‘The hardest and most beautiful conversation I’ve ever had’

— how end-of-life storytelling on TikTok helps us process death

By and

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.

@alitatecutler Replying to @Matthew This was the hardest and most beautiful conversation ive ever had. Healing for both parties. I had resistance to Euthanasia before this, but after being with her and hearing her, I no longer do. ❤️ #euthanasia #finalfarewell #ondying ♬ multiverse – Maya Manuela

Dying, virally

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.

In Dying: a memoir, Taylor writes:

I am making a shape for my death, so that I, and others, can see it clearly. And I’m making dying bearable for myself.

Similarly, at the end of Blain’s memoir, The Museum of Words: a memoir of language, writing and mortality, Blain acknowledges the power of having written her own life and death, stating,

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.

Complete Article HERE!

‘Dying is not a failure.’

— Why and how to prepare for death.

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.

This interview was edited for length and style.

Complete Article HERE!

Why was it so hard to bear witness to my father’s final days?

— 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.

Complete Article HERE!

I’m dead. Now what?

— 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.

Complete Article HERE!

We have the power to reimagine how we die and how we mourn

— We live queer lives—and we can die queer deaths too

By Zena Sharman

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.

Complete Article HERE!

What is medical aid in dying, when is it done and is it legal?

— Here’s an update on the end-of-life debate.

A 2020 Gallup poll showed 74% of Americans surveyed said doctors should be allowed to end the life of a patient with an incurable disease “by some painless means” if the patient and the patient’s family requests.

More states and countries are enacting laws to let terminally ill patients in great pain decide when to die

By Donna Apidone

In January, just a few days after the start of 2023, a woman walked into the Daytona Beach, Florida, hospital where her terminally ill husband was a patient and shot him. She said she intended to kill herself as well, but hospital staff stopped her before she could carry out the second part of her plan.

Ellen Gilland told police the shooting was by mutual consent, that she and her husband agreed that it was the best way for them to handle his decline in health. He was too weak to take his own life.

Only 10 states and the District of Columbia have laws that allow medical assistance in dying by making a lethal dose of medication available to adult patients who request one. The practice also is legal in Montana because of a court ruling.

Medically assisted deaths are illegal in all other states and U.S. territories, including Florida. No jurisdiction permits the use of firearms to end a human life.

Words matter

Medical aid in dying is not euthanasia. The latter term includes the act of one person killing another who is terminally ill or hopelessly injured and suffering great pain. Euthanasia is illegal throughout the United States. However, if the person who is dying self-administers, the act is not considered euthanasia.

In the U.S., terminology has evolved. The current acceptable wording is “medical aid in dying” or “medical assistance in dying” indicating that a medical professional will make a lethal dose of one or more drugs available to the patient but leave it to the patient to decide whether to take it. The terms are abbreviated as MAID.

The word “suicide” is not accurate, although is it sometimes incorrectly applied. Death certificates state a patient’s underlying illness as cause of death.

Although 22% of Americans have access to medical aid in dying, fewer than 1% of people in the 10 states and Washington, D.C., where this option is legal actually obtain the medication, and only two-thirds of them ultimately decide to take it, according to Compassion and Choices, a nonprofit group that advocates for end-of-life options including, but not limited to, medical aid in dying.

Where it is legal in the U.S.

In addition to reaching a consensus on the language describing medical aid in dying, the 11 jurisdictions that authorize the practice are consistent in their intent, said Kim Callinan, president and CEO of Compassion and Choices.

“Most of the laws across the states are very similar,” she said. “The eligibility criteria are the same. And the safeguards are the same.”

Geoff Sugerman, who served as campaign manager for Oregon’s Death with Dignity law, which was enacted in 2012, and works closely with the national organization called Death with Dignity, laid out the four cornerstones of the laws in in the 11 jurisdictions:

  • Patients must be adults with a terminal illness and a prognosis of six months or less to live.
  • Attending physicians must verify patients are acting voluntarily.
  • Patients must be able to make and communicate their decision to healthcare providers.
  • Patients must be able to self-administer (ingest) the medication.

Differences among laws

There are some differences in the laws. Where it is legal, a common waiting period for approval of medical assistance in dying is 15 days. Hawaii mandates 20 days. New Mexico and Oregon are less than 15 days. In California, a 2022 adjustment to the law reduced the time from 15 days to 48 hours.

Most medically assisted deaths are limited to residents of states that have legalized the procedure. However, the Vermont legislature in April passed a bill that would eliminate the residency requirement; Gov. Phil Scott has said he would sign it into law. Meanwhile, Oregon officials have said the state will not prosecute nonresident cases.

The number of states considering medically assisted death continues to grow. Minnesota and Florida have bills in their legislatures.

From the archives (June 2019): How ‘death with dignity’ laws allow terminally ill patients to take back control — sometimes at a price

Fine-tuning legislation

While some states debate new MAID laws, others are weighing changes to existing laws. As public opinion adjusts and data is collected, legislators in several states are considering amendments. Some details in the original laws may have “served as barriers to the patient,” Sugerman explained.

Changes to legislation may include the length of the waiting period and expanding the definition of “medical professional” to include Physician Assistants and Nurse Practitioners. Some states may remove their residency requirements so that patients can travel from other jurisdictions for the process.

Details and updates about state legislation are available through Compassion and Choices and Death with Dignity.

Healthcare systems

A patient’s first consideration of medical aid in dying may come in a conversation with a primary care physician or specialist when treatment options have been exhausted.

Dr. Nathan Fairman is a physician with UC Davis Health in California. He was selected to provide medical information to the state’s legislators as they prepared wording for the End of Life Option Act, enacted in 2015. Fairman explained how the process might go in his health system.

A UC Davis Health patient sees a primary care physician until a diagnosis necessitates care from a specialist. If treatment of a disease or condition is no longer beneficial, the specialist is likely to discuss end-of-life options with the patient.

Depending on the illness, medical aid in dying may be one of several options. Others may include palliative care and cessation of eating and drinking. Each option comes with its own set of considerations.

The patient makes the choice. A team is put in place to help the patient and doctors through the qualification process. “We employ navigators,” Fairman explained. These are two trained professionals who “make sure the patient has gone through all of the required steps — and there are a lot of them” — to qualify for medical aid in dying, if that is the choice.

“We were intentional about having a clinical social worker in this role,” he said. “It requires a high degree of advocacy and health system literacy. You need to have someone who is jumping through those hoops.”

Doctors may opt out

Doctors may disagree with the state law or their system’s policy. Professionals are not required to participate in aid in dying. Depending on personal beliefs, a doctor may refer a patient to a colleague in the same system.

In California, although referrals are allowed, they are not guaranteed. In the region served by UC Davis Health, most of the major health systems have policies for the process. The exception is Dignity Health, a Catholic healthcare system. A patient may have to change health systems to have access to aid in dying.

On the other side of the country, Providence St. Joseph Health is a Catholic healthcare system serving residents of Maine and Vermont, two states that have legalized medical aid in dying. The healthcare system has published its end-of-life policy. “PSJH considers intentionally hastening death to fall outside the scope of legitimate medical practice,” according to the document.

The PSJH policy acknowledges its patients may request a service it will not provide. “Providers and caregivers must not actively obstruct eligible patients from discussing, exploring or pursuing legal avenues to hastening death. Within the context of a therapeutic relationship, providers and caregivers should discuss with the patient why they may be inquiring about hastened death and what unmet needs there may be.”

Final exit network

A nonmedical end-of-life option is available through the Final Exit Network (FEN), a nonprofit organization based in Tallahassee, Florida, with about 20 “exit guides” who volunteer in all 50 states.

Wendell Stephenson lives in California and is a member of FEN’s board of directors. He said the organization is “devoted to providing information to people about how they can end their lives in a peaceful manner.”

FEN volunteers may be present at a death, but that is not required. Because physicians are not a part of the Final Exit Network process, medications are not used. Instead, FEN volunteers suggest using an inert gas and explain how to obtain and use it. Family members also receive guidance on observing the process but not helping, to avoid criminal charges.

Do patients measure up?

FEN has a medical evaluation committee consider applications from patients seeking to end their lives. The committee (composed of MDs and others with medical and mental health backgrounds) review applicants’ medical records with a couple of key considerations.

One of FEN’s rules is that applicants have conditions that “cannot be cured,” Stephenson said. They must have an intractable medical condition that seriously impairs quality of life. Most of these can be expected to shorten the applicant’s life, but death does not have to be imminent.

Another requirement is that applicants be physically able to manipulate the equipment that delivers the gas, Stephenson explained.

FEN does not provide the inert gas or related equipment, nor does it publicly discuss the content of the information they provide. For details, they refer to “Final Exit,” one of the books written by the organization’s founder, Derek Humphry.

Supporters and opponents

The Pew Charitable Trusts, a nonprofit research organization, issued a report summarizing the viewpoints of several of the world’s major spiritual groups regarding medical aid in dying. The report, published in 2012, provides more perspective from each religion than a simple “yea” or “nay.” Many faiths do not approve of MAID, a few allow for it, none endorse it. Some acknowledge the request for reduction of lifesaving techniques at the end of life.

In a Gallup poll in 2020, 74% of the 1,028 Americans surveyed said doctors should be allowed to end the life of a patient with an incurable disease “by some painless means” if the patient and the patient’s family requests it.

Activists are often family members of patients who have died painful deaths.

The Catholic Church has called MAID “morally impermissible.” Some Christian medical associations have also spoken out against medical aid in dying. The National Hospital and Palliative Care Organization is opposed, as is the American Association of People with Disabilities.

Will insurers cover it?

Will insurance cover medical aid in dying? “Sometimes,” Fairman said. “Many private insurances will cover it. MediCal [California’s version of Medicaid] will cover it for the state portion. Any federal insurance will not cover it.”

The Compassion and Choices website reports, “Regardless of whether a state has authorized medical aid in dying, insurance providers cover treatments that are deemed effective and proven, and not those considered unnecessary, experimental or below the standard of care.”

Countries outside the U.S. allow different end-of-life options. Callinan, CEO of Compassion and Choices, warns against comparisons “because the healthcare systems, the political systems, the economic systems, the cultures are entirely different.”

Canada passed its MAID law in 2016, covering residents eligible for Canadian healthcare. It has been updated several times. By 2024, a decision will be made regarding the inclusion of mental illness as a criterion.

Outside the U.S.

While euthanasia — medically assisted death performed by someone other than the patient — is illegal throughout the U.S., it is allowed in some other countries.

End-of-life options vary around the world. The practice is legal in Belgium, Luxembourg, Netherlands, Switzerland, Austria and Spain. Some processes resemble medical aid in dying and others are closer to euthanasia, though at the request of the patient.

Several Swiss organizations offer medical aid in dying to nonresidents. The oldest and best known is Dignitas, which has been featured in BBC and PBS documentaries. In addition to a membership fee, a patient pays a considerable sum for the end-of-life procedure.

Medical aid in dying is legal in New Zealand. In Australia, five of the six states either allow medical aid in dying or will by the end of 2023. Colombia allows the practice, while Chile, Uruguay and Argentina have introduced bills to decriminalize the procedure.

Several other countries have laws that allow patients to decline treatment and/or nourishment that would sustain life, according to World Population Review.

Complete Article HERE!

Who should have the ‘right to die’

What’s happening

Three decades ago, Dr. Jack Kevorkian became the face of the incredibly contentious debate over medically assisted death. Dubbed “Dr. Death” in the media, he claimed to have helped at least 130 patients die before being convicted of second-degree murder in 1998.

Kevorkian died in 2011, but the argument over whether it should be legal for doctors to aid people in ending their lives is still far from settled. Today, 10 states and Washington, D.C., allow medically assisted suicide — a process in which life-ending drugs are supplied to patients, who administer the dose themselves. The laws differ, but they generally state that individuals must have a terminal illness and a prognosis of less than six months to live to qualify. Only two states, Oregon and Vermont, allow medically assisted suicide for nonresidents.

While the U.S. is one of just a handful of countries to legalize what is often called medical assistance in dying (MAID), our laws are significantly more restrictive than those in some of our peer nations. For example, America is the only country to require a terminal diagnosis. All others allow people living with incurable illnesses that cause them “unbearable pain” to choose a medically administered death. Most permit both assisted suicide and euthanasia, in which doctors administer life-ending drugs directly. Several also permit MAID for people with severe mental illness and let individuals make “advance requests” in cases in which they’re expected to lose their capacity to make their own decisions in the future, such as from dementia.

Over the past few years, Canada has become the site of the highest number of medically assisted deaths in the world. There were more than 10,000 MAID cases in Canada in 2021. That’s more than the total number of assisted suicides estimated to have occurred in the U.S. since Oregon became the first state to legalize the practice in 1997.

Why there’s debate

At the most basic level, the debate over medically assisted death comes down to morality. Either you believe it’s categorically wrong for a doctor to help someone end their life or, like nearly three-quarters of Americans, you believe there are cases where people should be granted the “right to die” on their own terms.

The issue gets much more complicated when it comes to defining what those cases should be and what criteria people should have to meet before they’re allowed to choose a medically assisted death.

Advocates for expanding opportunities for MAID say that limiting access exclusively to terminally ill patients leaves countless people to suffer unnecessarily and denies them the ability to opt for a peaceful, pain-free death. They argue that a truly compassionate society would trust individuals to make their own choices, rather than insist that they die in a way that satisfies others’ sense of right and wrong.

But critics worry that more permissive assisted death laws could lead to a “death on demand” system or create circumstances in which people are pushed toward making the choice to die when that may not be necessary. There’s also concern that MAID could warp into a way for society to avoid the effort and expense of caring for its most vulnerable members, including the disabled, mentally ill and even the poor. Many critics point to troubling reports out of Canada — including one case in which a patient’s family claims he was “basically put to death” — as a sign of the slippery slope that can happen when there aren’t sufficient guardrails in place.

What’s next

Supporters of medically assisted death are hoping to expand the practice into more areas of the country. Bills that would legalize assisted suicide have been proposed in at least 10 states over the past year, though it’s unclear whether any of them will become law.


It’s inhumane to force people to suffer when they want to take a different path

“It is nothing less than cruel to prevent anyone from having some control in their most difficult hours as life comes to an end. Of course, there must be safeguards. … But for those who choose to end their suffering and for the families that support their decision, the death with dignity option should be available.” — Judy Kugel, Boston Globe

Assisted death should be available only in very limited circumstances

“Is it really more humane to deny a miserable person a clean assisted suicide than to grant it? Authorities should say yes: We won’t help you die because of your depression, poverty or unfit living conditions for the same reason we won’t take out your appendix if you have a broken leg, or prescribe lithium for a nasty case of psoriasis.” — Chris Selley, Wall Street Journal

Freedom to die should be treated as basic human right

“The ability to end one’s life is an important freedom. Our bodies belong to us, not the government. We should have the power to decide whether we wish to continue living, particularly if we are in constant pain or suffering debilitating or fatal illnesses.” — Scott Shackleford, Reason

The foundations of our humanity begin to crumble when life loses its value

“The idea that human rights encompass a right to self-destruction, the conceit that people in a state of terrible suffering and vulnerability are really ‘free’ to make a choice that ends all choices, the idea that a healing profession should include death in its battery of treatments — these are inherently destructive ideas.” — Ross Douthat, New York Times

Canada has shown how dangerous MAID can be for vulnerable people

“The introduction of euthanasia in Canada has become the slipperiest of all slippery slopes. Of course, the expansion of assisted suicide laws in the U.S. will produce the same troubling problems. … Canadians have the right to die, but do they have the right to live in the face of medical challenges?” — Valerie Hudson, Deseret News

We don’t have to choose between protecting the vulnerable and giving people the right to die with dignity

“Let’s be clear: It was always going to be complicated to find the proper balance between protecting patients and helping them die. Complicated but achievable. It should absolutely be possible to write laws that protect elderly, sick, disabled and otherwise vulnerable people from manipulation or coercion while still providing competent adults with options for relief from intolerable suffering or irremediable illness.” — Nicholas Goldberg, Los Angeles Times

The worst case scenario is a world where people can choose to die at any time for any reason

“The ultimate goal — or, at least, the consequence — of allowing assisted suicide/euthanasia is death on demand.” — Wesley J. Smith, National Review

Banning MAID leaves people to face, and often choose, death entirely on their own

“People facing the grim, painful finality of their lives are committing suicide right now, many without a physician present to ease their suffering — or to talk them out of it. Patients can’t be the primary decision maker on end-of-life options if the government refuses to permit the existence of a decision. Patients can’t consult with doctors or loved ones about their end-of-life preferences if the consultation itself is illegal.” — David Colborne, Nevada Independent

Current limits are so restrictive, the “right to die” largely exists only on paper

“The few places in the United States where assisted suicide is allowed impose restrictions so exacting they are difficult for people in state, and often nearly impossible for anyone out of state, to meet.” — Pamela Paul, New York Times

Sometimes life isn’t better than death

“The idea that any life is better than no life at all is largely unexamined and unchallenged, especially by the young and healthy. … But isn’t the principle itself — life at all costs — due for a reevaluation that pays more attention to the wishes of the individual? Wouldn’t more control of the time, place and circumstances of our deaths alleviate some of our fear of dying, if not of death itself?” — John M. Crisp, Tribune News Service

Complete Article HERE!