Category: Death Education

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When Is Someone Really, Truly Dead?

The World Brain Death Project Seeks a New Answer

By MIKE MCRAE

After your heart beats one last time, but before your body begins to decay, your life will come to an end. Strange as it seems, physicians around the world can’t agree on the exact moment death finally occurs.

A project aiming to find consensus on human mortality has now published its recommendations on what should constitute minimum clinical standards qualifying an individual as officially deceased.

Given the sheer diversity of legal, religious, and moral values different cultures use to frame perspectives on death, it’s unlikely that any single report will unite conflicting opinions.

It’s not the first time researchers have sought a universal definition of death founded in medical science, either.

But the World Brain Death Project’s senior author, University of Southern California medical director Gene Sung, argues the contents of his team’s report are a good place to start.

“This is an important, complex subject. Reaching this kind of consensus across so many organisations is a first,” says Sung.

“With this paper and its 17 supplements – virtually a textbook – it’s a foundation that we hope will minimise diagnostic errors and build trust.”

The recommendations aren’t so much a single column of boxes to step through, or a concise definition, but rather a way for medical communities from diverse backgrounds to find clear lines of agreement.

Through a mix of flow charts, check lists, and decision trees, the report categorises the observations necessary in weighing up whether a patient’s condition is potentially reversible.

Many of these are recognisable to most medical professionals, and include looking for an absence of facial reactions to uncomfortable stimulations, fixed pupils, no gag reflexes, and no spontaneous breaths when blood acidity drops far enough.

There are also some sensible suggestions, such as checking for existing conditions that could mask or mimic brain death – say, the neurological disease Guillain-Barré syndrome, or drugs or treatments that might confuse a diagnosis. 

Children, the paper advises, should receive a second neurological exam, given their young brains can recover from some conditions differently to adults.

The paper also takes resource availability into account, as well as the legal and cultural differences various medical communities will be subjected to.

As an expert on brain death and a physician intimately familiar with the impact traumatic brain injuries can have on his patients and their loved ones, Sung understands too well the importance of having clear guidelines on when to call it final.

“That’s why I started this project – we still have some difficulty in dealing with and understanding these problems,” says Sung.

In days long gone, death was the long, eerie silence of a still chest. Unable to feel a pulse or witness a breath, a doctor could gamble that an unconscious body was ready for the grave.

Of course, mistakes happened. And still do happen. A lot. More often than we might want to admit. So the search has continued for criteria that could prevent the nightmarish error of sending a living person to the morgue.

What’s more, with the advent of ventilators and improved methods for resuscitation helping us bring ‘the recently dead’ back to life, the medical world was desperate for a better way to distinguish a point of no return.

By the 1960s French neurophysiologists expanded on definitions of comas to include what would come to be seen as brain death. The first official criteria for diagnosing a relative lack of neurological function were published in 1968, commonly known as the Harvard Brain Death Criteria.

Medical communities around the world have since prioritised their own subtle differences in involuntary movements, blood flow, brain wave patterns and locations of residual electrical activity, leading to a number of very different sets of brain death criteria.

Religious sensitivities on how long to wait for mortuary preparations weigh in on decisions around the world. Legal precedents also make a difference in the rights of the dead and dying.

Trust in the medical system is paramount, with complex views on the timing and prioritisation of organ donation affecting how we see a doctor’s decisions around diagnosing an end to a life.

With so many variables to take into consideration, Sung and his team saw they needed to rely on more than medical literature and clinical experiments for finding a consensus.

Taking into account the advice of medical experts across disciplines and from different cultures around the world, their report has been endorsed by dozens of eminent medical societies.

Not without a hint of irony, a universal definition on death needs to be embedded in a living document, one that evolves not just with advances in scientific knowledge, but with an awareness of the communities who need to put their trust in it.

Complete Article ↪HERE↩!

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The surprising benefits of contemplating your death

Now is the perfect time to face your fear of mortality. Here’s how.

By Sigal Samuel

Nikki Mirghafori has a fantastically unusual career. After getting a PhD in computer science, she’s spent three decades as an artificial intelligence researcher and scientific advisor to tech startups in Silicon Valley. She’s also spent a bunch of time in Myanmar, training with a Buddhist meditation master in the Theravada tradition. Now she teaches Buddhist meditation internationally, alongside her work as a scientist.

One of Mirghafori’s specialties is maranasati, which means mindfulness of death. Mortality might seem like a scary thing to contemplate — in fact, maybe you’re tempted to stop reading this right now — but that’s exactly why I’d say you should keep reading. Death is something we really don’t like to think or talk about, especially in the West. Yet our fear of mortality is what’s driving so much of our anxiety, especially during this pandemic.

Maybe it’s the prospect of your own mortality that scares you. Or maybe you’re like me, and thinking about the mortality of the people you love is really what’s hard to wrestle with.

Either way, I think now is actually a great time to face that fear, to get on intimate terms with it, so that we can learn how to reduce the suffering it brings into our lives.

I recently spoke with Mirghafori for Future Perfect’s limited-series podcast The Way Through, which is all about mining the world’s rich philosophical and spiritual traditions for guidance that can help us through these challenging times.

In our conversation, Mirghafori outlined the benefits of contemplating our mortality. She then walked me through some specific practices for developing mindfulness of death and working through the fear that can come up around that. Some of them are simple, like reciting a few key sentences each morning, and some of them are more … shall we say… intense.

I think they’re all fascinating ways that Buddhists have generated over the centuries to come to terms with the prospect of death rather than trying to escape it.

You can hear our full conversation in the podcast here. A partial transcript, edited for length and clarity, follows.

Sigal Samuel

You’ve worked in Silicon Valley and you still live near there, so I’m sure you’ve encountered the desire in certain tech circles to live forever. There are biohackers who are taking dozens of supplements every day. Some are getting young blood transfusions, trying to put young people’s blood in their veins to live longer. Some are having their bodies or brains preserved in liquid nitrogen, doing cryopreservation so they can be brought back to life one day. What is your feeling about all these efforts?

Nikki Mirghafori

It’s the quest for immortality and the denial of death. Part of it is natural. Human beings have done this for as long as we have been conscious of the fact that we are mortal.

A person who really put this well was Ernest Becker, the author of the seminal book The Denial of Death. I’d like to offer this quote from him:

This is the paradox. A human is out of nature and hopelessly in it. We are dual. Up in the stars and yet housed in a heart-pumping, breath-gasping body that once belonged to a fish and still carries the gill marks to prove it. A human is literally split in two. We have an awareness of our own splendid uniqueness in that we stick out of nature with a towering majesty, and yet we go back into the ground a few feet in order to blindly and dumbly rot and disappear forever. It is a terrifying dilemma to be in and to have to live with.

There is a whole field of research in psychology called terror management theory, which started from the work of Ernest Becker. This theory says that there’s a basic psychological conflict that arises from having, on the one hand, a self-preservation instinct, and on the other hand, that realization that death is inevitable.

This psychological conflict produces terror. And how human beings manage this terror is either by embracing cultural beliefs or symbolic systems as ways to counter this biological reality, or doing these various things — cryogenics, trying to find elixirs of life, taking lots of supplements or whatnot.

It’s nothing new. The ancient Egyptians almost 4,000 years ago, and ancient Chinese almost 2,000 years ago, both believed that death-defying technology was right around the corner. The zeitgeist is not so different. We think we are more advanced, but it comes from the same fear, same denial of death.

Sigal Samuel

It seems like in the West, we really have a bad case of that denial. I think we rarely talk about death or are willing to face up to the reality that we’re going to die. We seem to be wanting to always distract ourselves from it.

You are a Buddhist practitioner and you have a practice that is very much the opposite of that, which is mindfulness of death, or maranasati. You’ve done trainings and led retreats around this subject. But some people might say this is too morbid and depressing to think about. So before we actually delve into the mindfulness of death practices, could you entice us by telling us a few of the benefits of doing them?

Nikki Mirghafori

First and foremost, what I found for many people, myself included, is that facing the fact that I am not going to live forever really aligns my life with my values.

Most people suffer what’s called the misalignment problem, which is that we don’t quite live according to our values. There was a study that really highlighted this, by a team of scientists, including Nobel Prize winner Daniel Kahneman. They surveyed a group of women and compared how much satisfaction they derived from their daily activities. Among voluntary activities, you’d probably expect that people’s choices would roughly correlate to their satisfaction. You’re choosing to do it, so you’d think that you actually enjoy it.

Guess what? That wasn’t the case. The women reported deriving more satisfaction from prayer, worship, and meditation than from watching television. But the average respondent spent more than five times as long watching television than engaging in spiritual activities that they actually said they enjoyed more.

This is a misalignment problem. There’s a way we want to spend our time, but we don’t do that because we don’t have the sense that time is short, time is precious. And the way to systematically raise the sense of urgency — Buddhism calls it samvega, spiritual urgency — is to bring the scarcity of time front and center in one’s consciousness: I am going to die. This show is not going to go on forever. This is a party on death row.

Sigal Samuel

So the approach here is to bring to the forefront of our consciousness how precious our time is, by impressing upon our minds how scarce it is. And that helps align our life with our values.

Are there other benefits to practicing mindfulness of death?

Nikki Mirghafori

The second benefit is to live without fear of death for our own sake. That way, we don’t engage in typical escape activities. And it frees up a lot of psychic energy. We have more peace, more ease in our lives.

The third benefit is to live without fear of death for the sake of our loved ones. We can support others in their dying process. Usually the challenge of supporting a loved one is that we have a sense of grief for losing them, but a lot of that grief is actually that it’s bringing up fear of our own mortality. So if we have made peace with our own mortality, we can be fully present and support them in their process, which can be a huge gift.

My mom passed away two years ago. And for me, having done all of these practices, I could be with her by her deathbed, holding her hand and supporting her so that she could have a peaceful transition. She didn’t have to take care of me so much and console me. She could be at peace and take delight in this mysterious process that we just don’t know what it’s like. It might be beautiful, might be graceful. We don’t know — there might be nothing; there might be something.

Sigal Samuel

Now I feel sufficiently enticed to learn about the actual practices of mindfulness of death. Let’s start with one that seems simple: the Five Daily Reflections, sometimes called the Five Remembrances, that are often recited in Buddhist circles. Would you mind reciting those?

Nikki Mirghafori

Happy to. These are the Five Daily Reflections that the Buddha suggested people recite every day.

Just like everyone, I am of the nature to age. I have not gone beyond aging.

Just like everyone, I am of the nature to sicken. I have not gone beyond sickness.

Just like everyone, I am subjected to the results of my own actions. I am not free from these karmic effects.

Just like everyone, I am of the nature to die. I have not gone beyond dying.

Just like everyone, all that is mine, beloved and pleasing, will change, will become otherwise, will become separated from me.

Allow whatever arises to come up. It’s okay. These contemplations can bring a lot up. So just be with them as much as possible.

Sigal Samuel

I’ve done these reflections before, but every time I do them, I notice that some are much harder for me to absorb than others. The fourth one — I’m of the nature to die — does not terrify me. Maybe that’s weird, but that’s not the one that really scares me. The one that I find impossibly hard is the fifth one. Everyone that I love and everything that I love is of the nature to change and be separated from me.

It’s really the death or the separation from the people I love that I find much harder to face than the death of myself. Because if I’m going to die, you know, then I’ll be gone. There won’t be any me to miss things.

Nikki Mirghafori

Yes. So appreciate and make space for the one that really touches you.

Also I would say that with the fourth one, making peace with our own death, I’ve done the practice and sometimes I’m like yeah, sure, whatever. And then I’ve really stayed with it, and thought, “This could be my last breath.” When the practice really takes hold and becomes alight with fire, it’s like, “Oh, my God, I am going to die!” It really hits home.

Sigal Samuel

Just to clarify, this is a separate mindfulness of death practice, where you contemplate with every breath, “This could be my last inhale. This could be my last exhale.”

Nikki Mirghafori

Yes. And to bring the historical context into it: This particular teaching is what’s called maranasati. Marana is death in Pali, the language of the Buddha. Sati is mindfulness. The mindfulness of death sutra, that’s where the Buddha taught it, and it’s actually quite a lovely teaching.

The Buddha comes and asks the monks, “How are you practicing mindfulness of death?” And one of them says, “Well, I think I could die in a fortnight, in a couple weeks.” Another one of them says, “Well, I think I could die in 24 hours.” Or “Well, I could die at the end of this meal.” Or “Well, I could die at the end of this bite of food I’m eating.” And another one says, “Well, I could die at the end of this very breath.”

And the Buddha says, “Those of you who said, two weeks, 24 hours, whatever — you are practicing heedlessly. Those who said right at this breath, you are practicing heedfully, correctly. That is the practice.”

There are ways to really bring the sense of immediacy and urgency to all this. It’s not out of the question that there could be an aneurysm or that a meteor could just hit the Earth in this moment. Use visualizations; be creative.

Sigal Samuel

Another thing I find really helpful is remembering the idea of impermanence. Which, of course, is the theme of our whole conversation — that our whole life is impermanent — and that’s a very central Buddhist teaching. But also any emotion that I’m feeling is impermanent. So if I’m feeling an intense surge of fear as I do a practice, that’s impermanent, too.

Nikki Mirghafori

Yeah, I love that. When I teach impermanence, there are little impermanences that come and go, and then there is the big impermanence, which is your life! I’m chuckling because this is a case where impermanence is on your side. Impermanence is just a rule of how things run in this world. It’s impersonal. It’s just the way things are. But in our perspective, it’s either working for us or against us.

Sigal Samuel

Can you tell me about another kind of contemplation — the “corpse contemplation” or “charnel ground contemplation”? Charnel grounds are these places where, after people have died, their bodies are left to decay above ground, to rot in the open air. And Buddhist monks would go and observe them up close, right?

Nikki Mirghafori

Many monks do that, especially in Asia. In order to become more intimate with a sense of mortality, the practice is to go to the charnel ground and to actually see a corpse. And the contemplation is: My body, this alive body, is just like this body that is decaying. It’s in different stages of being a body, of decomposing.

A specific practice in the Buddhist canon is to contemplate a corpse in different stages of decay. This particular practice requires a sense of stability of mind. Do the other ones first. I only teach it on a retreat when there’s a container of safety, holding people and supporting them through it.

Sigal Samuel

I definitely have not yet worked myself up to doing corpse contemplation by looking at images of actual human corpses. But when I go for a walk, whenever I see a dead bird or squirrel or mouse that’s been run over in the road, I actually pause and take a minute to look at it. I’m trying to ease my way into this practice.

Nikki Mirghafori

Brilliant. Similarly, another informal practice I wanted to share is having a memento mori. Like a little skull, or those bracelets that are all skulls. I just drew on a little Post-It a skull and bones, and posted it on my computer monitor, so I would remember: Life is short. I’m going to die.

I’ve had various memento moris on my desk throughout the years, and I invite people to have them. They don’t have to be sophisticated. On a piece of paper, just write out, “Life is short” or “You are going to die” or “Traveler, tread lightly.” Whatever works for you to keep death in your perspective. And I think it’s good to switch memento moris around so that your mind doesn’t get used to seeing the same thing all the time.

Sigal Samuel

I’m glad you brought this up because I was going to say the corpse contemplation reminds me a lot of that memento mori tradition, which is a centuries-long tradition in Christianity. So many different religious traditions have emphasized the importance of meditating on our death and have devised ways like the memento mori to try to keep forcing the ego to recognize its looming demise.

Nikki Mirghafori

Yes. And I know that for me, I feel most alive and I feel happiest and I feel most connected with myself, when I’m aware of my death. If it happens for a day or two that it’s not in the forefront for whatever reason, I’m not as bright, as sharp, as alive. So I just love bringing it back. It enlivens me. It supports me to live more fully and hopefully die with more delight and joy and curiosity.

Sigal Samuel

I’m wondering if you can help me with something else. I mentioned earlier that I’m not really scared of my own death so much, but I am scared of the death of the people I love. And especially during the pandemic, I think that’s causing a lot of anxiety for me and probably a lot of others. We’re scared about the potential death of our grandparents, our parents, our friends. Is there a way to free ourselves of the overwhelming fear of their death?

Grief is a natural part of the process. However, it is complicated by our own seen and unseen fear of death. So I invite you to actually work with the practice of making peace with your own death. That’s what’s underlying it. Even if you think you’re not afraid of your own death, you probably are.

When people are really at peace with their own passing, there is a different perspective. There’s a different way of being with the fear or sadness of losing others. There is still a pain of loss, but it shifts.

Complete Article ↪HERE↩!

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‘Spiritfarer,’ a game about the afterlife, seeks to ease the terror of death

“Spiritfarer”

By Elise Favis

“Goodbye, my friend,” said a deer named Gwen, holding me close in a final embrace as we sailed into the blood red waters of the River Styx. Despite the intense color of the sea, and the intensity of the moment, I felt calm. Flower petals drifted on the surface of the water, and white, lush trees swayed in a tranquil way. Gwen disappeared into thin air.

“Spiritfarer,” a game releasing later this year (on several platforms including Switch, PlayStation 4, Xbox One, PC and Stadia), is about guiding spirits to the afterlife. It hopes to make the subject of death comfortable, even cozy, by focusing on relationships and care in people’s last moments while guiding them to the other side. After playing for an hour, I came away feeling hopeful and uplifted, even after experiencing its somber themes.

You play as Stella (or Daffodil, her accompanying cat, if you’re player-two via local or online co-op), a young girl who becomes a new spirit guide to the dead after Charon, inspired by the ferryman of Hades in Greek mythology, retires from that same position. You sail a fantastical world, gathering spirits and convincing them to board your ship. You help them through their problems and encourage them to accept their fates. For creative director Nicolas Guérin, building a death-positive game was cathartic; a way to cope with his own mortality as well as the passing of loved ones.

“I’m terrified of dying,” Guérin told The Washington Post in a recent interview. “I’m terrified of leaving my daughter behind me. I’m terrified of losing my friends and my family.”

His whole team drew inspiration from their experiences with losing someone. The characters in the game are each inspired by grandparents, uncles and friends who died. They’re not “carbon copies,” Guérin said, but composite characters; a mix of traits, personalities, feelings and anecdotes derived from connections they’ve had with deceased loved ones.

Guérin and his colleagues at indie studio Thunder Lotus Games had “no idea at first” if they could pull off themes of death positivity in a management sim, saying he “lucked out” with how it all came together. He said it was important to combine normal, mundane tasks with the “extraordinarily, terribly gruesome moment we face when we know we’re going to die.”

In “Spiritfarer,” your ship evolves over time as you build different structures on top of one another like eclectic towers. Some of these are temporary homes for the spirits you gather, and others are stations for cooking, harvesting, gardening and more. Each character wrestles with something. A lion couple, for example, struggles to find happiness together when one of them is unfaithful. Others, like Stanley, a talking and walking mushroom with childlike traits, just wants to be cared for, so I made him his favorite meal: french fries. Some just want to be hugged. You spend time on and off the ship, completing quests for these spirits and finding out more about Stella along the way, too.

It isn’t just through mechanics that “Spiritfarer” achieves a sense of serenity. The game has a calming atmosphere, with a striking art style inspired by Japanese painter Hiroshi Yoshida and from whimsical Hayao Miyazaki films like “My Neighbor Totoro.” This world about death is bright and colorful, rather than dark and morbid.

Having spent 15 years in the games industry, much of that time at Ubisoft working on franchises like “Assassin’s Creed,” Guérin wanted to explore death in a way that forces the player to think about it outside the bounds of a game. Instead of a fail state mechanic, death in “Spiritfarer” is the key to progress. Every time a character dies, they leave behind a room filled with beautiful, overgrown flowers. It’s a symbol of heritage, Guérin explained.

“You need to actually gather some of these flowers that are used as a token to pay a shark, to build upgrades on the ship,” Guérin said. “And those upgrades will allow you to go across specific barriers like ice or rocks.”

Guérin’s brother is the chief of staff for a geriatric ward in southern France. During early development for the game, Guérin spent a significant amount of time “documenting and understanding” what people think and feel during their final moments by meeting patients in hospice and end-of-life care facilities. As he visited the terminally ill, he noticed their drive to experience human connection or enjoy a peaceful moment. He wanted to convey this in “Spiritfarer,” rather than have characters give grand speeches or make sweeping life changes as they faced death.

“They just want to still wake up in the morning, brew themselves some coffee and spend time with their family, relatives and friends. And that’s it,” he said.

Complete Article ↪HERE↩!

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How to Say Goodbye When Someone is Dying

By Dr. Lynn Webster

Once, a patient with chronic pain due to an immunodeficiency made an appointment with me to say goodbye. For years, he had received intravenous therapies for his infections, but they had all stopped working. His other doctors had already told him that nothing more could be done, and he had little time left to live. He came to let me know that he appreciated what we had done for him.

It was a surreal moment. The young man wasn’t in agony, and he seemed to be at peace with the inevitability of his death. However, I was caught unprepared. Since I wasn’t sure how to respond, I simply acknowledged his words with a “thank you.” We shook hands and he departed. That was the last time I saw him.

Last week, a colleague of mine sent out an email to a small number of his professional associates. He told us that he is very ill. Clearly, his implicit message was that he might never see us again. 

As I reflected on his message, I felt unprepared again. I wondered how I should respond. How would I say goodbye? Should I even broach the topic? This might be my only chance to let him know that I’d always considered him a mentor. But would he become despondent if I appeared to eulogize him? Would it be hurtful to express my sadness that we might never speak again?

I certainly didn’t want to add to his suffering. Perhaps I should ignore the gravity of his illness and focus on how I hoped he would recover soon.

But that would be dishonest. He is a physician, too, and always modeled treating his patients with empathy and compassion This was the part of his character that I felt most drawn to. He is a doctor who healed as much by listening to his patients than by any other therapy.

Asking the Right Questions

I decided to tell my friend what an important role model he has been for me, but I also had a question for him. Having treated many terminally ill patients, I have learned that most people who are dying have hopes for themselves, as well as the loved ones they are leaving behind. Therefore, I asked my physician friend whether he had any hopes he wanted to share with me. He told me he had two wishes.

“As I have been reflecting upon my personal and professional life, my first hope is that my presence really made a positive difference in people’s lives. That would be my legacy. The outpouring of affection, goodwill and positive comments that I have received from ex-patients, friends, family and colleagues has made it clear that I have succeeded in that,” he said.

My friend also expressed his hope for a change in our political situation. He mentioned the anger, frustration and hopelessness he feels watching American society fall into two warring ideological camps. His hope is that the young people of today will lead us into a better future.

Opportunities for Closure

COVID-19 has forced me to think about the reality that death can catch any of us by surprise.

As I write this, we are in the midst of a pandemic that has infected more than 17 million people and taken more than 680,000 lives worldwide. Many of the COVID-19 victims died alone and didn’t get a chance to say goodbye to their loved ones.

Even in ordinary times, most of us don’t get to say goodbye. We often deny the reality of death as life draws to a close. “You’ll feel better soon,” we say, either to make ourselves feel better or to avoid the topic. Even when we are allowed to be at the bedside of someone who is dying, we often lack the courage to convey our true feelings. Honesty can be too painful during those moments.

I remember saying goodbye to my dying father. Lying with him on his bed in his home, I asked my father if he was afraid. Many of us refrain from expressing grief at moments like that, because we worry that we might make the dying person feel worse. But I could not keep from crying.

In The Four Things That Matter Most, author Ira Byock, MD, identifies the messages he considers most important to communicate to loved ones near the end of life: “Please forgive me. I forgive you. Thank you. I love you.” Expressing these sentiments can help create a sense of mutual peace and completion.

Saying goodbye does not wish death on anyone. It acknowledges the richness of the relationship that has been. That is what I felt when I told my dad I loved him, which at the time was my way of saying goodbye. It is also how I felt when I brought closure to the relationship with my friend who emailed me.

Congressman John Lewis, the noted civil rights leader, expressed hope for the future in a New York Times op-ed published shortly after his July 17th death. He said, “Though I am gone, I urge you to answer the highest calling of your heart and stand up for what you truly believe.”

Perhaps we should consider following Lewis’s example. By daring to acknowledge what is happening and to say goodbye, we are bravely addressing the highest calling of our hearts. We also have the opportunity to honor all those who touched us and made us who we are.

Complete Article ↪HERE↩!

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The Death-positive Movement & The Order of the Good Death

by Carl Gregg

As of last week, more than 150,000 people have died from the coronavirus in the U.S. alone. And we should be honest that that number is likely an undercount due to inconsistencies in how various localities attribute COVID-19 as a cause of death (The New York Times). Worldwide, more than 600,000 people have died of Coronavirus (NPR). The death toll will continue mounting in coming months. So in such a time as this, taking a step back to reflect on our own mortality seems in order.

Now, I will readily confess that confronting the subject of death can feel like a lot to take on: it can be a heavy, freighted topic, but it is also incredibly important. As the saying goes, “None of us are getting out of this alive!” One option, of course, is denial: trying to avoid the topic of death as much as possible until our time inevitably comes. But I invite you to consider that there is a better way. Keeping our mortality in mind and cultivating practices supportive of dying well (to the extent that is within our control) can be a key part—and sometimes a deeply moving, meaningful, and beautiful part—of living well.

Along these lines, reminders of mortality can be a central practice in the Buddhist tradition. Indeed, some Buddhist traditions specifically include “four reminders” which are sometimes linked to the origin story of the Buddha. After all, the rich and privileged Prince Siddhartha was launched onto the spiritual quest that would lead him to become the Buddha precisely when he wandered outside the protected gates of his palace and encountered three visceral, existential reminders about impermanence and change. He encountered, in turn:

  1. Old age (a person whose body had grown frail)
  2. Sickness (a person whose body had become ill), and
  3. Death (a body that had died)

In each of these cases, the young Siddhartha Gautama—the future Buddha—realized, “I am not exempt”: I too will grow older, get sick, and someday die.

My intent is not to be unduly morbid. Instead, it is to realize that reminders of our mortality—that none of us are promised even the next moment—can wake us up into more fully and freely experiencing life. We’re not going to be around forever, so stop sweating the small stuff; let that [BLEEP] go. We’re not promised even tomorrow, so let’s make the most of this time that we do have here and now. Can you feel that aliveness, that edge that remembering our mortality can bring?

The fourth reminder is that contemplative practices offer us a path of liberation—not an escape from those first three reminders (old age, sickness, and death), but a way of transforming our relationship to unsatisfactoriness. As the saying goes, “We can’t stop the waves of change from coming, but we can learn to surf.”

If you will indulge me in a related tangent, part of what comes to mind when I think about death is sex. Not in a weird way, but in a free association to another of those other big, freighted parts of the human condition. And it regularly makes me proud to be part of the Unitarian Universalist movement that is more than five decades into a commitment to comprehensive, lifespan sexuality education. Our Whole Lives (affectionally abbreviated as OWL) was launched fifty years ago in 1970. (This program was originally called AYS, About Your Sexuality.) For more than five decades Unitarian Universalism has been at the forefront of the sex-positive movement: affirming a wide range of sexuality as natural and healthy and emphasizing safer sex practices, consent, body-positivity, and reproductive justice.

I bring up that longterm commitment to the sex-positive movement because we quite progressive UUs have some work to do to be equally as committed to the death-positive movement. Death-positive, you might be asking yourself, “What is that?” For the uninitiated, allow me to introduce you to Caitlin Doughty, my favorite death-positive advocate. Doughty describes herself as a “mortician, activist, and funeral industry rabble-rouser.” I highly recommend all three of her books:

  • her memoir Smoke Gets in Your Eyes: And Other Lessons from the Crematory
  • her travelogue From Here to Eternity: Traveling the World to Find the Good Death
  • her most recent book Will My Cat Eat My Eyeballs? Big Questions from Tiny Mortals about Death.

All her writing is equal parts hilarious and profound. Some of you may recall that four years ago, I wrote a blog post on mortality inspired by Doughty’s memoir, as well as by the physician Atul Gwande’s book Being Mortal. I highly recommend that book as well, if you or someone you love is wrestling with end-of-life medical decisions.

For now, I would like to share with you the eight central values of the Death Positive Movement as articulated by a group Doughty helped found, called The Order of the Good Death:

  1. Hiding death and dying behind closed doors does more harm than good to our society.
  2. The culture of silence around death should be broken through discussion, gatherings, art, innovation, and scholarship.
  3. Talking about and engaging with my inevitable death is not morbid, but displays a natural curiosity about the human condition.
  4. The dead body is not dangerous, and everyone should be empowered (should they wish to be) to be involved in care for their own dead.
  5. The laws that govern death, dying and end-of-life care should ensure that a person’s wishes are honored, regardless of sexual, gender, racial or religious identity. [More information available at “Death with Dignity“]
  6. My death should be handled in a way that does not do great harm to the environment. [More information available at “Green Burial“]
  7. My family and friends should know my end-of-life wishes, and I should have the necessary paperwork to back-up those wishes. [More information available at “Conversation Project” and “Five Wishes”]
  8. My open, honest advocacy around death can make a difference, and can change culture.

And our culture is changing even if we still have a long way to go. One of the most pervasive death positive shifts is the Hospice Movement (which started in the 1960s and entered the U.S. in the mid-1970s). Hospice has initiated a much-needed sea change in according death greater dignity.

Relatedly, many of you may be familiar with doulas in the context of accompanying, guiding, and empowering people giving birth. There are also a growing number of people being trained as death doulas to accompany, guide, and empower people at the end of life.

And some of you may have also heard of or even participated in the Death Cafe movement, which was founded in 2004 as a way to connect people who want to talk about death in an open, honest way. As one of their promotional slogans says, Death Cafes, “never involve agendas, advertising or set conclusions. Interesting conversations are guaranteed!”

If you google “Death Cafe” (or visit deathcafe.com) and your zip code into the “Find a Death Cafe” link, you’ll find that the closest Death Cafes. You may even find one has moved to Zoom during the pandemic, and is open to all.

Here one description:

Death Cafes are an opportunity to demystify the death experience. We offer an open, safe environment for discussing thoughts and feelings about all manner of death and dying.

At a Death Cafe people drink tea, eat cake and discuss death. [“Life’s short, eat dessert first,” right?!] Our aim is to increase awareness of death to help people make the most of their (finite) lives…. Please note: Death Cafes are not meant to act as support groups or grief counseling.

If this post leaves you a little “death curious,” perhaps joining an upcoming Death Cafe might be right for you.

Overall, the hope is that being more open, honest, and transparent about our inevitable death can empower us to make the most of the life that we have. One ancient Buddhist inquiry practice puts it this way: “Since death alone is certain, and the time of death uncertain, what should I do?” 

As we sit with that question, allowing it to sink in, I want to conclude with a story. A few years ago my colleague the Rev. Georgette Wonders preached a sermon on the subject of death and mortality to Bradford UU Community Church in Kenosha, Wisconsin, the congregation she served as minister. That sermon was titled “Facing Death: The UU Book of the Dead.” She preached it on Sunday, August 6, 2014 with no knowledge at the time that she would be killed two days later in a car accident.

I invite you to reflect on the final section of Rev. Wonders’ sermon on “Facing Death: The UU Book of the Dead.” She is speaking to us from beyond the grave: both her words and the example of how she lived her life are part of the legacy that she had left behind as a gift for those of us still living. As you listen, notice if any words or phrases particularly resonate with you in this season of your life. Whether we are saying goodbye to a loved one—or whether we are the one being said goodbye to—the way we prepare is to:

  • Live each day as if it were the only day.… Every time you part, from this day forward, tell them you love them, even if you are in and out all day long.

  • Appreciate the little things—the common, everyday things—because they will become almost unbearably precious when death comes knocking at the door.

  • Overcome your resentments and learn not to accumulate them.

  • Be useful and light upon the earth.

  • Live a grateful life.

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The virus is robbing many people of a ‘good’ death.

How do we change that?

COVID-19 has taken away our ability as a society to avoid the topic of death. But we’ve needed to improve our ‘death literacy’ since well before the pandemic hit.

By

For years, we kept death at arms length. We awkwardly avoided it, looked the other way, and hid it behind layers of euphemism.

But since January, death has been inching closer, a drum beat in the back of our minds getting louder as COVID-19 spread around the world. Body counts became the focus of every news update. Field hospitals in Central Park. Mass graves in Italy. A gnawing sense that within weeks, this could happen here.

In the United States, deaths started losing their meaning. The numbers quickly dwarfed 9/11, then Vietnam, then every war combined since Korea. While 189 Australians have died, and the numbers keep rising through Melbourne’s awful outbreak, there’s still a sense of distance. People die from COVID-19 in hospitals, and nursing homes, far away places we can easily ignore.

But with COVID-19, the issue isn’t who dies, or where they die, it’s often how they die. And that is something we, as a death-averse culture, might not be ready for.

A death with dignity

For a culture where talk of dying is so taboo, so many of us want the same thing — a death with dignity.

A good death, says University of Wollongong Associate Professor of General Practice Joel Rhee, can be hard to achieve. But what is key is having a sense of control.

“It’s a death where you’re in an environment where you’re surrounded by people you love. You’ve got some dignity about how you’re going through the last few months,” says Rhee.

“It’s when your concerns, fears, psychological and spiritual needs are taken care of.”

COVID-19 takes away all that. The virus robs people, no matter their age, of any sense of control over their final days.

People die slowly and painfully, choking to death in near silence. They die alone, isolated from friends and loved ones, with exhausted health workers draped in PPE. And when they go, the atomising force of the virus disrupts the post-death rituals that give loved ones the closure they need.

Funerals are restricted to just a handful of people. The whole process of collective bereavement, gathering under one roof to hug and cry, is suddenly too risky. When residents died at St Basil’s in Melbourne, their families couldn’t even enter the facility to collect their belongings.

It’s that loss of dignity and control, that isolation from loved ones, that make the cynical calls to let the virus rip seem all the more callous. Deaths from COVID-19 aren’t just numbers on a spreadsheet. They’re real people, with families who are robbed of the chance to do right by them.

Jennifer Philip, chair of palliative medicine at the University of Melbourne, says the pandemic has made the job of supporting people in their final days so much more challenging.

“A big part of what we do in palliative care is communication and supporting families. But that’s all done remotely, behind layers of PPE,” Philip says.

“When you’re doing telehealth, many of the usual gestures we use are not visible. And there’s a lot of work with connectivity — using iPads and technology that older people may not be comfortable with.”

We need to talk about dying

But even before the pandemic hit, what stops people getting a good death, according to Philip, is our inability to talk about it, often till it’s too late.

“We don’t talk about it in a meaningful way, or grown up way. Certainly not in a nuanced way,” she says.

That’s something Jessie Williams wants to change. She’s CEO of the Groundswell Project, a not-for-profit that is trying to change the way Australians talk about death.

Once upon a time, Williams says, death was sudden and it was everywhere. But as we got wealthier, as medical science advanced, we were better able to draw out our final years, and push it away.

“We don’t see death, we don’t touch it and we don’t smell it,” Williams says.

Williams, who works with businesses, and runs public campaigns, to promote what she terms “death literacy”, says she’s felt a bit of a change during the pandemic.

“We’ve been overwhelmed — we’ve seen more engagement from new people coming on board.

“We’ve had more people coming forward for end of life planning workshops, more people are reaching out to access materials.”

In his work as a general practitioner, Rhee says he’s had more patients wanting to talk about death. They’ve seen the numbers, and the pictures. They don’t want to go like that.

“They see people passing away, and they think about it a bit more,” he says.

The pandemic has upended our lives so much in under a year that it’s hard to tell what will stay entrenched. Even habits like social distancing and hand hygiene, so much a part of our conversations in March, seem to have fallen by the wayside a little.

But perhaps this period, where death is everywhere, could start to subtly rewire how we view the end.

When we understand pain

Sometime around the 4th or 5th Century BCE, in what is now Nepal, there lived a prince. Raised amid total luxury, the prince’s parents did everything to shield him from nasty, brutish and short life outside the palace grounds.

If you can believe it, the prince didn’t leave the palace till he turned 29. The first thing he saw when he’d snuck out was a man whose body was crippled by ageing. He’d never seen old age. Next was a sick man. He’d never seen disease. The prince then came across a funeral procession. He’d never seen death either. The last thing the prince saw was an ascetic — a man who’d given up life. The prince returned troubled by what he saw. The next day, the man who would become the Buddha gave up everything. Jarred by suffering and death, he chose to live the life of an ascetic.

One moral of the Buddha’s story is that the experience of death, of realising the depths of human suffering and the limits of our own mortality, can change us. Like the Buddha, many in the affluent West grow up insulated from death. And while grappling with our own mortality doesn’t necessarily produce such a radical transformation, it at the very least produces conversations and feelings we might not otherwise have.

Philip says when people start talking about death, it can be a moving, humbling and relieving experience. Often, the conversations they have aren’t laced with morbidity. Instead, they’re often far more mundane. People talk about what they value, and, at a time when they’re at their most mature, decide what matters to them.

Perhaps this is the way into talking about death. Because so much of our discomfort around dying is part of a larger, more innate human difficulty with talking about things that are inconvenient. We like to sweep uncomfortable conversations under the rug and forget about them.

The sooner those conversations about who or what matters to us happen, the better. As Philip says:

“You have to tell people you love them, or you forgive them, or you thank them. If those things are unsaid that’s a great tragedy for those left behind.”

Complete Article ↪HERE↩!

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Cancer, Religion and a ‘Good’ Death

It is hard to know how much my patient, caught in an eternal childhood, understood about his cancer.

By A. Sekeres, M.D.

When I first met my patient, three years ago, he was about my age chronologically, but caught in an eternal childhood intellectually.

It may have been something he was born with, or an injury at birth that deprived his brain of oxygen for too long — I could never find out. But the man staring at me from the hospital bed would have been an apt playmate for my young son back home.

“How are you doing today, sir?” he asked as soon as I walked into his room. He was in his hospital gown, had thick glasses, and wore a necklace with a silver pendant around his neck. So polite. His mother, who sat by his bedside in a chair and had cared for him for almost half a century, had raised him alone, and raised him right.

We had just confirmed he had cancer and needed to start treatment urgently. I tried to assess what he understood about his diagnosis.

“Do you know why you’re here?” I asked him.

He smiled broadly, looking around the room. “Because I’m sick,” he answered. Of course. People go to hospitals when they’re ill.

I smiled back at him. “That’s absolutely right. Do you have any idea what sickness you have?”

Uncertainty descended over his face and he glanced quickly over to his mother.

“We were told he has leukemia,” she said. She held a pen that was poised over a lined notebook on which she had already written the word leukemia at the top of the page; I would see that notebook fill with questions and answers over the subsequent times they would visit the clinic. “What exactly is that?” she asked.

I described how leukemia arose and commandeered the factory of the bone marrow that makes the blood’s components for its own sinister purposes, devastating the blood counts, and how we would try to rein it in with chemotherapy.

“The chemotherapy kills the bad cells, but also unfortunately the good cells in the bone marrow, too, so we’ll need to support you through the treatment with red blood cell and platelet transfusions,” I told them both. I wasn’t sure how much of our conversation my patient grasped, but he recognized that his mother and I were having a serious conversation about his health and stayed respectfully quiet, even when I asked him if he had questions.

His mother shook her head. “That won’t work. We’re Jehovah’s Witnesses and can’t accept blood.”

As I’ve written about previously, members of this religious group believe it is wrong to receive the blood of another human being, and that doing so violates God’s law, even if it is potentially lifesaving. We compromised on a lower-dose treatment that was less likely to necessitate supportive transfusions, but also less likely than standard chemotherapy to be effective.

“Is that OK with you?” my patient’s mother asked him. I liked how she included him in the decision-making, regardless of what he could comprehend.

“Sounds good to me!” He gave us both a wide smile.

We started the weeklong lower-dose treatment. And as luck would have it, or science, or perhaps it was divine intervention, the therapy worked, his blood counts normalized, and the leukemia evaporated.

I saw him monthly in my outpatient clinic as we continued his therapy, one week out of every month. He delighted in recounting a bus trip he took with his church, or his latest art trouvé from a flea market — necklaces with glass or metal pendants; copper bracelets; the occasional bolo tie.

“I bought three of these for five dollars,” my patient confided to me, proud of the shrewdness of his wheeling and dealing.

And each time I walked into the exam room to see him, he started our conversation by politely asking, “How’s your family doing? They doing OK?”

Over two years passed before the leukemia returned. We tried the only other therapy that might work without leveling his blood counts, this one targeting a genetic abnormality in his leukemia cells. But the leukemia raged back, shrugging off the fancy new drug as his platelets, which we couldn’t replace, continued to drop precipitously:

Half normal.

One-quarter normal.

One-10th normal.

One-20th normal.

He was going to die. I met with my patient and his mother and, to prepare, asked them about what kind of aggressive measures they might want at the end of life. With the backdrop of Covid-19 forcing us all to wear masks, it was hard to interpret their reactions to my questions. It also added to our general sense of helplessness to stop a merciless disease.

Would he want to be placed on a breathing machine?

“What do you think?” his mother asked him. He looked hesitantly at me and at her.

“That would be OK,” he answered.

What about chest compressions for a cardiac arrest?

Again his mother deferred to him. He shrugged his shoulders, unsure.

I turned to my patient’s mother, trying to engage her to help with these decisions. “I worry that he may not realize what stage the cancer has reached, and want to avoid his being treated aggressively as he gets sicker,” I began. “Maybe we could even keep him out of the hospital entirely and allow him to stay home, when there’s little chance …” My voice trailed off.

Her eyes above her mask locked with mine and turned serious. “We’re aware. But we’re not going to deprive him of hope at the end …” This time her voice trailed off, and she swallowed hard.

I nodded and turned back to my patient. “How do you think things are going with your leukemia?”

His mask crinkled as he smiled underneath it. “I think they’re going good!”

A few days later, my patient developed a headache, along with nausea and dizziness. His mother called 911 and he was rushed to the hospital, where he was found to have an intracranial hemorrhage, a result of the low platelets. He slipped into a coma and was placed on a ventilator, and died soon afterward, alone because of the limitations on visitors to the hospital during the pandemic.

At the end, he didn’t suffer much. And as a parent, I can’t say for certain that I would have the strength to care for a dying child at home.

Complete Article ↪HERE↩!