Category: Death Meditation

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We Learned My Dad Was Dying

— And We Chose Not To Tell Him. Did We Make The Wrong Decision?

The author’s mom and dad in the garden at their home in Johannesburg during the COVID pandemic in 2020. “My dad loved gardening and growing roses,” she writes. “This is the last photo I have of him when he was still mobile.”

“Sometimes I feel pressured to confirm that he’s getting better. I can’t tell him that actually, he won’t.”

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I walk into my father’s bedroom, and there’s a different man in his bed. I reel in shock but slap a smile on my face because I don’t want to hurt his feelings. It’s still him, but the disease he’s been fighting for the last 10 years is stealing him away from us.

My father’s bedridden, out of breath even at rest. He’s strapped to his rumbling oxygen machine all day and he’s lost so much weight that the bones in his collarbones and cheeks are straining against his skin. He has a barrel-shaped chest because his lungs are overinflated with air that they can’t process. This is what COPD, Chronic Obstructive Pulmonary Disease, looks like.

My mother calls me out of the room and into the kitchen where we huddle with the excuse of making tea.

“I asked the doctor for more antibiotics for your father to treat his cough,” she whispers in Italian.

Coughs are common for him and happen every few weeks. If not treated promptly, usually with a round of antibiotics, they can spiral into a full-blown chest infection.

“He said it’s only a matter of time before your father goes.” My mom’s eyes widen and fill with tears. “What does that mean? Where would your father go?”

I swallow hard, but my throat is concrete. We’ve been expecting this — COPD is a progressive disease, and over the last year, it’s been getting worse — but it’s still a shock.

“When’s the doctor coming?” I ask.

She frowns. “Why would he come?”

“To tell Dad that he’s dying.”

“No, we can’t tell him,” my mother says firmly. “It would make him so depressed.”

My mother is the person doctors inform about my father’s condition. With English being my father’s second language, he’s relied on her to filter and trickle the information down to him.

Over the years, when my dad was frustrated with his illness, we’d gently remind him that he had lung damage from smoking. But there’s what I call “disease denial” in my family. My parents have always tried to overcome illness by pretending it doesn’t exist. Years previously, when my father had prostate cancer, he didn’t acknowledge it was cancer. He’d call it a “crust” the doctors would remove. (Thankfully, he was fine.) Even when I was diagnosed with thyroid cancer at 35, my parents denied it completely, as though something so scary couldn’t happen. Perhaps this is how they cope.

I wonder what I’d want if I were in his position. Would I want someone to tell me that my time was limited and that I wouldn’t ever be able to step out of bed again? How would I feel if the people around me were lying to me about my condition?

A study published in Supportive Care in Cancer found that not telling a terminally ill patient that they’re dying is quite common in some countries, such as Italy, Spain and Japan — and even doctors struggle with the question of whether or not to inform their patients.

An oncologist interviewed in the study states that although a doctor has the right to inform their patient as long as this knowledge won’t harm the patient’s health, it’s difficult to know what harm could be caused by spilling the beans.

I’m now worried about what harm could be caused to my father — and us — by keeping the information to ourselves.

I’m not sure how to navigate visits with my father when the lie of his death is hanging over me, especially when he says heartbreaking things like, “Why can’t the doctors figure out how to treat me?”

This might sound strange, but my father never learned how to use the internet, so the only information he receives about his condition is from us and his doctors.

I just nod and say stupid things like, “It’s terrible… I’m so sorry…”

Even worse, sometimes I feel pressured to confirm that he’s getting better. Once the antibiotics start to clear up his cough, he says, “I think a few more days in bed, and then I’ll be able to walk around.”

What am I supposed to say to that? I can’t tell him that actually, he won’t. Or that the antibiotics won’t ever completely heal him. Instead, I say, “That’s great, Dad!”

When he begins to wrap up a phone call, I quickly slip in an “I love you lots.” It’s weird because we’ve never had a relaxed, open relationship in which saying such things to each other is no big deal. But, while he doesn’t know he’s dying, I do, and it makes me want to remind him that he’s loved. When I express such emotion, he pauses, sometimes laughs uncomfortably, or says “OK!”

If he knew he was dying, maybe he’d understand why I’ve suddenly turned into a sappy, emotional thing.

A photo of the author’s parents taken when they were dating. “My mom is approximately 20 years old and my dad is 27,” she writes. “They’re pictured at my mom’s parents’ house during the festive season. My dad’s holding a cigarette — he always loved smoking.”
A photo of the author’s parents taken when they were dating. “My mom is approximately 20 years old and my dad is 27,” she writes. “They’re pictured at my mom’s parents’ house during the festive season. My dad’s holding a cigarette — he always loved smoking.”

Lying does strange things to us. Soon, it feels like my mother, sister and I start believing our own lies. Or maybe we’re just in denial about my father dying.

“Dad’s being admitted to the hospital for another one of those chest infections,” my sister breezily tells me on the phone when he’s re-hospitalised a few months later. “Same old stuff, nothing to worry about, I’m sure.”

We’ve been on the flare-up rollercoaster a few times over the last two years and we’ve become used to it. It’s easy to forget that one of those flare-ups could lead to death. My father’s lungs are so damaged from decades of smoking that they can’t handle a mild case of the sniffles.

Denial becomes grim acceptance. I’m constantly waiting for the call that he’s near the end. My heart races and my hands shake every time the phone rings. My anxiety intensifies when doctors say his body’s not absorbing the antibiotics he’s been prescribed for his lung infection.

The fact that my father doesn’t know he’s dying means that I wait for a final conversation with him that might not happen. This deathbed talk isn’t something reserved for Hollywood movies: I’ve heard about it from friends who’ve lost their parents. The general consensus is that there’s a loving conversation between the dying parent and their children, with those last words being meant to emotionally strengthen the surviving family members.

If we’d been honest with my father about his impending death, perhaps he would’ve been in a position to initiate such a conversation, knowing that his time was so limited.

During his life, my father was always a bit of a mystery, holding his deep emotions close to his chest and sometimes choking on them the way he was now choking on air. It was rare for him to hug us or say that he loved us. I hardly ever saw him cry, except when his parents died and Italy lost the World Cup.

He became even more reserved during his last weeks. I would have loved to know what he was thinking or feeling and if he had any fears about dying, but I couldn’t chat to him about any of it.

“My father was a mystery even in the days leading up to his death, and I fear we might have had something to do with this because we kept news of his own death from him.”

Hiding the truth about his condition from him causes me to have to censor myself when this time in a person’s life should be the most honest and open.

Despite this, the doctors go along with our wishes of not telling my father the truth.

Bad things always seem to happen on a Monday morning. The call comes in at 8 a.m. The lung specialist finally gives it to us straight: My father won’t make it to the end of the day, and we have to go to the hospital right away.

My husband and I rush to see him for the last time. I’m anxious about what to expect. Will we all cry together? What will he say? How am I going to deal with seeing my father in the last hours of his life?

I push through the doors of the high-care unit and see my father lying in a hospital bed in the room ahead of me. He’s looking straight at me. Relief washes over me at the thought that we’ll be able to speak.

But as I get closer, I realize his eyes aren’t opened – they just appear that way because the non-invasive ventilator strapped so tightly over his head is pulling the skin of his face. A machine is breathing for him.

This isn’t the deathbed conversation I expected. It’s a one-way conversation in which we hope our words give him the comfort he needs to deal with the last few hours of his life and whatever happens next.

But I’m relieved I have the presence of mind to tell him, over and over again, that I love him so much. I recall research that the sense of hearing is the last one to go during the dying process.

My father’s heart is a galloping beast, still trying to ride above his drowning lungs, a superhero flying above a city that’s being destroyed. He’s still trying to cling to life, but when he slips away, it’s peaceful. How can my father, who was larger than life, have such an anticlimactic death?

He’s gone, and now I sit with the anxiety over what he must’ve been feeling or thinking as he neared death’s door. It helps me to think that perhaps he knew he was dying, and there’s some evidence of this. A few days before his death, he told my mother three men he knew from childhood visited him at the hospital. Sometimes, she saw him whispering to someone in the room she couldn’t see, deep in a conversation she couldn’t understand.

The author and her family (pictured from left: the author’s father, her sister, the author, and the author’s mom) during a trip to Italy in 1993. “We’re at my uncle's home in Milan,” she writes. “I was 12.”
The author and her family (pictured from left: the author’s father, her sister, the author, and the author’s mom) during a trip to Italy in 1993. “We’re at my uncle’s home in Milan,” she writes. “I was 12.”

After my father’s death, I try to ease my anxiety over how I can never go back in time to see him again by engaging in talk with my mother about his last days. I want all the details of what he was thinking or feeling because he didn’t tell me.

“Before he went back to the hospital for the last time, he said that he’s had a wonderful life,” my mother says. “He said he had such great daughters and was blessed.”

Hearing this is bittersweet. I wish he’d been in a position to tell me and my sister himself. Sadly, my father was a mystery even in the days leading up to his death, and I fear we might have had something to do with this because we kept news of his own death from him.

A few weeks later, I’m walking through a grocery store and regretting choosing this day to shop. It’s Father’s Day, and all the sappy dad-related songs are playing. I try to fight back the tears and the anxious thoughts that storm into me. What are the last things my father and I said to each other? I can’t remember, and it stresses me out. But then a memory sneaks into my grieving brain, bringing peace.

Two weeks before my father’s death, when he was stuck in a loop of being in and out of the hospital, he was frustrated and unsettled. He couldn’t breathe, even with the oxygen streaming into his nose, and we all took turns fanning his face with a piece of cardboard.

While everyone in the room was chatting, my father reached over and took my hand. He kept it there with him for a good few minutes without saying anything. I can’t remember the last time he held my hand. This is what I should choose to remember as our last interaction. This, more than the words we did or didn’t exchange, is what matters.

I realise that my grieving brain has been trying to hold on to the moment of his death because I’m not ready to deal with it. I find comfort in the words of Elisabeth Kübler Ross in her book “The Stages of Dying”: “There is a time in a patient’s life when the pain ceases to be, when the mind slips off into a dreamless state… It is the hardest time for the next of kin as he either wishes to take off, to get it over with; or he desperately clings to something that he is in the process of losing forever.”

Although I still wonder if my father should have known he was dying, I realise I don’t want to cling to his last hours. I don’t want to remember him being sick, when he stopped looking like himself, but I do want to remember how he held my hand in the hospital that day. I want to remember how he used to make us laugh and how he appeared to me in a dream before his death. With a big smile on his youthful, healthy face, he said, “Thank you for everything.”

Complete Article ↪HERE↩!

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Embracing life’s purpose in the face of inevitable death

“I cannot escape death, but at least I can escape the fear of it.”
– Epictetus

By Michael Brant-Zawadzki, MD

I wish more people knew that quote during the pandemic. I write this on November 1st, celebrated as Dia de Muertos or “Day of the Dead.” Epictetus and the other Stoics knew that death is inevitable, that life can change in an instant, and viewed it as a reminder to live each day purposefully and virtuously. In a world where meaningless death is a daily fact, only the individual can define meaning in their own lives.

This introduction is not meant to be morose but rather meant to explore the dilemmas in health care at the end of life. One of my colleagues took a phone call that I overheard. It was from the nursing home where his 88-year-old demented mother was housed, calling to say they were taking her to the emergency room due to a change in mental status. “Stop,” he shouted. “My mother has a do not resuscitate health care directive.” The conversation became an argument between the facility’s risk-averse nurse manager and him. The paramedics arrived, the nursing home protocol directed them to take her to the ER, and that was that. The ER soon called; my colleague’s mother was in septic shock, in renal failure due to a kidney infection, and they were starting her on IV antibiotics, and planning dialysis. The doctors were following their script, one based on best evidence-based care. The son anguished in his reminding them of his mom’s end-of-life directive, particularly because his sister, now in the loop, wanted to do “everything we can” if death was not a certainty.

But it is, as reluctant as we all are to acknowledge. Most frontline doctors won’t argue with a family member who reverses the directive in a moment of grief, panic, or guilt. Given their training, these acute care specialists are not willing participants in a “death panel.” The doctors’ skill set and enthusiasm also influence the approach. Highly skilled physicians – expertly trained and confident in their technical talents – are enthusiastic and passionate about what they do and want to do it. This is why advanced hospitals, like ours, have a palliative care team led by a physician, a trained social worker, with an ethics panel to help families and doctors in the throes of such life-wrenching decisions.

Economics plays a role. The amount of health care dollars spent in the U.S., 4.3 trillion dollars or 19 percet of GDP, includes 1.2 trillion spent in the last months of life. That 1.2 trillion is over four times as much as England spends for all health care annually (on a per-patient basis, England spends less than half as much as the US). In England, many procedures, including dialysis, are restricted by the National Health Service, based on utilitarian principles that consider quality of life versus cost. In the US, a fee-for-service payment system financially rewards physicians for each procedure: Hospitals are paid a per diem fee based on the admission diagnosis. This “per click” payment model influences decisions by both parties, consciously or not. Yet many providers and most families do not consider health care expenses when the moment comes to do “everything we can” in the last stages of life. Switching an in-patient to hospice care can improve a hospital’s “pay for performance” mortality scorecard.

The American College of Physicians previously issued guidelines that emphasize each physician’s duty to provide “parsimonious care”; that is, to “practice effective and efficient health care, and to use health care resources responsibly.” Their president at the time stated: “We also have to realize that [we must think] about how resources are used in an overall sense [or] there won’t be enough health care dollars for our individual patients. So while concentrating on our individual patients and what they need, we also need to think on this bigger level both for their benefit and for the well-being of the community at large.” My italicized emphasis brings to mind F. Scott Fitzgerald’s oft-quoted definition of a first-rate intelligence: The ability to hold two opposed ideas in the mind at the same time and still retain the ability to function.

Death is not an entity but a rumination: a tornado of thoughts, fears, visions, and emotions. Only humans see what can and – in the case of death – will be. Not all embrace the introduction, yet it is that sad certainty that introduces order, purpose, and increasing urgency into the human contract. The intensity of a loved one’s passing, or a pandemic, brings it to the forefront of the mind.

Or, as Camus put it in his famous book The Plague: “Plagues are infrequent but constant and they do not alter the conditions of mankind (everybody dies) but rather concentrate our misfortunes into moments where everyone thinks for a change that mortality is afoot.” The Stoics remind us daily that “mortality is afoot” to start each morning with a renewed passion for life.

Complete Article ↪HERE↩!

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It’s good to remember

— We are all on borrowed time

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Getting older is almost like changing species, from cute middle-aged, white-tailed deer, to yak. We are both grass eaters, but that’s about the only similarity. At the Safeway sushi bar during lunchtime, I look at the teenage girls in their crop tops with their stupid flat tummies and I feel bad about what lies beneath my big, forgiving shirts but — and this is one of the blessings of aging — not for long. Aging has brought a modicum of self-compassion, and acceptance of what my husband and I call “the Sitch”: the bodily and cognitive decline that we all face sooner or later. Still, at Safeway, I can’t help but avert my eyes. Why push my luck?

Twenty years ago, when I turned 50, I showed the dark age spots on my arms and the backs of my hands to my wonderful dermatologist.

“They used to call these liver spots,” I said, laughing.

There was silence. “They still call them liver spots,” he replied.

My mother died of Alzheimer’s disease when I was 50; my father had died of brain cancer 25 years before, so I have always been a bit more tense than the average bear about increasing holes in my memory, and more egregious moments of dither. I thought of my 50s as late middle age.

At 60, I tried to get this same dermatologist to authorize surgery to remove the pile of skin of my upper eyelid that gathered like a broken Roman shade at the eyelash line. “Look,” I said, “the eyelid has consumed my eyeball. I will not be able to see soon.”

I pulled out an inch of skin to demonstrate my infirmity.

He pulled out three inches of his own. “Ticktock,” he said. And he was right. All things skin had gone to hell, from the crepe of my forearms to lots of new precancerous lesions that he routinely froze off or biopsied, once making me use a horrible burning cream all over my face that turned me into Peeling Tomato Girl.

So many indignities are involved in aging, and yet so many graces, too. The perfectionism that had run me ragged and has kept me scared and wired my whole life has abated. The idea of perfectionism at 60 is comical when, like me, you’ve worn non-matching black flats out on stage. In my experience, most of us age away from brain and ambition toward heart and soul, and we bathe in relief that things are not worse. When I was younger, I was fixated on looking good and impressing people and being so big in the world. By 60, I didn’t care nearly as much what people thought of me, mostly.

And anyway, you know by 60 that people are rarely thinking of you. They are thinking about their own finances, family problems and upper arms.

I have no idea of the process that released some of that clench and self-consciousness, except that by a certain age some people beloved to me had died. And then you seriously get real about how short and precious life is. You have bigger fish to fry than your saggy butt. Also, what more can you lose, and what more can people do to you that age has not already done? You thought you could physically do this or that — i.e., lift the dog into the back seat — but two weeks later your back is still complaining. You thought that your mind was thrilling to others, but it turns out that not everyone noticed, and now they’re just worried because your shoes don’t match.

Anyway, as my dermatologist hinted, the tock did tick, and one day he was gone. He retired. Then last year, I heard he died.

>Which brings us to death, deathly old death. At a few months shy of 70, with eyeballs squinting through the folds, I now face the possibility that I might die someday. My dad said after his cancer diagnosis that we are all on borrowed time, and it is good to be reminded of this now and again. It’s a great line, and the third-most-popular conversation we oldies have with each other, after the decline of our bodies and the latest senior moments: how many memorial services we go to these days.

Some weeks, it feels as though there is a sniper in the trees, picking off people we have loved for years. It breaks your heart, but as Carly Simon sang, there is more room in a broken heart. My heart is the roomiest it has ever been.

I do live in my heart more, which is hard in its own ways, but the blessing is that the yammer in my head is quieter, the endless questioning: What am I supposed to be doing? Is this the right thing? What do you think of that? What does he think of that?

My parents and the culture told me that I would be happier if I did a certain thing, or stopped doing that, or tried harder and did better. But as my great friend Father Terry Richey said, it’s not about trying harder; it’s about resisting less. This is right up aging’s alley. Some days are sweet, some are just too long.

A lot of us thought when we were younger that we might want to stretch ourselves into other areas, master new realms. Now, I know better. I’m happy with the little nesty areas that are mine. For some reason, I love my softer, welcoming tummy. I laugh gently more often at darling confused me’s spaced-outed ness, although I’m often glad no one was around to witness my lapses.

Especially my son, who frequently and jovially brings up APlaceForMom.com. He’ll say, “I found you a really nice place nearby, where they’ll let you have a little dog!” Recently, I was graciously driving him and his teenage son somewhere and made a tiny driving mistake hardly worth mentioning — I did not hit anyone, nor did I leave the filling station with the nozzle still in the gas tank — and he said to his boy just loud enough so that I could hear, “I’m glad we live so close to town, so it won’t be as hard for her when we have to take away her keys.”

I roared with laughter, and with love, and with an ache in my heart for something I can’t name.

Complete Article ↪HERE↩!

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We Should Talk More About Dying, Cause You Will

By  

Mounting the pulpit at the Glenn Memorial United Methodist Church in Atlanta, Jason Carter explained of Rosalynn Carter, “My grandmother doesn’t need a eulogy; her life was a sermon.”

It’s a line that’s been used in countless memorial services and even more sermons, seminars, and motivational sayings because a great truth is delivered in a simple saying. Most folks have been to the funeral where the person laid out at the front becomes in death a sinless saint according to the words flowing over the casket and into the gathered mourners. If we are fortunate, we get to attend the celebration of life of someone who had far more to praise than the allotted time allows.

This service was the latter. Most tributes are not what Rosalynn Carter got, of course. A front row of all the living first ladies per the departed’s specific request, a former and the sitting President of The United States of America, Trisha Yearwood and Garth Brooks performing, live streaming to the world; while the mechanics of the tribute were familiar there is of course an elevated sense when it is someone as universally respected as Rosalynn Carter.

“The first rule about funerals,” I can hear my father’s voice clearly as he explained something he himself had officiated hundreds of times, “is to understand they are not about you.” I heard it growing up so many times but took until much later in life until I fully understood this maxim. I’ve come to use big public displays of folks passing on as an opportunity to really learn something by watching the reactions. Especially online with social media and news media, a famous person’s death becomes something of a canvas for folks to publicly paint whatever they want. Usually, they paint what they were already going to paint, just with the nomenclature and excuse of whoever died to crank it up from the usual simmering 6 to a viral-baiting 11.

When folks use a famous funeral or celebrity death to tell the world what they really think, believe them.

When the politically ate up knuckleheads online go on and on about Melania Trump being at the service — to the point the Carter family had to come out with a statement that she was there at Rosalynn Carter’s specific request — believe them. When another group of equally-politically ate up but opposing side knuckleheads take a run at the appearance of Michelle Obama with vile caricatures and accusations, believe them. When utterly tone deaf and stupid protestors outside the church try to detract from the service and disrespect the man who is the most high-profile supporter of the cause they claim is important to them as he grieves his wife, believe them. When folks can’t just say nothing if they have nothing good to say, because trending or something, believe them.

Death, especially celebrity death, seems to be a starter pistol-like signal for too many to rush to their device and bare the darker corners of their soul because…why? The person who died, who has no clue who any of these folks are, is dead and can’t respond? Are the online seal claps of a particular in-group some precious resource that can be uniquely mined only as the digital community virtually rallies around the corpse in some sort of viral wake?

While the negative effects of having very online lives is often overblown hyperbole, there really does seem to be something to nationalized politics and culture distilled into personally curated online consumption that isn’t helping our sense of mortality. Social media — like money, power, and alcohol — emboldens and empowers folks to be more of what they really are internally to the outside world without the usual filters. When the filters are off, you get what really dwells in the heart and mind that the spell check of sobriety or keeping your bearing offline in the real world usually corrects.

Being a productive citizen of society begins with being a functional mature adult. A keystone for building a functional adult life is understanding the linear ride from birth to death we are all on. The inevitable, unpredictable, linear ride from birth to death which everyone is taking, and no one is exempt from. While the psychologists, philosophers, and theologians hash out all the particulars, most of us mere mortals can just start with embracing the fact that we are going to die. Setting that immutable fact in its proper place makes a good guardrail to living a good life that can end at any moment, and should be lived so that the speaker over the casket doesn’t have to lie too terribly much about what we accomplished before shuffling off our mortal coil.

The same social and news media that makes bank on celebrity deaths is rife with self-help gurus and Fad O’the Day programs about living a better life, longer life, more fulfilling life, on and on and on. Nothing wrong with those things in the abstract, and probably plenty of practical usages therein for folks to apply. But less popular on YouTube and TikTok is the reality of mortal life. Movies love the young, passionate romance, but Hollywood makes fewer films about the octogenarians trying to get their spouse of a half century to take their meds as they demand to know who they are because time and illness has robbed the mind. Not a lot of influencers who have inhabited our gyms and fitness centers with their mobile video shoots like locusts upon the harvest set up shop in rehab centers and nursing homes to portray not the latest viral fitness craze, but folks just hoping to walk to the bathroom unassisted one more time.

When Jimmy Carter was wheeled into his wife’s tribute, suited and covered in a blanket bearing an image of the couple, some on social media reacted poorly. How, exactly, they expected a 99 year old man who has been in hospice since February and just lost his wife of nearly 80 years is supposed to look was not addressed. Perhaps many of them have never cared for anyone at the end of natural life. Yes, they don’t look as they once did, they struggle, their mouths hang open, they often can’t communicate effectively, they can’t be as they once were because time is undefeated against presidents or paupers alike.

An aged, infirmed, and clearly struggling Jimmy Carter — in what will be his final public appearance — drew strong reactions online. But hopefully after those reactions, the Very Online who live in a world full of likes and daisies and no bad things on the carefully curated timelines look again, hard as it may be. Not as a former president, or any politics or policies, or even the lifetime of philanthropic work the Carters together did since they first met in 1945.

What did you see in that frail, dying man, and did you learn the lesson of life that was preached by Rosalynn Carter during her 96 years of life?

Far from revolting, or scary, or drawing pity, the scene at the front of the Glenn Memorial United Methodist Church was one of great beauty. Not because of the pomp and sober circumstance, or the dignitaries, or the great words. In Jimmy Carter we saw a man putting the period on the end of the last sentence in a great story of personal love and integrity. His last public struggle, completely reliant on others to get it done, but no less present and willing himself to do what he knew needed to be done and was good and proper to do so. The small hours of highly personal struggles as death nears is something we don’t talk about, or show, or want to think about. But we should be thankful for the Carters in this respect: that in Rosalynn’s remembrance and Jimmy’s last leg of the journey without her, we don’t need fancy words to explain to us a life well lived, and death met with courage and dignity.

We just had to watch.

Complete Article ↪HERE↩!

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“Terminalism”

— Discrimination against dying people— is the unseen prejudice of our times

In hospice care and hospitals, we prioritize those with more life to live over those who are terminally ill. What is that, if not prejudice?

By Jonny Thomson

  • Philosopher Philip Reed defines “terminalism” as discrimination against dying, people or treating terminally ill people worse than they would expect to be treated if they were not dying.
  • Examples of terminalism include denying necessary medical care to dying people based on cost, prioritizing life extension over quality of life in allocation protocols, and granting experimental treatments only when conventional options have failed.
  • Reed argues that terminalism is unjustified and highlights the importance of recognizing the rights and value of dying individuals as human beings.

When you are dying, you are placed in a hospice. Often, this is a real, brick-and-mortar hospice with palliative care and psychological support. At other times, though, the hospice is a metaphorical one. The terminally ill are ignored by those too awkward or scared to face them. They are told not to work or exert themselves in the slightest. Dying people exist as ghosts and live in the hinge space between society and “on the way out.” When you’re told you’re going to die, you become invisible.

This has led the philosopher Phillip Reed to coin the expression “terminalism.” For Reed, terminalism “is discrimination against dying people, or treating the terminally ill worse than they would expect to be treated if they were not dying.” In other words, it involves treating those in a hospice — literally or metaphorically — as second-class citizens.

Here we look at three examples of terminalism and consider to what extent, if at all, it can be justified.

How quickly are you dying?

It’s both trite and existentially invigorating to say, “We are all dying.” If life is seen in terms of a finite number of heartbeats, we are all ticking our way to the grave. But if we are to discuss the rights of the terminally ill, we need to define “dying” a bit more closely. Reed discounts those who are likely to die in the extremely short-term; there is little to be said about discrimination against someone on an operating table or who is bleeding out on a battlefield.

Reed argues that those who will die imminently are not “socially salient,” which is to say that their state of dying will not be long enough to affect social relationships, social norms, or legal attitudes. As he puts it, “because membership in the group is, by definition, extremely short-lived, it cannot play a role in a wide range of social contexts for any one person.”

Therefore, if we are talking about discrimination as a social phenomenon, we have to talk about those who have been terminally ill for long enough to experience some kind of discrimination. Reed more or less settles on the established legal position of the U.S. and many in the West, in which “terminally ill” is defined as anyone who will die in the next six months from an illness.

Everyday terminalism

In an article for the Journal of Medical Ethics, Reed goes on to list examples of terminalism in our legal and social systems. Here, we look at three.

Too expensive to bother. If you want to receive hospice care, which is overwhelmingly palliative, you have to be in the last six months of your life. Yet, if you receive hospice care, you will stop taking (or not be offered) life-prolonging drugs, even when those drugs have palliative effects. Why bother wasting money extending someone’s life when their death is inevitable? What’s more, 78% of American hospices turn away patients requiring high-cost care. But, as Reed says, “There is a strong social consensus that people should not be denied necessary medical care simply based on the cost, and yet this happens regularly for dying people (at least if they also need hospice care).”

Allocation protocols. During COVID, most hospital systems developed rules of allocation for life-saving drugs and apparatuses. Those who were dying were at the bottom of the list. When an institution is suffering from limited healthcare resources, such as organs for transplant, they will often be biased against the terminally ill. Reed criticizes protocols that prioritize life extension over quality of life, as they implicitly undervalue the immediate needs of dying patients.

“Right to try” laws. While these laws ostensibly empower terminally ill patients to access experimental treatments, they also highlight a paradox. They grant a certain freedom only when the patient has been deemed beyond the help of conventional medicine, potentially relegating them to the status of test subjects when traditional care options are exhausted.

Reed suggests a useful thought experiment to highlight the prejudices in each case. He writes: “It is easy to see the discrimination if we change the eligibility criteria to another socially salient group: if we said that [the above applied] exclusively for racial minorities or trans people, the message would be that we do not care about protecting racial minorities or trans people.” We do not care about protecting dying people.

Justifying terminalism

Reed believes that a lot of people will find it somewhat ridiculous to call these instances a kind of discrimination. When presented with limited resources, surely it’s better to focus on those who have longer to live? In other words, isn’t it okay to value longevity over the moribund?

Reed calls this a structural “terminalist prejudice,” with little philosophical justification for it. He argues that “many of us tend to think, explicitly or implicitly, that a worthwhile life involves both the kind of life that has a future and also enables a person to ‘contribute meaningfully’ to society.”

We don’t want to see ourselves as cruel or prejudiced. We don’t want to accept that we are privately and socially devaluing human life based on our terminalist biases. Dying people are human beings as well. They have brothers and sisters; sons and daughters; or wives and husbands. They read books, watch TV, talk, laugh, and reminisce. If all humans have rights, dying  people have rights, too. They are valuable in themselves, not for some abstract, unknown “contribution” they might make. As Reed puts it, “The reason that terminalism matters is that dying persons matter.”

Complete Article ↪HERE↩!

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People may not fear death, but they dread the process of dying

By Barney Zwartz

Native Americans, I read recently, have a rather beautiful concept called “second death”. The first death is when breath finally leaves the body; the second is when someone says your name for the last time.

This is not entirely dissimilar from the notion at secular Australian funerals of “celebrating” a life. Stories, humour, sorrow and love honour the lamented lost, and help cement them in our memories – they too live on, in a sense, while they are remembered.

In her book A Better Death, oncologist Ranjana Srivastava notes how unprepared most people – even those aged in their 90s – are for the end of their life.
In her book A Better Death, oncologist Ranjana Srivastava notes how unprepared most people – even those aged in their 90s – are for the end of their life.

What surprises me is how often non-believers make remarks like “she’s in a better place now” or “he’ll be looking down from above” – a paradoxical cultural legacy from the Christian belief in heaven.

Yet perhaps it is not really surprising. After all, belief in an afterlife is near universal across cultures from the earliest times, as evidenced by prehistoric grave sites – it’s utterly fundamental, which is a form of evidence.

Non-believers tend to reject the idea of an afterlife as mere wish fulfilment, but their rejection could equally be understood the same way, for example, as a reluctance to admit the possibility of judgment. (This is the thought of the Christian version of the “second death”, described in the New Testament book of Revelation.)

The atheist understanding, like the Christian’s, is entirely a matter of faith – no categorical evidence exists either way, though Christians can point to the biblical accounts of the post-resurrection appearances of Jesus.

Melbourne oncologist and writer Ranjana Srivastava, in her compassionate and thoughtful book A Better Death, notes how unprepared so many people are to die who have never thought about mortality and cannot accept it – even people in their 90s.

Having supported so many people of various ages and circumstances as cancer takes their life, she writes that many suffer a sort of existential pain – denial, absence of meaning, recrimination, regret – that can be as hard to bear as the physical aspects.

The urgent thing, she says, is to reflect before we age. “Dying well is about treating ourselves and others in the last act of life with grace and goodwill,” and there can be many moments of happiness, fulfilment and discovery that give meaning to life.

Death is today’s great taboo. People may not fear death, but they dread the process of dying. As Woody Allen quipped, he’s not afraid of dying, he just doesn’t want to be there when it happens.

These days, it seems, we all want to die painlessly in our sleep, preferably unexpectedly with no suffering beforehand. This is a stark contrast to previous centuries, when people wanted time to settle their affairs, take their leave of loved ones and, in particular, prepare to meet their maker.

Perhaps that’s a better death, both for the dying and for those they leave behind.

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Hospice Nurse Hadley Vlahos Has Seen Incredible Things from People Facing Death That Defy Medical Explanation.

— Here’s What It’s Taught Her About Life

By Stacey Lindsay

In her bestselling book The In-Between: Unforgettable Encounters during Life’s Final Moments, hospice nurse Hadley Vlahos writes the truth she sees in her job working with dying patients. “The one thing I can tell you for certain is that there are things that defy medical explanation and that in between here and whatever comes next, there is something powerful and peaceful.”

Alas, Vlahos still knows that “in between” and death are tricky topics. Death anxiety is real, she tells The Sunday Paper. But it is this angst that she hopes to dispel, both with her honest posts on social media (Vlahos has over 2 million followers on TikTok and Instagram combined) and in her book, in which she writes about all she’s witnessed and gained. As she says in a video post, “I found life again from caring for dying patients.”

Books on what those who are dying can teach us abound, and they share beautiful similarities in how we must grab the time we have and learn to embrace the beauty of passing on. Yet The In-Between is a book only Vlahos could write. In her captivating narrative, she layers between her accounts of people going to the other side, her own journey of facing poverty as a single mom, taking a chance in becoming a hospice nurse, and finding a Technicolor purpose—perhaps even more remarkable than she ever could have imagined.

A CONVERSATION WITH HADLEY VLAHOS
You write that people ask you about the subject of death often. What does this curiosity say to you?

I’ve been a hospice nurse for seven years now. And in the beginning, it was very hush, hush. You don’t talk about it. And I’ve noticed a huge cultural shift over the last two to three years since COVID, where people want to know. People realized how in the dark they were about what was going on, and they became hungry for knowledge. And it’s wonderful. Whenever you’re educated about something, it reduces the fear around it. I think everyone has that little bit of death anxiety, of course. Whenever we open up and talk about it, it makes it better.

You share these bone-chillingly incredible stories about things that happen to people as they are dying in hospice that, as you say, “defy medical explanation.” Many people connected with loved ones; in one story, Miss Glenda started talking to her deceased sister in the time leading up to her death. Tell us more about what you see.

We don’t learn in nursing school about people seeing deceased loved ones. So, whenever it first started happening, I thought it was a hallucination. Because that’s what I learned: People take medications, and then they hallucinate. And then I started talking to all my hospice coworkers and physicians, and I realized that they don’t believe that it is hallucinations. My first thought was maybe they’re all religious. But then I started being the one in control of my patients’ medication; I was the one who knew what they were taking and not taking. I would see the correlation between no change in medications, some patients not taking medications at all, and people with completely different religious backgrounds and diagnoses, and they were all having the exact same experience of their deceased loved ones coming to get them at the end. I started looking into it, wondering why this was happening and we don’t know why. There is no explanation as to why this happens and it is incredibly interesting to me.

There are a few different ones that happen. There is the seeing of deceased loved ones. There is also something called terminal lucidity, which is where people with dementia and Alzheimer’s will suddenly gain their memories at the end and be able to have conversations. I don’t witness it too much, but it is unbelievable to witness, and we don’t know why that happens either. The other one is what we call a surge of energy. That is where people at the end who have maybe been bed-bound for a while or have not been eating or talking much will suddenly be like, ‘I want to go into the living room and eat my ice cream and chat with my family.’ We don’t know why it happens, but it can sometimes give people a false sense of hope. And that is hard because loved ones will call me and say, ‘They’re doing so much better. I don’t even know if they need to be on hospice,’ when in reality, it usually means that they’re going to die very soon.

Going back to what we were talking about, whenever we educate people, they then know, oh, this could mean that my time is limited, and I need to enjoy this moment and take advantage of it.

This all sheds light on how we may force things on our loved ones who are dying, perhaps food or water, for instance, when they no longer need it. It is well-intentioned, but it speaks to a need for more understanding. What do you wish people who have a loved one who is dying knew?

I wish people knew that patients know that they’re dying. A lot of times, I watch this dance where someone is on hospice, or they’ve had terminal cancer for years, and no one wants to talk about it. Everyone wants to pretend that it’s not happening. What they think they’re doing is they are being kind by not saying, ‘I know you’re going to die one day,’ and not bringing up a difficult topic of conversation. But in reality, what I see with a lot of patients who confide in me is that they feel alone. They have all of these big feelings and thoughts and feel like they can’t talk to anyone about it because people change the subject. So I always tell family members, if your loved one brings it up, please talk to them and don’t try to change the subject. I know it’s uncomfortable. I know that the family members are trying to do the best thing, and they think they’re doing the right thing, but sometimes it leaves patients feeling alone.

You worked as a nurse in a traditional hospital setting before transitioning to hospice. How you speak of the hospice community paints a picture that it’s holistic and more harmonious. What things from the hospice world do you wish could be imbued in the medical world?

I have been what is called a case manager. If you’re in hospice, you have a registered nurse case manager. That means that I had patients assigned to me that were my responsibility. So, if a physician wanted something, the doctor had to come through me. If the chaplain wanted something, he had to come through me. If anyone wanted anything, they would have to come through me. I know not only what medications my patients take but also what prayers they’re saying with the chaplain and what conversations they’re having with the social workers. That kept things very cohesive.

A lot of patients tell me, and I’ve seen this from my own experiences, that it can feel like your cardiologist is telling you to do one thing and another doctor is telling you to do the opposite. No one in there’s saying ‘Okay, the cardiologist said this, let me call them.” Because so often, patients don’t know how to have the medical conversations that need to be had. There needs to be that one person. Right now, the only case managers we have in the hospital-type setting work for insurance companies, and that can be a gray area, as they’re usually on the phone and not caring for the patient and laying hands on the patient. So, I think other areas of medicine could learn from that approach, making it holistic.

You’ve said many times how positive of an experience death has been for so many of your patients. What can that teach us about life?

It can really teach us how to live a good life. Truly. I think that whenever we recognize that our life is short, and that’s such a cliche statement, but whenever we realize that, Okay, one day, I’m going to be on my deathbed. I see my patients, and I think, ‘That’s going to be me one day.’ So am I doing what I want to do every day so that when I’m in this position one day, I don’t have regrets? Or I can look back and do my life review with my own nurse and be like, ‘Yeah, I really went for it. Maybe I failed a little bit, but I really went for it. I really lived life.’ I think that that’s a really beautiful thing to be able to do.

When it comes to life wisdom, regrets, and looking back, what are some things you’ve heard from people as they pass on?

They tell me a lot! ‘Eat the cake,’ which I put in my book, is one of my favorites. I think about it all the time. But one thing that people have told me a lot, which I surmised from all of them, is that they lived for other people instead of themselves. That can mean a bunch of different things. That could be buying a new car because the person on the street has a new car. That could be choosing a career because that’s what your parents or society expected of you. Those are the regrets I’ll hear: They wish they would have just lived for themselves instead of others. Whenever I first heard ‘Don’t try to keep up with the Joneses,’ as someone said to me, I first thought the best way to live is to have no possessions and live a very low-key lifestyle. But as I started talking to more people, I realized it was more about: If you buy this house, is it because you love the house and you love coming home to this house every day? Does it make you happy? Or if you’re really into cars, does that car bring you joy? So I’ve realized that ‘Keeping Up with the Joneses’ means buying stuff for other people, not yourself.

What is the “in-between”?

It has a few different meanings. The main one is that I feel I’m with patients in between this world and whatever comes next. We get that little window of patients between worlds, and they seem to go back and forth. It’s my favorite period of time. I love being part of it.

On a more personal life side, the in-between for me was getting comfortable in the uncomfortable and being able to say, ‘Maybe I don’t have the answers, or maybe my life isn’t exactly how I want it to be, but I’m still finding happiness in this in-between phase.

Your book has been wildly successful. What did you hope people would take away as you wrote it? And what has surprised you now that it’s in so many people’s hands and ears?

I hoped that people would have less death anxiety. Whenever we turn on the TV, we see this tragedy—all the time. There was just a study that came out about how 80 percent of what we’re shown is just traumatic deaths. And I’m aware that that is not the reality for the majority of people. So, I was hoping that people would understand that you’re likely going to die in a slower way. And I think that that helps with people’s death anxiety. That was always my goal.

I was very shocked just how much people loved it. And I was very shocked at how much people related to me on a personal level. I was nervous. I quite literally wrote whatever my thought was. I put myself back in that moment in time, and whatever my thought was, whatever I was thinking, I just wrote. It was extremely honest, and I was a little bit nervous about it. I have been shocked by the messages, handwritten letters, and people just saying, ‘Thank you. I’m really glad to see someone else go through these things.’

And then how many ‘Eat the Cake’ tattoos! I think I’m up to 17 tattoos that I’ve seen. I love them so much!

Hadley Vlahos is a registered nurse specializing in hospice and pallative care. She is known as “Nurse Hadley” to her over two million followers online. Her first book, The In-Between: Unforgettable Encounters During Life’s Final Moments, is a New York Times bestseller. Learn more at nursehadley.com.

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