Category: Dying Wisely and Well

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Death doulas can fill care gaps at the end of life

Palliative care nurses, social workers and people from the funeral industry are among those who work as death doulas.

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With continual advances in modern medicine, we’re enjoying longer lives. As the population ages, and particularly as many people are living longer with cancers and chronic diseases, end-of-life care is adapting and changing.

People who are approaching the end of their lives will usually spend some or most of their time at home, requiring care and support to do so. Family members might not always be available to provide this care. When they are, the process can be rewarding, but it can also be challenging and complex, often leading to a severe emotional burden for the carer.

Gaps in our health and social care systems are starting to be filled by death doulas. But beyond providing practical support, families are increasingly seeking the services of death doulas to help navigate the experience of dying. Those nearing the end of their lives, too, may bring in a death doula to ensure they can die the way they want to.

We urgently need a conversation about death doulas and new models of care at the end of life. We are continuing to build an evidence base through research with the death doula community and via consultation with the health services that interface with death doulas.

Defining the death doula

We’ve seen a similar concept in midwifery, where birth doulas have long been providing social, emotional and practical support to help women through the process of childbirth. This has been shown to have positive outcomes for mothers and their babies.

Like birth doulas, death doulas’ roles and functions are non-medical; these can include advocating, supporting (spiritually and sometimes physically), guiding, and providing emotional support to the person and their family, mainly in the home.

We undertook a systematic review of the literature to find available evidence about the death doula role. We found little formal academic literature describing the role, their training, or contribution to individuals, families and the health system.

But what we do know is that each death doula enacts the role differently. They might spend time with the dying person, offering emotional and spiritual support, and sometimes providing physical care. They might support the family carers in the work they are doing. Some death doulas are only present in the last days of life, offering “vigiling” – sitting with the dying person so they are not alone.

Some doulas offer after-death rituals such as helping families prepare the body or keeping the deceased at home.

A death doula can provide additional support to family members acting as caregivers at the end of life.

Some death doulas are paid by families who engage their services. Families have often found their chosen doula online or through word-of-mouth. Other death doulas work voluntarily, in a similar way to a hospice volunteer. But, because there are no formal structures or registers, we don’t know how many death doulas there are.

In Australia and elsewhere, palliative care nurses, social workers and those from the funeral industry work as death doulas. This seems to be a natural progression, but it’s a grey area: doulas are providing care, but are not registered or supervised.

There is little formal assessment to guide patient and family choice or to inform end-of-life care provided by professionals.

How can doula care be formalised?

Providing care in homes can be informal. It may be provided by families, friends, or community groups. Care can also be formally negotiated and provided by health services, aged care providers or private agencies.

It’s necessary to understand the implications of the death doula role. For example, they could become part of formal care arrangements such as home care packages or via private health insurance funding.

We also need to look at how these new roles are authorised to represent the dying person, as they are neither a family member nor a qualified health professional. It’s also important that they are appropriately trained and insured (if providing paid services).

There are personal, social and cost advantages in enabling care in the home for a dying person. For families, being able to support the person in a familiar environment can be a powerful motivator to engage a death doula to fill the gaps in care provision.

For the health system, care in the home is seen as positive. It can avoid unnecessary hospital use and help spread the costs of caring.

For the dying person who may prefer to die at home, it is a way of achieving this. Importantly, death doulas can improve the dying person’s ability to control their own care.

The death doula role may well incorporate some of the direct care provided by families and help them to navigate the complex needs and planning required at the end of life. If so, death doulas could represent an important opportunity to improve dying outcomes.

We need to ensure our community is informed, health service provision crosses both hospitals and homes, and that those providing care – regardless of setting – have skills and knowledge appropriate to their role.

Complete Article ↪HERE↩!

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At Death’s Door, Shedding Light On How To Live

By Judith Graham

Nothing so alters a person as learning you have a terminal illness.

Ronni Bennett, who writes a popular blog about aging, discovered that recently when she heard that cancer had metastasized to her lungs and her peritoneum (a membrane that lines the cavity of the abdomen).

There is no cure for your condition, Bennett was told by doctors, who estimated she might have six to eight months of good health before symptoms began to appear.

Right then and there, this 77-year-old resolved to start doing things differently — something many people might be inclined to do in a similar situation.

No more extended exercise routines every morning, a try-to-stay-healthy activity that Bennett had forced herself to adopt but disliked intensely.

No more watching her diet, which had allowed her to shed 40 pounds several years ago and keep the weight off, with considerable effort.

No more worrying about whether memory lapses were normal or an early sign of dementia — an irrelevant issue now.

No more pretending that the cliche “we’re all terminal” (since death awaits all of us) is especially insightful. This abstraction has nothing to do with the reality of knowing, in your gut, that your own death is imminent, Bennett realized.

“It colors everything,” she told me in a long and wide-ranging conversation recently. “I’ve always lived tentatively, but I’m not anymore because the worst has happened — I’ve been told I’m going to die.”

No more listening to medical advice from friends and acquaintances, however well-intentioned. Bennett has complete trust in her medical team at Oregon Health & Science University, which has treated her since diagnosing pancreatic cancer last year. She’s done with responding politely to people who think they know better, she said.

And no more worrying, even for a minute, what anyone thinks of her. As Bennett wrote in a recent blog post, “All kinds of things . . . fall away at just about the exact moment the doctor says, ‘There is no treatment.’ ”

Four or five times a day, a wave of crushing fear washes through her, Bennett told me. She breathes deeply and lets it pass. And no, psychotherapy isn’t something she wants to consider.

Instead, she’ll feel whatever it is she needs to feel — and learn from it. This is how she wants to approach death, Bennett said: alert, aware, lucid. “Dying is the last great adventure we have — the last bit of life — and I want to experience it as it happens,” she said.

Writing is, for Bennett, a necessity, the thing she wants to do more than anything during this last stage of her life. For decades, it’s been her way of understanding the world — and herself.

In a notebook, Bennett has been jotting down thoughts and feelings as they come to her. Some she already has shared in a series of blog posts about her illness. Some she’s saving for the future.

There are questions she hasn’t figured out how to answer yet.

“Can I still watch trashy TV shows?”

“How do I choose what books to read, given that my time is finite?

“What do I think about rationale suicide?” (Physician-assisted death is an option in Oregon, where Bennett lives.)

Along with her “I’m done with that” list, Bennett has a list of what she wants to embrace:

Ice cream and cheese, her favorite foods. Walks in the park near her home. Get-togethers with her public affairs discussion group. A romp with kittens or puppies licking her and making her laugh. A sense of normalcy, for as long as possible. “What I want is my life, very close to what it is,” she explained. And deep conversations with friends. “What has been most helpful and touched me most are the friends who are willing to let me talk about this,” she said.

On her blog, she has invited readers to “ask any questions at all” and made it clear she welcomes frank communication.

“I’m new to this — this dying thing — and there’s no instruction book. I’m kind of fascinated by what you do with yourself during this period, and questions help me figure out what I think,” she told me.

Recently, a reader asked Bennett if she was angry about her cancer. No, Bennett answered. “Early on, I read about some cancer patients who get hung up on ‘why me?’ My response was ‘why not me?’ Most of my family died of cancer and, 40 percent of all Americans will have some form of cancer during their lives.”

Dozens of readers have responded with shock, sadness and gratitude for Bennett’s honesty about subjects that usually aren’t discussed in public.

“Because she’s writing about her own experiences in detail and telling people how she feels, people are opening up and relaying their experiences — things that maybe they’ve never said to anyone before,” Millie Garfield, 93, a devoted reader and friend of Bennett’s, told me in a phone conversation.

Garfield’s parents never talked about illness and death the way Bennett is doing. “I didn’t have this close communication with them, and they never opened up to me about all the things Ronni is talking about,” she said.

For the last year, Bennett and her former husband, Alex Bennett, have broadcast video conversations every few weeks over YouTube. (He lives across the country in New York City.) “What you’ve written will be valuable as a document of somebody’s life and how to leave it,” he told her recently as they talked about her condition with poignancy and laughter.

Other people may have very different perspectives as they take stock of their lives upon learning they have a terminal illness. Some may not want to share their innermost thoughts and feelings; others may do so willingly or if they feel other people really want to listen.

During the past 15 years, Bennett chose to live her life out loud through her blog. For the moment, she’s as committed as ever to doing that.

“There’s very little about dying from the point of view of someone who’s living that experience,” she said. “This is one of the very big deals of aging and, absolutely, I’ll keep writing about this as long as I want to or can.”

Complete Article ↪HERE↩!

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Choosing your own exit.

For some who are terminally ill, hastening their own death may be the answer.

By Samuel P. Harrington

Four months before he died, my father, a widower of six years and a hospice patient, asked me to discuss techniques for hastening his death, although he did not use that term: “I have lived too long. What can I do?”

He was living in Wisconsin where medical aid-in-dying, which allows terminally ill patients to obtain a lethal dose of medicine from a physician, was not legal. At first, I was afraid that he was asking me, a physician, to go around the law and supply him with a lethal dose of sedatives. Fortunately, he was not. He was dying of lymphoma and geriatric “failure to thrive” (old age), but it was a slow and unpleasant process. What could he do, he wanted to know, to move things along? He was ready

It was Christmas Day and I was cooking a few of my mother’s traditional dishes. Gradually, and recognizing the irony of simultaneously baking his favorite pie, I eased into a conversation about refusing to eat and drink. We had had this conversation in the past and it always ended the same way. Unlike most of my terminally ill patients, my father had not lost his appetite and would not give up the pleasure that food brought him.

The next day, he had come to decision: He would no longer take any medications designed to prolong his life, he announced to his family, caregivers and hospice nurses. These included heart pills, blood pressure pills and electrolyte supplements. He would, however, continue palliative medications, including tranquilizers and pain pills. My father died painlessly exactly four months later from the effects of multiple ministrokes.

According to the Center for Disease Control and Prevention, 90 percent of people over age 65 die of six chronic illnesses (heart failure, cancer, lung disease, stroke, dementia and diabetes). If I am fortunate enough to live to a ripe old age, I expect that I will suffer from one of these illnesses. If treatments are ineffective and a prolonged dying process is intolerable, perhaps I, like my father, will want to hasten my death.

As a doctor, I have found that having a sense of some control at the end can be reassuring to people. Yet it’s not easy — nor should it be — for someone to say, “I’m ready to be done with this,” and then have it be so.

In general, three ways are available where a terminally ill patient can speed up the process of dying without the assistance of someone else. One is by declining (or discontinuing) medical treatments that prolong life without improving the quality of life. Stopping his non-palliative medications was my father’s variation on this theme.

Another approach is to refuse to eat or drink. Known as voluntarily stopping eating and drinking, VSED (pronounced “V-said”) is an effective technique that takes advantage of the natural tendency for the terminally ill to lose their appetite to the disease process. This means that there are minimal hunger pains. Patients die of dehydration, which sounds bad but dehydration, by itself, is a pain-free condition. Most people have easily managed symptoms of thirst that stop as things progress. About 10 percent have significant, hard-to-manage symptoms of thirst. Most people slip into a coma in two to four days and pass away in 10 to 14 days.

The third approach is to take a lethal dose of medication. Medical aid-in-dying is legal in seven states and the District. The vast majority of terminally ill patients who choose to exit life this way slip into a coma in minutes and die painlessly within hours.

Having tended many terminally ill patients, I’ve often wondered what I would do if faced with a prolonged death from a chronic illness. If told I had less than six months to live, I would certainly enter hospice care, where the focus of doctors and other health-care professionals is on preserving quality — not quantity — of life. But then what?

Discontinuing or declining medical treatment includes everything from refusing life support or turning it off after a catastrophic stroke, infection or heart attack to discontinuing a pacemaker, a feeding tube or kidney dialysis.

It can also mean no antibiotics for a pneumonia or bladder infection in a bedbound hospice patient. Comforted by palliative treatments — narcotics and sedatives that induce comfort and sedation — any of these decisions will result in a comparatively comfortable death.

My quandary with this method for hastening death is that it relies on the random development of a disease or complication (stroke, infection or heart attack, for example). It is not a proactive strategy offering a better sense of control.

Medical aid-in-dying is proactive and it is effective. It is an option that I believe people should have available to them. Yet it comes with an unanticipated scheduling complication that gives me pause.

The laws allowing medical aid-in-dying are written to protect chronically ill patients from impulsive decision-making, coercion and premature deaths. Most require that patients themselves initiate the process; be certified by two physicians as terminally ill (defined as a life expectancy of less than six months) and mentally competent (without serious depression); undergo a two-week waiting period between the time of certification and acquisition of the medications; and remain mentally competent and physically capable of self-administration at the time of ingestion.

One woman I interviewed lives in Oregon, where medical aid-in-dying has been available for more that 20 years. Her story epitomized the scheduling conundrum.

When her husband was dying of rapidly progressive cancer, they scheduled a family gathering at which time he planned to take his lethal potion. One week before the event, progressive disease threatened his ability to self-administer the medication and they had to hurriedly reschedule with their children and the end-of-life volunteers who mix the medications and witness the process. One son could not reschedule. The wife felt rushed and disappointed that her son could not make it in time.

That scheduling artifice bothers me and supports the nagging sense of prematurity that I associate with many aid-in-dying deaths.

Yet if I lived in a state where it was available, I would consider it, particularly under two conditions: If I were suffering from poorly controlled pain or if I could not be kept clean because of uncontrollable incontinence. (I have seen this in men and women who have suffered complications from pelvic radiation, surgery or cancer itself.)

For me, under most circumstances, that leaves VSED. It cannot really be premature or impulsive. It accelerates the body’s natural decline. And it takes 48 to 96 hours of self-controlled commitment before the patient slips into a self-propagating coma. It would offer me control and demonstrate to my family that my death is appropriate and appropriately timed.

How I will face the final phase of my life is of course unknowable. But I am sure that a sense of control is the most important attribute of a good death and that advance care planning helps more patients achieve their end-of-life wishes.

I know that I do not want to be a burden on my family. I want my values and my legacy to be affirmed and appreciated. I want to be clean and comfortable. I want to optimize my relationships and bring closure to as many problems as possible. And I want my death to be appropriate in time and place.

To achieve all this requires discussions with doctors, family and friends. It also requires understanding one’s disease and likely prognosis and then deciding when to say “no” to aggressive treatment and when to say “yes” to hospice care.

These are not easy conversations or decisions. Yet to reach the peaceful end that most of us wish for, one might require a plan to hasten the process.

Complete Article ↪HERE↩!

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A Place for Death in the Life of the Church

What does faithful ministry look like in a church that sees more funerals than baptisms?

BY Cole Hartin

I remember the first time I touched a dead body. It was at my grandfather’s funeral. You know the scene: attendants in boxy black suits, the cloying scent of flowers, tissue boxes, breath mints, dusty funeral parlor furniture. As the sad murmur of relatives droned all around, I stepped up to the coffin and quickly reached in to touch his embalmed hands, folded nicely on his belly. They felt like cold, soft leather.

That was when death was still an anomaly to me, an outlier. Now it has become familiar, a recurring pattern in recent weeks and months. For the past several years, I’ve served as a pastor in a suburban parish, an evangelical who made his home in a mainline church. I don’t run the show, since I’m a lay pastor, but I’ve been there for most of the funerals. In the past few years we’ve had almost 40 in our parish. Those are a lot of faces I won’t get to see any more on Sunday mornings. Death is no longer a stranger to me; it is a regular part of my life.

This has been one of the more difficult parts of being a pastor, seeing people who faithfully served our Lord over decades take ill and start a steep decline. These deaths don’t have the shock of tragedy, of teenagers hit by cars or babies born without breath. Still, the dull ache of sorrow is there.

It wasn’t always this way for me. I grew up in a thriving megachurch (by Canadian standards, anyways), and I took it for granted that slowly and surely our congregation would continue to expand. And it did, all through my teen years. As I looked out over the congregation on Sunday mornings, I could see a diverse group of people from ages 15 to 60. But children were most often annexed to their age-appropriate ministries, seniors were few and far between, and funerals were not a constant. The bulk of our congregants were in the prime of life.

Later, when I began my pastoral ministry in a congregation that skewed to those over 65, I became frustrated as our church struggled to thrive. Growth no longer just seemed to happen. And though we saw many young families drawn deeper into the life of Christ, we also lost many veteran saints. I learned to care for the very young as our nursery filled up, and I learned to walk with the aging as they lost the strength to sit in our pews.

Though I looked longingly at congregations that seemed to expand effortlessly, I learned to love the slow work of pastoring a struggling congregation. I took in the beauty of a woman in her 80s dancing with toddlers and singing worship songs. And I remember the 70th wedding anniversary of a couple that faithfully attended worship for just as many years. These quiet miracles don’t have the same luster as other “vibrant” ministries I’ve been a part of, but nonetheless, they witness to the patience and love of God. I came to appreciate the church as the body of Christ formed of the whole people of God, from young to old—even those heading to their graves.

Pastoring an Aging Congregation

Death does not fall outside the life of Christ’s Body; it is a threshold through which we all must walk. Recognizing death as part of our common Christian life allows for a more expansive vision of God’s redemption, which begins the day we are conceived and carries us into our dying

I’ve come to appreciate my close experiences with death. When I look at large, booming churches or hip, thriving church plants, I wonder if their pastors experience the regular privilege of burying octogenarians. I’m glad for these growing churches, insofar as people are having encounters with Christ and his Word. I wish so many of the churches in my denomination would thrive like that. Yet I’m learning to appreciate aging congregations like my own in which the whole community of faith mourns with the death of each faithful servant.

I recently read Kate Bowler’s book, Everything Happens for a Reason: And Other Lies I’ve Loved. Bowler was diagnosed with stage IV colon cancer at age 35. She was enjoying a vibrant career, academic success, and a wonderful home with her husband and toddler. The news of her cancer seemed to crush all of that. Life had to be put on hold for chemo, rest, and preparation for dying.

She writes in her memoir about churches in which blessings come as the direct result of fierce faith. She writes, “The prosperity gospel is a theodicy, an explanation for the problem of evil. It is an answer to the questions that take our lives apart. … The prosperity gospel looks at the world as it is and promises a solution. It guarantees that faith will always make a way.” Bowler writes that she tacitly held to a tamer form of prosperity gospel logic. She expected that, if she followed Jesus, things would go pretty well because God loves her and wants her to have a good life.

I often find myself believing the same thing about my church: if we worship Jesus and do his will, he will bless us with new members and increased vitality. Stagnant membership and death in the congregation feel like punishments for lack of faith.

But God throws wrenches in the wheels of our theological systems. We get fired. We get divorced. We get sick. We die.

Our local congregations lose their liveliness. They suffer from conflicts. They struggle to raise funds. They shrink

Christians believe that “death is swallowed up in victory” (Isa. 25:8, 1 Cor. 15:54). Our faith is built upon the fact that Christ has died, Christ is risen, and Christ will come again. But our experience of death is not always so straightforward. Our sojourn still leads to our bodies being cremated or placed in a coffin.

Helping People Reckon with Death

In many churches I’ve attended, death was pushed to the margins. It was treated like an interruption to God’s work in the world, not as an instrument by which God draws people more fully into his own life. I’m not saying we should love death—after all, it’s still “the last enemy” (1 Cor. 15:26). But part of living as disciples is learning to die well.

Ephraim Radner, professor of historical theology at Wycliffe College, writes,

“To die well” is to locate what is good somewhere outside our control—in the God who gives and receives our lives. It is also to allow that alien goodness, the goodness of God’s transcendent superintendence over life and its temporal duration, to inform the very meaning of our vulnerability to illness, suffering, and death.

In other words, by embracing death in our churches, we allow our creator to give meaning to our human weakness.

Stanley Hauerwas notes in God, Medicine, and Suffering that Western culture shifted from preparing Christians to die well in the medieval period to franticly attempting to cure us from death in contemporary society. He writes, “We have no communal sense of a good death, and as a result death threatens us, since it represents our absolute loneliness.” According to Hauerwas, we need to learn once again how to grapple with our mortality.

Stories like Bowler’s, then, make me wonder about the kind of church we ought to be. What might it mean to be a church where people regularly come face to face with death? How can we present the gospel in a way that changes hearts, but also ministers to people whose earthly lives will never return to “normal?”

One way in which pastors can deal with death is by talking about it openly in sermons and in conversation. I remember talking with a friend who has since passed away from cancer. He told me that many of the Christians he encountered didn’t want him to talk about the possibility of death. They wanted him to stay positive, focusing on things he could do to get better. He knew that he wouldn’t, but he felt the pressure to stay positive for the sake of others. When I talked frankly with him about the possibility of death, he seemed to breathe easier. In naming death, he allowed the grace of God to come to him even there.

We talk about illness and aging as “battles”; to die is to lose these battles. But staying alive is a battle we all lose eventually—some quickly, some slowly—so we might as well invite God’s presence into our dying. In the cross we understand our living and our dying. What better place to learn this than the church? Who better to initiate these conversations than pastors? Sure, I want my church to be dynamic, vibrant, growing; I pray to God for this. But I also want to cultivate a church where people can reckon with death, worshiping a savior who won his victory hanging from nails pinned to a wooden cross.

Complete Article ↪HERE↩!

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Death’s a party

At monthly mortuary gatherings, Grass Valley duo the Posy-Filled Pockets encourage mortals to look forward to their last breath

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I’m uncomfortable with death. A staunch atheist who grew up Christian, I used to believe heaven or hell awaited me on the other side. It took years of anxiety attacks and therapy to come to terms with mortality, with there being nothing afterward, and I find peace by not thinking about it.

But tonight, the whole point is to think about it. The mortician warns us that at any moment, someone’s dead body could interrupt the show. Even mine.

Tim Lilyquist coolly gives the omen to the 25 or so seated at the Chapel of Angels Mortuary in Grass Valley. His death-positivity group Posy-Filled Pockets is just beginning its October presentation. The projector screen reads: “Death. Everyone’s doing it.”

It’s not like we’ll see a literal dead body (though if we hear commotion in the back, Lilyquist says it could be because of that). A fresh corpse would remind us that, even though we’re all here to laugh, learn and contemplate our unexistence, death strikes at any time. Tonight’s topic of discussion: the afterlife.

Lilyquist and founder Rachel James open the night by defining death positivity, which boils down to allowing death to be a part of everyday conversation, even if it’s scary.

“Death is something our culture is extremely weird about,” James told SN&R. “We don’t talk about it, we don’t plan for it, and anyone interested in it is considered morbid or weird when it is the only personal experience besides birth really that we all have.”

Four speakers gave talks that were funny, morbid and informative. One made a case that seances, mummies and telephones were ways humans tried to call up the dead. Another theorized that water is a parasite that infects and animates our otherwise lifeless bodies. She used The Stuff as a metaphor. In the ‘80s B-horror movie, railroad workers discover a tasty, yogurt-like substance growing out of the ground, which they package and sell like hotcakes. It turns out, it’s alive and mass-consumes its consumers. To add to the strangeness, she offered everyone water before she started. Sneaky!

In the modest church space, it felt somewhere between awkward youth group night, lo-fi Ted Talk and a giggling gathering of goths. But it’s more than that. At the front of the show, James told the crowd that the talks are meant to lure you into the workshops—the less peculiar part of the project—where they help people with more pragmatic issues related to death, including how to create a living will, who to call first when a loved one passes, and eco-alternatives to embalming. You know, stuff we should be planning for, but our culture’s aversion to death gets in the way.

Posy-Filled Pockets cofounder Tim Lilyquist found his calling as a mortician.

Several recent studies confirm this. One in 2017 by caring.com showed that only four out of 10 Americans have a trust or living will. A 2013 survey by the Institute of Medicine showed that 90 percent of Americans thought it was important to have end-of-life discussions with their loved ones, but only 30 percent did. And a 2013 Pew Research Center report showed that 47 percent of Americans have experienced a death in their lives.

If listening to macabre presentations softens people enough to start planning for death in a responsible way, then James says she feels like she’s succeeded.

Though Posy-Filled Pockets started in 2016, it went on hiatus that year when James found out that her father was diagnosed with Stage 4 esophageal cancer. His death, and her similar diagnosis a year earlier, made much of what she advocates become crystal clear.

DEADx Talks

Death positivity is now a national movement. One of its most prominent figures is Caitlin Doughty, a mortician who wrote a morbidly funny memoir titled Smoke Gets In Your Eyes, and founded the death acceptance organization called Order of the Good Death, which shares death-positive content online and hosts similar gatherings to Posy-Filled Pockets.

James was one of the first people to join the Order. At the time, she was the editor-in-chief of Atlas Obscura, an offbeat travel site with her own personal focus often being on death-related destinations, like an abandoned brothel in Lassen County that is rumored to be haunted.

“I’ve always been drawn to [death], and I think for most of us who are in the death industry, it’s because we experienced death in early age or had an experience that left us with a lot of questions,” James says.

In 2015, James’ surprise breast cancer diagnosis led her to move back to

Cofounder Rachel James, one of the first to join the Order of the Good Death, was a travel writer and editor for an obscure travel magazine called Atlas Obscura.

Grass Valley, her hometown. She put writing on hold and got a double mastectomy while in her second trimester with her now 3-year-old son.

She’s in remission now. The experience was shocking, but James says it showed her death wasn’t an abstract concept.

“I had never thought about a [living will], or anything like that,” James says. “How can I be so involved in this topic and still not have thought about the practicalities of it for myself? It kind of got me more serious about the topic.”

Later that year, she met Lilyquist. As a kid, he imagined himself as a homicide detective, but with no real interest in law enforcement and a dead-pan sense of humor, it transmuted into death industry work, which he’s happy doing. He says he enjoys the questions folks have regarding his career choice, like what happens in the cremation process.

“Once I started working at the mortuary, I saw how widespread it was that people considered death a taboo subject,” Lilyquist explains. “Especially the topic of grief. It definitely helped expose me to a greater variety of how it’s affecting people.”

James insisted that he co-host a death-themed monthly event that was distinctly Grass Valley. The initial Posy-Filled Pockets was a success, something James wasn’t sure about at first, since the Nevada County small town is no Los Angeles or San Francisco, where similar Death Salons are sometimes held at convention centers.

Lo-fi elements are part of its charm. Many of the speakers aren’t professionals, including Courtney Williams, who’s spoken twice at Posy-Filled Pockets. Once about how “fashion kills” (about people wearing dresses dyed with arsenic, for instance) and a second time about her ex-husband’s suicide.

“People are normally uncomfortable in mortuaries,” Williams says. “You think it’s probably an awkward conversation so maybe people won’t be raising their hands and laughing about stuff. People were really engaging with the information, which was surprising to me.”

In 2019, Posy-Filled Pockets have several themed events and workshops lined up, a new website, new speakers and a podcast in the works. Lilyquist and James are resurrecting their efforts to get people talking about death.

But after watching Posy-Filled Pocket’s presentation, I realized that death-positivity isn’t just about thinking about the end; It’s about cracking jokes, finding weird stories to spin and studying all the oddball edges of this scary seemingly straight-forward topic, and having fun with something we are told is in no ways fun.

It is pretty strange that we all eventually cease to exist one day, and why not celebrate that? My dog, who’s blissfully unaware of death, will never know the joy of laughing at her mortality.

Complete Article ↪HERE↩!

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Death as a Design Challenge

Last year Elaine Fong’s mother used the Washington Death with Dignity Act. Elaine shared the experience of helping her mother fulfill her end-of-life wishes in a TEDx San Francisco presentation in October 2017.

Elaine told us, “Our family is grateful to have given our mom a peaceful death and to fulfill her end of life wishes in this way. I wanted to share the experience we had with the world, because I understand how important it is to have this honest conversation, and because it was her wish to help others be brave too. Her life would have ended painfully if it were not for this policy and the work you all have done.”

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A Dress Rehearsal for Death

We had started down the path of honoring our mother’s wish to have a good death until a hospice nurse figured out that she wasn’t really dying.

Monona Yin, right, with her mother, Fay Hoh Yin, and brother, Duncan Yin.

By Monona A. Yin

Three years ago, my family and I had the experience of going through a full “dress rehearsal” for my mother’s demise. At 83, she had become alarmingly weak from stage IV lymphoma and atrial fibrillation, and asked me and my brother to come home to Delaware for her next oncologist visit.

Mom had already undergone chemotherapy and cardioversion, so we knew there were few treatment options left. Still, we were utterly unprepared when the doctor said, “She probably has less than six months,” and recommended that she begin hospice care.

Widowed at just 37 with two small children, Mom has trained herself to face challenges without flinching. She is that rare Chinese elder who isn’t superstitious about mentioning or planning for her own death.

True to form, when we got home from the oncologist’s office, Mom sat us both down at the kitchen table to discuss her end-of-life wishes. She had witnessed two horrible lingering deaths up close — her mother’s and a longtime friend’s. What she feared most was pointless suffering and the loss of control over her own life. She wanted us to understand that, if she had little hope of recovery, she’d rather go quickly than fall apart slowly and painfully.

My brother, at the other extreme, wanted Mom to pursue every medical option, no matter how long the odds. He believed that doctors were fallible, there was always another treatment out there, and life was worth clinging to. And he couldn’t bear the thought of living without her.

Then there was me, torn between them. I had spent hours listening to Mom’s fears and understood them. A decade earlier, my mother-in-law had died with a feeding tube in her side while her oncologist suggested more surgery — after six months of wasting away from metastatic cancer. It would have been infinitely kinder to allow her to die peacefully in her own bed.

We had given my paternal grandmother just such a “good death.” We sat by her bed and told family stories as she slipped into unconsciousness. We turned away from the outside world and drew close to one another. All was quiet and time seemed to stop. Finally, we held her as she took her last breaths, letting her know how much we loved her but also letting her go. I remember that week as a thing of rare beauty. It taught me that dying well can be a balm and a blessing to all involved.

Recognizing the enormous gulf between those two scenarios, I supported Mom’s right to die on her own terms. Like my brother, I desperately wanted more time with my mother. Despite her failing body, Mom’s mind remained sharp. In recent years, our occasional mother-daughter tensions had subsided, leaving a much warmer and less complicated companionship.

After an emotional week of debate, we all agreed to bring Mom to New York for a second — and final — opinion from the world-class doctors at Memorial Sloan Kettering. If they too determined that nothing more could be done, we would accept the inevitable.

At Sloan Kettering, Mom went through the scans without incident but afterward her blood pressure dropped dangerously low and she was admitted as an inpatient.

By the next night, Mom could hardly breathe at all. It was agonizing to watch her gasping for air. She was terrified of suffocating and on the verge of panic. Finally, she pulled me close to say, “Tell them to stop everything.”

I had promised to honor her wishes, so I found a doctor and activated her D.N.R. In a few minutes, my husband, Steve, and our 14-year-old daughter, Maya, arrived and Mom couldn’t hold back her sobs. “I’m so sorry I won’t see you grow up! I’m sorry I won’t see you graduate or get married!”

We had all been coming to terms with Mom’s mortality for months but the shock and pain were still overwhelming.

Then something that seemed miraculous happened. A hospice nurse, Tracy Kahn, arrived and went in to check on Mom. She came back to tell us that she didn’t think Mom was going to die that night, the next night, or maybe for weeks.

Based on years of observing hospice patients, Tracy did not believe Mom was dying of cancer right then.

Instead, without our realizing it, her heart had been severely weakened by the cardioversion, which required high doses of a toxic drug. Almost two liters of fluid had accumulated in the lining of her right lung.

We immediately reversed the D.N.R. but it would be another 10 days before Mom grew strong enough to have the fluid drained. Over the next month, the hospital’s lymphoma, cardiology and pulmonary teams worked together to bring Mom back from the brink. They administered steroids, gave her blood transfusions, stabilized her immune system, optimized her diuretic and treated her infections.

Mom transferred to a rehabilitation center for another month, then came to live with me in Brooklyn. With our newfound sense of “now or never,” Mom and I fulfilled one of her longtime dreams. We edited and self-published her memoirs, which she’d been writing for years, and she’s enjoyed positive reviews from friends and strangers alike.

Today, Mom still wrestles with neuropathy, shortness of breath, and sometimes crushing fatigue — but she is very much alive. Even more amazing, she has been living on her own for the past two years.

We’ve had time to reflect upon our decisions, how we influenced one another, and what we’d do differently. My central insight is that it took all three of us to steer clear of the twin shoals of dying too soon and dying too late. We made better decisions because we listened to one another and weighed all the conflicting information. In hindsight, my mother acknowledges that she wanted to “pull the plug” too soon because she became overwhelmed by fear.

No one thinks clearly in the grip of panic. That’s why it’s so important to start talking long before the end. Not merely about what constitutes a good death but, more important, what makes even a diminished life worth living. As Atul Gawande writes in “Being Mortal,” “Our ultimate goal, after all, is not a good death but a good life to the very end.”

The end-of-life conversation is equally important to both sides — the dying person and the survivors. One of my mother’s greatest comforts is knowing that her children understand her wishes and will honor them. We proved that during the dress rehearsal.

Only recently have Mom and I realized how much it cost me to be her health care proxy, rather than a grieving daughter who wanted to do anything to save her mother. I’m still going to be torn between those two roles “the next time” but simply being aware of that inner conflict helps mitigate it. And Mom’s future decisions will be informed by all the joy she would have missed had she died that night in late 2015.

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