death doulas providing care in Chicago communities, but she is not the only one.
Sam Kopas, 34, is new to the death doula scene. While on a thrifting excursion, she spotted a flyer advertising support for elder care, with one of the options listed as “death doula.”
“I thought that’s the craziest thing I’ve ever heard,” Kopas said.
The flyer made her think about her travels through Europe with her husband. She recalled seeing the Prague Astronomical Clock that tolls every hour, reminding her that regardless of your age, death comes for us all.
“I thought that was really metal,” she said with a chuckle. With those memories coming to mind, she said she suddenly became acutely aware of the infrequency of open conversations surrounding death in America.
With her interest peaked, Kopas began to research Chicagoland death doulas to learn more about the practice. Soon, she found herself under the tutelage of Catherine Durkin Robinson, the owner of Anitya Doula Services and a death doula and educator.
Kopas became one of Robinson’s youngest students.
“I love seeing younger people. We need as many people as possible to get into this because so many different kinds of folks feel comfortable with so many different kinds of folks,” Robinson said. “I want to see more people who are trans, who are part of the LGBTQ community, getting trained to do this work.
“I think she brings a really bright perspective to the work,” Robinson said of Kopas. “Because sometimes when we’re dying, we want to be around people that have familiar language, that use similar words, sometimes that look the same and are in tune with what we’re going through.”
Robinson said that although younger workers are needed in the field, youth does not come without its challenges. She said some patients prefer an older practitioner. “Being in end-of-life work as an older woman, I’m thrilled with this process of getting wiser. That’s actually needed in this work,” Robinson said. “It’s comforting; we know a thing or two and we’ve been around the block.”
Kopas echoed these concerns, saying, “I definitely think there’s some challenge with clients because when there’s an age gap that’s so significant, where someone’s in their 70s or 80s talking to someone who’s a good deal younger than them, there’s probably even more of that intensity of, ‘What would you know that I don’t at this point?’”
Kopas navigates that resistance by acknowledging the challenge as it arises. She said that holding the client in unconditional positive regard and addressing their discomfort directly is the key.
“Just saying, ‘I hear you, this is rough,’” Kopas said. “I’m certainly not here to fix the disease or cure it, but to give you the most comfortable space in the end.”
When envisioning end-of-life care, Kopas said, a “standard kind of patient” comes to mind, someone elderly and bound to a hospital bed. But not everyone seeking end-of-life care is elderly. For young patients, doulas can adjust the care and comfort priorities.
Community health care worker Kandis Draw was forced to grapple with such adjustments as she cared for her sister battling liver failure at age 22. While burdened with grief, she discovered the distinct differences of navigating the dying process with someone in their 20s.
“When you deal with people who are in their 60s and up, some of them have the attitude, ‘Well, I’ve lived my life. I don’t have any regrets,’” she said.
She recalled one senior saying, “When you get old, stuff happens to you. There’s no way around that.”
This peaceful acceptance can starkly differ for those who are dying at a young age. According to Draw, 41, young patients can be burdened with a different sentiment. “‘This is not fair. I deserve another chance. I wasn’t parented right. I wasn’t cared for right. I didn’t have the resources. People just threw me out there,’” Draw said, recounting some of the comments she’s heard over the years.
Despite their grief, Draw said she was able to connect with these patients. “I think that you can communicate better when it’s someone that’s close to your age. You can have more of an open conversation,” she said.
Like Draw, Maureen Burns, who is 38 and a fellow collaborator with the Illinois-based HAP Foundation for hospice and palliative care, considers her work to be heavily influenced by her personal experience with grief and loss.
Mary Phelps gives a massage on Aug. 28, 2023, in Chicago.
Hospice is comfort care without curative intent; the patient no longer has curative options or has chosen not to pursue treatment. Palliative care is comfort care for people with a serious illness with or without curative intent.
Burns reflected on the death of her father in 2021. Despite working in health care, it took her a “surprisingly long time” to realize that her father was a candidate for hospice care. He struggled with chronic obstructive pulmonary disease, or COPD. While his decline in health made daily living and traveling to doctors’ appointments challenging, she did not consider that those challenges could be addressed by hospice care. “I think that informs my work now,” Draw said. “If it was that hard for me, imagine someone who hasn’t heard the word hospice. Imagine what they could be missing out on.”
For Kopas, becoming a doula was a way to bypass structures that imagine a standard patient. “I know lots of families that don’t think that hospice would be a good fit for them because they don’t fit the standard kind of patient or family that would go through it,” she said.
Kopas focuses on ensuring that everyone has the information they need. “Did you know that green burial is an option? Did you know that palliative care can start early? Did you know that you can opt into hospice and then opt out if you want?” she asked. “All of this is just stuff that I felt like, if I could be a messenger for that kind of information to people who didn’t know it, then that would be a significant improvement right there.”
For many of Chicago’s end-of-life-care workers, having conversations about a patient’s legacy and final moments have affected how they plan to move forward in their own lives.
Kopas found death doula work to be her method of leaving a lasting legacy in the world. She recently concluded that “parenting might not be for me.” This decision led her to ponder “what could I still do and bring to the world that would be valuable and helpful, and offer a perspective and nuance and ease someone’s time here.”
The answer was to be there for people when they are at their most vulnerable.
Phelps’ open and positive approach toward death isn’t limited to her work. She has begun planning for her own death and encourages other young people to consider what a good death would look like for them.
For her, a good death would take place in her home, after which she would have a water cremation and have her ashes turned into a diamond. Although many young people don’t like to discuss death, the 25-year-old said firmly that, “Dying does not have to be a scary process.”
The work of the city’s death doulas also reminds the public that advanced care planning can be pursued at any age.
“Death work isn’t an exclusively older generation (issue),” Kopas said. “It can be a regular conversation. Having these chats before anything tragic, terminal or diagnosis-related happens is a large benefit that a lot of people don’t think about.”
Chicago’s young end-of-life specialists provide varied forms of care. Draw hosts conversations with her Englewood neighbors who are navigating existential dread. Phelps massages the shoulders of an Uptown resident who has spent years bearing the burden of grief. Burns sits with Far North Side neighbors planning for a nearly unspeakable reality where they leave their children behind. Kopas spends hours studying the logistics of hospice care options so her client has the information needed for a death with dignity.
Regardless of the day-to-day appearance of their work, one message stays consistent: All of Chicago’s communities need end-of-life support.
“We need younger workers, older workers, Black workers, Hispanic — we need everybody because everybody is gonna need this type of care. It’s not just one group that dies or gets sick,” Burns said. “Everybody needs it.”
It was New Year’s Eve, and my wife and I were visiting my father in his long-term care apartment. He had been cautiously wandering around, waiting for a visit, when we arrived, something he’d been doing since my mom had died a year ago. He looked frail. The “surprise question” occurred to me: Would I be surprised if he passed away in the next year?
No. I wouldn’t.
After we’d spent some time together, I asked his wishes for the coming year.
“I don’t know,” he replied. “I’m 101 years old. I was married nearly 70 years and have finished my life. Marcel, I am very much afraid of dying. Will you ensure that I don’t suffer and that dying won’t take too long?”
I promised him I would try.
The second week of January, I received a call that my father had fallen and was in pain. He had no fracture, but he insisted he did not want to get up anymore. I drove the 120 km to his home, thinking about all of the possible scenarios. My first thought was to get him on his feet again, with enough analgesics to overcome his fear of falling. As a geriatricianson, I had always tried to keep my parents active and felt proud that they had enjoyed so many years together this way.
But would such encouragement fit the situation my dad was in now? He’d asked me to make sure dying didn’t take too long. Was it already time to consider death by palliative sedation? I felt uncertain. To qualify, he needed a symptom that could not otherwise be helped, and death had to be expected within two weeks.
When I arrived at his bedside, he repeated, “I don’t want to get up anymore,” and again, he asked me to help alleviate his fear of dying. I had to honour his heartbreaking request for a peaceful death. With a leaden soul, I went to the doctor on call — luckily his own physician — and asked for his assistance in ensuring a peaceful death. We discussed all options, acknowledging my father’s increasing frailty, despair and anxiety, and we agreed to start acute palliative sedation with midazolam, adding morphine according to the Dutch national protocol. I watched as the doctor prepared the equipment, feeling reassured by his calm professional acts.
My father could not understand the plan himself, but after an hour or so he woke for a few seconds and, with a frail smile, said goodbye to my sisters and me. We made a schedule for staying with him and I took the first turn. I sat next to him for two hours, and just after his second dose of morphine, he stopped breathing and passed peacefully away, just as he had wished. Sadness and relief turned to warm gratitude in my heart. Life had given us a sensitive and wise physician who enabled us to overcome what my dad and I had feared most.
***
In December of the same year, my 86-year-old father-in-law asked me to come to Antwerp and talk to him about the options for assisted dying. He had metastatic prostate cancer and had not recovered over six weeks of hospital care. He was bedridden with a toe infection and painful pressure sores. My reflex, again, was to involve geriatricians and try to get him on his feet. However, my father-in-law, an engineer by profession, had decided it was time to turn off his engine after losing hope for sufficient recovery. My wife and I explained to him what medical assistance in dying and palliative sedation could look like, as both are allowed under certain conditions in Belgium.
Without hesitation, he chose medical assistance in dying. He was very satisfied with his life, having experienced war, liberation, marriage, births, retirement and nice family holidays. In line with his story of life, he did not want to deteriorate further and end his life in pain and misery. We kept silent while he wrote his last will, then thanked us for everything and suggested we should now watch the Belgium versus Morocco World Cup soccer match.
When the game ended, saying goodbye was hard. We looked into his eyes, still bright, and shook his hands, still strong. We knew it was the last time. But his calm smile wordlessly assured me it was time to turn off my own geriatrician’s inclination to pursue mobility and functional improvement. Death was made possible within a week, and after ensuring that all requirements were met and speaking to each family member, his oncologist carried out the procedure carefully in the presence of his children.
***
Just two weeks later, our Spanish water dog, Ticho, made me reflect again on what’s needed most at the end of a long life. For 16 years, Ticho had been my much-loved companion and daily running mate. I had begun to dream he might become the world’s oldest water dog. However, his sad eyes now showed me that his life’s end was close, also evidenced by having nearly all possible geriatric syndromes: slow gait, repeated falls, sarcopenia, cataract, dementia, intermittent incontinence and heart failure.
Still, he came with me on short walks until, one day, he became short of breath, started whimpering and did not want me to leave him alone. Patting calmed him a bit, but I realized we needed to help him die peacefully instead of trying to mobilize him again. Though not comparable to the last days of my dad and father-in-law, there were echoes.
Our three adult kids rightly arranged a family meeting, as Ticho was their sweet teddy bear. We agreed to consult a veterinarian and ask for help with a good farewell. Next morning, the vet agreed with assisting dying. She said Ticho was the oldest dog she had seen so far, and she reassured us that it was the best decision we could make. Again, I felt very thankful for this professional and compassionate help. Ticho died peacefully after sleep induction and, together, my son and I buried him in our garden.
***
Strangely, although death in old age is as natural as birth is for babies, pediatricians seem much more involved in deliveries than geriatricians are in dying. These three encounters with death in my life made me feel I had fallen short so far as a doctor, having undervalued assisting dying at old age. How to guide people to a better end of life was largely left out of my training as a geriatrician. Like pediatricians, geriatricians prefer to embrace life. In geriatric practice and research, we tend to reach for the holy grail of recovery by improving functional performance and autonomy to enhance well-being for frail older people, rather than focusing on facilitating their well-being over their last days. In this tradition, I practised hospital-based comprehensive geriatric assessment and integrated care management, as this had proven effective in giving older people a better chance of discharge to their own homes.
In my research, I had steered a straight line toward longevity and improving autonomy, in accordance with the dominant culture in society and medicine. I had excluded older people with short life expectancies from our intervention trials and did not adapt outcomes to this stage of life. Even for our recently updated Dutch handbook on geriatrics, we did not describe death or dying in any detail. I served many older people in their last days and hours, but did so with limited experience, few professional guidelines and little legal leeway.
Now, having been helped so compassionately with the deaths of three beings close to me, I realize how rewarding it can be to switch clinical gears from recovery-directed management to dying well, and to do so just in time. Older people can show and tell us when they arrive at this turning point and are ready for ending life. I hope other physicians will realize, as I have, how important it is to allow death into a conversation, even a care plan, and to be adequately trained to do so. Perhaps we also need our own turning points as physicians to get ready for the delicate responsibility of compassionate and professional assistance in personalizing good death in old age.
Author Amy Ettinger, center, with her husband Dan White and their daughter Julianna White at Disneyland in March.
by Amy Ettinger
Last month, I found out I have Stage 4 uterine leiomyosarcoma, a rare and aggressive cancer. Doctors say I may have just a few months to live. Treatment could buy me a little extra time, but not much. My disease is advanced and incurable. My prognosis has left me shocked, sad, angry and confused. I wake up some mornings raging at the universe, feeling betrayed by my own body, counting the years and the milestones I expected to enjoy with my family.
I am leaving behind a husband and 14-year-old daughter I adore, and a writing and teaching career I’ve worked so hard to build. I’ve been doing a lot of thinking about my life, and in addition to the horror, a surprising feeling has taken hold: I am dying at age 49 without any regrets about the way I’ve lived my life.
I learned that lasting love is about finding someone who will show up for you
In my teen years, I fell hard for a boy who broke my heart, not just once, but half a dozen times. It was an obsessive first crush, the kind that made me stop eating and sleeping. He broke up with me and we got back together many times in high school.
The feeling was addictive, although it made me miserable. Even after I graduated, I could not get him out of my head. His story ended tragically — he took his own life at age 21. His death was heartbreaking, but my fraught relationship with him, and the traumatic aftermath, taught me what I ultimately wanted in love — safety, support, fun and adventure.
I needed a partner who would help me feel good about myself, someone steady, reliable, and free from all that romantic drama.
A few years later, I met my future husband, who was insecure and grappling with his own worries. Dan was smart, bookish, funny and kind. His love for me was constant and never in question. He was a writer, but instead of being competitive with me, he supported my career. Dan and I have been together 25 years, never having broken up or even separated, even for a day.
I pursued my dream career with passion
“No one can make a career out of writing.” It was a statement I heard from almost everyone I knew, from teachers to parents to concerned friends. I was told I would face a life of rejection and begging for late paychecks.
But I knew I could not survive waking up each day to the morning commute and heading to a 9-to-5 office job under fluorescent lights. I like to be in charge of my own life and schedule.
When I wanted to write a reported history about ice cream in America, some people laughed.
“I can see it as a magazine story, not as a book,” one agent wrote me.
And yet I went on to land a contract with Penguin Random House to travel the country, eating ice cream, gathering research, interviewing Jerry from Ben & Jerry’s, and riding around on the back of an ice cream truck through the streets of Bensonhurst, N.Y. The book contract was lucrative, and the publication of “Sweet Spot: An Ice Cream Binge Through America” opened up opportunities I never expected, like being on NPR and teaching creative nonfiction writing.
>In the last few years, I have been able to mentor and coach dozens of promising writers. In return, these students, with their sincerity and soaring ambitions, helped revitalize my own writing, reminding me why I went into this business in the first place.
I have never had a bucket list; instead I said ‘yes’ to life
I’ve always tried to say yes to the voice that tells me I should go out and do something now, even when that decision seems wildly impractical. A few years ago, with very little planning, my family and I got in a car and drove 600 milesto a goat farm in central Oregon, where we camped out for four days to watch a solar eclipse. I once jetted off to Germany on two days’ notice, spending a week exploring Dresden and hiking through the Black Forest.
“Money always comes back, but if you miss out on an experience, the opportunity may never come back.” This has been my mantra since I met Dan. Even when our bank account was low on funds, we decided to move to New York City to pursue our writing dreams. It was ridiculously hard at first, but it worked out because we gave ourselves no other choice.
I’m a good saver but things like retirement accounts were never important to me. When given a choice between taking a family trip to Kauai or squirreling money into a 401(k), I always chose to head for the islands.
I found people in my life who can accept me as I am
I don’t try to hide who I am or apologize for it. I am a bit of a hermit. I am sure I have hurt people’s feelings with my behavior from time to time by ducking out of parties early or choosing not to go to Happy Hour. I have spent very little time worrying about it. I think it’s more important to find people who get me and accept me than want to change me. I have done my best to avoid people who come at me with unreasonable expectations. And because I don’t have to spend any time covering up my real self, my friendships are genuine. Since my diagnosis, I’ve had a chance to tell my friends how much I love them. They’ve told me that, too, and I deeply feel it.
I live where I want even though the numbers never add up
I love spending time in the redwoods and by the ocean. Just a few months ago, I was walking four miles a day along the sweeping ocean coastline at West Cliff Drive where I could see surfers and otters frolicking, and humpback whales lunge-feeding just off the shoreline. This became my everyday routine.
My favorite spots are within a 10-minute drive of my house, and most are still accessible even as my energy continues to drop off as the cancer spreads through my body.
The flip side of this dream life is the cost. My family and I live in one of the most unaffordable places in America.
Dan and I have talked dozens of times about uprooting, but my friends and our writing community are in Santa Cruz, and my daughter loves her friends and her school, so my husband and I have chosen to stay. My family will never own a house — at least not in my lifetime — but at least I am dying around people who love me and are bringing me meals when I need them. These are people who are willing to show up for me no matter what. And I know they will show up for my husband and daughter, even after I am gone.
The end of my life is coming much too soon, and my diagnosis can at times feel too difficult to bear. But I’ve learned that life is all about a series of moments, and I plan to spend as much remaining time as I can savoring each one, surrounded by the beauty of nature and my family and friends. Thankfully, this is the way I’ve always tried to live my life.
Reality knocked me for a loop one evening when my father-in-law called from his home in another state and asked for help. This kind of request was very uncharacteristic for him. We responded immediately and drove to his home. After much conversation and many questions from both sides, we eventually came to the hard truth. His cancer had progressed and, to my mind, was most likely terminal. I dug in and started contacting his doctors, trying to sort out his health issues and prognosis. This took most of a day. I came to realize he was seeing nine physicians! He was in a desperate state of denial. The oncologist repeated that he had been very open and clear with my father-in-law about the cancer and its spread.
My father-in-law had been readmitted to the hospital with a very determined but misguided surgeon. My father-in-law thought the surgery proposed by the surgeon would be a cure. It wouldn’t be, and I had the unenviable task of discussing end-of-life matters with the patient, something the surgeon should have been upfront about.
Hospice came to the hospital to discuss the care they could offer him at his home. He elected to enter into hospice, and we took him home. At this point, he was feeling fairly well, and he had a glorious two weeks with friends and family coming for visits from many miles away. Meanwhile, I quickly discovered I was in unfamiliar territory when it came to his care. It was increasingly difficult for me to care for someone I loved and had a close familial bond with. The amounts of medication he was allowed, the hard decisions I had to make… all were uncomfortably entwined with the closeness of being family. He asked for teaching regarding his health and prognosis, and we spent hours discussing end-of-life matters and the decisions to be made. Even though family was in touch, they were in their stages of denial. I became the liaison for the family’s questions, as well.
Uncharacteristically for me, I was struck with uncertainty, processing my grief while maintaining my professional duties. I relied heavily on the hospice nurses as they made their daily visits. The type of care I gave him, the large doses of medications that kept him comfortable… all were different when compared to my decades of working to save lives and titrating medications for patients who would, with the care given, most likely live to go home and resume their lives. I found myself relying on the hospice nurse, asking questions like, “Are you sure it’s ok to give him that large a dose of painkillers?” She worked with me, explaining how different this type of nursing was compared to the care given to save the lives of my usual hospitalized post-surgical, cardiac, neuro, psyche, burn, chronic respiratory, and emergency patients.
There were different, more intense emotions involved in caring for this terminally ill, beloved family member. I second-guessed myself in areas where I normally was quite confident. The advice that most helped guide me through the nights of caring for him was given to me by the hospice nurse. She repeated to me several times, “This is different from the nursing you are used to. You medicate this patient for his comfort… whatever it takes. You cannot overdose him. I repeat, you cannot overdose him.” So I learned a new skill. I learned to titrate medication for his comfort, to give him what he needed, without second-guessing myself. I kept him comfortable but functional.
And one night, he collapsed as he left the bathroom. He had no perceptible heartbeat. He had no perceptible breathing. After 15 minutes, he sat up and started talking! It blew my mind. Once he was settled back in bed, I teased him about him having left us to visit his favorite brother and his much-loved mother, both deceased. He suddenly looked at me with complete seriousness and said, “How did you know where I was?” He was thoughtful for the next few hours, then quietly said, “I’m ready. I’m ready to go, and I’m not afraid. I’ve done everything I needed to.” Three days later, he left us. That time there was no resurrection.
— Reframing life in terms of death reveals some of the biggest philosophical problems with how we think about living systems.
By Adam Frank
Definitions of life are notoriously hard to pin down. Is a fire alive? It has a kind of metabolism, and in a sense it reproduces by spreading. Is a crystal alive? It certainly grows. What about a virus, which can reproduce and mutate, but only if it can find a living cell to use as a host?
Scientific definitions of life tend to focus on things like reproduction, metabolism, heredity, and evolution. But there is another, more basic property of life that has profound consequences for its study, and which I want to explore today: the capacity to die. While this may seem obvious, reframing life in terms of death reveals some of the biggest philosophical and scientific problems with the way we think about living systems.
You are more than your DNA
Focusing on the biomolecular mechanisms of life has yielded remarkable insights into what happens inside cells. However, this emphasis over the last 70 years on molecules such as deoxyribonucleic acid has produced a kind of myopia that can lead researchers to blind themselves to a critical insight. Life is not just molecules. It cannot be reduced to the interactions of a set of molecular actors. Instead, life is really about organization. This is why, alongside the emphasis on biochemistry, there has always been a focus on life as an organism. An organism is a whole that is also wholly invested in its interactions with the environment. Biomolecules would never take on the activities they play in the cell were it not for the higher levels of organization the cell makes possible.
And this is where death comes in.
Biologists Humberto Maturana and Francisco Varela developed the concept of autopoiesis in the 1970s and 1980s to describe the essential character of life as an organism. Autopoiesis means “self-producing.” The term, which Maturana and Varela coined, refers to a kind of strange loop that occurs in living systems whereby the processes and products needed for an organism to survive must be created by the processes and products needed for the organism to survive. The classic example is the cell membrane, whose presence is required to create the very compounds that maintain it.
Over the next year I will be writing more about autopoiesis, as it forms part of a new research program on life and information funded by the Templeton Institute. The key point for today is to understand that one thing Maturana and Varela wanted to focus on with autopoiesis was its intrinsic capacity to end. To be an autopoietic system is to constantly face death.
To be alive is always to live in a “precarious condition,” as Varela called it. You, me, a butterfly, a single-celled organism — all life must constantly be at work to produce and maintain itself. Life can never take a rest from the internal activities it must carry out to do that. And this self-production and self-maintenance must work on a remarkable array of scales. At the molecular level, the ribosomes that drive life’s nano-machinery must never halt. At the cellular level, the membrane can never stop its work of monitoring and adjusting the flux of compounds into the cell. At the system level in more complex life, the various components of a plant or animal must always be synchronized and synchronizing.
Or else, what?
We know the answer to that question, for it drives so much of our higher animal psychology: or else, we die. The organism is always and forever bound to its state of precariousness, and eventually that precariousness must win. It always wins. To be alive is to be able to die.
Life is not a blender
This emphasis on death as the definition of life serves many roles and will be useful for many purposes. On a purely scientific level, it can help us understand which features of organisms and their organization to focus on. This is important for the Templeton project I am beginning, because it sharpens our focus on how information can serve to keep an organism viable, i.e. self-maintaining.
On a philosophical level, the focus on death reveals a key problem with reductionist descriptions of life that rely on what is called the machine metaphor. For reductionists, life is nothing but a set of molecular mechanisms. We are therefore nothing but biochemical machines. This is a fundamental mistake, because while a machine can be switched off, there can be no “off” button for life. Even seeds that remain dormant for years are not “off” like my blender is off when I am not using it. Life is not a machine.
Finally, understanding life as what can die has a personal or even spiritual valence. It gives the lie to the strange transhumanist, techno-religious fantasy about conquering death. While I am all for extending my life if I can, I would never think to avoid its end. Instead, what I long for is the fullest experience I can muster out of this strange trip. Then when death does come, I will greet it like the old friend it has always been.
