In a recently viral TikTok series, creator Ali Tate Cutler spends time with her terminally ill grandma who has made the choice to end her life through euthanasia.
While sharing start-of-life stories – such as ultrasound pictures or childhood milestones – is commonplace, posting end-of-life “journeys” online has users conflicted.
Such stories raise questions of autonomy, vulnerability and privacy, but are ultimately useful in changing how we talk about preparing for death.
In Cutler’s series of videos, they show off their outfits before their “last lunch” together. Cutler’s grandma “Bubbie” gives life advice, and they talk through their thoughts and feelings about the euthanasia process.
Cutler’s videos are divisive. Many commenters criticise the attention gained through this subject, commenting, “Why would you publicise this? So wrong.”
However, some recognise it as an important story to tell and reply with their own stories about loved ones, showing kindness to Cutler’s family. Some recent comments have said:
This needs to be regular practice. Thank you for sharing your story.
It’s a blessing to be privy to conversations like this.
Sending her love on her next adventure. Safe travels to a beautiful soul.
It’s telling that many commenters thank Cutler and mention being “privy” to a usually private moment; we hear far fewer end-of-life stories than start-of-life stories.
Talking about death and dying
As scholars who research health, death and grief, we know there can be stigma and silence around end-of-life stories, despite an underlying obsession with death which pervades our media and social circles.
Experts in the field, such as those working in palliative care, call for more open conversations and stories about dying. They argue that not doing so is hindering happier deaths.
Mentioning death and happiness in the same breath may seem like an oxymoron. It’s natural that death and dying bring feelings of worry, fear, grief and regret. Those who talk about death and dying publicly (as we can attest as researchers in these fields) are often labelled grim, maudlin and even “clout-chasing”.
These reactions are understandable – we are biologically and socially conditioned to fear death. Our brains “shield” us from the reality of death, leading us to imagine it as something which happens to others rather than ourselves.
The “other people” we often imagine dying are elderly people. They can face infantilisation and assumptions that they are forgetful or incapable of making choices and speaking for themselves. Maturity of age, experience, autonomy and storytelling capabilities are overlooked.
Commenters assume Cutler is milking her grandma’s death for “clout” rather than enabling her grandma to tell stories which are important.
Cause to be cautious
Concerns of safety and vulnerability are legitimate and, of course, not all those at the end of their lives can tell their own stories. As life narrative theorist Paul John Eakin states, the breakdown of adult life and memory brings us “face to face with the end of an identity’s story”.
However, assuming that all elderly or dying people are beyond constructing stories of their identities or lives is folly. We must share end-of-life stories – safely, collaboratively – or risk oversimplifying the complexity of dying and denying the autonomy of dying people to share their feelings.
Out of pages and into our screens
End-of-life storytelling isn’t new, autothanatography – writing about one’s own imminent death – is an established literary genre.
This unique genre not only helps us process death (our own or a loved one’s), but also normalises anticipatory grief (grieving before the fact). Australian authors such as Cory Taylor and Georgia Blain have penned their own deaths.
This miniature is my life in words, and I have been so grateful for every minute of it.
As writers and creators like Cutler demonstrate, the end-of-life stage can be difficult and heartbreaking, but is also a time to reflect. Autothanatological stories, whether written or digital, are a chance to “shape” death and to contemplate the past and the future at once.
The platform is the message
Backlash aimed at Cutler may be due to her platform of choice. TikTok can be denounced as an app for young, vain people creating dance videos and “thirst traps”.
But content about dying is in demand, as evidenced by popular sub-categories “DeathTok” and “GriefTok”. The juxtaposition between lighthearted posts and stories about dying on the “video dance app” can be an adjustment.
Cutler, a Victoria Secret model, posts both kinds of content concurrently. Some users may find this jarring but it demonstrates that loss is an integrated part of life, not something separate. TikTok and similar sites are ripe for developing such nuanced conversations and even cultural practices around death.
Sites like TikTok create a unique space for end-of-life narratives to reach vast audiences through visual, auditory and algorithmic timelines, suggesting content, and encouraging engagement. Users interact with one another, and explore the complexity and inherent contradictions in reflecting on a life while preparing to lose the person who lived it.
As Cutler responds to a commentor, “This was the hardest and most beautiful conversation I’ve ever had”.
These narratives are moving rapidly from the pages of memoir to the instant accessibility of our mobile phones and we must make conscious efforts to be open to diverse stories about dying.
If we interrogate how we feel when we encounter challenging or surprising end-of-life stories, we can broaden the ways we think and talk about dying, and, indeed, even celebrate happy moments among the sad.
Author Michael Doring Connelly sees the care of elderly people as the biggest problem in healthcare.
By Jessica Hall
A new book examines death and dying in modern America.
After several decades of working in the healthcare industry, Michael Doring Connelly saw how the the insurance industry and the medical industry are often at odds with the realities of life and death.
Connelly served as chief executive of Mercy Health, one of the nation’s largest health systems, from 1994 to 2017 and previously served as an executive with the Daughters of Charity National Health System (now the Ascension Health System) and has experience with healthcare systems in Germany, the United Kingdom, Denmark, Sweden, and Spain.
Connelly spent five years writing “The Journey’s End: An Investigation into Death and Dying in Modern America,” published by Rowman & Littlefield, to discuss ways to reform healthcare in America, educate and empower consumers to advocate for better care around dying and explain how more care doesn’t equal better care.
MarketWatch: Why did you write this book?
Michael Doring Connelly: I spent a lifetime in healthcare trying to reform things and didn’t have much success. With the book, I tried to target what to improve and the care of elderly people is the biggest problem in healthcare.
MW: What’s the biggest mistake our society makes around death and dying?
Connelly: It’s a confluence of forces. Everyone is afraid to die. The healthcare systems sees dying as a failure. But if you’re in old age, dying is not a failure. It’s a natural progression. People will say “Do everything possible to save Mom” and it’s a terrible thing–it puts the patient through hell. Healthcare providers feel compelled to do this. The payment system encourages it. To do everything possible today can be a disservice.
MW: If you had the power to control the circumstance of your death, how would you want to die?
Connelly: I would like to die at home with my family. Today, the majority of people die in institutions and horrifically, in ICUs (intensive care units). If they’re dying, they shouldn’t be in the ICU. It’s really abusing the patient. But people cry “Do everything possible” because they don’t want to lose their mother. I don’t want that.
MW: In the book, you urge older adults to develop a ‘death literacy.’ What does that mean?
Connelly: The Lancet published a project on death and dying. The research, conducted by a worldwide commission of experts, suggested that we need to regain our appreciation for the value of death. Death literacy–it’s knowing what to expect in old age. It’s the knowledge and skills that old people need to navigate aging and dying. People don’t like to accept that they can’t physically and mentally do what you did before. Healthcare does a poor job at dying at home and the public is misinformed about hospice. If you get a terminal diagnosis, get an evaluation from a palliative healthcare provider who looks at the whole picture. Hospice–by not treating you–actually results in you living longer and more comfortably than active treatment would. It’s a better option. It’s accepting trade off, accepting that you won’t live forever. Physicians are the lowest users of healthcare at the end of life because they understand–they don’t try to have everything done to them.
MW: How did COVID affect people’s views on death and dying?
Connelly: Clinicians generally aren’t interested in recommending palliative care or hospice. But during COVID, they more often made those referrals because the system was overloaded and palliative care and hospice made sense. During COVID, there was so much death that there was a temporary awareness. But generally there’s a fear of death–everyone wants a legacy, wants to be remembered for something. In the book, I talk about it being more important to understand your life than extend it.
MW: Is there a balancing act that allows you to strive to stay healthy as people live longer while also accepting the reality of a natural death?
Connelly: Try to stay active as possible for as long as possible. And then, education becomes a very powerful tool in this area. There was a study that showed patients videos of the procedures they were requesting. They weren’t understanding what they were really asking for. Once they saw what the procedures entailed, their views on what they wanted changed. Under the healthcare payment system, doctors aren’t paid to patients, help them prepare for what’s the come and educate them. That requires a lot of time and care and multiple conversations. It doesn’t really happen. There’s an obsession with coding in healthcare payment systems and talking and educating isn’t a payment code. That’s why concierge medicine is becoming so popular. Patient gain greater access and doctors have more time.
MW: What do you want to stay with readers after they’ve read your book?
Connelly: Prepare for dying. Make an informed choice. Educate yourself. People have false assumptions of what works. It’s your life and you need to prepare for the end of it. We all do a lot of stuff to prepare for a newborn: we buy all sorts of things, redo the house, read a lot of books and talk to everyone for advice. Dying is a similar experience. We have to prepare for it. The healthcare system isn’t helping you learn about dying. You, as the patient, need to ask for palliative care. If you’re referred to the ICU, or for a transplant, or a feeding tube–ask for a consult with a palliative care doctor first.
MW: What reform do you think we need in healthcare?
Connelly: An economic tsunami is coming at us. There’s a significant shift in the demographics of the U.S. We have will 78 million people on Medicare by 2030. I can’t believe we’re in denial about this economic force. We could stop spending unnecessary money on end of life procedures because it isn’t working. We’re dumping this burden on future generations in the form of debt financing. I spoke about 12 things to change healthcare. There’s the issue of hospice. A doctor needs to certify that you’ll die within six months. No doctor want to say that and tell a patient that. So, doctors don’t bring up hospice until the last seven to 12 days. We also need to expand home care days for hospice. There’s a limit on that and that makes no sense. Congress is too overwhelmed with all that’s facing mankind and getting re-elected to make changes. The insurance world is obsessed with proof. It’s difficult to prove that hospice will cost less. So, we need and want consumers to make these changes. It’s not going to come out of Congress or the healthcare system. We need a cultural change. Do you care about your kids and grandkids? Don’t burden them with the cost and complexities of dying.
— A former ICU nurse and no stranger to death, I didn’t realize that the most meaningful way to ‘do something’ for my dad was to be present at his bedside, ‘doing’ nothing at all.
Bronze lovers adorn a tomb in Milan’s Monumental Cemetery.
By Sherrie Dulworth
Over the past 20 years, I have been present with four loved ones as they died of terminal illnesses in their homes. Before their deaths, I assisted with comfort care and busied myself helping with household chores. Busyness made me feel useful. Sometimes I talked or listened; other times, there was nothing to do except to sit together in silence, which was a challenge for me.
As a former ICU nurse, I was no stranger to death, but I was a stranger to understanding that some actions are more significant than “doing.” While many of the tasks were important, some even necessary, they were not what mattered most.
Instead, it was the seemingly simple act of being present, of bearing witness in the face of impending death, that was the most meaningful — and the most difficult — thing I did.
More people now choose to die at home in this country than in any other setting. It’s likely, then, that in the future, many of us will be present with someone who is dying. If they are not at home, we might be together in a hospital or nursing home. Yet our society offers little guidance on how we can best emotionally support someone who is dying. There is also scant advice on how best to support ourselves.
Might this be a good time to reflect on what we hope for others and for ourselves in the final phase of life? How do we want to show up? What will we want and need from our loved ones? I interviewed a variety of experts versed in good endings.
BJ Miller, a palliative care physician whose Ted Talk, “What really matters at the end of life,” has been viewed more than 16 million times, told me, “There is poignancy and power in just being present with someone, but our minds get in the way. Our minds tell us to go do things or to run away. I think we need to honor the power of just being, naming what a profound offering it is, and how difficult it is, to sit with suffering that you can’t change.”
This is not stoicism. Nor is it, as Miller said, “an exercise of the intellect. You could force yourself to sit still at the bedside, but will that register with the person in the bed if you aren’t present emotionally?”
For me, being there for others means I must face the vulnerability that impending loss provokes. I must counter my own instincts to freeze or flee. As empathy and vulnerability researcher and bestselling author Brené Brown says in her documentary, “The Call to Courage,” “Vulnerability is having the courage to show up when you can’t control the outcome.”
Like living, dying is sometimes a messy business. I hope to hold space for the dying with empathy and solidarity, showing up without judgment, regardless of what physical or emotional messiness might arise.
This may sound a bit overwhelming, but as the Rev. Paul Tesshin Silverman, a New York-based Zen Buddhist priest, told me, “Have the courage that your heart is big enough to be able to take in a whole rainbow of different feelings and emotions. It will only strengthen you and not destroy you. Allow yourself to be present, breathe, and allow whatever emotions to come out, so that you’re present.”
Silverman described being in Japan as a young monk in his 20s when a girl of about 14 in his village was dying of leukemia. “I went over every day to spend time with her. I felt like I had to get busy for her.” He learned that her dying wish was to go to a boy band concert, and he arranged for her to do that. “I was doing tons of stuff to make her last days happy,” he said. “When I think back on it, the most profound moment, which I wasn’t aware of at the time, was the last day I spent with her, sitting there and just holding her hand.”
Sometimes death comes quickly, but often it tarries, creating an emotional roller coaster for those who are present. When my father was dying from an aggressive brain tumor, he fluctuated between being semi-comatose and responsive for almost a week. In hindsight, I wish that I had allowed myself to stay mindfully present, instead of projecting into the future, engulfed by anticipatory grief.
“Sitting in the liminal space is difficult,” death doula Nicole Heidbreder told me. As a former labor and delivery nurse, Heidbreder has worked on both ends of life’s spectrum. She said, “I try to be present as a fellow mortal, watching others do what I will someday do. If I can be present with compassion, tenderness, and shared humanity, it lets them know they’re not alone.”
According to death doula Elizabeth Johnson, “It takes a kind of reverence to see what is unfolding in that space. It is a mystery to everyone including to the person who is dying. For me, the spiritual component is recognizing that there are equal parts of absolute grace and mystery as we physically unravel from our physical form.”
For his part, Miller said, “I think the sacredness comes from letting go of impulses to control or to fix. You’re not running away from the impulse; instead, you’re running toward some basic sense that life is bigger than you or me. It’s not ours to understand that there are forces at work that include us, but that are much bigger than us.”
One literal definition of the verb “bear” is to support the weight of or to sustain. In bearing witness to another person at the end of life, we support and honor them in their transition. The lesson that I’ve come to realize is that this is, in fact, doing something in the most real and important way possible.
— Social Security information when a loved one dies
By Tom Margenau
Even though my wife and I are relatively fit, when you’re in your late 70s, you can’t help thinking about the inevitable. We’re all going to die. Even though my wife is a few years older than me, I figure I’m eventually going to be the first to buy that one-way ticket to the great beyond.
So, I’ve started working on a little something I will leave my wife when I’m gone. It’s a file called, “I’m dead. Now what?” In it will be all the information she will need to know to handle things like pensions, insurance, etc., after I’m gone. One of the sections will be about how to take care of Social Security matters.
I’ve written about this subject before. But if my emails are any indication, there is still confusion about this topic. So, here is what you need to know about Social Security matters if a loved one dies.
The first issue I will cover is what to do with the final Social Security check for the deceased. To do so, I must start out making two points. First, Social Security checks are paid one month behind. So, for example, the check you get in June is the benefit payment for May.
Second, Social Security benefits have never been prorated. This lack of proration can help out when someone first starts getting Social Security. Say you took benefits at age 66 and you turned 66 on June 28, you would get a check for the whole month of June even though you are only 66 for 3 days of the month. On the other hand, if your spouse dies on June 28, you would not be due the proceeds of that June Social Security check even though he or she was alive for 28 days of the month.
But there is a flip side to that perceived drawback to Social Security’s proration rules, and it could be good news for any survivors due benefits on the deceased’s Social Security account. Let’s say that Bill died on June 28. If his wife, Sarah, was due widow’s benefits, she would be paid those benefits for the whole month of June, even though she was a widow for only three days of the month.
So, when someone dies, the Social Security check for the month of death must be returned. But that’s only if you get the check in the first place.
There is a very good chance the check won’t even show up in the deceased’s bank account. As you may have heard, there are all kinds of computer-matching operations that go on between various government agencies and banks. So if the Treasury Department learns of a person’s death in time, they won’t even issue the Social Security benefit. Or, if the check was issued, the bank will likely intercept the payment and return it to the government before it even hits the deceased’s checking account. You usually don’t have to worry about returning any Social Security checks. It’s almost always done for you.
There can be a little twist to this scenario though. For example, let’s say that Henry died on July 2. Let’s further say that his Social Security check was normally sent to him on the third of each month. In other words, Henry died just before his Social Security check was deposited into his bank account. Because he was alive the whole month of June, that means he was due the money from that June check.
Now his widow or his estate is due that money. So that June Social Security benefit would have to be returned to the Social Security Administration. Then it will be reissued to the widow or to the estate. (There is a form that needs to be filled out to get that to happen.)
Now let’s talk about getting any Social Security survivor benefits that might be due. Unless they are due higher benefits on their own Social Security accounts, widow(er)s are due full benefits at their full retirement age, or reduced benefits as early as age 60 if they are not working. But the most common scenario involves couples who were both getting Social Security benefits at the time of death of one of the spouses.
Here’s an example: Fred died. He was getting Social Security retirement benefits. His wife, Wilma, was getting just a spousal benefit. In other words, she didn’t have enough work credits to get her own Social Security benefit. In this case, the process is simple. No widow’s application is required. Wilma simply notifies the SSA of Fred’s death and they just push a few buttons to switch her from wife’s benefits to widow’s benefits.
As part of the process, she may have to provide a copy of the death certificate. There is a chance the SSA will already have some proof of death in their files. Assuming Wilma was over “full retirement age,” she will just start getting whatever Fred was getting at the time of death. (But if he started his Social Security at age 62, Wilma would actually get a little more. Fred would have been getting a rate equal to 75% of his full benefit, and Wilma is guaranteed to get at least 82% of his full benefit.)
If Wilma was getting her own retirement benefit that was less than Fred’s rate, she will get bumped up to that higher amount. She would have to file an application to get those widow’s benefits. There is one twist. Widow’s claims cannot be filed online, so Wilma would have to contact the SSA at 800-772-1213 to file her claim over the phone. In addition to a death certificate, Wilma may also have to provide a copy of her marriage certificate.
There is also the matter of the $255 death benefit. I’m always embarrassed talking about this one-time payment because it is so miserly. There is a long history to this, and I don’t have the space to explain it here. Suffice it to say, the rate has been set at the $255 level for 50 years now.
A half-century ago, it might have gone a long way toward paying for a funeral. Today, it barely covers the cost of the flowers draping the casket. But, the benefit is still there. However, a number of years ago, Congress passed a law saying it can only be paid to a widow or widower who was living with the deceased. So, if someone dies, and there is no spouse, the $255 death benefit cannot be paid.
— Gratitude ceremonies give students and faculty members a chance to recognize the sacrifice of those who gave their bodies for medical research and education, and the loved ones they left behind.
Nivedita Ravi and Ryan Cohen, students at Columbia University’s medical school, performed in April at a gratitude ceremony honoring people who had donated their bodies to be studied in the school’s anatomy lab.
A solemn gathering at Columbia University last month had the trappings of a traditional memorial service. Students and faculty members performed music and gave speeches. The university’s chaplain closed the ceremony with a reflection.
But there was one key difference: No one in the room had ever met the people whose lives were being honored. The attendees were all students and faculty members at Columbia’s medical school, and they were gathered to show gratitude for the people who had donated their bodies for the students to study in the anatomy lab.
“Who were they before?” said Bree Zhang, a first-year dental student. “A parent, a child, a co-worker, a friend? What books did they read? How is their family doing now, and do they know how much their loved one has given me and the rest of us?”
Similar scenes played out across the country this spring as medical, dental and physical therapy students assembled to offer tributes to whole-body donors and their families. At the ceremonies, students perform music, light candles, read letters and share art. (A heart diagram from Ms. Zhang’s anatomy studies, overlaid with her whimsical drawings of books, tree roots and human figures, was projected behind her as she spoke at Columbia.) A nondenominational spiritual leader often plays a role. Sometimes a tree designation or an offering of flowers to a donor’s family is included.
Bree Zhang, a first-year dental student at Columbia, spoke at the ceremony and shared artwork inspired by her experience in the anatomy lab.
It is not clear how many people in the United States donate their bodies for medical research and education, though estimates suggest that about 20,000 people or their families do so each year. Criteria vary by program and by state; generally anyone over 18 can become a donor, though people with certain transmissible diseases, such as hepatitis B or C, tuberculosis, H.I.V. or AIDS, are typically excluded. Many programs also exclude bodies that have been autopsied or have had organs removed for donation.
Even with the introduction of elaborate 3-D visualization software, dissection remains a cornerstone of a medical education for most first-year students, as it has for centuries. Students spend months methodically studying the structures of the body, including organs, tendons, veins and tissue. The experience teaches more than the foundations of medicine. Treating the donor, who is viewed as a doctor’s first patient, with respect and care gives students a grounding in ethics and professionalism, said Joy Balta, the chair of the American Association for Anatomy’s human body donation committee.
Recognizing a sacrifice
Body donation is a selfless act by the donors, as well as by their families, who can wait as long as a couple of years to receive the ashes. The memorials, often called ceremonies of appreciation or gratitude, recognize the sacrifice.
“You’re able to think about the donor that you’ve been working with,” said Dr. Balta, who is also the director of the Anatomy Learning Institute at Point Loma Nazarene University in San Diego. “These are people,” he added, “that donated their bodies, that wanted you to work with them to improve science and health care.”
The Vagelos College of Physicians and Surgeons at Columbia began hosting a donor gratitude ceremony in the late 1970s as a way of marking an experience that “is very difficult for some students and really transformative,” said Paulette Bernd, who runs the school’s clinical gross anatomy course.
Georgetown University medical students, from left, Justine Mann, Lauren Bierman and Jacqueline Antonishek, with a donor body in an anatomy lab in 2011.
Relatives of the donors are invited to the events at some schools. At others, the ceremonies are only for students and faculty members, an extension of the anonymity that is provided to the donors in the lab. At Brown University, for instance, only a donor’s age, cause of death, marital status and occupation are shared with students, and the donor’s hands and faces are covered for much of the process.
“The bodies go through this whole process of being de-identified,” said Nidhi Bhaskar, a first-year medical student who helped coordinate a gratitude ceremony at Brown this month. “And this is a really great way to re-humanize them. We take into account the very real gift they left, and the family members who are still processing their loss.”
The anatomy lab can be a fraught experience for medical students, for whom “it may be their first experience where they’re dealing with death and dying,” said Dr. Daniel Topping, a clinical associate professor in the department of anatomy and cell biology at the University of Florida College of Medicine.
Abby Carey-Ewend, a second-year student at the Washington University School of Medicine in St. Louis, remembers being incredibly nervous about it.
“But when I started it,” she said, “I realized that it was really a phenomenal opportunity to be able to work with three other students and one donor, and to really learn the intricacies of the human body from something beyond a textbook or videos.”
Ms. Carey-Ewend helped plan the appreciation ceremony for her medical program, which was held in April. A priority, she said, was acquainting family members of the donors with the campus community and the students their loved ones had helped educate.
‘I knew she was helping somebody.’
Among the guests at the ceremony at Washington University was Regina Dunn. When her mother, Louise Dunn, died in July at 90, she was too distraught to plan a funeral. The donor remembrance was Louise Dunn’s first memorial service, she said.
“They just made you feel so comfortable,” Regina Dunn said of the students. “And a lot of people wanted that closure.”
Louise Dunn, who opened a modeling school for women of color in St. Louis in 1960, was driven throughout her life by a desire to help people, her daughter said. So it was not surprising that she wanted to continue to help others after her death, Ms. Dunn said, even if some of her survivors had to overcome a degree of apprehension over her decision to donate her body to science.
Medical students paying their respects to body donors at Zhejiang University in Hangzhou, China, in 2018.
Regina Dunn said that a Black student told a friend who accompanied her to the ceremony that having a Black donor in the lab, when most donors are white, had a profound impact.
“I felt honored, I really did,” Ms. Dunn said, “because I knew she was helping somebody.”
For the family of Michael Haas, who donated his body to the Indiana University School of Medicine, a gratitude ceremony last month was a full-circle moment in several ways.
It was held on April 16, four days before the anniversary of Mr. Haas’s death, his wife, Molly Haas, said. The ceremony was held on the university’s campus in Bloomington, Ind., where the couple were engaged in 1970. The families received white and red carnations; Ms. Haas recalled that her husband always bought her red carnations.
Both decided to donate their bodies in 2012, around the time that the symptoms of Mr. Haas’s Alzheimer’s disease began to show. For Mr. Haas, a former social worker and Episcopal priest, becoming a whole-body donor was a way of extending a lifelong mission of service, his wife said.
“His values, his ethics were always very generous,” Ms. Haas said.
‘A great sense of gratitude’
The appreciation ceremonies are typically planned by students, but they also give the faculty members who run the anatomy labs a way of processing their relationships with the people who donate their bodies for medical education.
“I feel a great sense of gratitude and responsibility and honor every time I’m around a donor,” said Dr. Topping, of the University of Florida. “It’s a very sacred thing for me.”
When the Zucker School of Medicine at Hofstra University, on Long Island, made its gratitude ceremony a virtual event during the coronavirus pandemic, it allowed donor relatives from across the country and around the world to participate, said Robert Hill, an associate professor. In 2020, relatives of one donor logged on from India, he said.
The Vagelos College of Physicians and Surgeons at Columbia has been hosting donor gratitude ceremonies since the 1970s, said Paulette Bernd, who runs the school’s clinical gross anatomy course.
Nirusha Lachman, the chair of the department of clinical anatomy at the Mayo Clinic College of Medicine and Science, attended her first gratitude ceremony about 40 years ago when she was a student in South Africa, and she has since spoken at several.
The gatherings, she said, serve to drive home the point that donors live on through the education that their bodies have provided.
“You want this to resonate, even with the families,” Dr. Lachman said, “that death was not the end for their loved ones.”
Throughout history, various cultures have developed unique rituals and practices surrounding death and mourning. One such intriguing tradition is sin eating, a ritual in which a designated person consumes food or performs a ceremony to symbolically take on the sins of the deceased. In this article, we delve into the history, cultural significance, and psychological implications of sin-eating.
Origins and Historical Context of Sin Eating
The origins of sin-eating can be traced back to ancient civilizations. In many cultures, death was seen as a transformative process, and the belief in the transference of sins to another person or object emerged as a way to cleanse the departed soul. Sin-eating rituals were prevalent in societies where the concept of sin and the afterlife held significant religious and spiritual meaning.
Sin-eating rituals varied across different regions and cultures. In some instances, a designated sin eater, often a marginalized member of society, would be called upon to perform the ritual. In other cases, family members or close friends would partake in the symbolic act of consuming food or engaging in ceremonial practices to absolve the deceased of their sins. These rituals served as a form of catharsis and a means to ensure the spiritual well-being of the departed.
Symbolism and Beliefs Associated with Sin Eating
At the heart of sin-eating is the belief that the sins of the deceased can be transferred to another individual. The act of consuming food or engaging in ritualistic practices symbolizes the assumption of guilt and responsibility for the sins committed during the lifetime of the departed. Sin eaters were often seen as sacrificial figures, taking on the burden of the deceased’s transgressions to facilitate their journey into the afterlife.
Sin-eating rituals also had a communal aspect. By absorbing the sins of the deceased, sin eaters played a vital role in purifying the community and maintaining social order. The ritual was believed to restore harmony and balance, ensuring that the sins of the departed did not linger and cause harm to the living. The presence of a sin eater provided solace to grieving families and served as a means of closure and reconciliation.
Psychological and Societal Implications of Sin Eating
Sin-eating rituals offered a way for individuals and communities to cope with the emotional and psychological impact of death. Engaging in symbolic acts of absorbing sins provided a sense of closure and relief, allowing mourners to navigate the complex emotions associated with loss and guilt. By externalizing and transferring the sins to another person or object, individuals could process their grief and find solace in the belief that their loved ones had been spiritually redeemed.
Sin eaters often occupied marginalized positions within society. Their role as sin absorbers ostracized them from mainstream communities, yet they were simultaneously valued for their spiritual service. This duality highlights the complex dynamics between societal norms, beliefs, and the need for spiritual guidance during times of death and mourning. The presence of sin eaters reflects the intricate relationship between outcasts and the communities that rely on their unique services.
Contemporary Perspectives and Legacy of Sin Eating
With the passage of time, sin-eating rituals have declined and become increasingly rare. As societies modernized and religious beliefs shifted, the practice lost its prevalence. However, sin-eating continues to be studied and analyzed for its cultural, psychological, and anthropological significance. Contemporary scholars and researchers delve into its historical context and attempt to understand its enduring legacy on funeral customs and the human experience of death.
The legacy of sin-eating lies in its ability to shed light on the intricate relationship between death, guilt, and spiritual redemption. As a historical and cultural artifact, sin-eating serves as a testament to human attempts to grapple with the complexities of mortality and the quest for spiritual purity. The rituals associated with sin-eating offer valuable insights into the diverse ways in which different societies have confronted the existential questions surrounding life and death.
Sin eating stands as a captivating and thought-provoking practice that invites us to explore the multifaceted aspects of human culture, belief systems, and our eternal quest for understanding the mysteries of life and death. While its prevalence has waned over time, the rituals and symbolism associated with sin-eating continue to captivate our imagination, reminding us of the profound significance of rituals and customs in shaping our perception of the world and the afterlife.
At the funeral for Jamie Lee Hamilton, a trans Two-Spirit and Métis Cree activist and sex worker advocate, her community sang and danced to “Respect” and “Sisters Are Doing It for Themselves” during the church service and ate cupcakes decorated with rainbows and red umbrellas. When disabled queer Korean activist and organizer Stacey Park Milbern died, her community organized and livestreamed a 150-car caravan in Oakland and shared tributes under the hashtag #StaceyTaughtUs. Shatzi Weisberger, a Jewish dyke, death educator and activist known to many as the People’s Bubbie, died in 2022 at age 92. She got a head start on her funeral four years earlier by hosting her own FUN-eral, a death-themed party where her friends decorated a biodegradable coffin with glitter and got temporary tattoos while being serenaded by the Brooklyn Women’s Chorus.
What would you picture if I invited you to imagine your own gloriously queer funeral? Maybe it wouldn’t be a funeral at all, but a celebration of life, or a drag show, a brunch, a protest or a rave. Maybe it would be all of these things and more. Would there be sequins and glitter? Dapper suits and splendid hats? Leather and denim? Cozy onesies? No clothes at all? My ideal scenario is a cross between a potluck, a magic ritual and a dance party; I like to imagine my beloved people dressed in whatever they feel most comfortable in. I hope they sing, dance, eat, laugh and cry together, resplendent in their many expressions of queerness as they gather in remembrance and celebration.
Instead of a single event, you might want several gatherings reflecting different facets of your life: a religious service by day, followed by a raucous night at a dungeon, or an intimate ceremony for only your polycule, before a larger memorial open to all of the people who knew and loved you. For some, it might feel good for your chosen and families of origin to mourn together; for others, it will be important to create protected spaces that intentionally keep out your estranged parents or your transphobic aunt. You might choose rituals, traditions or ceremonies that are part of your cultural, spiritual or ancestral practices, or want something completely secular. Maybe you’ll want a virtual memorial so your friends and loved ones from all over can remember you together, or invite people to mourn you privately in whatever ways feel right to them. What we imagine can be as unique as we are.
Our wildest imaginings likely differ from stereotypical depictions of funerals as formal, sombre events where black-clad mourners stand sadly around a heavy wooden coffin. Queerness offers us ways of perceiving and being in the world around us while making and remaking it through a distinctly queer lens. While the conditions of LGBTQ2S+ people’s lives often push us into unwanted proximity with death, we have the power to reimagine how we die and how we mourn. This includes active resistance to the violence and oppression that cuts short too many LGBTQ2S+ people’s lives and an invitation to subvert the beliefs and practices getting in the way of dying queerly, on our own terms. When we queer death, dying and mourning, they become sites of creativity, self-determination, collective care and resisting oppression, creating opportunities to challenge dominant ideas, practices and narratives that limit our ability to express who we are at every stage of our lives, including when we die.
As a death doula and self-identified death nerd, I talk about death a lot, and I’ve noticed that people tend to have one of two instinctive reactions when I bring it up: they recoil, regarding me strangely—or they lean in, wanting to know more. These leaning-in moments feel intimate to me. They often come with stories about a beloved person who died, questions about grief and death and the kinship of knowing it’s safe to talk about something that can feel unsayable. I’ve had these tender exchanges with friends, co-workers and strangers, which shows me how hungry many of us are for spaces where we can talk openly about death. There’s something about these interactions that feels inherently queer to me: holding space for each other while we share a raw or vulnerable truth, or reveal parts of ourselves that we’ve learned to keep hidden away.
Many of us have internalized a tendency to avoid talking about death, an instinct that can be accompanied by feelings of fear, anxiety or denial. When we do think about it, we may keep our thoughts to ourselves because we don’t feel ready to start a conversation about death with the people around us, or because we’ve consistently received messages that talking candidly about death or grief is risky or off-limits. For some of us—especially racialized, Mad and disabled people—talking openly about death or freely expressing grief can lead to pathologization or criminalization.
It can feel overwhelming to confront our mortality or that of the people we love, and many of us haven’t been taught the basics of what the dying process looks like, or what to do when someone dies. Before my oldest child was born, we went to a prenatal class to learn what happens during and after a birth. I wish I’d had a similar opportunity to learn about death a decade ago when I was caring for my mom at the end of her life. “We’re hungry to understand our own death and our own mortality and the death that surrounds us all the time, in a more real way,” Santa Fe, New Mexico-based death educator and host of the Death Curious podcast, Alexandra “Aries” Jo, tells me. They attribute this hunger to the stripping away of death from our everyday, mundane lives.
It hasn’t always been this way. It used to be more common in North America to experience death as a collective, community event. Deaths were more likely to happen at home, where family and community members—often women—cared for their own dead. Some communities have kept these traditions alive as part of their faith or cultural practices, and a growing number of people are accessing home hospice care. But for many of us, the past century has brought with it the increasing medicalization and professionalization of death and death care, transforming it into something that happens behind closed doors in settings such as hospitals or funeral homes. As a result, historian Katherine Arnup explains in a Vanier Institute report on death and dying in Canada, the experience of death has become “very foreign and frightening” for many people.
Yet it feels like an oversimplification to speak about death avoidance or the place of death in our everyday lives without acknowledging that many people and communities live and die in contexts saturated with death and grief, experiences that are tied to systemic oppression. “Loss is a part of life. Bereavement is natural. Grief is natural,” Oakland, California-based author and media justice activist Malkia Devich-Cyril tells me, “but mechanized loss, racialized loss, loss that comes as a result of inequality—that’s not natural. It is unnatural and it is the direct result of groups of people [in power] refusing to lose.” Devich-Cyril, author of a forthcoming book on Black grief and radical loss, points to how these forms of loss produce “an undue burden on those of us who have less power in the world. Grief becomes not only a consequence of disadvantage, but a cause of disadvantage and of disproportionate experiences of grief.”
Stefanie Lyn Kaufman-Mthimkhulu, a Providence, Rhode Island-based disability justice educator and organizer, challenges the idea that the COVID-19 pandemic prompted many people to confront death for the first time. When faced with this sentiment, Kaufman-Mthimkhulu tells me, “So many disabled folks I’m in community with are like, ‘Okay yeah, maybe for you, but not for us.’” Kaufman-Mthimkhulu’s own relationship with death and dying is shaped by being a younger disabled person who has experienced shifts in their body’s capacity and access needs while grappling with medical ableism. It’s also been influenced by their experiences of navigating chronic suicidality. When reckoning with their own mortality, Kaufman-Mthimkhulu draws on the “lessons in impermanence” that come with the “dynamics of living and dying on crip time.”
While I’ve read lots of books and taken several courses to learn more about death, dying and grief, the first people to teach me important lessons about collective care for dying people and how to come together in mourning were leatherdykes a generation older than me who’d lived through the AIDS crisis. It was they who showed me how to organize end-of-life care outside of inadequate and inaccessible state-run systems. They showed me it was possible to stop traffic to sing our beloved dead through the street into their memorial celebration. In these ways, they were part of a lineage of LGBTQ2S+ people who cared for their own dying and dead community members as part of a wider response to the state abandonment and systemic discrimination characteristic of the AIDS crisis in the 1980s and 1990s. Our lineages include experiences of immense loss and collective grief and trauma; they also include organized resistance, collective care and a refusal to abandon each other during and after death.
Today, in my own circles as a queer person, more than one friend has expressed surprise to me at having lived into their thirties or forties, ages they were convinced they’d never live to see. With waves of anti-trans legislation and fascist violence currently sweeping North America, many trans people are fearful of increased violence and risk of harm, prompting some to hold protest signs with the message: “The trans agenda is an average life expectancy.” While supportive of the larger death positive movement, Los Angeles, California-based end-of-life doula, writer and educator Vanessa Carlisle, who is queer and non-binary, tells me they prefer to think of themself as “death accepting” because “I don’t need to be death positive about how much death is happening in my community.” Carlisle, who has deep roots in LGBTQ2S+ and sex worker communities, emphasizes their commitment to fighting for community survival as part of their work in end-of-life care. They want the communities they’re part of “to survive and be happy and well in a world that seems hell bent on destroying us.”
Sarah Chavez, the Los Angeles, California-based executive director of the death education and advocacy non-profit The Order of the Good Death and a founding member of The Collective for Radical Death Studies, affirms that this spirit of resistance and solidarity is integral to death positivity. Chavez, who co-founded the modern death positive movement in 2011, tells me that death positivity is fundamentally “about engaging and talking about death in an honest and open way, without shame.” She emphasizes that we cannot do this “without engaging with the systems and conditions that lead to unacceptable or bad deaths that result from violence, a lack of care, and all forms of systemic oppression.”
“Queering death is also an opportunity to challenge narrow and limiting understandings of what constitutes a good death.”
How we die is intimately interwoven with how we live, Chavez points out, and “the exact same experiences and barriers that individuals encounter in life typically follow them right into death,” shaping our end-of-life experiences and what happens to our bodies after we die. She cites the example of the added stressors a dying person who is undocumented and their loved ones might face at end of life, like fear of deportation, family separation, language barriers, lack of access to cultural practices and the added costs associated with repatriation of someone’s body to their home or ancestral country. These barriers are systemic: a third of U.S. hospice programs limit access or outright refuse to care for undocumented people at end of life. This is why, for me, queering death demands the transformation of our health and end-of-life care systems and is wholly aligned with an abolitionist politic that includes border abolition.
Queering death is also an opportunity to challenge narrow and limiting understandings of what constitutes a good death. As researchers Cindy L. Cain and Sara McLesky write in an academic article on expanding definitions of the “good death,” qualities often associated with a “good” death—like not being a burden to others or mending familial relationships—“de-individualize the experience of death and disregard diversity within definitions of what is good.” These mainstream understandings, which shape the design of everything from our end-of-life care systems to the laws and policies governing death and dying to the training of hospice and palliative care providers, prioritize “a vision of dying that may not be achievable” or desirable to all patients and function as “a form of social control that seeks to discipline patients and their family members.”
An example of this is the ableism often inherent in stereotypical ideas of a good death. Kaufman-Mthimkhulu tells me they’ve often heard people describe a good death as “someone who’s died silently in their sleep at night, who’s a burden on no one and nothing.” They connect this to the “tremendous amount of fear” many of us internalize about “losing capacity, becoming more interdependent or more reliant on other people, or entering into new kinds of relationship dynamics where power might be shifting.” This is a very real fear for the disabled Canadians being systemically denied the supports they need to live while the government expands their access to medical aid in dying. At the same time, the ability to maintain our independence shouldn’t be the foundation on which we build our ideas of a good death. As in all facets of our lives, death is an opportunity to embrace interdependence as a foundational principle of disability justice. That’s why Kaufman-Mthimkhulu’s idea of a good death is “somebody who is able to move through the process of dying in a way that adheres to their values and beliefs and is met with compassionate, competent, self-determined care.”
In a blog post on what the death positive movement isn’t, Caitlin Doughty, the mortician and advocate who founded The Order of the Good Death, writes that it’s imperative to support communities to define “what a ‘good death’ means to them” and to work alongside each other to dismantle the barriers that get in the way of such deaths. When I think of how I might define what a good death means to me, I’m reminded of the consent practices I’ve learned from being part of sex-positive queer communities for the past twenty years. What feels good in the context of my embodied experiences, my identities, my relationships and my history might not feel good to you, and vice versa. When I contemplate this more broadly in relation to queering death and dying, I return to the themes of creativity, self-determination, collective care and resisting oppression.
To me, queering death is part of a larger liberatory project encompassing our efforts to fight for the survival and thriving of all communities experiencing systemic oppression. As a longtime LGBTQ2S+ health advocate, the more I look at death, the more I think about how we live our lives, what enables our individual and collective flourishing, and what gets in the way, at every stage of our lives. Queering death is about when, where and how we die, the care, support and options we have access to during this process, and what happens to us and our loved ones after our deaths. It’s also about actively working for a world where all LGBTQ2S+ people—especially those who experience the most significant and harmful impacts of systemic oppression, like people who are trans, racialized, Indigenous, disabled, Mad, poor, incarcerated, unhoused and/or undocumented—have what they need to live long, full, joyful lives free from violence and harm. Queering death is not about hastening the inevitable; it’s about fighting for us all to live and die in ways that respect, honour and celebrate every aspect of who we are.
