This is what a good death could be

By Larry Beresford

Recently, a neighbor and friend of mine died. After her cancer was diagnosed as incurable, she was referred to hospice care, and family members traveled long distances to spend quality time with her during her last month of life.

Her neighbors in our condo building clamored for slots in her packed social calendar. Two days before her death, she held a socially distanced open house for people lined up six feet apart outside her door to come in for a few minutes, one and two at a time, to say their goodbyes. Then we received an email telling us she had gone, quietly, at home, in the presence of family. All in all, the kind of good death promised by hospice care at its best. And yet there’s something about how it unfolded that I’m having trouble wrapping my head around.

I had spoken with my friend a couple of weeks earlier, and she told me that she was going through the steps to obtain medical aid in dying – which became legal in California through the 2015 End-of-Life Option Act. It requires two oral and one written request to a physician for a lethal dose of medication, with a 15-day waiting period and confirmation of eligibility by a second physician. My neighbor complained to me about the bureaucratic hoops, knowing that I am a medical journalist who has written extensively about hospice and end-of-life care and trusting that I could listen non-judgmentally.

I told her that the regulatory hurdles, rightly or wrongly, were crafted to prevent the appearance of abuse for a procedure that continues to generate controversy in medical ethics. Advocates say terminally ill patients should have the right to choose the time of their deaths and to opt-out of the pain and suffering of living with an advanced illness. Opponents argue that good hospice and palliative care can obviate that pain and suffering and thus the need for patients to request a medical escape from this precious life. There is little room for compromise between those two views, but the option is now legal in California and eight other states.

Some hospices and hospitals will not participate in the end-of-life option, and it can be hard to find a doctor willing to sign the necessary forms. Very few terminally ill patients actually go through with obtaining and consuming the lethal medication. Only 551 Californians started the process in 2018, and 337 took the medication to hasten their deaths, according to state records. There are also questions about the choice of medication, which may include a combination of morphine, diazepam, and propranolol, a beta-blocker that slows the heart.

My parents died of cancer or cancer-related complications. I was present in my mother’s hospital room when death came to claim her. I was a hospice volunteer for more than 20 years and sat with a number of cancer patients in their final days. In other words, I feel familiar with the process by which cancer, which kills more than 600,000 Americans every year, makes its terminal advance.

Some patients may pursue oncologic treatments until the end, trying to stave off that advance. For others, hospice provides an option to step off the medical treadmill and receive care at home with the support of an interdisciplinary team of end-of-life experts who focus on comfort, symptom management, and maximizing opportunities for dignity and peace. Either way, terminal cancer is relentless.

With good palliative medical management, many – but not all – of the worst side effects and symptoms of terminal cancer can be managed. It can also be very messy, with incontinence, other bodily fluids, and unpleasant odors. All bodily functions will fail by the end. Most of the time, it unfolds on the disease’s timeline, as it has throughout human existence.

When someone dies of cancer, there is a retrospective sense of its inevitability, that this is what had to be. Those who witnessed its relentless advance can find comfort in that inevitability. It wasn’t a cosmic mistake that cancer has taken their loved one; it was part of the natural order of things. The loss and grief for those left behind are real, but the memories, hopefully, can be free of recriminations.

The end of life can also be a time to focus on expressing what Dr. Ira Byock calls “the four things that matter most” as one faces life’s end: please forgive me, I forgive you, I love you, thank you – plus a fifth, saying goodbye. Some have found that life becomes singularly precious when its ending looms, with opportunities for the most poignant kinds of resolutions.

To me, this is what a good death could be, one grounded in the reality that the cancer could not be denied but with doors opened for meaningful interactions along with the mess and pain. And there’s the ineffable profundity of a loved one’s final moment of transition from this world, such a huge, terrible mystery, yet guaranteed to everyone who lives. That should command our respect.

What happened to my friend? A peaceful, natural passing from the cancer? Or did she avail herself of the end-of-life option to make it happen a little sooner? If the latter, was it pain, or loss of control over the messy details, or an unwillingness to continue living with the existential awareness that death was lurking around the corner? Was she tired of living, that tiredness magnified by the cancer, or tired of talking about it? I’ll never know what she chose. It’s really none of my business. My admiration for her is unaffected, undiminished.

But I find to my surprise, thinking it might have been the case, that something feels missing. It doesn’t seem final, or quite so real. With COVID, her memorial gathering was transferred to Zoom. To me, it just doesn’t feel like the same thing, death’s natural advance versus a medical intervention to check out early, even if the outcome is more or less the same.

What were the unmanaged issues to make ending it sooner seem the right answer? Could something have been done to make her more comfortable, more willing to stay for a natural end? Could there have been more poignant farewells, more reflections, more stories? Could I have had one more chance to talk with her about what she was seeing from her vantage on the rim of eternity? Could I have heard her laugh one more time? And am I selfish to want that? That’s what I can’t get my head around.

Complete Article HERE!

In his life and death, my uncle taught me the real meaning of bravery

By

For her Loading Docs short Going Home, film-maker Ashley Williams paid tribute to her late uncle Clive by learning to fly.

Some people say I was brave to fly. I tell them my Uncle Clive was the one who had courage.

He was diagnosed with terminal pancreatic cancer at the age of 50. He had no choice about dying. But he made a choice about how and when he wanted to die.

When I was funded by Loading Docs to make a personal documentary about Clive, I knew I had to challenge myself to do something adventurous, something he would do. He always loved to fly, so what better way to honour him than take to the sky myself and paraglide.

This year marks 10 years since he passed. I wanted to make a film that both honoured Clive’s memory for those who knew him, and shared his story with those who didn’t. In a year when New Zealanders are voting on the End of Life Choice Act, I believed the timing was right, and could offer insight to those that need it.

In preparation for the documentary, as well as the flight, I buried myself in my uncle’s legacy – as a photographer, an adventurer, a scientist and a spiritual seeker. I dug out his old photos and read the letters he wrote over his final year, letters that were integral to the making of this documentary. What struck me most was his courage in facing a terminal illness, dealing with his own loss, yet managing and helping others in their grieving too. Now that is brave.

Making this film I learnt a lot more than just whether or not I could fly. I discovered it’s not just about the big, bold moments when we are brave. It’s about things like kindness in the face of adversity, being able to laugh when things don’t go to plan, standing up for what you believe in and being honest with yourself and others.

Clive taught me that life is about the little adventures along the way. So much of life is out of our control – there will always be the possibility the wind direction might change. So for the days you can, you fly! And oh, how I flew. Up there, among the clouds, being a bird. I realised why I had to do this and it changed me forever.

It also helped me understand what it must have been like for Clive, to have been caged in his bed near the end, watching out his window as the wind blew the clouds across the sky. To have known it was a perfect day to fly, or just go for a walk, but not be able to. When you’re that close to dying, surely you must know a thing or two about living. Clive was always the wise one.

Through Clive’s life and his decision about how he died, when he had only days to live, I hope viewers will consider those who no longer have a choice about whether they die or not, who are asking for the right to die with dignity.

I also want to encourage everyone to read the Act before voting. It’s designed for those suffering from a terminal illness that is likely to end their life within six months, for those who have significant and ongoing decline in physical capability, who have unbearable suffering that cannot be eased, and who are able to make an informed decision about assisted dying. This law could bring real support for people who need it in their time of pain and suffering, and in doing so also provide support and care for those left behind.

My hope is that if I ever face terminal illness I can do it with as much courage and grace as my Uncle Clive. I also hope I’ll have a choice that affords me the dignity I deserve.

Complete Article HERE!

How to Die (Without Really Trying)

A conversation with the religious scholar Brook Ziporyn on Taoism, life and what might come after.

By George Yancy

This is the fifth in a series of interviews with religious scholars exploring how the major faith traditions deal with death. Today, my conversation is with Brook Ziporyn, the Mircea Eliade professor of Chinese religion, philosophy and comparative thought at the University of Chicago Divinity School. Professor Ziporyn has distinguished himself as a scholar and translator of some of the most complex philosophical texts and concepts of the Chinese religious traditions. He is also the author of several books, including “The Penumbra Unbound: The Neo-Taoist Philosophy of Guo Xiang” and “Zhuangzi: The Complete Writings,” as well as two works on Tiantai Buddhism . — George Yancy

George Yancy: For many Westerners, Taoism is somewhat familiar. Some may have had a basic exposure to Taoist thought — perhaps encountering translations of the “Tao Te Ching” or Chinese medicine or martial arts or even just popular references to the concept of yin and yang. But for those who haven’t, can you give us some basics? For example, my understanding is that Taoism can be described as both a religious system and a philosophical system. Is that correct?

Brook Ziporyn: “Taoism” (or “Daosim”) is a blanket term for the philosophy of certain classical texts, mainly from Lao-tzu’s “Tao Te Ching” and the “Zhuangzi” (also known in English as “Chuang-tzu”), but also for a number of religious traditions that adopt some of these texts while also producing many other texts, ideas and practices. This can make it difficult to say what the attitude of Taoism is on any given topic.

What they have in common is the conviction that all definite things, everything we may name and identify and everything we may desire and cherish, including our own bodies and our own lives, emerge from and are rooted in something formless and indefinite: Forms emerge from formlessness, the divided from the undivided, the named from the unnamed, concrete things from vaporous energies, even “beings” from what we’d call “nothing.”

Some forms of religious Taoism seek immortal vitality through a reconnection with this source of life, the inexhaustible energy that gave us birth. Many forms of cultivation, visualization and ritual are developed, with deities both inside and outside one’s own body, to reconnect and integrate with the primal energy in its many forms.

The philosophical Taoism of the “Tao Te Ching” seeks to remain connected to this “mother of the world,” the formless Tao (meaning “Way” or “Course”), that is seemingly the opposite of all we value, but is actually the source of all we value, as manure is to flowers, as the emptiness of a womb is to the fullness of life.

In all these forms of Taoism, there is a stress on “return to the source,” and a contrarian tendency to push in the opposite direction of the usual values and processes, focusing on the reversal and union of apparent opposites. In the “Zhuangzi,” even the definiteness of “source” is too fixed to fully accommodate the scope of universal reversal and transformation; we have instead a celebration of openness to the raucous universal process of change, the transformation of all things into each other.

Yancy: In Taoism, there is the concept of “wu-wei” (“doing nothing”). How does this concept relate to what we, as human beings, should strive for, and how is that term related to an ethical life?

Ziporyn: Wei means “doing” or “making,” but also “for a conscious, deliberate purpose.” Wu-wei thus means non-doing, implying effortlessness, non-striving, non-artificiality, non-coercion, but most centrally eschewal of conscious purpose as controller of our actions.

So in a way the idea of wu-wei implies a global reconsideration of the very premise of your question — the status and desirability of striving as such, or having any definite conscious ideals guide our lives, any definite conscious ethical guide. Wu-wei is what happens without being made to happen by a definite intention, without a plan, without an ulterior motive — the way one does the things one doesn’t have to try to do, what one is doing without noticing it, without conscious motive. Our heart beats, but we do not “do” the beating of our hearts — it just happens. Taoism says “wu-wei er wu bu-wei” — by non-doing, nothing is left undone.

Theistic traditions might suggest that what is not deliberately made or done by us is done by someone else — God — and done by design, for a purpose. Even post-theistic naturalists might still speak of the functions of things in terms of their “purpose” (“the heart pumps in order to circulate the blood and keep the body alive”). But for Taoists, only what is done by a mind with a prior intention can have a purpose, and nature isn’t like that. It does it all without anyone knowing how or why it’s done, and that’s why it works so well.

Yancy: How does Taoism conceive of the soul?

Ziporyn: Taoism has no concept of “the” soul per se; the person has many souls, or many centers of energy, which must be integrated. All are concretizations of a more primal formless continuum of energy of which they are a part, like lumps in pancake batter. These are neither perfectly discontinuous nor perfectly dissolved into oneness.

Ancient Chinese belief regarded the living person as having two souls, the “hun” and the “po,” which parted ways at death. Later religious Taoists conceived of multitudes of gods, many of whom inhabit our own bodies — multiple mini-souls within us and without us, which the practitioner endeavored to connect with and harmonize into an integral whole.

Yancy: The concept of a soul is typically integral to a conceptualization of death. How does Taoism conceive of death?

Ziporyn: In the “Zhuangzi,” there is a story about death, and a special friendship formed by humans in the face of it. Four fellows declare to each other, “Who can see nothingness as his own head, life as his own spine, and death as his own backside? Who knows the single body formed by life and death, existence and nonexistence? I will be his friend!” We go from formlessness to form — this living human body — then again to formlessness. But all three phases constitute a single entity, ever transforming from one part to another, death to life to death. Our existence when alive is only one part of it, the middle bit; the nothingness or formlessness before and after our lives are part of the same indivisible whole. Attunement to this becomes here a basis for a peculiar intimacy and fellowship among humans while they are alive, since their seemingly definite forms are joined in this continuum of formlessness.

The next story in the “Zhuangzi” gives an even deeper description of this oneness and this intimacy. Three friends declare, “‘Who can be together in their very not being together, doing some­thing for one another by doing nothing for one another? Who can climb up upon the heavens, roaming on the mists, twisting and turning round and round without limit, living their lives in mutual forgetfulness, never coming to an end?’ The three of them looked at each other and burst out laughing, feeling complete concord, and thus did they become friends.”

Here there is no more mention of the “one body” shared by all — even the idea of a fixed oneness is gone. We have only limitless transformation. And the intimacy is now an wu-wei kind of intimacy, with no conscious awareness of a goal or object: They commune with each other by forgetting each other, just as they commune with the one indivisible body of transformation by forgetting all about it, and just transforming onward endlessly. Death itself is transformation, but life is also transformation, and the change from life to death and death to life is transformation too.

Yancy: Most of us fear death. The idea of the possible finality of death is frightening. How do we, according to Taoism, best address that fear?

Ziporyn: In that story about the four fellows, one of them suddenly falls ill and faces imminent death. He muses contentedly that after he dies he will continue to be transformed by whatever creates things, even as his body and mind break apart: His left arm perhaps into a rooster, his right arm perhaps into a crossbow pellet, his buttocks into a pair of wheels, his spirit into a horse. How marvelous that will be, he muses, announcing the dawn as a rooster, hunting down game as a pellet, riding along as a horse and carriage. Another friend then falls ill, and his pal praises the greatness of the process of transformation, wondering what he’ll be made into next — a mouse’s liver? A bug’s arm? The dying man says anywhere it sends him would be all right. He compares it to a great smelter. To be a human being for a while is like being metal that has been forged into a famous sword. To insist on only ever being a human in this great furnace of transformation is to be bad metal — good metal is the kind that can be malleable, broken apart and recombined with other things, shaped into anything.

I think the best summary of this attitude to death and life, and the joy in both, is from the same chapter in “Zhuangzi”:

This human form is just something we have stumbled into, but those who have become humans take delight in it nonetheless. Now the human form during its time undergoes ten thousand transformations, never stopping for an instant — so the joys it brings must be beyond calculation! Hence the sage uses it to roam and play in that from which nothing ever escapes, where all things are maintained. Early death, old age, the beginning, the end — this allows him to see each of them as good.

Every change brings its own form of joy, if, through wu-wei, we can free ourselves of the prejudices of our prior values and goals, and let every situation deliver to us its own new form as a new good. Zhuangzi calls it “hiding the world in the world”— roaming and playing and transforming in that from which nothing ever escapes.

Yancy: So, through wu-wei, on my death bed, I should celebrate as death isn’t an ending, but another beginning, another becoming? I also assume that there is no carry over of memory. In other words, in this life, I am a philosopher, male, etc. As I continue to become — a turtle, a part of Proxima Centauri, a tree branch — will I remember having been a philosopher, male?

Ziporyn: I think your assumption is correct about that: There is no expectation of memory, at least for these more radical Taoists like Zhuangzi. This is certainly connected with the general association of wu-wei with a sort of non-knowing. In fact in the climax of the same chapter as we find the death stories just mentioned, we find the virtue of “forgetting” extolled as the highest stage of Taoist cultivation — “a dropping away of my limbs and torso, a chasing off my sensory acuity, dispersing my physical form and ousting my understanding until I am the same as the Transforming Openness. This is what I call just sitting and forgetting.”

And the final death story there describes a certain Mr. Mengsun as having reached the perfect attitude toward life and death. He understands nothing about why he lives or dies. His existence consists only of waiting for the next unknown transformation. “[H]is physical form may meet with shocks but this causes no loss to his mind; what he experiences are morning wakings to ever new homes rather than the death of any previous realities.”

The freshness of the new transformation into ever new forms, and the ability to wholeheartedly embrace the new values that go with them, seems to require an ability to let go of the old completely. I think most of us will agree that such thorough forgetting is a pretty tall order! It seems that it may, ironically enough, require a lifetime of practice.

Yancy: Given the overwhelming political and existential global importance of race at this moment, do you have any reflections on your role as a white scholar of Taoism? In other words, are there racial or cultural issues that are salient for you as a non-Asian scholar of Eastern religious thought?

Brook Ziporyn: A very complex question, probably requiring a whole other interview! But my feeling is that, when dealing with ancient texts written in dead languages, the issue is more linguistic and cultural than racial. This goes for ancient Greek, Hebrew, Sanskrit and Latin texts as well as for ancient Chinese texts, all of which bear a complex historical relation to particular living communities and their languages, but all of which are also susceptible to fiercely contested interpretations both inside and outside those communities.

I think it’s a good thing for both Asian and non-Asian scholars to struggle to attain literacy in the textual inheritances of both the Asian and the non-Asian ancient worlds, which is “another country” to all of us, and to advance as many alternate coherent interpretations of them as possible. These interpretations will in all cases be very much conditioned by our particular current cultural situations, and these differences will certainly be reflected in the results — which is a good thing, I think, as long as we remain aware of it.

Writing about Taoism in English, one is speaking from and to an English-reading world. Doing so in modern Chinese, one is speaking from and to a modern-Chinese-reading world. Working crosswise in either language, as when a culturally native Anglophone like myself writes about Taoism in modern Chinese, or when a native Mandarin speaker writes in English about Taoism, or for that matter in either English or Chinese about ancient Greek philosophy or the Hebrew Bible, the situation will again differ, and the resulting discussion will reflect this as well.

In terms of the dangers of Orientalism, though, what I think must be especially guarded against is making any claim that whatever anyone may conclude about any particular ancient Chinese text can give any special insight into the politics, culture, or behavior of modern Chinese persons, communities or polities. The historical relations between modern and ancient cultural forms are simply too complex to think that the former can give one any right to claim any knowledge about the latter.

Complete Article HERE!

Death Doula: We Are Segregated, Even After We Die


Lupe Tejada-Diaz works as a death doula and helps communities of color through the holistic and legal aspects of death.

By Dylan Allswang

In the midst of the coronavirus pandemic, one of the major issues for our country is the disproportionate effect COVID-19 is having on communities of color. Both infection rates and death rates are much higher in these communities than in white communities. 

This is causing an increased need for healthcare, especially hospice care.

We talked to 24-year-old Lupe Tejada-Diaz who works in Washington state as an end-of-life care specialist and a death doula (a non-medical person trained to care for someone holistically at the end of life). She discussed why at such a young age she decided on this career, being an advocate for patients in hospitals especially during the pandemic and undoing the stigma around death as a taboo topic.

This interview was edited for clarity and length.

DYLAN ALLSWANG: Can you describe what the job of being a death doula entails for people who may not be familiar with that?

Lupe Tejada-Diaz: A death doula is somebody who handles the nonmedical aspect of dying. We counsel people through what they want their death to look like. We help them plan and — if they would like — on the day of their death. And after, we help their families deal with all the bureaucratic things that go into it.

DA: Who are some of your usual clients?

LTD: I work specifically with people of color, indigenous people, LGBTQ communities and low-income communities. I do a lot of community education. So I work at senior centers and community areas that ask me to come in and talk about accessible care options.

DA: This is a pretty unique career path. Why did you choose to be a death doula?

LTD: I saw a need in my community that wasn’t being met. In America, death is still really segregated. And a lot of people don’t think about when we [people of color] go into a white-owned funeral home, they don’t know how to do our hair; they don’t know how makeup works on our skin tone.

I wanted people to see that there are different options. Also that you don’t always have to pay hundreds of thousands of dollars to have a good death. When you die in America, you have to kind of undo the life you had. If you have debts, they need to be settled and sorted and your assets have to go through the system called the probate system.

In order to do that, you need to have all kinds of paperwork, different death certificates, different powers of attorney and it’s really difficult for families who are grieving to call 100 different companies and be like, “Oh yeah, so and so died.” So that’s where I come in and help do that kind of tough stuff for them because death in America is unfortunately a super long and arduous legal process.

DA: Communities of color are more likely to distrust medical institutions. How does that play into your line of work?

LTD: So in a lot of the American health care systems, people of color specifically aren’t treated the same way that their white counterparts are. They are kind of brushed aside. Their concerns are not addressed. 

I think that with the coronavirus, now more than ever, we are seeing that people of color are dying at disproportionate rates to white people. And the people working in death are also really tired because even in the middle of a pandemic, we still want to honor this wish that our cultures have.

I think that having someone who speaks the same language or looks like you or from the same kind of background, really helps you feel that sense of security that you normally wouldn’t get in hospitals or clinics. You feel like someone is on your side to kind of help you battle through that. So there’s more trust.

DA: How are you working with clients during the pandemic?

LTD: So we’re doing a lot of virtual communication, Zoom and FaceTime. But I’m also still doing a lot of the legal work I do. But unfortunately, the people that are taken into the hospital, I’m unable to be an advocate for them because it’s kind of out of our hands at this point. People are scared. People are worried that they’re not going to be able to have the traditional funeral burial services that they wanted their whole lives.

Specifically the Indigenous community, we have gone through epidemics and pandemics, not quite to this size, but the kind that wiped out our entire tribe and our entire society. So we have a sense of knowing that it will pass, but there is still that fear. We all just have to do our part to stop the spread and to be mindful of our neighbors as we possibly can be.

DA: Why do you think death is such a taboo topic?

LTD: I think that the main goal for a lot of death doulas is to spread awareness that it’s OK to talk about death. Talking about it isn’t going to bring death. There’s a lot of superstitions along those lines. And I just want everyone to know that it’s not necessarily something scary. It can be something beautiful.

We don’t have to rely on our doctors and hospitals to deal with death if it’s something that we can deal with at home. There’s a place for medicine and there’s a place for home care. And by marrying that together, I think it would really help the landscape of the American mentality for future generations.

Complete Article HERE!

How California doctors are fixing how we die

Doctors change life-ending drugs to ease the final hours

Dr. Lonny Shavelson

By

Modern medicine excels in ways to save a beating heart.

Yet hardly anything is known about how to humanely stop one.

Frustrated by the dearth of information about how to aid dying, Berkeley’s Dr. Lonny Shavelson is gathering data to guide other physicians through this new, important and sorrowful clinical frontier. Legalized in 2015, California’s End of Life Option Act allows doctors to prescribe life-ending drugs to terminally ill patients.

“We’re doing a medical procedure. And whatever is done in medicine should be done well, and consistently,” said Shavelson, 68, a UC San Francisco-educated former Emergency Room physician.

“Now we can tell patients: ‘We’re giving you the best protocol we have,’ ” said Shavelson, whose Bay Area End of Life Options medical practice has overseen 232 deaths. “And we’re getting better and better.”

When Californians passed the medical aid-in-dying law – inspired by Oakland’s Brittany Maynard, San Mateo’s Jennifer Glass and others who sought to end their suffering from cancer – voters assumed it promised them a neat Shakespearean-styled ending, like Romeo’s quick poisoning in Verona. That was the goal, but it didn’t always happen.

A little-known secret, not publicized by advocates of aid-in-dying, was that while most deaths were speedy, others were very slow. Some patients lingered for six or nine hours; a few, more than three days. No one knew why, or what needed to change.

“The public thinks that you take a pill and you’re done,” said Dr. Gary Pasternak, chief medical officer of Mission Hospice in San Mateo. “But it’s more complicated than that.”

So Shavelson, in collaboration with Washington-based retired anesthesiologist Dr. Carol Parrot, set out to compile data to help doctors help their patients. At a UC Berkeley-based conference last February, they co-founded the American Clinicians Academy on Medical Aid in Dying. The Academy’s 240 clinicians are now contributing and sharing their own experiences.

Dr. Lonny Shavelson, of Bay Area End of Life Options, looks over data at his home office in Berkeley, Calif., on Tuesday, Feb. 18, 2020. Shavelson is leading a data collection project to learn what medications most quickly and gently bring the person to their requested death under the 2016 End of Life Options Act.

To each deathbed, seated with grieving family members, Shavelson brings a clipboard with drug names and dosage levels.

As minutes tick by, he measures falling oxygen levels, slowing cardiac rhythms and fading respiration. He tracks outcomes while providing care.

The pharmacologic findings, shared with clinicians nationwide, are dramatically reducing the incidence of long, lingering and wrenching deaths.

“It’s really helpful to have someone actually studying the utility of what it is we’re doing,” said Pasternak. “So much of what we’re doing has arisen empirically. He’s collected such great data.”

“Patients want a medication that is effective. They want a swift, peaceful death,” he said.

Using the initial drug regimen in place when the law was passed, 34% of all patients took longer than two hours to die; one man died after 11 hours. A second regimen reduced that to 20%. With the current protocol, fewer than 10% of patients take longer than two hours to die, and most patients die in 1.1 hours, on average.

The protracted deaths didn’t create suffering for patients; they are in a deep coma. But the lengthy vigils can be agonizing for loved ones.

“After two hours, people were starting to get concerned, and restless,” Shavelson said. They wonder what’s happening. People start walking around the room, going into the kitchen. It disrupts the meditative mood. Between two and four hours – that’s not ideal. Anything over four hours we consider to be problematic.”

“I was looking at what was happening and thinking: ‘This isn’t as good as it’s been hyped up to be,’ ” he said.

There’s no repository of information to help doctors in states that have passed aid-in-dying laws, representing 22% of the U.S. population. The U.S. National Institutes of Health won’t fund the research. Medical schools don’t teach it. Hospitals don’t oversee it. Without that official support, medical journals won’t publish any findings.

Traditional medical research is conducted at universities and medical schools, “and they won’t touch the topic,” said Shavelson. “They’ve completely abrogated their responsibility to patients who are dying … bowing out of their traditional role of teaching, research and providing quality care. It’s taboo. There’s still a stigma.”

When aid-in-dying was first passed in Oregon in 1997, patients were given secobarbital, sold under the brand name Seconal. It induces deep sleep, then a coma that is so deep that the brain no longer drives respiration.

But that drug wasn’t consistently quick. Then it became prohibitively expensive, finally unavailable.

To replace Seconal, the doctors invented a three-drug cocktail — a painkiller, sedative and a heart-slowing agent — based on their experiences with overdose deaths. They later added another cardiac drug. But problems remained.

While sitting at the bedsides of several six-hour deaths, Shavelson pondered what was going wrong. He speculated that one cardiac drug was rendered ineffective by the large quantities of the other drugs. So he separated that out and gave it earlier, so it had time to act.

When some delays persisted, he replaced one of the heart-slowing drugs for a heart-damaging drug.

Based on newly compiled data from Academy clinicians, the formula is about to be improved again, pending confirmation of results.

Shavelson and Parrot have identified which patients are more likely to linger, and can recommend adjustments. People with gastrointestinal cancer, for example, don’t absorb the drugs as well. Former opiate users often have resistance to some of the drugs. Young people and athletes tend to have stronger hearts and can survive longer with low respiration rates.

“We’re learning. Hypothesis, data and confirmation. This is what science is,” he said. “Our job is to stop the heart; that’s what they want us to do.

“We haven’t made it less sad. It’s still death. There’s tears and crying,” he said. “But it’s a better ending.”

Complete Article HERE!

At 31, I have just weeks to live. Here’s what I want to pass on

Now that there’s no longer any way to treat my cancer, I’ve been reflecting on what I want others to know about life and death

‘I have come to see growing old as a privilege. Nobody should lament getting one year older, another grey hair or a wrinkle. Be pleased that you’ve made it.’

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At the beginning of April I wrote a piece for the Guardian. If you haven’t read it, the headline pretty much sums it up: “Terminal cancer means I won’t see the other side of lockdown”. Given the pandemic and the announcement of shielding for vulnerable people, I thought I wouldn’t be able to live out my last few months in the way I’d imagined. It seemed like I would be stuck alone, with no light at the end of the tunnel, and without the comfort of friends or family.

Five months on, I’m still here, but much has changed. Thankfully, the experience wasn’t as bleak as you might think. During the first few weeks of lockdown I found I was floating nicely through the time by staying occupied and upbeat. In many ways, you can’t beat the liberation of being able to wake up when you feel like it, having few plans set in stone and being able to do whatever you want with the time you have.

Over the past couple of months, though, my energy levels have dropped, and I have started doing less. I look drastically different. I have lost a lot of weight. A 20-minute coughing fit is now part of my morning routine while my chest tries to settle itself. It’s nothing that some steroids, morphine, an iced drink to settle my throat and time spent dry-heaving in front of a bucket won’t eventually sort out, but it can get really distressing – like an intrinsic panic response.

At points I was really struggling. The loneliness of Covid was making me miserable, and I needed company. But my sister came to the rescue at just the right moment. She moved back into our shared flat at the end of June. It made a huge difference, and I don’t know where I would be without her. After months of isolation, having a family member close by changed everything.

At the same time, out of the blue, I was told I was finally suitable for a drug trial that had been dangled in front of me for more than a year. The oncologists made it very clear that this would not be a “magic bullet”, and the goal would be to extend life by a few months. The aim of the treatment would be to stop the cancer stealing all the nutrients and energy my body needs.

But I was not in the same good shape I had been in at the beginning of other treatments; I was extremely short of breath, unable to exercise and felt lethargic. And after pinning my hopes on the idea of a drug trial for so long, it took just over a week for it to batter me. My days involved moving from my room to the sofa, feeling like I had flu and struggling with mental fog. Almost immediately I realised I just couldn’t do it. Life for me is about living, not just clocking up the years. And this drug made living almost impossible.

I realised I had to finally accept the inevitable: that there was no treatment. I thought this mindset would leave me feeling completely liberated. I was wrong. With nothing left to fight, it really was just a question of waiting. The battle became emotional and mental. It has forced me to reflect.

The first three decades of my life were pretty standard. Well, actually they were awesome, and everything was going pretty perfectly with regards to work, health, relationships and friends. I had plans for the future, too: learn some Spanish, see more of central America, and get a bit more out of it with some volunteering too.

Elliot with his sister at Lulworth Cove, Dorset.

I imagined settling down in my 30s or 40s with kids, a mortgage and so on. Or maybe I wouldn’t. Maybe my friends’ children would call me Uncle Elliot as their parents gathered in the kitchen looking slightly concerned about their single 45-year-old friend about to set off travelling around Mongolia. Either way, growing older with my mates and living my life to the full was always my ambition.

Of course, the second part of this storyline won’t be written now. It’s a shame I don’t get to see what happens. But everybody dies, and there will always be places and experiences missing from anyone’s life – the world has too much beauty and adventure for one person to see. I will miss marriage or children, blossoming careers and lives moving on. But I’m not alone in my life being cut short, and I think my time has been pretty good.

At this point I should say a word to my friends. Being this ill complicates all relationships. The rut I found myself in a few weeks back hasn’t lifted. I’ve definitely been “feeling the victim” a lot more than usual. My acceptance that my time and energy is now limited comes with the knowledge that I won’t be able to catch you all properly to give our relationships the time and appreciation they deserve. I get so many messages from you all, which often exceed the energy I have to reply. Where I am able to see people, I’d just say keeping me company and being positive is helpful. I want fun, laughter, happiness, joy. I think it’s very possible to have this kind of death – there is likely to be a shadow of sadness hanging over proceedings, but for the most part I want everyone relaxed and to be able to feel the love.

Because I know that that moment isn’t too far away. I haven’t asked for a specific prognosis, as I don’t believe there’s much to gain from doing so, but I think it’s a matter of weeks. Medicine has luckily turned this into quite a gentle process. That really does take a lot of the fear away. And I’m hoping impending death now grants me the licence to sound prematurely wise and overly grandiose. Because I’ve had time to think about the things that are really important to me, and I want to share what I’ve discovered.

First, the importance of gratitude. During my worst moments – the shock of cancer diagnosis, the mental lows and debilitating symptoms of chemotherapy – it was difficult to picture any future moments of joy, closeness or love. Even so, at those times I found comfort in remembering what I have: an amazing family, the friends I’ve made and times I’ve shared with them, the privilege of the life I’ve had.

Second, a life, if lived well, is long enough. This can mean different things to different people. It might mean travel. I’ve had the good fortune to be able do this, and can confirm that the world is a wonderful place full of moments of awe and amazement – soak up as much as you can. It may mean staying active, as much as possible – the human body is a wonderful thing. You only appreciate this when it starts to fail you. So when you find yourself slipping into autopilot, catch yourself, and take simple pleasure in movement, if you can. Look after your body because it’s the only one you have, and it’s bloody brilliant. Knowing that my life was going to be cut short has also changed my perspective on ageing. Most people assume they will live into old age. I have come to see growing old as a privilege. Nobody should lament getting one year older, another grey hair or a wrinkle. Instead, be pleased that you’ve made it. If you feel like you haven’t made the most of your last year, try to use your next one better.

Third, it’s important to let yourself be vulnerable and connect to others. We live in a society that prizes capability and independence, two things that cancer often slowly strips away from you. This was naturally a very difficult pill to swallow for a healthy, able late-twentysomething male, but having to allow myself to be vulnerable and accept help has given me the best two years of my life, which was pretty inconceivable at the time of diagnosis. Vulnerability has shown me what phenomenal people my sister and parents are – words can’t do justice to how much they have done for me. The same applies to my friends – what better way is there to spend two years than being surrounded regularly and closely by these people?

Fourth, do something for others. Against the backdrop of Covid-19, Black Lives Matter and the desperate attempts of migrants to cross the Channel, my thoughts really turned to those who have not had my privilege – whether that’s by virtue of socioeconomics, ethnicity or the country I was born in. I always try to remind myself of this.
Fifth, protect the planet – I can’t leave this off because it’s so important. I’ll be gone soon, but humanity will still be faced with the huge challenge of reducing carbon emissions and saving habitats from destruction. In my time here, I’ve been lucky enough to see some natural wonders and understand how precious they are. Hopefully future generations will be able to say the same. But it will take a massive collective effort.

If you asked me what I’d want to leave behind, it would be a new awareness of these things among my friends – and anyone who’ll listen, really. I was astonished by the number of people that responded to my article in April. I now find myself in a position where people are asking me how they can help or what they can do that would make me happy. Apart from the obvious – looking after each other once I’ve gone – I’m going to push for people to give, be that money or time. I’ve already had so many people ask which causes I recommend, and there are loads, but I’d say any that align with the values I’ve sketched out above would have my blessing. Among friends and family there is talk of setting up a small charity in my memory.

Despite some very low times, it’s worth repeating that the period since being diagnosed has been made not just bearable but actually fantastic. I’ve had new experiences that haven’t seemed tainted by cancer – and those experiences were, as always, much better shared. In a situation that is pretty new for most of my loved ones and friends (I am yet to meet anyone I grew up with who has had to deal with cancer or a similar chronic illness at my age), it has been amazing watching them all rise to the challenge. I’m not sure if it’s just that I know a high proportion of amazing people (possible) or if most human beings have this capacity for connecting and recognising what’s truly important (very likely).

After the gut-punch of cancer diagnosis, I’ve really struggled to define a purpose for my own life. I found in time this came naturally. Life is for enjoyment. Make of it what you can.

Complete Article HERE!

Relearning how to die

By Richard Smith

Kevin Toolis, author of the beautiful My Father’s Wake, would agree with the surgeon Atul Gawande that we have forgotten how to die. Toolis’s core argument is that his forebears on an Atlantic-lashed island off the west coast of Ireland had a familiarity with death that meant that they knew how to die. Unfortunately, what he calls the Western Death Machine has destroyed that familiarity, leaving us with an existential dread of our inevitable mortality. But he ends the book with a call for rediscovery of how to die, although recognising that “It’s harder than you think to break away from the blinding of the Western Death Machine. In fact, it’s the work of a lifetime.”

The book is constructed around the death, wake, funeral, and burial of Sonny, Toolis’s father, an ordinary but much loved man who had 300 people at his funeral. (As I read that, I thought of funerals I’ve attended with just one or two people and of David Bowie being whisked off without any funeral.) Sonny, who had spent much of his life away from Dookinella, the village where he was born, returned there to die. The dying and those who care for them are not alone: family, friends, villagers, and children are there.

Toolis describes standing beside his unconscious dying father: “We were becalmed. Waiting for his heart to stop, the wake, his funeral, the church, the grave. Waiting for the death of this very ordinary man. Waiting, I thought, to start again. Resume Life. As it turned out, nothing else I have ever done or will do was more important than those precious days.”

Those days were precious because Sonny retaught Toolis how to die. Toolis had experienced the horrors of the Western Death Machine when his brother died young of leukaemia. He could make no sense of that death and launched into a desperate attempt to make sense of death by, as a journalist and filmmaker, interviewing families in Northern Ireland and Palestine whose family members had been killed by terrorists or the Israeli army or whose children had blown themselves up. These experiences produced powerful reports and films but no equanimity with death.

Sonny’s death and wake merged into each other. Given the last rites he died, and his sister and daughters washed the body and prepared him for his coffin. They washed the body of their father as the mother and wife of Hector washed his body after he was killed by Achilles; throughout the book Toolis draws parallels with the Iliad, emphasising how what is happening in rural Ireland has been happening across the world for thousands of years. There was no question of Sonny being spirited away to a funeral home. 

With Sonny dressed and in his open coffin the wake could get into full swing. It would last until he would be carried to the church and then up the mountainside to his grave, two days and a night. Sometimes wakes would last longer if family had to return from abroad. Everybody is welcome at the wake. Toolis didn’t recognise many of those who came. Children play around the coffin. Everybody touches the corpse, and most kiss him. Food and drink are served. People talk about farming, the price of sheep, the weather, but they also tell stories. Death often features in the stories. Toolis hears one young man tell the story of working in a rich home in Essex and finding the owner having hanged himself.

An elderly woman tells the story of having to bury her stillborn child in the unconsecrated ground reserved for suicides and the stillborn. “Sonny’s corpse, his touchable deadness,” writes Toolis, “had made it harder to deceive ourselves of the shiny lies of daylight. So for a few hours, at least, we were free of the constraints of our daily dissembling….In those close watching hours upon the corpse a portal had opened, too, amongst the living, and we spoke without fear on the nature of what each had seen and felt on the shores of life and death.”

Perhaps the most surprising line in the book is a teenager saying to other teenagers after they have left a dance at 3 in the morning: “Shall we go back to the wake for the craic?” Many people outside Ireland are now familiar with the Gaelic word craic, which Wikipedia defines as “a term for news, gossip, fun, entertainment, and enjoyable conversation.” It’s unthinkable that teenagers in London would go to a room with a corpse for fun. It would be thought indecent. But at the wake the teenagers play “the ring,” one of the wake games (which were also played in the Iliad), which are a mixture of violence, kissing, and “libidinous foreplay.” 

Death, as Toolis observes, can be a great aphrodisiac: “The coldness of a corpse has its own perverse existential aphrodisiac; nothing so encourages the animal within us, the hunger for sexual consummation, the need of the comfort of another warm body, than death’s present denial. We affirm ourselves in heat and flesh.” A central argument in the book is that by learning how to die we also learn how to live and love.

Once the wake is over, Sonny is carried to the church and then up the mountain to the grave that has been dug by local people. Toolis carries the coffin, along with his sisters (a development in the tradition). “The carrying of the dead, into and from the church altar and onto the grave, rests on the shoulders of their kin, hopefully their sons. To be carried by those of your own house to your grave is an ancient tribal blessing—a life and death hope, that you will multiply and prosper, bear children, die amidst your family, your community, and still be loved at the end of days. To carry the weight of your own dead, to link arm to shoulder with your brother pall bearer, whoever that might be, shuffling forward in three sets of pairs, in sight of the congregation, is another communal rite of the wake, another fusion of the individual within the wider community.”

There is nothing romantic or sentimental in Toolis’s account of his father’s death, wake, funeral, and burial, but already these traditional customs are disappearing in Ireland and are unknown in the big cities. Can they ever come again? Toolis ends his powerful book with a chapter on how to defeat the Western Death Machine and this challenge:

“You cannot step twice into the same river, ever newer waters flow around and beneath your feet. And we cannot all go back to the island, listen daily to the cowboy songs and the ‘deaths’ on the radio, and live on and die in the last full gatherings of this ancient Celtic rite. But we can carry much of the Irish Wake with us in our hearts. A rite that survived the fall of Troy and a thousand generations before the rise of the Western Death Machine can easily survive the retransplantation back to our cities of glass and concrete. We need to find our way again with death. To be human is to be mortal, and to be mortal is to love, live and die amidst the lives of everyone around you on the island or in the city. And to embrace rather than deny our mortal fate.”

Complete Article HERE!