Tag: Meditation

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I Promised My Sister I Would Write About How She Chose to Die

By Steven Petrow

On the day before my sister Julie died, I lay down on her bed and held her gingerly in my arms, afraid that any pressure would hurt her. She had lost so much weight that she looked like a stick figure I might have drawn when we were kids. As her body had wasted, her tumors had grown — now several of them bigger than baseballs. Her abdomen looked like the lunar landscape, with protrusions everywhere, the sources of her pain plainly visible.

Two and a half months earlier, her oncologist explained that these tumors might soon block the liver’s ability to drain properly, resulting in liver failure, usually a fast and painless death. “It will be as though you’re going to sleep,” I remember him telling us on a Zoom call.

That had not happened. Those tumors continued to grow. No matter the doses of fentanyl and morphine, Julie cried out in pain, the only time during her long illness that she suffered like that.

On the bed, Julie and I said little as I smelled her hair, rubbed her back and told her how much I’d miss her. Born five years apart (I am the elder), we were a pair of matching bookends — from our teenage years, when we’d go to our respective queer bars, to later in life, when each of us faced a cancer diagnosis. I asked if we had anything unresolved between us, as my therapist had suggested. “Nope,” my sister replied. “I don’t want to leave you all, but it’s time.”

A few hours later, she joined the rest of the family for our last supper together. I don’t remember much of the evening; either I failed to capture that memory or I’ve erased it, too painful to keep. I do recall Julie had one bite of a friend’s homemade Key lime pie. Apparently, a sweet tooth never dies, even if you are about to. Before bed, Julie hugged and kissed each of us: her wife and two daughters; my brother, Jay, and his wife; and me. Tucked in under the covers, I pulled out my iPhone to continue a ritual I’d recently begun with my siblings. From the guest couch, I texted:

Steven: Good night, sibs
Jay: Good night 😘
Julie: Good night to the best big brothers in the whole world 💚💙❤️
Jay: Love you to the moon and back!!
Steven: And to the bestest sister ever

Two months earlier, I joined a conversation my sister and her wife were having with a social worker, a new member of their hospice care team. They kept discussing “the MAID,” which I soon came to understand is the acronym for the New Jersey law referred to as Medical Aid in Dying. It allows New Jersey residents with terminal illnesses to choose to end their lives by taking a cocktail of life-ending medications.

This important piece of legislation was enacted in 2019, and as of last year, 186 people had chosen to die this way. (That’s a very small percentage of annual New Jersey deaths.) Julie, a lawyer, had done her research and had told me that the Garden State is one of only 11 jurisdictions (10 states and the District of Columbia) that allow medical aid in dying, also known as death with dignity and end-of-life options.

If you live in one of the other 40 states, you must wait for the Grim Reaper to pay a visit, no matter how much pain and suffering that entails. Nor can you pack up and move to New Jersey (or most other states where MAID is legal), because you must be a resident to qualify, which, at best, can take time. Time is usually not readily on hand for those who are terminally ill.

In late 2017, Julie learned she had advanced ovarian cancer. Since then, she’d endured one nine-hour surgery, six rounds of chemo, three recurrences and two clinical trials. “Enough,” my sister told her oncologist a few days before her 61st birthday, in April of this year. “I’ve decided to end treatment,” she added, to make sure he understood, and then sang, off-key, the famous Carol Burnett song, “I’m So Glad We Had This Time Together.” She asked, “How much time do I have left?” His reply: “Two or three months, at the most.”

My sister understood from Day 1 that she’d most likely die from this cancer, which, when advanced, has a mortality rate of 80 to 85 percent, according to Dr. Jason Konner, a gynecologic oncologist in New Jersey. One by one, women she had befriended in an online support group died, their last weeks and days often made awful by what Julie called “Hail Mary” treatments — drugs, many with harsh side effects, often used out of desperation or denial.

“I do not want to die like that,” my sister told me repeatedly. “This is about me taking control of my life.” She added, “I want you to write about this after I’m gone, because not enough people know about this option, even when it’s available.”

She was right. Few of our friends knew of this option, even those living in New Jersey. Kim Callinan, the chief executive of Compassion and Choices, a nonprofit that led the effort to pass New Jersey’s MAID legislation, told me these “laws are meaningless if patients are not aware they exist, which is why we focus on public education during the first five to 10 years after a jurisdiction has authorized medical aid in dying.”

The doctor’s sobering “two to three months” estimate easily qualified Julie for MAID. But that was about all that was straightforward. To hear opponents of the right to die talk, you’d think it was easy to obtain the life-ending medications. New Jersey and most other states where MAID is legal require a patient to be a mentally capable adult resident diagnosed as being terminally ill by two doctors. Julie had to request the drugs twice verbally, with a minimum of 15 days in between each request. At the time of the second ask, she had to be given the opportunity to rescind her directive. The law also required her to sign a written request in the presence of two witnesses, one of whom could have no financial interest in her death.

Julie persisted.

In recent months, lawmakers in at least nine other states have introduced MAID legislation, but opponents remain adamant. As recently as last year, Pope Francis condemned assisted suicide, saying, “We must accompany death, not provoke death or help any kind of suicide.” Other objections come from advocacy groups like the National Council on Disability, an independent federal agency that advises on government policies affecting people with disabilities; the council fears the potential exploitation of vulnerable people, especially if they feel they are a burden to family members. Julie was well aware of these concerns, but she believed MAID’s built-in safeguards prevented such exploitation.

***

With the MAID request approved, Maddy, Julie’s spouse of 35 years, picked up the prescription from a local pharmacy. The price: $900, which is not covered by Medicare, the Department of Veterans Affairs or many private insurance plans. A study published in The Journal of the American Geriatrics Society last year found that 96 percent of people who died by medical aid in dying were white and 72 percent had at least some college education. “The reality is that communities of color, for a wide variety of reasons, also are more likely to utilize aggressive care and less likely to use other end-of-life care options, such as hospice and palliative care,” explained Ms. Callinan. People without the resources to pursue MAID may be forced to make a different choice: suffer through a painful death or take matters into their own hands. “Be sure to include these statistics when you write about this,” my sister directed me.

With her pain unabated, my sister’s next task was to choose the day she would die. Our entire family supported Julie’s decision; still, we did not want to say goodbye. We made silly excuses for why certain days were inconvenient. “I have an invitation to my friends’ 35th anniversary in Provincetown the third week of June,” I blurted out. One of Julie’s daughters said, “I’ve committed to a writing workshop starting July 4.” Julie’s best friend, Jenny, had plans to travel, too. “Please don’t let Julie schedule it before the 25th!” Jenny texted me.

Julie chose Friday, June 30. She gave us four days’ notice, which allowed for time to complete her obituary, finalize the guest list for her memorial and create the program. The day before, my brother handed me a draft of the program for one last copy edit. I’d expected her date of death to be left blank; after all, we could fill it in later. Or maybe I still hoped for a miracle that would make all this preparation unnecessary. But right there, on the program’s cover, I saw dates for the first and last days of her life, her death foretold.

Julie never wavered in her decision, which proved a godsend for the rest of us. That final morning, my sister got up early to write letters to her three girls: her wife and their two daughters. Then she called the insurance company to argue with them about a payment, trying to take one thing off Maddy’s list of to-dos. I heard her say, “I’m doing MAID at noon. I need you to get back to me before then.” That is — was — my sister.

With the sun creeping toward its zenith, Julie took one last walk in her garden, blossoming with hydrangeas, zinnias and some faded irises. Then we twice watched the video Jay had put together for her service — a lifetime of memories condensed into 14 minutes. We took one last family photo, the bookend to hundreds of others, most of them with our Julie in the center. I was confounded by how to pose — a big smile, a little smile, a frown? In looking at the photo now, I think my face looked blank, which was pretty much how I felt.

Before heading upstairs with her wife and daughters, Julie cried for a moment and said softly, “I don’t want to leave you.” A few minutes later, my sister made herself comfortable on the Ultrasuede sofa in her office. Maddy prepared the medications, and after they all recited the Serenity Prayer, my sister gulped it in one shot. Within minutes, she was unconscious, in a liminal state between life and death. Maddy gently laid her wife down on the sofa and then asked Jay and me to come upstairs. I stroked her face; I whispered to her how courageous she was to have made this decision. (After all, it’s commonly said that we lose our sense of hearing last.)

I also vowed to keep my promise to tell this story, a brother’s last act of devotion to a sister he loved beyond all measure.

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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