Category: Death Education

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What I Learned About Death From 7 Religious Scholars, 1 Atheist and My Father

By George Yancy

Just a few days before my father died in 2014, I asked him a question some might find insensitive or inappropriate:

“So, what are your thoughts now about dying?”

We were in the hospital. My father had not spoken much at all that day. He was under the influence of painkillers and had begun the active stage of dying.

He mustered all of his energy to give me his answer. “It’s too complex,” he said.

They were his final spoken words to me before he died. I had anticipated something more pensive, something more drawn-out. But they were consistent with our mutual grappling with the meaning of death. Until the very end, he spoke with honesty, courage and wisdom.

I have known many who have taken the mystery out of death through a kind of sociological matter-of-factness: “We all will die at some point. Tell me something I don’t know.” I suspect that many of these same people have also taken the mystery out of being alive, out of the fact that we exist: “But of course I exist; I’m right here, aren’t I?”

Confronting the reality of death and trying to understand its uncanny nature is part of what I do as a philosopher and as a human being. My father, while not a professional philosopher, loved wisdom and had the gift of gab. Our many conversations over the years touched on the existence of God, the meaning of love and, yes, the fact of death.

In retrospect, my father and I refused to allow death to have the final word without first, metaphorically, staring it in the face. We were both rebelling against the ways in which so many hide from facing the fact that consciousness, as we know it, will stop — poof!

We know the fact of death is inescapable, and it has been especially so for the nearly two-year pandemic. As we begin another year, I am astonished again and again to realize that more than 800,000 irreplaceable people have died from Covid-19 in the United States; worldwide, the number is over five million. When we hear about those numbers, it is important that we become attuned to actual deaths, the cessation of millions of consciousnesses, stopped just like that. This is not just about how people have died but also that they have died.

My father and I, like the philosopher Soren Kierkegaard, came to view death as “by no means something in general.” We understood that death is about me, him and you. But what we in fact were learning about was dying, not death. Dying is a process; we get to count the days, but for me to die, there is no conscious self who recognizes that I’m gone or that I was even here. So, yes, death, as my father put it, is too complex.

It was in February of 2020 that I wrote the introduction to a series of interviews that I would subsequently conduct for The Times’s philosophy series The Stone, called Conversations on Death, with religious scholars from a variety of faiths. While my initial aim had little to do with grappling with the deaths caused by Covid-19 (like most, I had no idea just how devastating the virus would be), it soon became hard to ignore. As the interviews appeared, I heard from readers who said that reading them helped them cope with their losses during the pandemic. I would like to think that it was partly the probing of the meaning of death, the refusal to look away, that was helpful. What had begun as a philosophical inquiry became a balm for some.

While each scholar articulated a different interpretation of what happens after we die, it was not long before our conversations on death turned to matters of life, on the importance of what we do on this side of the grave. Death is loss, each scholar seemed to say, but it also illuminates and transforms life and serves as a guide for the living.

The Buddhist scholar Dadul Namgyal stressed the importance of letting go of habits of self-obsession and attitudes of self-importance. Moulie Vidas, a scholar of Judaism, placed more emphasis on Judaism’s intellectual and spiritual energy. Karen Teel, a Roman Catholic, emphasized her interest in working toward making our world more just. The Jainism scholar Pankaj Jain underscored that it is on this side of the veil of death that one attempts to completely purify the soul through absolute nonviolence. Brook Ziporyn, a scholar of Taoism, stressed the importance of embracing this life as constant change, being able to let go, of allowing, as he says, every new situation to “deliver to us its own new form as a new good.” Leor Halevi, a historian of Islam, told me that an imam would stress the importance of paying debts, giving to charity and prayer. And Jacob Kehinde Olupona, a scholar of the Yoruba religion, explained that “humans are enjoined to do well in life so that when death eventually comes, one can be remembered for one’s good deeds.” The atheist philosopher Todd May placed importance on seeking to live our lives along two paths simultaneously — both looking forward and living fully in the present.

The sheer variety of these religious insights raised the possibility that there are no absolute answers — the questions are “too complex”— and that life, as William Shakespeare’s Macbeth says, is “a tale told by an idiot, full of sound and fury, signifying nothing.” Yet there is so much to learn, paradoxically, about what is unknowable.

Perhaps we should think of death in terms of the parable of the blind men and the elephant. Just as the blind men who come to know the elephant by touching only certain parts of it, our views of death, religious or not, are limited, marked by context, culture, explicit and implicit metaphysical sensibilities, values and vocabularies. The elephant evades full description. But with death, there doesn’t seem to be anything to touch. There is just the fact that we die.

Yet as human beings, we yearn to make sense of that about which we may not be able to capture in full. In this case, perhaps each religious worldview touches something or is touched by something beyond the grave, something that is beyond our descriptive limits.

Perhaps, for me, it is just too hard to let go, and so I refuse to accept that there is nothing after death. This attachment, which can function as a form of refusal, is familiar to all of us. The recent death of my dear friend bell hooks painfully demonstrates this. Why would I want to let go of our wonderful and caring relationship and our stimulating and witty conversations? I’m reminded, though, that my father’s last words regarding the meaning of death being too complex leave me facing a beautiful question mark.

My father was also a lover of Kahlil Gibran’s “The Prophet.” He would quote sections from it verbatim. I wasn’t there when my father stopped breathing, but I wish that I could have spoken these lines by Gibran as he left us: “And what is it to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?”

In this past year of profound loss and grief, it is hard to find comfort. No matter how many philosophers or theologians seek the answers, the meaning of death remains a mystery. And yet silence in the face of this mystery is not an option for me, as it wasn’t for my father, perhaps because we know that, while we may find solace in our rituals, it is also in the seeking that we must persist.

Complete Article ↪HERE↩!

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At peace: Positive attitudes about death improve end-of-life care

Changing the way we think and talk about death could improve end-of-life health care. Recent research suggests encouraging people to view death differently, as a positive and natural part of life, it could help them make better decisions as they prepare for what is inevitably to come.

For many people, especially if someone has recently experienced loss, giving up the ghost is one of the most taboo topics. This is indicated in the words people choose to use when describing their feelings and insights into death or dying, researchers say. People who are not comfortable with the topic are more likely to choose emotional words such as “fear or scary,” whereas those who are more ready to meet their maker will use terms like “inevitable or natural.”

“In an aging population, when our elders and terminally ill are often cared for by health professionals in residential care rather than in the home, we can go through life without really discussing or witnessing the end of life. Tackling and changing these perspectives will help the community to plan for and manage future needs and expectations of care at end-of-life, and improve patient and family care, including greater preparedness for death. This can also help develop future health services,” says Dr. Lauren Miller-Lewis, study lead author of Flinders University in Australia, in a statement.

In a recent study, researchers surveyed 1,491 people to determine what language they used to describe their feelings when it came to dying. Participants were then enrolled in a six-week open online course dubbed Dying2Learn. The course, which ran from 2016 to 2018 and in 2020, encouraged people to have open conversations about death and dying.

The language participants used when discussing death before and after the course was analyzed using automated sentiment analysis. By the end of the course, participants were able to use more pleasant, calmer and in-control words to express themselves on the topic, researchers say.

“Words aren’t neutral, so understanding the emotional connotations tied to words we use could help guide palliative care conversations,” says Dr. Miller-Lewis. Younger participants showed the greatest increase in positive vocabulary, including pleasantness and dominance over the topic.

“It shows how the general public can gain an acceptance of death as a natural part of life by learning how to openly discuss and address these feelings and attitudes,” adds co-author Dr. Trent Lewis.

Differences in how participants talked about death with others rather than just explaining their own feelings were also observed by the researchers. When talking about someone else’s loss, participants were more likely to use words such as “sad,” “fear,” scary and loss. However, when it was about themselves they employed less emotionally negative words like “inevitable,” “peace,” and “natural.”

“The assumption was that others feel more negatively about death than they do themselves. This could impact on our willingness to start conversations about death with others,” says Dr. Lewis. “Do we avoid it because we think others will get upset if we bring it up, and does this then leave important things unsaid?“

The findings are published in the journal PLOS One.

Complete Article ↪HERE↩!

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A Neuroscientist Prepares for Death

Lessons my terminal cancer has taught me about the mind

By David J. Linden

When a routine echocardiogram revealed a large mass next to my heart, the radiologist thought it might be a hiatal hernia—a portion of my stomach poking up through my diaphragm to press against the sac containing my heart.

“Chug this can of Diet Dr. Pepper and then hop up on the table for another echocardiogram before the soda bubbles in your stomach all pop.”

So I did. However, the resulting images showed that the mass did not contain the telltale signature of bursting bubbles in my stomach that would support a hernia diagnosis. A few weeks later, an MRI scan, which has much better resolution, revealed that the mass was actually contained within the pericardial sac and was quite large—about the volume of that soda can. Even with this large invader pressing on my heart, I had no symptoms and could exercise at full capacity. I felt great.

The doctors told me that the mass was most likely to be a teratoma, a clump of cells that is not typically malignant. Their outlook was sunny. Riffing on the musical South Pacific, my cardiologist said, “We’re gonna pop that orange right out of your chest and send you on your way.”

While I was recovering from surgery, the pathology report came back and the news was bad—it wasn’t a benign teratoma after all, but rather a malignant cancer called synovial sarcoma. Because of its location, embedded in my heart wall, the surgeon could not remove all of the cancer cells. Doing so would have rendered my heart unable to pump blood. The oncologist told me to expect to live an additional six to 18 months.

I was absolutely white-hot angry at the universe. Heart cancer? Who the hell gets heart cancer?! Is this some kind of horrible metaphor? This is what’s going to take me away from my beloved family, my cherished friends and colleagues? I simply couldn’t accept it. I was so mad, I could barely see.

[And now comes the part where I’m weeping while I type.]

Five years ago, I met Dena and we fell for each other hard. This wasn’t mere “chemistry”; it was more akin to particle physics—a revelation of the subatomic properties of love. Dena has uplifted me with her pure and unconditional affection, her kindness, beauty, optimism, and keen intelligence. She is the best wife anyone could want, and she is way better than I deserve. Leaving her behind will be the very hardest part of this whole awful situation.

Until the moment of that diagnosis six months ago, I had been the luckiest man in town. My twins, Jacob and Natalie, have been nothing but a delight for 25 years. I’ve been fortunate to have a long career in academic science with the freedom to pursue my own ideas, which is a gift like no other. My good friends are a constant source of joy and amusement. By any reasonable measure, I’ve had a great life, full of love, creativity, and adventure.

I may be dying, but I’m still a science nerd, and so I think about what preparing for death has taught me about the human mind. The first thing, which is obvious to most people but had to be brought home forcefully for me, is that it is possible, even easy, to occupy two seemingly contradictory mental states at the same time. I’m simultaneously furious at my terminal cancer and deeply grateful for all that life has given me. This runs counter to an old idea in neuroscience that we occupy one mental state at a time: We are either curious or fearful—we either “fight or flee” or “rest and digest” based on some overall modulation of the nervous system. But our human brains are more nuanced than that, and so we can easily inhabit multiple complex, even contradictory, cognitive and emotional states.

This leads me to a second insight: The deep truth of being human is that there is no objective experience. Our brains are not built to measure the absolute value of anything. All that we perceive and feel is colored by expectation, comparison, and circumstance. There is no pure sensation, only inference based on sensation. Thirty minutes fly by in a conversation with a good friend, but seem interminable when waiting in line at the DMV. That fat raise you got at work seems nice until you learn that your co-worker got one twice as large as yours. A caress from your sweetheart during a loving, connected time feels warm and delightful, but the very same touch delivered during the middle of a heated argument feels annoying and presumptuous, bordering on violation.

If someone had told me one year ago, when I was 59, that I had five years left to live, I would have been devastated and felt cheated by fate. Now the prospect of five more years strikes me as an impossible gift. With five more years, I could spend good times with all of my people, get some important work done, and still be able to travel and savor life’s sweetness. The point is that, in our minds, there is no such thing as objective value, even for something as fundamental as five years of life.

The final insight of my situation is more subtle, but it’s also the most important. Although I can prepare for death in all sorts of practical ways—getting my financial affairs in order, updating my will, writing reference letters to support the trainees in my lab after I’m gone—I cannot imagine the totality of my death, or the world without me in it, in any deep or meaningful way. My mind skitters across the surface of my impending death without truly engaging. I don’t think this is a personal failing. Rather, it’s a simple result of having a human brain.

The field of neuroscience has changed significantly in the 43 years since I joined it. I was taught that the brain is essentially reactive: Stimuli impinge on the sense organs (eyes, ears, skin, etc.), these signals are conveyed to the brain, a bit of computation happens, some neural decisions are made, and then impulses are sent along nerves to muscles, which contract or relax to produce behavior in the form of movement or speech. Now we know that rather than merely reacting to the external world, the brain spends much of its time and energy actively making predictions about the future—mostly the next few moments. Will that baseball flying through the air hit my head? Am I likely to become hungry soon? Is that approaching stranger a friend or a foe? These predictions are deeply rooted, automatic, and subconscious. They can’t be turned off through mere force of will.

And because our brains are organized to predict the near future, it presupposes that there will, in fact, be a near future. In this way, our brains are hardwired to prevent us from imagining the totality of death.

If I am allowed to speculate—and I hold that a dying person should be given such dispensation—I would contend that this basic cognitive limitation is not reserved for those of us who are preparing for imminent death, but rather is a widespread glitch that has profound implications for the cross-cultural practice of religious thought. Nearly every religion has the concept of an afterlife (or its cognitive cousin, reincarnation). Why are afterlife/reincarnation stories found all over the world? For the same reason we can’t truly imagine our own deaths: because our brains are built on the faulty premise that there will always be that next moment to predict. We cannot help but imagine that our own consciousness endures.

While not every faith has explicit afterlife/reincarnation stories (Judaism is a notable exception), most of the world’s major religions do, including Islam, Sikhism, Christianity, Daoism, Hinduism, and arguably, even Buddhism. Indeed, much religious thought takes the form of a bargain: Follow these rules in life, and you will be rewarded in the afterlife or with a favorable form of reincarnation or by melding with the divine. What would the world’s religions be like if our brains were not organized to imagine that consciousness endures? And how would this have changed our human cultures, which have been so strongly molded by religions and the conflicts between them?

While I ponder these questions, I am also mulling my own situation. I am not a person of faith, but as I prepare for death, I have a renewed respect for the persistent and broad appeal of afterlife/reincarnation stories and their ultimately neurobiological roots. I’m not sure whether, in the end, faith in afterlife/reincarnation stories is a feature or a bug of human cognition, but if it’s a bug, it’s one for which I have sympathy. After all, how wonderfully strange would it be to return as a manatee or a tapeworm? And what a special delight it would be to see Dena and my children again after I’m gone.

Complete Article ↪HERE↩!

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How your brain copes with grief, and why it takes time to heal

Grief is tied to all sorts of different brain functions, says researcher and author Mary-Frances O’Connor. That can range from being able to recall memories to taking the perspective of another person, to even things like regulating our heart rate and the experience of pain and suffering.

by Berly McCoy

Holidays are never quite the same after someone we love dies. Even small aspects of a birthday or a Christmas celebration — an empty seat at the dinner table, one less gift to buy or make — can serve as jarring reminders of how our lives have been forever changed. Although these realizations are hard to face, clinical psychologist Mary-Frances O’Connor says we shouldn’t avoid them or try to hide our feelings.

“Grief is a universal experience,” she notes, “and when we can connect, it is better.”

O’Connor, an associate professor of psychology at the University of Arizona, studies what happens in our brains when we experience grief. She says grieving is a form of learning — one that teaches us how to be in the world without someone we love in it. “The background is running all the time for people who are grieving, thinking about new habits and how they interact now.”

Adjusting to the fact that we’ll never again spend time with our loved ones can be painful. It takes time — and involves changes in the brain. “What we see in science is, if you have a grief experience and you have support so that you have a little bit of time to learn, and confidence from the people around you, that you will in fact adapt.”

O’Connor’s upcoming book, The Grieving Brain, explores what scientists know about how our minds grapple with the loss of a loved one.

Interview highlights

On the grieving process

When we have the experience of being in a relationship, the sense of who we are is bound up with that other person. The word sibling, the word spouse implies two people. And so when the other person is gone, we suddenly have to learn a totally new set of rules to operate in the world. The “we” is as important as the “you” and “me,” and the brain, interestingly, really does encode it that way. So when people say “I feel like I’ve lost part of myself,” that is for a good reason. The brain also feels that way, as it were, and codes the “we” as much as the “you” and the “I.”

On the difference between grief and grieving

Grief is that emotional state that just knocks you off your feet and comes over you like a wave. Grieving necessarily has a time component to it. Grieving is what happens as we adapt to the fact that our loved one is gone, that we’re carrying the absence of them with us. And the reason that this distinction makes sense is, grief is a natural response to loss — so we’ll feel grief forever. A woman who lost her mother as a young person is going to experience that grief on her wedding day because it’s a new moment where she’s having a response to loss.

But “grieving” means that our relationship to that grief changes over time. So the first time, maybe even the first 100 times, you’re knocked off your feet with grief, it feels terrible and awful and unfamiliar. But maybe the 101st time, you think to yourself, “I hate this, I don’t want this to be true. But I do recognize it, and I do know that I will get through the wave.”

On the emotions involved in grieving

The range of emotions that someone experiences when they’re grieving is as long a list as the range of emotions we have in any relationship. Commonly there’s panic, there’s anxiety, there’s sadness, there’s yearning. But what we sometimes forget is that there’s also difficulty concentrating and confusion about what happens next.

I am often struck by the intensity of the emotions. Grief is like someone turned up the volume dial all of a sudden. The emotion that I think often interferes with our relationships and friendships when we’re grieving is anger, because the anger feels so intense. You have someone blow up at a dinner party and you think, “What’s happening with them?” And then to try and remember, “Oh, they’re grieving and everything is amped up a little bit.”

On what is happening in our brains

We have neuroimaging studies basically of grief, of the momentary reaction where you have that emotional yearning experience. There are less than a handful of studies looking at more than one moment in the same person across time — so looking at their grieving trajectory. What we know right now in these early days of the neurobiology of grief is really coming from snapshots.

Having said that, one of the things that we know is that grief is tied to all sorts of different brain functions we have, from being able to recall memories to taking the perspective of another person, to even things like regulating our heart rate and the experience of pain and suffering. So lots of different parts of the brain are orchestrating this experience that we have when we feel grief.

On prolonged grief

When you’re knocked over by that wave of grief, you want to know, “When will this end?” From a research perspective, there is a very small proportion of people who might have what we now call prolonged grief disorder, something we start looking for after six months or a year [after a death or loss]. … And what we are seeing, [in such cases], is that this person has not been able to function day to day the way that they wish that they could. They’re not getting out the door to work or getting dinner on the table for their kids or they’re not able to, say, listen to music because it’s just too upsetting. So these types of concerns … suggest it would be helpful to intervene and get them back on the healing trajectory where they will still feel grief, but they will adapt to it differently.

The older term that we were using for a long time was “complicated grief.” And although prolonged grief disorder is the term we’ve settled on, there’s a reason that I like the term complicated — because it makes you think of complications.

As an example, one of those is the grief-related rumination that people sometimes experience. The better term for that that people will recognize is the “would’ve, should’ve, could’ve” thoughts. And they just roll through your head over and over again. The problem with these thoughts — we sometimes call “counterfactuals” — is that they all end in this virtual scenario where the person doesn’t die. And that’s just not reality. And so, by spinning in these thoughts, not only is there no answer — there are an infinite number of possibilities with no actual answer of what would have happened — but it also isn’t necessarily helping us to adapt to the painful reality that they did die. And so our virtual version is not really helping us to learn how to be in the world now.

It’s less than 10% of people who experience prolonged grief disorder. And what that means is 90% of people experience difficult grief and suffering, but don’t have a disorder after losing a loved one. I think it’s so important to remember that … because we don’t want to hide grief away … in a psychiatrist’s office or a counselor’s office, except in indications where that would be helpful to get people back on track.

On how to support grieving people in your life

I think when you care for someone who is going through this terrible process of losing someone, it really is more about listening to them and seeing where they’re at in their learning than it is about trying to make them feel better. The point is not to cheer them up. The point is to be with them and let them know that you will be with them and that you can imagine a future for them where they’re not constantly being knocked over by the waves of grief.

On losing people to the pandemic

One of the topics I think is not much in the national conversation is that so many of the deaths of our loved ones happened in hospitals, emergency rooms and ICUs — and we weren’t there to see it. And that is for a very good reason, because we were trying to stop the spread of COVID. So having family members in hospitals did not make sense.

But it means that people are without these memories of watching their loved one become more ill and watching those changes that happen in their body that prepare our mind for the possibility that they might die. To go through that process without those memories makes it much harder to learn what has happened. So many people feel it hasn’t really sunk in yet that they’re gone.

What I don’t hear very often is the fact that with COVID, the loved ones that are left behind made the sacrifice of not being with their loved ones in the hospital in order to stop the spread. And that sacrifice needs to be recognized, I think. In part to help people heal, so that it’s understood why they’re having such a difficult time. And to elevate the understanding that they did something for the greater good — and they gave up something while they did it.

Complete Article ↪HERE↩!

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ePOLST Registries: Moving into the Digital Age

Providers should be aware of and be involved in the conversation about these upcoming registries as they will interact with them frequently.

The upper half of the California POLST.

By ,

You arrive on scene to a call of a 72-year-old woman with metastatic lung cancer who has difficulty breathing at her nursing facility. The woman is unresponsive and thready pulses become difficult to palpate. The nursing facility staff is unable to locate any paper POLST forms. What are your next steps?

The POLST program – Physician Orders for Life-Sustaining treatment – was developed by medical ethicists in Oregon in 1991 as a tool to help honor patients’ wishes for end-of-life treatment.1 Today, all 50 states and Washington, DC, have existing POLST programs with varying functional capacities and names for the actual form (i.e. Medical Order for Life Sustaining Treatment (MOLST), Physician Order for Scope of Treatment (POST) etc.). POLST forms are most useful for people who are medically frail or seriously ill from chronic, progressive health conditions. They contain important, actionable medical orders that are portable for use across health settings – such as emergency medical services (EMS), emergency departments and long-term care facilities.

Several studies have demonstrated the efficacy of POLST forms over the years. POLST forms have been shown to have significant advantages over traditional methods to communicate preferences regarding life-sustaining treatments,2 and their use has been shown to result in a very high percentage of patients receiving care consistent with their prior expressed wishes.3 However, their use is not without barriers. One key barrier can be their inaccessibility. The form, if not readily available to health care providers, isn’t helpful in time-critical situations. A 2004 survey of Oregon EMTs showed a quarter of respondents stated that they were unable to successfully find a POLST in a timely manner the last time they had expected to do so.4 In 2009, Oregon legislation introduced an electronic POLST registry. This was to address EMS challenges in accessing or locating original POLST orders when they arrived on the scene of a medical emergency. By 2015-2016, nearly half of all deaths in Oregon had an active form in their electronic registry.5 As of 2020, the Oregon Registry has almost half a million POLST forms.6

California’s Assembly Bill No. 1234 was introduced by Assembly Member Arambula (D-Fresno) in February 2021 and would require the California Health and Human Services Agency to establish a statewide electronic POLST registry system.7 It is being backed by the Coalition for Compassionate Care of California (CCCC) and Arambula, himself, is a prior emergency physician. In addition to creation of a statewide registry, the bill lays out a timeline for its implementation (2024-2026), ensures that an electronic POLST (ePOLST) would have the same legal standing as a paper form, and that electronic signatures could be used.

As of 2020, at least 10 states have started development of or already created statewide registries.8 Some registries have capability for electronic form completion, some function simply as databases, and others have a hybrid system. Input from pilot studies that have been performed in San Diego and Contra Costa County along with experiences with ePOLST registries from other states are helping shape what California’s statewide registry will eventually look like.

The current progress of POLST state registries as of April 2021.
The current progress of POLST state registries as of April 2021.

ePOLST registries have several advantages over the traditional POLST. The main advantage being their universal accessibility by healthcare providers and patients. Other potential advantages include the ability to provide educational material to patients at time of form completion, development of mechanisms to prevent incomplete or incongruent (i.e. Full Code + Do Not Intubate) form submissions,9 and remote signing. However, there are several potential pitfalls to be mindful of – such as assuring the repositories are HIPPA-compliant, easily searchable, interface with local health information exchanges, and have back-up mechanisms for access (i.e. call center) in case of technology failure.

EMS will be at the forefront of interfacing with these registries and as such should be involved in the conversation regarding their development. Properly developed and implemented, a state-wide ePOLST has the opportunity to improve EMS and emergency departments provider POLST access difficulties, facilitate accurate POLST completion, and improve our ability to provide patient’s with the care they want near the end-of-life.

References

  1. National POLST: History [Internet]. Washington DC: National POLST; c2017-2021. [cited 2021, Nov 3]. Available from: https://polst.org/history/
  2. Hickman SE, Nelson CA, Perrin NA, Moss AH, Hammes BJ, Tolle SW. A comparison of methods to communicate treatment preferences in nursing facilities: traditional practices versus the physician orders for life-sustaining treatment program. J Am Geriatr Soc. 2010 Jul;58(7):1241-8. doi: 10.1111/j.1532-5415.2010.02955.x. PMID: 20649687; PMCID: PMC2963454.
  3. Hopping-Winn J, Mullin J, March L, Caughey M, Stern M, Jarvie J. The Progression of End-of-Life Wishes and Concordance with End-of-Life Care. J Palliat Med. 2018 Apr;21(4):541-545. doi: 10.1089/jpm.2017.0317. Epub 2018 Jan 3. PMID: 29298109.
  4. Zive DM, Schmidt TA. Pathways to POLST registry development: Lessons learned. Portland, OR: Center for Ethics in Health Care Oregon Health & Science University. 2012.
  5. Dotson A, Broderick A, Steinmetz V, Weir J, Anthony S. (2019) California’s POLST electronic registry pilot: Lessons for all states. Oakland, CA: California Health Care Foundation. Available from: https://www.chcf.org/wp-content/uploads/2019/09/CaliforniasPOLSTElectronicRegistryPilot.pdf
  6. Dotson, A. (2020). Oregon POLST registry annual report. Portland, Oregon: Oregon POLST Registry. Available from: https://orpolstregistry.files.wordpress.com/2021/03/2020-oregon-polst-registry-annual-report.pdf
  7. Physician Orders for Life Sustaining Treatment forms: registry, Cal. Assemb. B. 1234 (2021-2022)
  8. National POLST: Registry Information [Internet]. Washington DC: National POLST; c2017-2021. [cited 2021, Nov 3]. Available from: https://polst.org/wp-content/uploads/2021/03/2021.03-National-POLST-Registries-Matrix.pdf
  9. POLST California: POLST eRegistry in California: Challenges and opportunities [Internet]. Sacramento: Coalition for compassionate care of California; c2021. [cited 2021, Nov 3]. Available from: https://capolst.org/wp-content/uploads/2020/11/POLST-INTERVIEW-REPORT_11-22-19.pdf

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Body farms, human composting, conservation cemeteries: Why I wanted to create a better plan for my end-of-life directive

Leaving a legacy that ensures a sustainable earth for our loved ones and our communities.

By Mallory McDuff

When I was in middle school, my father built a prototype of a pine casket, which fit in the palm of his hand, the wood sanded smooth to the touch. My mother kept her jewelry in the box, which sat on her dresser for years.

“My funeral should be a celebration of life, and I’d like to be buried without embalming or a concrete vault,” my dad told us. “I hope to build my own casket like this before I die.”

At the time, his plans for death felt like background noise, the idiosyncrasies of a parent in a teenager’s eyes.

Then, in my late 30s, my parents died in mirror-image cycling accidents, hit by teen drivers on rural Alabama roads, two years apart. My three siblings and I managed to fulfill my father’s wishes, which gave us a way forward through our shock and then grief.

Fast forward to my 50s, with teenagers of my own: I’d been invited to share the story of my father’s green burial at a conference to help others plan ahead for their own deaths. I looked out at 100 people gathered in the parish hall of my Episcopal church, the Cathedral of All Souls, in Asheville, N.C.

Yet the conference soon revealed I had work of my own to do on this very topic of life and death.

During a session about end-of-life directives, a close friend whispered to me, “I need to revise my will since my ex is still in it!”

My final wishes didn’t align with my values

I hadn’t looked at my final documents since I’d drafted them 10 years earlier, after my own divorce and my parents’ passing. As the workshops and breakout groups proceeded, my face became flushed: I’d chosen cremation for its affordability and convenience — as straightforward as calling in and picking up a prescription.

My final wishes didn’t align with my values as an environmental educator or the example my father had given me.

One of the presentations focused on home funerals, keeping a vigil for the deceased at home, rather than taking the body directly to a mortuary.

Discovering a conservation cemetery

“No state law requires embalming,” Yongue said. “And it’s legal to transport a body in your car.”

She shared heartbreaking, but intimate, images of a teenage girl in a white dress helping carry the shrouded body of her mother to the gravesite at Carolina Memorial Sanctuary, a conservation cemetery which Younge founded that protects the land in perpetuity through conservation easements.

I’d walked the land at this burial ground, which felt like strolling in a wooded preserve, rather than a manicured lawn, as the graves are surrounded by native grasses, trees and shrubs.

I turned to the friend next to me. Our oldest daughters, now in college, had gone to preschool together. Her eyes, much like mine, were filled with tears.

During my session, I described how my father discovered that his neighborhood cemetery in Fairhope, Ala., didn’t require a concrete vault in the grave. One month after my mother was killed, my dad read to us a two-page typed document outlining details for his future funeral — like his bluegrass band at the burial and plenty of shovels so that young and old could close the grave.

He was in the best shape of his life, but wanted us to have a plan. When he was killed two years later (despite biking with a fluorescent vest and reflective lights on the shoulder of the road), we followed his wishes for a burial that restored, rather than degraded, the Earth.

“My sister and I are likely the only graduates of Fairhope High School who’ve prepared our father’s body for burial in the refrigerated room of the local funeral home,” I told the audience.

My dad’s body had been transferred to the coroner’s office and then the mortuary. Yet the funeral home director agreed to let us wrap him in my mother’s linens, according to his plan, and place his body in a handcrafted pine casket, constructed by a friend who pulled an all-nighter for the job.

Providing a plan for my final wishes

After listening to the other speakers at the conference, I wanted to provide the same type of plan for my two daughters, 22 and 15, who seemed more comfortable with emergency-room resuscitations on “Grey’s Anatomy” than talking about our own mortality. But as a single mom, I knew this journey would need to include them both, even if they weren’t ready to fully listen.

When I returned home that night, I opened the file cabinet in my bedroom and took out the folder containing my will, cremation directive and advance care directive. My final wishes for cremation didn’t seem to fit me in my 50s, given my children’s uncertain future in a climate emergency.

I’d completely forgotten my instructions for a party after my funeral with beer and barbecue from Okie Dokie’s Smokehouse, a restaurant I loved when my young children needed a quick dinner on a school night. (Per the menu, it offered “swine dining.”)

Since the conference, I’d learned about alternatives to burning fossil fuels to cremate a body into pulverized bones and ashes. While more than 50% of people in the U.S. opt for flame cremation, I’d heard about aquamation—also called alkaline hydrolysis—that uses water and lye to dissolve a body, rather than fossil fuels, and is legal in 20 states.

I’d also read about a “body farm” only an hour away at Western Carolina University, where you could donate your body to contribute to research on decomposition without the embalming required by medical science. The research at this body farm had contributed to the innovative process called human composting, which transforms a body into nutrient-rich soil, now legal in Washington state and Colorado. I wanted to know more.

That night, I decided to embark on a one-year journey to revise my final wishes with climate and community in mind. My directives for my body would have to be affordable and acceptable to my daughters.

During the year, I’d end up discovering a cemetery on the college campus where I live, attending home funerals, interviewing end-of-life doulas, volunteering as a parking attendant at the conservation cemetery and talking to my daughters about the end of our lives, just as my father did with me. My book, “Our Last Best Act: Planning for the End of Our Lives to Protect the People and Places We Love,” tells of that yearlong research.

When I told my youngest about the possibility of a home vigil after I died, she was not amused. “I will sleep in a Motel 6 if that happens,” she said. “I can pay for it myself!”

In that moment, I saw myself — a teenager rolling my eyes as my father handed me a smooth pine casket to hold in my palm — not knowing what tools I’d need to equip me for the years ahead.

I didn’t anticipate my parents’ deaths or the climate crisis we now face. But I have learned from this search that final wishes are an individual decision, a family decision and an ecological decision, with personal stakes affecting both climate and community.

It’s not a metaphor to say we are all one body on this planet. As my father said, “I want a funeral that involves my family and my friends without harm to the Earth.”

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‘Conversations with those dying are some of the most privileged I have had’

by Matthew Townsend

We are born. We live. We die. That said then, death is the only event in life of which we can be certain: an event that, it could be argued, is implicitly linked to life itself. Without life, there can be no death yet, in order to live, so too must we realise that we will, eventually, die.

The thought of death and dying often provokes discomfort and is a conversation that many prefer not to have. When people ask me what my clinical interests are, my passion for end-of-life care is often greeted with an uncomfortable silence. And for very good reason.

“Should we enjoy these conversations with our patients and their families?”

As Vanderveken et al (2019) observe we, as a species, are both hesitant and reluctant to talk about death. It brings into our conscious stream of thought the very thing that we often consciously attempt to avoid: the reality of our finite existence.

This is confirmed by Doughty (2017) who has coined the phrase ‘death avoidance’ to define the process via which someone refuses to engage in anything to do with death or dying.

Often, such thoughts can provoke death anxiety; a psychophysiological response in reaction to contemplating one’s own finitude or threat to one’s existence.

This is considered in research carried out by Fernandez-Dona ire et al (2019) who report that death anxiety can manifest as panic, fear, upset, and physiologic malaise.

Avoiding these conversations, and the necessary reflection and contemplation that accompanies them, has resulted in the end of life being a chapter of our existence shrouded in taboo and forcibly pushed to the back of our minds.

If we consider our life as a story, the closing chapter is one we shy away from reading, even though it is a necessary one in order to sign the book off as complete.

The fear prompted by the thought of death has not simply resulted in an avoidance of it as a topic: a conscious repression of our fears and anxiety has translated into an almost insurmountable problem.

The harsh reality is though, whether or not we choose to admit, we will, eventually die and, in fact, based upon my experiences in clinical practice, is something rarely feared by those living at the end of their lives.

Through my nursing career so far, I have been privileged to sit at the bedside of many people who are approaching the end of their lives: they may have a chronic condition with no trajected end point or are coming to the end of a terminal illness, with only a matter of days or hours left.

Whether the former or the latter, there has often been a common thread between the two: a beautiful, almost existential, peace. Rarely fear. Rarely panic.

But instead, an inspiring positivity and solemnity that confirms to me that the fear we burden ourselves with through the course of our lives can restrict us in our living and is, in any case, unfounded.

This considered then, how can we condition ourselves to not fear the end of life, and how can we approach death with a positivity that seems almost incongruous with its finite state?

Many of the conversations I have had with those at the end of their lives echo research in the field that regards spirituality as an important aspect of end-of-life care with its acknowledgement significantly reducing fears and anxieties (lnbadas, 2018).

That said, let us not confuse spirituality with religiosity. As Tornoe et al (2017) note, spirituality focuses on factors such as relationships, meaningfulness of life, and feelings of self-worth.

Indeed, the World Health Organization (2017) positions the construct of spirituality central to its definition of quality of life, not only recognising it as key, but acknowledging that it becomes more prevalent as one approaches the end of one’s life.

Reading the WHO’s definition of quality-of-life alongside definitions of spirituality, it can be seen how a good quality of life can necessarily translate to a good quality of death.

“I recall with great fondness when I heard roars of laughter from his side-room”

To live in recognition and acknowledgement of death as opposed to in its shadow, will help us remove this taboo and will ultimately improve our relationship with it.

This reinforces my earlier observation: life is inextricably linked to death and to discount the latter negatively impacts the former.

As Lemaster and Moyer (2020) note, our lived experiences and the extent to which we feel we have lived full and meaningful lives removes fear and anxiety of end-of-life issues.

Embracing life will aid us in not just enjoying it but in ensuring that this enjoyment will help remove the fear of death.

Conversations I have had with those who are dying are some of the most privileged and enjoyable I have had in my career.

When I admit this to my family, friends and work colleagues, I am met with the same uncomfortable silence as when people ask me what my clinical interests are. An awkwardness possibly precipitated by using the words ‘enjoyment’ and ‘death’ in the same sentence.

Should we enjoy these conversations with our patients and their families? Should we approach death with a positive optimism?

My answer: absolutely. To acknowledge that someone is dying is not a sign of failure. To acknowledge that someone is dying will not hasten your own death. To acknowledge that death forms an integral part of life should not invoke fear.

Conversely, it should be embraced. It is, after all, our final accomplishment. Conversations I have had are filled with fond memories and often bursting with smiles, happiness, and celebratory nostalgia.

I have recently helped nurse a patient who was at the end of their terminal illness. A similar age to myself, it was a particularly sobering experience. Young people are not supposed to die: it goes against what we are told is the natural order.

We are born, we live, we die and we hope that this last chapter is one that is written many years in the future. Anything that digresses from this catches us off-guard.

Following my patient’s admission to the ward, I soon noticed a common behaviour: an avoidance of talking to him about his death.

Research has shown that nurses are notoriously bad at actively engaging with death (Anderson et al, 2016).

Let us not be too harsh though: we are, after all, only human and to have to deal with it forces us to face our own mortality. That said, my patient was facing his and I was determined that he would not face it alone.

“If we consider our life as a story, the closing chapter is one we shy away from reading”

Over the next few days, we built a strong nurse-patient relationship where we discussed all manner of things.

There were sad moments, but also moments where we both heartedly laughed at, for example, his bucket list and that, in his words, how he was “going to kick the bucket before ticking items off it”.

Through the course of our conversations, there was again a notable absence: fear. He was not afraid of dying, merely sad that he could not have lived a little longer.

This was the significant difference. He also noted that the fact I spoke with him so openly about his death was “refreshing” and “reassuring”.

I recall with great fondness when I heard roars of laughter from his side-room. His mother emerged with an empty teapot and tears in her eyes. Happy tears? Sad tears? A combination of the two? “Are we being too loud?” she asked.

I smiled and shook my head. “Be as loud as you want to be,” I replied. When I checked my patient later, the room was filled with laughter; it was filled with love; it was filled with happiness.

Family and friends had come together to acknowledge what was inevitably happening and to celebrate his life. Fear was nowhere to be seen. Fear would have been out of place. When my patient died, his mother thanked me.

She noted that my positive approach to her son’s death not only helped him, but that she no longer feared death and that she had not realised how simple it was to die.

This woman had witnessed what it actually meant to die and that death is, in fact, usually an incredibly peaceful event.

Kathryn Mannix’s (2015) book, With the End in Mind, aims to remove the taboo of dying and to bring conversations about it into our lived experience.

The observations of my patient’s mother are reinforced in Mannix’s work. As Mannix notes, death, if well managed, is often painless, peaceful and, dare I say, an uncomplicated process?

Significantly, to live in acknowledgement of death is to not live in its shadow. Birth and death are inextricably linked, just sat at different ends of the spectrum of life. We cannot have one without the other.

That said then, to live in fear of death would be a disservice to life. Enjoying life, while simultaneously acknowledging death, will ensure that when the time comes, we approach it not seeing it as something to fear, but instead as a celebration of life.

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