Each semester, a new classroom is filled with inquisitive students intrigued to uncover the perplexities behind the taboo topic of death. Taught by Chapman sociology professor Bernard McGrane, the “Sociology of Death” course takes students on an enlightening journey to confront the reality of mortality.
It takes a conscious effort to confront the idea of your life ending, McGrane said. On some level, every human being knows that they are going to die; but some others refuse to believe that death will happen to them.
“There’s a quote by Woody Allen that says, ‘I’m not afraid of death; I just don’t want to be there when it happens.’ That encapsulates Western attitudes toward death,” McGrane said. “Out of sight, out of mind; it’s not going to happen to me.”
McGrane’s interest in teaching “Sociology of Death” stemmed from his earliest experiences with Buddhist teachings, as death and impermanence is a component of Tibetan Buddhism.
“I had an interest in Eastern philosophy and meditative ways. I started connecting with it very early on – philosophically and personally – in terms of my own practices and spirituality,” he said. “Through readings, I discovered so many different avenues on the history of death and dying and how radically that’s changed over the years. Through all of this, it came together as a course.”
In the McGrane’s course, one specific assignment seems to stand out to students most – the task of visiting a funeral home and planning one’s own funeral. Students began to organize their own funeral in detail – from finances to whether they would prefer a coffin burial or cremation. McGrane told The Panther that this investigative experience gives students access to the funeral industry, the state laws and the practical skills of arranging a funeral.
One of the funeral homes in close proximity to Chapman that students visited for their funeral home assignment is the Shannon Family Mortuary on East Maple Avenue in Orange. The Shannon family declined to comment
“I’m not always the most outgoing. To go and talk to a stranger about death was difficult,” said Andreas Ter-Borch, a senior sociology major. “But I didn’t expect the funeral industry to be a money-making machine. Not everyone can afford to give their loved ones the funeral they think they deserve.”
Although Ter-Borch doesn’t always feel comfortable talking about death, the course has helped him recognize the significance in doing so. He didn’t expect to become so emotionally invested in the class, but McGrane’s required journal writing became therapeutic for him, helping him understand that humans can’t fully enjoy the quality of life without first accepting death.
“We strive for longevity, even if the quality of life is bad,” Ter-Borch said. “We are way too focused on avoiding death rather than improving the quality of our lives and living our lives to the fullest.”
McGrane’s first taught the course in 1980 at Colby College in Maine, when it was titled “The Sociology of Death and Medicine.” In 1983, McGrane moved to California where he began teaching at the University of California, Los Angeles, renaming the course “Sociology of Death,” which he eventually transferred to Chapman. “When things weren’t as legally restrictive as they are now, I would take my students to watch autopsies,” McGrane said.
“I wanted them to be exposed to dead bodies.” Lily Florczak, a senior screen acting major and current student in this course, said that if observing autopsies was a part of McGrane’s curriculum today, she would feel uncomfortable, but ready for the exposure.
“His class prepares you for something like this,” Florczak said. “But I do think it would only be a good idea if people had the choice to opt out.”
Florczak enrolled in the class because she didn’t know how to handle death well and thought it would help her own growth.
“I have learned that grief is not a handbook or a series of rules that you follow and then you’re OK,” Florczak said. “It’s different and unique and intimate for everyone. Understanding that death is a part of life is a personal process one must go through in order to heal.”
For the past few months, when appropriate, I have asked some of my patients what it feels like to die. My reason for this is because I want to provide better care; I want to truly tap into all the ways that we can relieve someone of the struggles they experience when they are dying. I found it interesting that most people said that usually, no one asks that particular question. I explained my reason for wanting to know, and almost everyone had something to say.
I think we always assume pain is in the forefront, and that has proven to be true but it goes deeper than that. With the pain, comes the fear of never being free of the pain. The emotional exhaustion from having to constantly try something new, or increasing something that doesn’t work, or worse, not having it even touch the pain at all, is a heavy weight to bear. There is a very common thread amongst people who are experiencing pain; no one wants to die feeling that way, or worse, living that way until they die. While medications are effective most of the time, usually they just knock the patient out for an hour or two, and then are woken up by their pain once the medication wears off. Each person told me they do not want to die that way. One person said to me, “every day I lay here in this bed and I don’t move; not because I am paralyzed physically, but because I am paralyzed by the fear of making my pain worse if I move. Every time someone comes in here to reposition me, or check on me, I prepare myself for pain”. This resonated huge for me.
Death is hard enough, but death with pain is a constant debilitating struggle. I certainly can’t speak for anyone else, and I am in no position to tell you what to do, but after hearing this over and over again, and as a patient advocate, I can assure you anyone nearing the end of life, struggling with severe pain does not want to hold on and wait it out. They certainly do not want to feel this way until they take their last breath. My advice is if given the opportunity to ask them what they want or need, and they have a voice, listen to them and respect their wishes. It may not be something you approve of or agree with, but this isn’t about you. Imagine if you were able to be the difference between a painful or a peaceful death.
Emotional pain is a runner up to physical pain for those at the end of life. You would be surprised at how many people are actually not afraid to die. They are not as focused on the death itself, but more often, the amount of time it takes to get there. One person said to me, “every morning I wake up, I want to cry because I am still here”. Lying in a bed, day after day, knowing the inevitable is around the corner can be agonizing. I broke down and cried when a patient said to me, “I just want to die and I can’t. I am given a death sentence, of which I can no longer fight, but I am forced to just sit here and wait. There is no dignity in death. I have to die on someone else’s terms”. How do you respond to that?
They struggle with losing their independence, and having someone else clean and change them. This was repeated often. Having someone else move you from side to side, rolling you over as your head is pressing into the side rail, not even realizing that your shoulder is crunched down under you so hard you ache for hours after. And then, once you are cleaned up, re-positioned how someone else thinks you should be, you just lie there and cry inside. As death nears, they can’t help but think about their death; what it will be like, when it will happen and why the hell it isn’t happening sooner.
Meanwhile on the other side of this, is the family and loved ones crying at your bedside begging you not to leave them. So with everything else you are experiencing, guilt comes along and rears its ugly head. One person said to me, “I feel like I have let them down”. That is a heavy responsibility to carry. It is easy for us to think about how their death will effect us; but what most of us don’t think about, is how our feelings of their impending death effects them. So many have said to me how badly they wish they could tell their loved ones this isn’t their first choice, they didn’t want to get sick, they don’t want to die. They want to say they are sorry; sorry for getting sick, sorry for this long drawn out process, and most of all, sorry for the pain it causes everyone around them. Here they are dying and they want to apologize.
While I heard about the physical and emotional pain, I also heard the lovely things as well. Even people who were usually private and quiet and preferred to be left alone, welcomed the bedside visitors, the memories shared, the music played and the heartfelt goodbyes. They want to know how much they are loved, they want to know they made a contribution, and even though it is a hard pill to swallow, they want to know they will be missed. We think a lot about our own grief, and what saying goodbye to someone will feel like, but they have that too, in a very big way.
Some of the most beautiful conversations I have had are about the visions people see, the people standing next to the bed, or walking by a door or window… the ones that we can’t see. People tend to think they are delirious and afraid, but that is not what they have shared with me. In fact most feel safe and protected knowing there is someone watching over them, and perhaps waiting to guide them safely to wherever it is they will be going. I can’t help but wonder if it is our own fear that we are projecting onto them. What if instead, we asked about who or what they saw, encouraging them to trust us with their visions.
I cringe every time I see someone moving a patient without telling them first; repositioning them every two hours because that is what they were taught, not once thinking if this is truly in their best interest and certainly not thinking of the pain or discomfort this might cause. Whether or not they can verbalize, they should always be treated with kindness and respect. They should be offered a gentle warning before being touched, moved, or given medication. Lights should not be suddenly tuned on above their heads, after lying in a darkened room, covers should not be piled on heavily or quickly removed, and they definitely should NOT be lying naked for all to see when being changed. And please, if someone is actively dying, put the blood pressure cuff down, why are you taking their blood pressure? This irritates me like you can’t believe. Most vital signs can be assessed visually or by touch; at the end of life, please don’t put them through those tests. So many things we could do differently if we took the time to ask them what they need, or if we simply thought about their needs.
I remember awhile back, I walked in to visit a patient and said, “how are you doing today?” which seemed like a valid question. I had no idea the effect that question would have on someone until I received his response. “How do you think I feel, I am dying”. I never asked that question again. I start each visit now with, “it is really nice to see you”.
As I have said in many of my previous blogs, this is their experience not ours. The fact that we assume what they need, without asking, even when they have a voice, is selfish. As a society we have grown disrespectful on many levels and I am reminded of this most of all when talking to people who are at the end of their life. These are human beings who still have a voice and I think it is our responsibility to hear them. If we listen, if we truly take the time to ask them what they need, imagine the care we can provide not only to them, but also to those who do not have a voice, who can’t verbalize their needs. I only spoke to a handful of patients, so my findings do not speak on a global level, but I do think it is a good start to providing better care.
What does it feel like to die? It is emotional, it can be painful, it is usually sad, and it can sometimes be incredibly lonely. People do not die the same way and while there are similarities and common symptoms, each is still very unique. Therefore we need to take the time to listen, to observe, and assess what each person is experiencing, and what they might need when they are going through the dying process. We cannot treat everyone the same way. The only consistencies we should have when caring for someone at the end of their life, is that it is always done with kindness, compassion, respect, and honesty.
Herodotus, in the 5th century B.C., recorded an account of a race of people in northern Africa who, according to local lore, never seemed to age. Their secret, he wrote, was a fountain of youth in which they would bathe, emerging with “their flesh all glossy and sleek.” Legend has it that two millennia later, Spanish explorers searched for a similar restorative fountain off the coast of Florida.
We are still searching for the fountain of youth today. Instead of a fountain, however, it is a medical breakthrough, and instead of youth, we seek “transhumanism,” the secret to solving the problem of death by transcending ordinary physical and mental limitations. Many people believe this is possible. Observing a doubling of the average life span over the past century or so through science, people ask why another doubling is not possible. And if it is, whether there might be some “escape velocity” that could definitively end the aging of our cells while we also cure deadly diseases
Lest you think this concept is limited to snake-oil salesmen and science-fiction writers, the idea that aging is not inevitable is now in the mainstream of modern medical research at major institutions around the world. The journal Nature dubbed research from the University of California at Los Angeles a “hint that the body’s ‘biological age’ can be reversed.” According to reporting by Scientific American on research at the Salk Institute for Biological Studies: “Aging Is Reversible — at Least in Human Cells and Live Mice.”
The promise to end old age is exciting and mind-boggling, of course. But it raises a question: Why would we want to defeat old age and its lethal result? After all, as writer Susan Ertz wryly observed in her 1943 novel “Anger in the Sky,” “Millions long for immortality who don’t know what to do with themselves on a rainy Sunday afternoon.
Your boring Sundays notwithstanding, perhaps you think it’s obvious that getting old and dying are bad. “The idea of death, the fear of it, haunts the human animal like nothing else,” anthropologist Ernest Becker wrote in his 1973 book, “The Denial of Death.” Why else would we willingly put up with a medical system that seemingly will spend any sum to keep us alive for a few extra days or weeks?
It is strange that the most ordinary fact of life — its ending — would provoke such terror. Some chalk it up to what Cambridge University philosopher Stephen Cave calls the “mortality paradox” in his excellent 2012 book, “Immortality: The Quest to Live Forever and How It Drives Civilization.” While death is inevitable, it also seems impossible insofar as we cannot conceive of not existing. This creates an unresolvable, unbearable cognitive dissonance. Some have tried to resolve it with logic, such as the ancient Greek philosopher Epicurus’ observation that “death, the most terrifying of ills, is nothing to us, since so long as we exist, death is not with us; but when death comes, then we do not exist.”
Transhumanism responds, “Whatever, let’s just avoid that whole second scenario.”
Another argument for transhumanism is less philosophical and more humanitarian. We think avoidable deaths are a tragedy, don’t we? Well, if most of the 27 million annual worldwide deaths of people age 70 and over could be somehow avoided, wouldn’t that put them in the category of “tragedy”? Shouldn’t we fight like crazy to avoid them?
While the transhumanism movement is making progress, it isn’t without its skeptics. Some don’t think it will ever work the way we want it to, because it asks science to turn back a natural process of aging that has an uncountable number of manifestations. Critics of anti-aging research envision any number of dystopian futures, in which we defeat many of the causes of death before very old age, leaving only the most ghastly and intractable — but not directly lethal — maladies.
Imagine making it possible to cure or treat most communicable diseases and many conditions and cancers that were once a death sentence, but leaving the worst sort of dementias to ravage our brains and torment our loved ones. Wait, we don’t just have to imagine that, do we? As Cave puts it, we are “not so much living longer as dying slower.” Will transhumanism inadvertently bring us more of this?
No one can say conclusively where the transhumanist movement will go, or whether it will ultimately change the conception of living and dying in the coming decades. One way or another, however, I think we could productively use a parallel movement to transhumanism: one that seeks to transcend our limited understanding and acceptance of death, and the fact that without the reality of life’s absence, we cannot understand life in the first place. We might call this movement “transmortalism.”
Of course, a huge amount of work to understand death has gone on over the millennia and starts with the straightforward observation that confronting the reality of death is the best way to strip it of its terror. An example is maranasati, the Buddhist practice of meditating on the prospect of one’s own corpse in various states of decomposition. “This body, too,” the monks recite, “such is its nature, such is its future, such its unavoidable fate.”
Frightening? Far from it. Such exposure provokes what psychologists call “desensitization,” in which repeated contact makes something previously frightening or foreign seem quite ordinary. Think of the fear of death like a simple phobia. If you are afraid of heights, the solution might be, little by little, to look over the edge. As the 16th-century French essayist Michel de Montaigne wrote of death, “Let us disarm him of his novelty and strangeness, let us converse and be familiar with him, and have nothing so frequent in our thoughts as death.”
Perhaps while we wait for the promises of transhumanism, we should hedge our bets with a bit of transmortalism, which has the side benefit of costing us no money. Who knows? Maybe the solution to the problem of death comes not by pushing it further away but, ironically, by bringing it much closer.
Facing her own terminal diagnosis, a cookbook author pivots to recipes for coping with grief.
After being diagnosed with terminal brain cancer, Seattle cookbook author Caroline Wright turned her attention to writing children’s books addressing grief and death.
Seattle-based cookbook author Caroline Wright can teach you how to make a salad for four with grilled escarole, peaches, prosciutto, mozzarella and basil oil.
She can show you how a sandwich of grilled manchego cheese and sausage on peasant bread is made in the style of a master chef from Catalonia. For dessert, she’ll tempt you with a wicked coconut-caramel cake with malted chocolate frosting.
But when the leftovers are wrapped and put away, Wright can also impart some hard-won wisdom: how to talk to kids about death.
Wright, who studied cuisine at a renowned cooking school in Burgundy, France, always wanted to write as much as develop her skills in a well-appointed kitchen. At age 23, she became a food editor at Martha Stewart Living, and later brought her crisp, engaging voice to her cookbooks, Twenty-Dollar, Twenty-Minute Meals, Cake Magic! and Catalan Food: Culture and Flavors from the Mediterranean (co-authored with Daniel Olivella).
She hasn’t stopped writing about food. But in 2017 she was diagnosed with a glioblastoma, an aggressive, rapidly growing brain tumor, similar to the one that killed Sen. John McCain. With the possibility of death looming large, Wright turned her prose toward facing her own mortality — and starting the conversation with her kids.
Luminous and voluble in person, Wright is a self-described, inveterate doer. When not writing or cooking, she’s pursuing photography or quilting or knitting. She can’t stop making things happen, whether it’s tinkering with recipes for her next cookbook, or organizing a panel discussion at Town Hall (Saturday, Nov. 9) on children and grief. The event will explore how we talk to kids about death, a topic with no simple bearings.
Wright has written two recent books on the theme of child bereavement, inspired by her and her husband Garth’s agonizing challenge of communicating with their young sons about Wright’s still-uncertain prognosis.
The Caring Bridge Project (which came out in February) is a collection of Wright’s online journal entries from her year of chemotherapy and radiation treatment. It’s part of Wright’s written legacy to her boys, Henry, 7, and Theodore, 4. But she intended it, too, for a broader readership: families facing similar experiences with children’s anxiety and despair over loss.
This past summer she published Lasting Love, a picture book for reading aloud to bereaved kids. The heartbreaking but emotionally affirming story, with comforting illustrations by Willow Heath, is about a dying mother returning home from the hospital with a formidable friend: a mighty, furry creature who will always remain by her child’s side, as both an avatar of her powerful love, and as a faithful companion who never judges grief in any form.
Halfway through the tale, the mother passes.
“The child would know,” says Wright of her decision to include the mother’s death. “So stepping around that seemed silly. I wanted the kid to be part of spreading her ashes.”
For Wright, there was no option but honesty. She knew her kids would watch her change, physically, during treatment, and they would find her less available. Keeping them in the dark — especially the older boy, Henry — would have been unfair. “The thing kids can’t rebound from is broken trust,” she says. “There’s no resolution for that.”
When she and Garth first talked with Henry about her cancer, and how she and her doctors were doing everything they could, but she might die anyway, there were tears. But Henry devised a helpful analogy:
“Mommy’s brain is a garden, and there’s a weed in it.”
“Henry and I have had amazing conversations, poetic and hard,” Wright says. “If I die, I want both boys to have a relationship with their memories of me. If I lied to them, it would sully that relationship.”
Thirty-two months after Wright was told she’d likely have 12 to 18 months to live, she is miraculously cancer-free, but vulnerable to a swift reemergence of the glioblastoma. If you take cancer out of the picture, she actually became healthier while fighting the disease, radically changing her diet, dropping 40 pounds and growing lean and strong through yoga, energy work and exercise.
Wright says the boys now occasionally bring up her cancer at random times. When Theodore recently saw her short hair wet and matted after a shower, he grew weepy, recalling her treatment-related baldness, and associating it with being away from him.
The profundity of loss, and the despondency of a child left without the constancy of a loved one’s care, makes Lasting Love a benevolent bridge between a parent and son or daughter going through these troubles.
“The theme of Lasting Love is, literally, love lasting forever,” Wright says. “That’s what we were telling Henry. That was the only piece of hope that we could give him: Mommy’s fighting very hard. And even if mommy dies, the connection you have with her is never going to go away. And there are many loving people surrounding you.”
Wright’s Town Hall event is part of her outreach mission to regional families and to nonprofits concerned with children and bereavement. Among them is Safe Crossings, which supports grieving kids of all ages, at little or no cost. Amy Thompson, program coordinator, will join the panel, along with therapists from other organizations.
Thompson says the field of grief counseling for early childhood through adolescence is growing because of a rise in traumatic losses: gun-related murders, opioid-overdose deaths and suicides. Grieving kids are often isolated, subject to bullying, and told to “get over it” by clueless adults.
“The message from society to grieving young people is ‘move on,’ ” Thompson says. “But if you’re intensely grieving for months or even years after a death, there’s nothing wrong with you. Loss changes over time. As children grow and reach new developmental milestones, they can better process the permanency of death, and we see them regrieve.”
The attention Wright and Lasting Love are receiving in therapy circles and in the media is helping to normalize grief in children — in everyone, really. When she learned she had beaten seemingly impossible odds and, while not out of the woods, is without cancer, Wright celebrated with her family by making a favorite cake, although with a few adjustments: it was sugar-free, gluten-free and covered in carob frosting instead of her once-beloved chocolate.
“I live with great respect for this thing that may happen to me again,” Wright says of the glioblastoma cells that might still be lurking in her brain. “But I don’t live in fear of it. There is nothing to be gained by that. I might die and I might not.”
But the bond between parent and child will last beyond death, she says. “Kids are resilient. With support, they will have full lives.”
Doulas are tasked with maintaining a sense of calm for dying people and those around them, and opening the conversation about death and loss, topics that can often be taboo
In October of 2016, Gregory Gelhorn ran the Twin Cities Marathon. Seven months later, he was diagnosed with ALS, a progressive neurodegenerative disease that causes nerve cells to break down, resulting in muscle weakness and atrophy. The average life expectancy of an ALS patient, once diagnosed, ranges from about two to five years. The cause of ALS is not fully understood, and no cure is known. Gelhorn was in his mid-40s.
“It was a shock,” said Kathy Fessler, Gelhorn’s sister. “He was always the one who took the best care of himself.”
Dying from ALS is a singularly awful experience; the disease causes the body to progressively deteriorate while the mind remains clear and lucid. Gelhorn had loved being active. He had played three sports in high school, coached girls’ basketball and served as a travel director at Lakeville North high school in Lakeville, Minnesota. The disease progressed rapidly; soon, he was using a wheelchair and relied on a BiPAP machine to breathe. Doctors estimated he only had a few months left. Gelhorn and his family – his two teenage children, wife, parents, and siblings – began to grieve.
In the midst of it all, Fessler happened to see an article in the Star Tribune about Christy Marek, a certified end-of-life doula who lived only a few miles away. Fessler contacted Marek, who soon took on Gelhorn as a patient.
A doula, typically, is a professional who helps mothers during pregnancy and childbirth. Unlike midwives, doulas do not serve in a medical capacity; rather, their primary role is to provide emotional, physical and psychological support.
The practice originated in the natural childbirth movement in the US in the 1970s, alongside the Lamaze method and the popularity of alternatives to hospital birth, like water birth and home birth. That same generation of Americans who were having children in the 70s are now approaching their twilight years, and the practice of serving as a doula has expanded in scope. End-of-life doulas use the same concept as birth doulas: they provide support for the dying.
“On all sorts of levels, I think the Baby Boomers, that generation has just been here to shake things up,” said Marek. “The natural birthing movement, they did that. And now it’s the same thing. They’re saying, no, I don’t want the death my parents had. We are rich in possibility, why can’t I make this whatever I want it to be?”
End-of-life doulas are sometimes called death doulas, though many have reservations about the term.
“To me, end-of-life is a process,” said Marek. “The work I do with people isn’t just about that one point in time when somebody dies.”
Although doulas are not required to have medical training, many come from the healthcare field. Shelby Kirillin, an end-of-life doula based in Richmond, Virginia, has also been a neurointensive trauma nurse for over 20 years. It was her experiences in the neuro-ICU that led her towards becoming a doula. Many of the deaths she had seen there, she explained, struck her as cold, sterile and lonely.
“I just couldn’t imagine that the person dying had ever envisioned their death to be like that,” she said. “Dying isn’t just medical. It’s spiritual.”
Fascinated by the idea of a structured approach to end-of-life care that prioritized the individual wishes of the dying, Kirillin enrolled in a doula training course with the International End of Life Doula Association (Inelda), a not-for-profit that promotes the approach. Although there is no centralized regulatory body for doulas, training and certification programs are offered by a number of organizations, including Inelda and the Larner College of Medicine at the University of Vermont.
“There’s so much fear and anxiety about death,” said Janie Rakow, the president of Inelda. “The doulas are there to calm everyone down. They work with the dying and their families to educate, to explain what’s happening. That what they’re seeing is part of the dying process.”
Rakow and her business partner, hospice social worker Henry Fersko-Weiss, founded Inelda in 2015 to train doulas and promote their use in hospices, hospitals, prisons and homeless shelters. Their training program covers topics like vigil planning, active listening and doula self-care.
Part of what doulas do is open the conversation about death and loss, topics that can often be taboo or deeply uncomfortable for the dying or their family.
“Can you imagine if a woman was going through labor and no one around her was talking about it or preparing for it? There’d be an uproar if we treated birth like we treat death,” said Kirillin. “You have to talk about it. You’re dying and you’re no longer going to be here.”
Doulas help their patients plan out their deaths: talking with them about their wishes, and how they would like to spend their last day. Some prefer to die in a hospital, others at home. They decide who they want around them, whether it’s with all their family and friends, or a religious figure, or alone. They choose the details of the setting, whether they want to hear music, whether they want to have someone hold their hand, and what rituals – religious or secular – they want performed.
Doulas often also perform legacy work, the practice of guiding the dying to create tangible artifacts to leave behind for their loved ones. Sometimes, it’s a photo album, a collection of recipes, or a video archive. One of Rakow’s patients wrote a series of letters to her pregnant daughter’s unborn child, expressing her hopes and wishes for a granddaughter she knew she would never meet.
As death approaches, doulas are tasked with maintaining a sense of calm for dying people and those around them.
“One of my patients this past spring, as he was transitioning, he started to vomit,” said Kirillin. “I reminded everyone that when a woman is laboring a birth, sometimes she vomits. It’s the body’s natural way. Let’s just make him comfortable.”
Finally, the last part of a doula’s work comes a few weeks afterwards, when the doula meets with the deceased’s loved ones to reprocess and discuss everything that has occurred.
“It’s after the casserole brigade has come and gone, and everyone’s gone back to work,” Kirillin said. “We talk about grief and bereavement. You’re not going crazy. You can be happy and sad in the same moment. There is no timeline.”
Of course, the practice of guiding the dying on their final journey is not new. Death is not an unknown phenomenon, and the act of tending to the dying has existed as long as human civilization itself. Marek has a theory for why the need for a formalized approach to death has manifested now, in these particular circumstances – why the dying feel the need to contract a trained professional, rather than being able to rely on a more organic source of support.
“In America, a few generations ago, our communities were doing this work,” she said. “The reason the role is showing up in a formalized way now is that we don’t have those community ties any more, not in the same way, and certainly not the same level of responsibility to each other as used to be woven into our communities.”
Kirillin agreed: “I would love for our culture to never need me,” she said.
Much of doula work is the very definition of emotional labor, and though Janie Rakow suspects some doulas feel conflicted about taking money for their services, she sees the profession as no different from that of therapists or hospice workers.
“I had one of my patients tell me I wasn’t charging them enough,” she said, though Inelda also encourages pro bono work, and many doulas serve purely on a volunteer basis. She also cautions her doulas not to take on too many cases in a row, and to be cognizant of their own mental health. But, she said, the act of tending to the dying is not as depressing as many assume; rather, it can be very rewarding.
“When you sit with a dying person and they take their last breath, it is as amazing and awe-inspiring as someone taking their first,” said Kirillin. “It is important, and sad, and needs to be cherished.”
Gregory Gelhorn died in September 2018. He spent his last day in his home, surrounded by his family. Together, they watched a movie and listened to 90s prog-rock.
If you knew what day you would die, what would you do? Would you be more ambitious and try to do everything you didn’t get to do or wanted to do? Would we fall apart and die at the hands of ourselves? Would we say goodbye to our loved ones? Would you welcome death with open arms? Would you hold a funeral for yourself? Would you try to cheat death? Would you keep living life the same way until you died? Would you try to leave a legacy? To build something that will outlive you? But most importantly, would you live?
Yes, I know, we’re young, scrappy, and hungry and not throwing away our shots (I couldn’t resist these Hamilton references), so why would we even be thinking about death and legacies at this age, doing so you’d have to be obsessed with death or a goth. But here I am, an otherwise healthy twenty-one-year-old college senior talking about death and dying when most people would think, “well she hasn’t really lived yet so what does she know”. And they would be right, I know nothing about death and while I’ve had people in my life die, I don’t know really know how it feels to die. Because you don’t feel death and you don’t feel like you’re dying until you’re actually dying; you feel grief, sorrow, and despair and while that’s painful, that’s not dying. But it’s my job to provide a perspective into topics we don’t like to talk about and most often don’t even think about.
Our mortality is much closer than we think it would be, we can die tomorrow and never live to old age like the generations before us. Many things can kill us today and in the next decades. To put things into perspective, according to scientists that by the year 2050, human civilization would collapse if nothing is done about battling climate change. With rising world temperatures from carbon emissions and greenhouse gases, globally we would have more frequent and intense heatwaves, crop failures, more severe extreme weather storms like hurricanes, and massive plant and animal extinction with habitat destruction and pollution caused by rising sea levels and human destruction.
In the United States, unlike the rest of the world, life expectancy rates have dropped steadily since 2015 due to drug deaths and an increase in suicide rates. While yes, the Baby Boomer generation is getting older and they account for a significant number of deaths, it’s an increase in deaths by individuals between the ages of 24 to 44 that are the most pressing and made the most impact on the calculations of life expectancy. The 10 leading causes of death: heart disease, cancer, unintentional injuries, chronic lower respiratory diseases, stroke, Alzheimer’s disease, diabetes, influenza and pneumonia, kidney disease, and suicide. Suicide and unintentional injuries have seen an increase in numbers, both are highly preventable deaths. The leading causes of death for those aged 1-24 years are mainly caused by external causes, not chronic health conditions. Unintentional injuries accounted for 38% of all deaths, followed by 13% for homicides, and 12% for suicides.
I hate to be a downer by talking about death and the real plausible reasons we how might die. But it’s eye-opening, isn’t it? Our lifelong struggle to learn how to really live is being held hostage by two notions: our mortality and the sheer dread and denial we have towards it. Dying is easy, living is harder. I can’t offer you a plan on how to live but I can plant that seed in your mind of why you need to live. While yes you could die of the aforementioned things above and I’m sorry to scare you into thinking you might die sooner rather than later, but that’s my whole point: to scare you into living.
I think it’s safe to say that we’re all just temporary fixtures in the universe, here for a set time but not made for forever. I want us all to live, to stop worrying that it will be the end of the world if you fail that exam, the dread of not getting into that graduate school program, the anxiety of possibly not having a job after college, to stop playing it safe and go out and experience life because you don’t know when it ends or when your friends will no longer be by your side. Stop thinking about the future in terms of the goals you’ve set for yourself because that’s not what most people will remember of you and what you’ll remember of your life. You’re running out of time so stop waiting for it, for that future you aren’t even sure you’ll have.
Think about the fun stories you’ll never get to tell because you weren’t brave enough to go experience it, the many versions of yourself that you won’t become because you’ve played it safe with life, the many places you’ll never go to, and the people you’ll never meet who will make an impact in your life and maybe even fall in love with. So, go. Go take that class you want to take, apply for that job you’re not qualified for, take that spontaneous trip to New Orleans, get that tattoo, try those foods you were too scared to try, make some regrets and learn from them, and meet new people who will change your life forever. Go make some memories.
Death may be the ultimate stressful moment in our lives. Just thinking about the end is enough to cause your heart to beat faster. And while some levels of depression and anxiety are inevitable, those feelings need not overwhelm the death experience for you or your family. In fact, it’s possible to die well — to experience a sense of wellbeing as you approach the end. You can leave this life with a feeling of closure and a sense of contentment. That’s the difference between completing your life and merely ending it.
But stress disrupts well-being. It distracts you from prioritizing love, family, and dignity. Worry and fear interrupt precious time with family and friends. That’s no one’s idea of a good death. And while it’s easy to think you’ll skip this stressful step and go suddenly from a heart attack or stroke, the reality is the majority of us will need end-of-life care. So, put some thought and preparation into your passing now. Reducing stress will make it easier for you to say goodbye, and for your loved ones to let go. Here are six ways you can make dying the experience you want, rather than the experience you get.
Finalize Your Burial Arrangements
Preparing your burial arrangements lowers stress in several ways. For one, it puts you in control. Eliminate worry by outlining the type of service you want, the manner of internment, and the organ donation process. Burial arrangements also relieve financial stress from your family and friends. Carrying out your last wishes doesn’t have to be a financial burden for your family. So, find the best final expense insurance policy to cover costs. Or get a pre-paid funeral plan that kicks in after you’re gone. You’ll feel less stress knowing everything is taken care of.
Finally, by tending to your funeral arrangements yourself, your loved ones can focus more on spending time with you in your last day. And their grieving will be easier when they’re not weighed down with administrative tasks. Mourners often feel guilty devoting time to such business matters after a loved one dies.
Create a Living Will
If you become incapacitated before death, someone will have to make decisions for you. That’s a heavy responsibility to place on a family member or friend who may only have a rough idea of your wishes. But without a health care power of attorney (or proxy) to speak for you, you may end up being kept on life support longer than you’d prefer, or the opposite. An advanced directive or “living will” is a legal document that lists specific medical treatments you wish to receive and those you don’t. The directive takes the decision-making burden off your family’s shoulder.
To get started, have the end-of-life conversation with one or two people you would want to serve as your proxies. And also talk with your doctor so that everyone is on the same page. Living will forms vary by state. So, download your state’s advanced directive form to get started. If you don’t have the resources to create a living will, other forms of non-legal directives can work as some form of “proof” for your wishes. For example, write a letter to a family member expressing your wishes. Or record audio/video explaining what you want. While these aren’t formally recognized legal documents, they work better than nothing at all.
Make Amends
One thing that makes dying harder is knowing you’re leaving behind unsettled issues, old hurts, and past grudges. When possible, make amends with those you’ve hurt or who’ve hurt you. Now is the time for unburdening yourself and being honest with those you love. While you can leave those hurt feelings behind, your loved ones will carry them after you’re gone. And many will regret they didn’t say something when they had the chance. Knowing this will make leaving this life more stressful for you.
So, don’t put off making amends. Request a private audience with a loved one or wait for the right moment to broach the subject. Be honest and take responsibility for your part in the situation. Refer to the past event/issues that caused the rift, but don’t relive it all over again. And don’t bring up their responsibility; just explain your regrets and apologize. They will reciprocate. Think of this less as a discussion and more as a confession. So, listen more than you talk. The goal of making amends is to replace hurt and anger with forgiveness and love.
Revisit the Past
For those facing imminent death, the bulk of the conversation often focuses on medical needs, medications, or staff visits. While these are immediate needs are necessary, don’t forget the past. Revisiting old memories help us replace the current situation with one of our choosing — at least for a moment. Rather than a form of denial of death, recalling memories is an affirmation of our lives and our effect on others. For friends and family, recounting a past event is a handy way to show how a dying loved one impacted their lives. It’s often difficult for the dying person or loved one to find the right words in these moments. Words of condolence or regret can seem empty. But a pleasant or meaningful story can be a beautiful expression of our gratitude.
Recalling old memories is also a stimulating activity for Alzheimer’s patients. It fosters emotional connections and reduces anxiety. Use family albums, music, videos, or heirlooms to help prompt memories. Encourage family and friends who can’t travel or live too far away to send a short letter or audio recording. And don’t avoid humor. Include funny moments, old jokes, or humorous anecdotes. It may feel awkward at first, but laughter is nature’s way of helping us relieve stress and anxiety while connecting us.
Use Music Therapy
Studies suggest that music therapy has emotional and physical benefits for hospice and palliative care patients. Researchers found that patients who listened to music reported “less pain, anxiety … as well as an increase in feelings of well-being afterward.” Music therapy has a profound effect on people with cognitive and mental decline. The rhythmic nature of music requires little mental processing and helps stimulate memories. Choose music that your loved one enjoys, tunes from their childhood era, or a neutral New Age track. But don’t overstimulate; that can create stress. Take note of the other noises in the room. When mixed with many different sounds, even soothing music at a low volume to create a cacophony of stress.
Ask for Pain Medication When You Need It
Palliative care is about making patients feel as comfortable as possible until the end. And pain management and medication are part of this process. Unlike other vital signs, hospitals and staff can’t measure your pain. You have to help them know when you’re feeling discomfort. Still, some patients forego their pain meds because they want to stay awake to see their friends and family. Others see pain medication as “bad” substances or only for the weak or needy. But these are myths. Pain meds are integral to the palliative care process. And there’s no reason to forego pain medications that’s more important their your comfort. You may think you’re being strong for your family, but having to watch you fight intense discomfort will only increase their stress levels. Ask for pain medication when you need it.
These six tips will increase well-being and reduce stress when you’re nearing the end of your life. But once you’re faced with death, it’s important to know when it’s time to let go. Too often, we hold on too long out of a primal urge to keep going or fear of leaving our loved ones. Death is a natural process we all share. Take comfort in that immutable fact. Let your loved ones know you’re ready to go. They, too, will hold on to you, fearing that letting you go is “giving up.” This creates enormous amounts of stress. When it’s time, reassure them that — while you’re not ready to die — you have accepted it.
