Category: Philosophy of Living

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Death doulas: Bringing death, dying and grief out of the shadows and into the light

By Jennifer Ackerman, Regina Leader-Post

[E]lizabeth George was “tickled” to see what came after death.

She knew what she wanted her death to be like and she wasn’t afraid.

Diagnosed with colon cancer in 2010, Elizabeth told a friend she wanted three things to happen when she died: A singing circle, for a few select people to be present, and for her body not to be “whisked” off right away.

“Elizabeth really wanted to have a good death,” recalls one of her close friends, Ruth Blaser.

A childhood experience with death may have been what made Elizabeth so particular about her own passing. She lost her mother at age 11.

“She felt like the family response had been extremely unhealthy,” says Emily Wilson-George, one of Elizabeth’s two daughters. “They basically took everything that had belonged to her mother out of the house within the week and never spoke about it. She didn’t want that or anything remotely similar.”

Three days before she died, Elizabeth met with two death doulas. Together, along with friends and family, they ensured her death would go as planned.

A home vigil was organized. Elizabeth’s body was not whisked off to the morgue or a funeral home. Rather, she was moved to her dear friend Joyce Bethune’s house, gently placed on a massage table in a room full of tropical plants and a water fountain — a place where she found peace.

Joyce Bethune, left, and Ruth Blaser stand where they held a home vigil for their good friend Elizabeth George in Regina. George passed away last January from colon cancer.

Elizabeth’s fearless and accepting attitude toward her own mortality is often the exception.

“When you talk to people about how they feel about their own death, it’s a bit of a mood killer,” says Wilson-George. “It’s not really considered an acceptable topic of conversation.”

But an emerging cohort of death doulas in Regina is bringing death, dying and grief out of the shadows and into the light.

“There seems to be more healing when we can be sharing through grief, sharing through death,” says Denise Seguin Horth, one of the death doulas who met with Elizabeth. “So many other cultures embrace death more.”

Seguin Horth trained to become a death doula in 2016, through Beyond Yonder Virtual School for Community Deathcaring in Canada.

During a 14-week online course, participants learn advanced planning, home funerals, post-death body care, end of life financial considerations, grief, celebrant skills, death care rituals and more. A practicum is recommended, but not required.

“I feel that people have been so distanced from death that grief is heavier. It’s almost like a secret … It weighs on you and it just keeps you anchored down,” says Seguin Horth. “When we can talk more about death and talk more about grief openly without the taboo, … it seems to help that energy flow elsewhere so that we can move on.”

Sharon Pulvermacher — who also met with Elizabeth — did her training in 2014. She has been fascinated by death and the stages of grief since Grade 12 when she wrote a paper on death and dying.

Pulvermacher says being a death doula not only gives the dying person and their families a safe space to express themselves, but it’s also an opportunity to share with them their end-of-life options.

She says many people don’t even realize it’s within their rights to take the body of their loved one home for a vigil or home funeral, if that’s what they want to do.

“It’s … giving them a few more ideas, a few more tools, that they can imagine a little bit more largely than what they would do otherwise,” says Pulvermacher.

Defining death doulas

Definitions vary, but the core role of death doulas is to provide comfort and support to the dying and their families. Death doulas do one-on-one sessions, home vigils, simply sit with the dying person in the hospital holding their hand, and more.

“All death doulas have different niches. For me personally, I feel drawn more to accompanying those who are dealing with grief,” says Seguin Horth, who volunteers at Regina Wascana Grace Hospice.

She works with a variety of people — those who may have lost a limb or a pet, recently divorced or, like Elizabeth, someone who is in the last days of their life.

Besides the practical services death doulas offer, such as planning home funerals or helping with living wills, they also act as a sounding board for people to express their fears and musings about death, the afterlife and more.

A death doula brings no emotional or personal baggage that a friend or family member might and allows people the freedom to express themselves fully.

Sharon Pulvermacher is one of a few death doulas in Regina.

Where it began

Phyllis Farley, a key U.S. figure in the birthing centre movement, attended an end-of-life care conference in 1998. At the time, she was a chairwoman at the Maternity Center Association, an organization devoted to providing high-quality maternity care. She realized the same hands-on help and emotional support women receive when giving birth is just as important during death.

“We’re more than willing to, and very happy to in many cases, celebrate the birth of a child. While the potential of connections and the wonderful things they might do is always there, we don’t know that, but yet we celebrate it,” says Charisma Thomson, a professor at the University of Regina whose research centres on the anthropology of death.

But we deal with death differently.

“Here we have an individual at the end of their life, who we should be celebrating because we know what they’ve accomplished,” Thomson says. “Yet it’s that moment when … people just turn their back on them and really kind of silence their voice.”

At 80 years old, Farley founded an organization called Doulas to Accompany and Comfort the Dying. The program taught doulas how to listen and relate to the dying person, as well as do more practical things like helping with a living will.

The field grew and made its way to Regina, where there are about 10 death doulas. Some charge for their services, some don’t. Every death doula is different, and every person who seeks their services is looking for different things.

For Elizabeth’s daughter, the death doulas were invaluable.

“I think that having the death doulas not only provided the ritual that allowed us to process (her death) better, but it relieved a lot of the pressure,” she says. Not having to worry about the practical and procedural aspects of the vigil meant she could focus on being with her mom and getting closure.

But for many, the response to death may be much like when Elizabeth’s mother died — pushing death away.

Thomson traces society’s shift — from direct involvement in what happens to the body after death, to the current very institutionalized process — back to the Civil War in the United States, when embalming became common practice.

“You have Dr. Thomas Holmes during the Civil War starting to use embalming to send the soldiers back home … Once we start to add this clinical aspect to it, people I think believed it was beyond their abilities,” says Thomson.

As embalming became more popular, families sought professionals to do it — taking aftercare out of the hands of the family.

Around the same time, society decided priests were not qualified to declare time of death, and from then on only medical specialists could. Thomson says this shift also pushed death closer to the clinical realm rather than a personal one.

“We view death, or in North America anyway, … as though it is an illness or a disease or something that we can overcome with technology and science,” says Thomson.

And today, death happens in a hospital more often than not. When somebody dies, their body is typically moved to the morgue or the crematorium swiftly, giving family and friends little time with the body.

Bethune remembers a different time when home vigils were common.

“There was time for people to say their goodbyes and the whole process was a natural process,” she says. “I think we’ve just gotten so far away from that.”

She says having death doula services to help with things like home vigils or simply talking people through death is essential.

“It means that we don’t push our grief down into our subconscious, into our bodies. It means that we deal with it, that this is a natural part of life,” says Bethune.

Elizabeth wanted her family to have the time to say goodbye. So instead of denying the inevitable, she met it with playful curiosity.

“I know it sounds strange, but I’m a bit tickled at what’s coming next,’ Elizabeth told Seguin Horth, who describes that approach as beautiful. “She went past the fear.”

Denise Seguin Horth works as a death doula, and is shown standing at Riverside Memorial Park Cemetery. Death doulas support people in the process of dying.

During her meeting with the death doulas, Elizabeth was asked about her belief system and what she wanted her friends, family and the doulas to do when she died. According to Blaser, they also asked her what she imagined death to be like — a bold question friends and family might not feel comfortable asking.

“It was like mom didn’t have any doubts about what the death doulas were about,” says Wilson-George. “I was sitting there being like, who are these people? They’re sitting in on what’s a pretty personal time.” But in the end, she was grateful for their role in her mother’s end of life.

When the time came, Elizabeth’s vigil lasted a full 24 hours.

Someone from Alternatives Funeral & Cremation Services moved Elizabeth to Bethune’s home from the hospice, which she had entered just five days earlier. With no official certification or oversight board, death doulas are restricted from physically transporting a body.

“We sang her out of hospice with a favourite song of hers, and she had a quilt that had been made specially for her, draped over her,” recalls Pulvermacher.

Then they sang her into Bethune’s home where Seguin Horth and Pulvermacher positioned her body on a massage table and placed ice packs around her — looking after the practical and hygienic aspects of the vigil. They also made sure the family knew what to expect in terms of how the body would act in the hours after death.

A few close friends and family stayed the entire time. Others came and went to pay their respects. More songs were sung and memories of Elizabeth shared. Wilson-George remembers the feeling in the room as surprisingly intimate and radiantly positive.

For Blaser, the process with the death doulas helped her prepare.

“When Elizabeth died, I (felt) a sense of peace that we really accompanied her well and that it was her time to go,” she says. “That doesn’t mean that I don’t miss her. I do. But it’s not a wrenching kind of grief.”

For Emily Wilson-George it meant closure. After having seven years to imagine what her mother’s death would be like, Wilson-George went through so many different kinds of dread. The death doulas, along with friends and family helped minimize that fear.

“I think that they way that we managed to honour her death was something she would have approved of,” she says. “The feeling in the room that evening with the death doulas … it was so positive.

“I’m grateful to them for creating the space, for creating the opportunity.”

Complete Article ↪HERE↩!

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What Vets Want at the End of Life Is Very Different From What Civilians Want

Ron Fleming

By

[A] lot of Ron Fleming’s fellow soldiers spent the last five decades trying to forget what they saw and did in Vietnam. Now 74, Fleming has spent most of that time trying to hold on to it. He has never been as proud as he was when he was 21.

“I take issue with those who say we lost. We didn’t lose that war,” he said, sitting on the edge of his hospital bed at the San Francisco VA medical center. “Everywhere I went, we literally kicked the crap out of them.”

Fleming was a door gunner in the war, hanging out of a helicopter on a strap with a machine gun in his hands. He fought in the Tet Offensive, sometimes 40 hours straight, firing 6,000 rounds a minute. But he never gave much thought to catching one himself.

“You see, at 21, you’re bulletproof,” he said. “Dying wasn’t on the agenda.”

But now, it is. Fleming has congestive heart failure, arthritis and breathing problems. He often lands in the VA hospital with asthma attacks, and the palliative care team visits him regularly. He thinks about death.

“I wish it’d get off its ass and come on me. I’m sick of this crap,” he said, as his heart rate monitor ticked up. “You see, dying’s the easy part. Living is what’s hard.”

Fleming has had trouble holding down a job since he got back from the war. He had a girl he lived with for 10 years, but they never married, never had kids. He lives alone in Oakland now. He says he angers easily and is always hypervigilant. About 10 years ago, he was diagnosed with PTSD. More than anything, he says, he suffers from a “rotten outlook” on life.

“Sometimes I think that now I’m being paid back for all the men I killed,” he said. “I killed a lot of them. More than I can count.”

Unlike Fleming, some Vietnam vets don’t find out they have PTSD until they have just months or weeks left to live. Symptoms of terminal illnesses, like pain or breathlessness, can trigger flashbacks, making vets feel as threatened as they did on the battlefield.

“The war memories start coming back, they start having nightmares,” said VJ Periyakoil, a palliative care physician at the VA in Palo Alto. She says opioid medications, like morphine and oxycodone, that are often used for treating pain and breathlessness can make PTSD symptoms worse.

“The side effect of those medications, they make you fuzzyheaded,” she said. “Your defenses that you use to cope with the PTSD, which might help repress a lot of the difficult memories, that coping strategy starts to come apart.”

She has had patients tell her: “I would much rather tolerate the physical pain, the cancer pain, than take opioids and my defenses crumble.”

Some vets see their pain or PTSD as retribution for their work in the line of duty.

“Sometimes I’ve had patients refuse medications that might ease their experiences because they feel that they deserve to suffer,” Periyakoil said. “This is redemptive.”

The best thing to do in these situations can be to stand down, she said. With weeks left to live, there isn’t enough time to resolve the mental anguish, and staff have to let patients set the pace and tone for their care.

But doctors and nurses, just like soldiers, hate doing nothing.

“We talk about the moral distress that we have sometimes about really knowing that we’re doing the right thing for this individual, so that we can be present for their suffering, the way they need to do it,” said Patrice Villars, a hospice nurse at the San Francisco VA.

For Ron Fleming, death is still likely a couple of years out. His doctors have been begging him, gently, to consider mental health counseling or antidepressants. But he has refused.

“I don’t want to take psychiatric drugs. The vets call them the happy pills,” he said. “I don’t want any of those, because they change you. I don’t want to change.”

He’s not sure if he deserves to be happy.

“That I don’t know,” he said.

His pain is what connects him to the past. Fleming was awarded 18 air medals for acts of meritorious achievement and heroism. The loss and grief he experienced in Vietnam are woven into the same memories of victory and glory. He doesn’t want treatment that might make that go away.

Complete Article ↪HERE↩!

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What It’s Like to Learn You’re Going to Die

Palliative-care doctors explain the “existential slap” that many people face at the end.

By Jennie Dear

[N]essa Coyle calls it “the existential slap”—that moment when a dying person first comprehends, on a gut level, that death is close. For many, the realization comes suddenly: “The usual habit of allowing thoughts of death to remain in the background is now impossible,” Coyle, a nurse and palliative-care pioneer, has written. “Death can no longer be denied.”

I don’t know exactly when my mother, who eventually died of metastatic breast cancer, encountered her existential crisis. But I have a guess: My parents waited a day after her initial diagnosis before calling my brother, my sister, and me. They reached me first. My father is not a terribly calm man, but he said, very calmly, something to this effect: “Your mother has been diagnosed with breast cancer.”

There was a pause, and then a noise I can best describe as not quite a sob or a yell, but feral. It was so uncharacteristic that I didn’t know then, and I still don’t know, whether the sound came from my father or my mother.

For many patients with terminal diseases, Coyle has observed, this awareness precipitates a personal crisis. Researchers have given it other names: the crisis of knowledge of death; an existential turning point, or existential plight; ego chill. It usually happens as it did with my mother, close to when doctors break the news. Doctors focus on events in the body: You have an incurable disease; your heart has weakened; your lungs are giving out. But the immediate effect is psychological. Gary Rodin, a palliative-care specialist who was trained in both internal medicine and psychiatry, calls this the “first trauma”: the emotional and social effects of the disease.

The roots of this trauma may be, in part, cultural. Most people recognize at an intellectual level that death is inevitable, says Virginia Lee, a nurse who works with cancer patients. But “at least in Western culture, we think we’re going to live forever.” Lee’s advanced-cancer patients often tell her they had thought of death as something that happened to other people—until they received their diagnosis. “I’ve heard from cancer patients that your life changes instantly, the moment the doctor or the oncologist says it’s confirmed that it is cancer,” she says.

The shock of confronting your own mortality need not happen at that instant, Coyle notes. Maybe you look at yourself in the mirror and suddenly realize how skinny you are, or notice your clothes no longer fit well. “It’s not necessarily verbal; it’s not necessarily what other people are telling you,” Coyle says. “Your soul may be telling you, or other people’s eyes may be telling you.”

E. Mansell Pattison, one of the early psychiatrists to write about the emotions and reactions of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves: “All of us live with the potential for death at any moment. All of us project ahead a trajectory of our life. That is, we anticipate a certain life span within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisis … Whether by illness or accident, our potential trajectory is suddenly changed.”

In this crisis, some people feel depression or despair or anger, or all three. They grieve. They grapple with a loss of meaning. A person’s whole belief system may be called into question because “virtually every aspect of their life will be threatened by changes imposed by the [disease] and its management,” Lee has written. In a small 2011 Danish study, patients with an incurable esophageal cancer reported that after their diagnosis, their lives seemed to spin out of control. Some wondered why they had received a fatal diagnosis, and fell into despair and hopelessness. “I didn’t care about anything,” one patient said. “I had just about given up.”

In the 1970s, two Harvard researchers, Avery Weisman and J. William Worden, did a foundational study on this existential plight. Newly diagnosed cancer patients who had a prognosis of at least three months were interviewed at several different points. At first, for almost all the patients in the study, existential concerns were more important than dealing with the physical impacts of disease. The researchers found that the reckoning was jarring, but still relatively brief and uncomplicated, lasting about two to three months. For a few patients, the crisis triggered or created lasting psychological problems. A few others seemed to face the crisis, then return to a state of denial, and then double back to the crisis—perhaps more than once. In the study, the researchers describe a patient who was told her diagnosis, only to report to interviewers that she didn’t know what it was—and then make it clear she wasn’t interested in receiving a diagnosis in the near future.

Palliative-care doctors used to think that a patient was either in a state of denial or a state of acceptance, period, Rodin says. But now he and his colleagues believe people are more likely to move back and forth. “You have to live with awareness of dying, and at the same time balance it against staying engaged in life,” he says. “It’s being able to hold that duality—which we call double awareness—that we think is a fundamental task.”

Whether or not people are able to find that balance, the existential crisis doesn’t last; patients can’t remain long in a state of acute anxiety. Coyle has found in her work that later peaks of distress are not usually as severe as that first wave. “Once you’ve faced [death] like that once, it’s not new knowledge in your consciousness anymore,” she says.

The existential slap doesn’t always entail mental suffering, and medical professionals who work with the dying say there are rare cases in which patients seem to skip this phase altogether, or at least experience it in a much less painful way. “People can gradually come to the realization,” Coyle says. “No one has to go through the sudden shock of awareness.”

But for most, figuring out how to adapt to living with a life-threatening disease is a difficult but necessary cognitive process, according to Lee. When patients do emerge on the other side of the existential crisis, she finds that many are better off because of it. These patients are more likely to have a deeper compassion for others and a greater appreciation for the life that remains.

To arrive there, they have to squarely face the fact that they’re going to die. “If you’re an avoidant person, and you don’t like to think about these things, that works better when life is going well,” Rodin says. “It just doesn’t work well in this situation because reality doesn’t allow it. It’s like trying to pretend you don’t need an umbrella or something, or it’s not raining, when it’s pouring. You can do that when it’s drizzling, but eventually, you have to live with the rain.”

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Learning To Advance The Positives Of Aging

By Judith Graham

[W]hat can be done about negative stereotypes that portray older adults as out-of-touch, useless, feeble, incompetent, pitiful and irrelevant?

From late-night TV comedy shows where supposedly clueless older people are the butt of jokes to ads for anti-aging creams equating youth with beauty and wrinkles with decay, harsh and unflattering images shape assumptions about aging. Although people may hope for good health and happiness, in practice they tend to believe that growing older involves deterioration and decline, according to reports from the Reframing Aging Initiative.

Dismal expectations can become self-fulfilling as people start experiencing changes associated with growing older — aching knees or problems with hearing, for instance. If a person has internalized negative stereotypes, his confidence may be eroded, stress responses activated, motivation diminished (“I’m old, and it’s too late to change things”) and a sense of efficacy (“I can do that”) impaired.

Health often suffers as a result, according to studies showing that older adults who hold negative stereotypes tend to walk slowly, experience memory problems and recover less fully from a fall or fracture, among other ramifications. By contrast, seniors whose view of aging is primarily positive live 7.5 years longer.

Can positive images of aging be enhanced and the effects of negative stereotypes reduced? At a recent meeting of the National Academies of Sciences’ Forum on Aging, Disability and Independence, experts embraced this goal and offered several suggestions for how it can be advanced:

Become aware of implicit biases. Implicit biases are automatic, unexamined thoughts that reside below the level of consciousness. An example: the sight of an older person using a cane might trigger associations with “dependency” and “incompetence” — negative biases.

Forum attendee Dr. Charlotte Yeh, chief medical officer for AARP Services Inc., spoke of her experience after being struck by a car and undergoing a lengthy, painful process of rehabilitation. Limping and using a cane, she routinely found strangers treating her as if she were helpless.

“I would come home feeling terrible about myself,” she said. Decorating her cane with ribbons and flowers turned things around. “People were like ‘Oh, my God that’s so cool,’” said Yeh, who noted that the decorations evoked the positivity associated with creativity instead of the negativity associated with disability.

Implicit biases can be difficult to discover, insofar as they coexist with explicit thoughts that seem to contradict them. For example, implicitly, someone may feel “being old is terrible” while explicitly that person may think: “We need to do more, as a society, to value older people.” Yet this kind of conflict may go unrecognized.

To identify implicit bias, pay attention to your automatic responses. If you find yourself flinching at the sight of wrinkles when you look in the bathroom mirror, for instance, acknowledge this reaction and then ask yourself, “Why is this upsetting?”

Use strategies to challenge biases. Patricia Devine, a professor of psychology at the University of Wisconsin-Madison who studies ways to reduce racial prejudice, calls this “tuning in” to habits of mind that usually go unexamined.

Resolving to change these habits isn’t enough, she said, at the NAS forum’s gathering in New York City: “You need strategies.” Her research shows that five strategies are effective:

  • Replace stereotypes. This entails becoming aware of and then altering responses informed by stereotypes. Instead of assuming a senior with a cane needs your help, for instance, you might ask, “Would you like assistance?” — a question that respects an individual’s autonomy.
  • Embrace new images. This involves thinking about people who don’t fit the stereotype you’ve acknowledged. This could be a group of people (older athletes), a famous person (TV producer Norman Lear, now 95, who just sold a show on aging to NBC) or someone you know (a cherished older friend).
  • Individualize it. The more we know about people, the less we’re likely to think of them as a group characterized by stereotypes. Delve into specifics. What unique challenges does an older person face? How does she cope day to day?
  • Switch perspectives. This involves imagining yourself as a member of the group you’ve been stereotyping. What would it be like if strangers patronized you and called you “sweetie” or “dear,” for example?
  • Make contact. Interact with the people you’ve been stereotyping. Go visit and talk with that friend who’s now living in a retirement community.

Devine’s research hasn’t looked specifically at older adults; the examples above come from other sources. But she’s optimistic that the basic lesson she’s learned, “prejudice is a habit that can be broken,” applies nonetheless.

Emphasize the positive. Another strategy — strengthening implicit positive stereotypes — comes from Becca Levy, a professor of epidemiology and psychology at Yale University and a leading researcher in this field.

In a 2016 study, she and several colleagues demonstrated that exposing older adults to subliminal positive messages about aging several times over the course of a month improved their mobility and balance — crucial measures of physical function.

The messages were embedded in word blocks that flashed quickly across a computer screen, including descriptors such as wise, creative, spry and fit. The weekly sessions were about 15 minutes long, proving that even a relatively short exposure to positive images of aging can make a difference.

At the forum, Levy noted that 196 countries across the world have committed to support the World Health Organization’s fledgling campaign to end ageism — discrimination against people simply because they are old. Bolstering positive images of aging and countering the effect of negative stereotypes needs to be a central part of that endeavor, she remarked. It’s also something older adults can do, individually, by choosing to focus on what’s going well in their lives rather than what’s going wrong.

Claim a seat at the table. “Nothing about us without us” is a clarion call of disability activists, who have demanded that their right to participate fully in society be recognized and made possible by adequate accommodations such as ramps that allow people in wheelchairs to enter public buildings.

So far, however, seniors haven’t similarly insisted on inclusion, making it easier to overlook the ways in which they’re marginalized.

At the forum, Kathy Greenlee, vice president of aging and health policy at the Center for Practical Bioethics in Kansas City and formerly assistant secretary for aging in the U.S. Department of Health and Human Services, called for a new wave of advocacy by and for seniors, saying, “We need more older people talking publicly about themselves and their lives.”

“Everybody is battling aging by themselves, reinforcing the notion that how someone ages is that individual’s responsibility” rather than a collective responsibility, she explained.

Underscoring Greenlee’s point, the forum didn’t feature any older adult speakers discussing their experiences with aging and disability.

In a private conversation, however, Fernando Torres-Gil, the forum’s co-chair and professor of social welfare and public policy at UCLA, spoke of those themes.

Torres-Gil contracted polio when he was 6 months old and spent most of his childhood and adolescence at what was then called the Shriners Hospital for Crippled Children in San Francisco. Back then, kids with polio were shunned. “It’s a real tough thing to be excluded,” he remembered.

His advice to older adults whose self-image is threatened by the onset of impairment: “Persevere with optimism. Hang in there. Don’t give up. And never feel sorry for yourself.”

Now age 69, Torres-Gil struggles with post-polio syndrome and has to walk with crutches and leg braces, which he had abandoned in young adulthood and midlife. “I’m getting ready for my motorized scooter,” he said with a smile, then quickly turned serious.

“The thing is to accept whatever is happening to you, not deny it,” he said, speaking about adjusting attitudes about aging. “You can’t keep things as they are: You have to go through a necessary reassessment of what’s possible. The thing is to do it with graciousness, not bitterness, and to learn how to ask for help, acknowledging the reality of interdependence.”

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Don’t want ‘heroic measures’ as part of your end-of-life care? Have the conversation

intubated patient in hospital, intubatation at intensive care unit room respiratory machine with oxygen ventilation monitor

By Allison Bond

[F]or one month this spring, my job as a senior resident in a large teaching hospital entailed racing around the hospital, managing patients who had rapidly become sicker; I wore running shoes every day. I also led every code, orchestrating a team of doctors, nurses, respiratory therapists, and pharmacists in an effort to resuscitate patients after their hearts had stopped. Some of the very sick patients under my care had do-not-resuscitate orders, but most didn’t. For them, my team and I provided whatever treatments we could.

One night, a colleague asked me to see Mr. S, a middle-aged patient with worrisome vital signs.

Arriving at his bedside, my colleague, Dave, and I saw a sluggish, pale man — he’d been in the hospital for almost a month with life-threatening infections. He answered my questions with brief but cogent statements until he suddenly stopped moving, his eyes staring blankly at the wall. I felt for a pulse. There wasn’t one.

“Call a code blue,” I said as calmly as I could, referring to the all-hands-on-deck alert that a patient’s heart had stopped. Dave began doing chest compressions, pressing rhythmically and firmly on Mr. S’s chest, taking the place of the heart in circulating blood throughout his body. I stood at the foot of the bed as the resuscitation team rushed in. A breathing tube wouldn’t pass down Mr. S’s windpipe, so a surgeon performed a cricothyrotomy, cutting a hole in the throat so we could insert a tube to help him breathe. As we paused chest compressions to check for a pulse, 15 wide-eyed faces looked to me to tell them what to do next. Although most in attendance had been involved in attempts to resuscitate patients before, the adrenaline-fueled brutality universal to codes is nearly impossible to get used to. Mr. S’s heart still wasn’t pumping, so we continued.

A few moments later, his arms flailed, thanks to the blood the chest compressions were sending to his brain and the rest of his body. The intern who had taken over for Dave paused in alarm. Another resident reassured her this simply meant her compressions were strong, and urged her to continue pushing.

After more compressions and injections of medicines to bring up the blood pressure and restart the heart, Mr. S’s began to beat faintly. Stable for the moment, we moved him to the intensive care unit. His prognosis was grave, so his family opted against future resuscitations. Later that day, his heart stopped again — that time forever.

We may have revived Mr. S, at least for a few hours, but I’m not sure we really helped him. Were our actions what he truly wanted?

Most people whose hearts suddenly stop don’t survive. Of the more than 200,000 Americans every year who go into cardiac arrest in the hospital, only about one-quarter make it out of the hospital alive. Of those, nearly 30 percent are seriously disabled.

Doctors often don’t adequately convey these grim outcomes; many patients remain falsely optimistic, tending to overestimate their chances of surviving a cardiac arrest. And few people understand what the resuscitation process truly entails, and how these efforts often lead to a painful, undignified death. Recent research also shows that patients and caregivers tend not to be on the same page when it comes to what level of disability or pain might be acceptable to a patient in the future, including after a code.

There’s got to be a way to close these gaps.

The solution starts with a conversation between doctors and their patients about what the end of life might look like. In an effort to make these discussions more common, Medicare now allows doctors to count such discussions, known as advance care planning, as a topic worthy of a doctor’s visit — and of reimbursement under a new billing code — if patients are open to it. Since this change took effect Jan. 1, 2016, nearly 575,000 patients and 23,000 providers have participated in such reimbursed conversations. Of course, there’s plenty of room for improvement: Although that’s almost twice as many conversations as predicted by the American Medical Association, it’s only 1 percent of all people enrolled in Medicare.

It may seem ridiculous to need to pay doctors to have these conversations. Yet given the myriad demands on doctors’ time, making this conversation reimbursable puts it on equal footing with measuring blood pressure, discussing an irregular heartbeat, and other topics long considered vital parts of a doctor visit. These conversations aren’t simply something that are nice to do; they are an incredibly important part of the way patients live and die.

Yet this initiative faces opposition by lawmakers whose fundamental misunderstanding of advance care planning risks seriously harming patients. One such example is the dangerously misnamed Protecting Life Until Natural Death Act, proposed by Rep. Steve King (R-Iowa) this past January. The bill calls for excluding end-of-life discussions from Medicare reimbursement, discouraging doctors from having these important conversations. That’s a problem because in the American medical system, the default position is to do everything possible to revive a patient unless he or she requests otherwise. And in reality, there’s nothing natural about a death prolonged by painful chest compressions, endless needle sticks, and a breathing tube forced down the throat, especially when such efforts are usually futile. In fact, some experts have proposed changing the term “do not resuscitate” to “allow natural death” to better reflect the realities of end-of-life care.

There’s no doubt heroic measures save some lives — but they aren’t what everyone wants. That’s why end-of-life discussions are essential for protecting patients and empowering them to make clear, well-informed decisions that let doctors do right by them. It’s absolutely vital that we keep these conversations going.

Complete Article ↪HERE↩!

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Top Websites Raising Death Awareness

By TalkDeath Team

[I]t’s hard to talk about death without going into the history of it. We’ve talked endlessly on this blog about the ways in which death has changed and evolved over history. We once knew death intimately: we washed the bodies, buried them ourselves and mourned openly and loudly. However today we are, as some scholars would say, largely a death denying culture. The tides are changing and while the chances of us handling the bodies of our loved ones are slim, our awareness of death and dying has been on the rise. Fuelled by popular books, movies, TV shows and personalities, death and death positivity are on the minds of many people. To help foster this much needed change, we present to you the top 8 websites promoting death awareness!

Top Websites Raising Death Awareness

8. Modern Loss

Modern Loss is a place to share the unspeakably taboo, unbelievably hilarious, and unexpectedly beautiful terrain of navigating your life after a death. Beginners welcome. This should say everything you need to know about this wonderful and informative website started by Rebecca Soffer and Gabrielle Birkner. Filled stories of grief, mourning and death acceptance, Modern Loss is a repository of stories, essays, resources and information about dealing with loss and picking yourself up again!

7. What’s Your Grief

Founded by mental health professionals with 10+ years of experience in grief and bereavement, WhatsYourGrief.com is an excellent resource for anyone dealing with the loss of a loved one. Grief is a complex emotion but one that is completely natural. Rather than try and rush of process of bereavement, WYG encourages their readers to work through their feelings in positive, long lasting ways. Well written blogs, grief resources, how-to’s and more.

6. Connecting Directors

Interested in a first hand account of life in the funeral business? Connecting Directors is a great place to start. It is a collection of news, blogs, articles and marketing information tailored to the funeral profession. While some of it may not be relevant to your interests, there is a lot of great information there(plus we are featured there quite often **cough cough**). Started by Ryan Thogmartin, this website reaches thousands of death professionals and gathers articles from a number of sources.

5. Death Cafe

We couldn’t be bigger fans of Death Cafe! While the internet portion of Death Cafe is only secondary to the actual events, it is a great place to connect with a death positive community. Death Cafe’s are informal meetings that happen all over the world where people get together and talk about life, death and everything in between. Chances are there is a local Death Cafe chapter in your city(and if not, you should probably start one). We have been to two events held by our local Death Cafe and they were incredible! Expect tears, laughter and the unexpected.

4. Death & the Maiden

A newcomer relative the rest on our list, Death Maidens is important for several reasons. First, it is connected to growing death positive/death conscious movement. Second, it highlights the important, historical and growing role that women have played vis-a-vis death and dying. We often forget that women before the 20th century played vital functions in death. They washed and dressed bodies, they were the public face of mourning and they knew death in a way that few of us do today. We are really looking forward to some great and informative content!

3. Confessions of a Funeral Director

It would be no exaggeration to say that Caleb Wilde is almost a household name. People who are in no way connected to the funeral profession know his website and share his content. A 6th generation funeral director and prolific blogger, Caleb started Confessions of a Funeral Director as a window into the death profession. His blog runs the gamut from humour, memes, short stories, advice and of course, secrets from the world of funeral directors. A must read for anyone interested in death awareness!

2.  The Order of the Good Death

Founded and run by Caitlin Doughty, The Order has grown to become much more than a simple blog/website raising death awareness. The order now hosts dozens of members from academics, morticians, funeral directors and artists and is filled with both written content and video content. Caitlin’s well known YoutTube channel, Ask a Mortician, is an informative and hilarious video series. The Order now also runs the largest death positive meet-up in the world, Death Salon. Be careful though as you could get lost for hours on The Order’s website!

1. Death Reference Desk

The Death Reference Desk is run by professor John Troyer, Deputy Director of and a Death and Dying Practices Associate at the Centre for Death and Society at the University of Bath and Librarians Meg Holle & Kim Anderson. Pulling from their knowledge and experience, the goal of the DRD is to inform the casually interested and morbidly curious alike about All Things Death: the bizarre, the batty and the beautiful, from interesting blogs and recommended books to commentary and analysis of death in the news. This website is an incredible resource for anyone interested in almost anything related to death and dying and best of all, you can ask John, Meg & Kim any question and they will answer them on their website! 

Complete Article ↪HERE↩!

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What Is Day Of The Dead, And What Can It Teach You About The Grief Process?

The Mexican holiday has nothing to do with Halloween, but lots to do with normalizing death.

By Kelly Burch

[T]his summer, it seemed like death was everywhere. In the course of a few short weeks I had a miscarriage and watched my dog be struck and killed as we walked down our dead-end road. Two weeks later, my aunt unexpectedly passed away in her sleep.This trio of tragedies would have left anyone reeling, but I realized that I was hurting deeply in part because I didn’t have an adequate vocabulary to talk about death. This was especially evident when I tried to answer questions posed by my 3-year-old daughter, who kept inquiring about our dog and her great aunt for months. I wanted her to understand that death was normal and even expected, but I was having a hard time remembering that myself. (Here are 5 reasons you should talk about death, even if you don’t want to.)

And then, by chance, I stumbled upon information about Dia de Los Muertos—Day of the Dead—and I was captivated. Day of the Dead is most commonly celebrated in Mexico, although other South American countries celebrate as well. It’s believed that spirits arrive on October 31 and leave on November 2. November 1, however, is the main day of celebration, and the day most commonly referred to as Day of the Dead.

Most Americans, if they have even heard of the holiday, associate it with Halloween and colorfully painted skulls. But despite the coincidental timing, it’s really a fun-filled but complex acknowledgement of death as part of life, and it combines the Catholic All Saint’s Day with indigenous traditions and beliefs.

People who celebrate it believe that, on and around November 1, spirits can easily pass between our world and the afterlife. Families might set extra places at the table, exchange stories, and prepare gifts for their deceased loved ones. But mostly the day is about fun, since many people believe spirits would be insulted if they came back to find everyone in mourning.

This seemed vastly different from how many Americans view life, death, and grieving, so I wanted to learn more. It turns out there’s a whole lot that we could all learn from Dia de Los Muertos about the grief process.

Death is a part of life.
I’ve always thought of life and death as opposites. However, Day of the Dead celebrates death as a part of life, rather than the end of it. And recognizing that life and death go hand-in-hand can ease the grieving process, says Kriss Kevorkian, PhD, an expert on grief.

“Day of the Dead connects life and death in a way that, generally speaking, Americans don’t often do,” says Kevorkian. People who celebrate it realize that their loved ones are still present in their lives, even if they aren’t physically there. “You’re not taught to believe that once your loved one dies that’s it.” By normalizing death, the grieving process also becomes normalized and less of something to fear.

A relationship doesn’t end just because someone has died.
“The first chapter of grieving is really recognizing that someone is gone from this world, and your relationship with them is changing” rather than ending, says Tracee Dunblazier, a spiritual empath and grief counselor based in Los Angeles. Whether you believe like Dunblazier does that it’s possible to communicate with the dead, or you merely believe in keeping them alive through memories, recognizing that some sort of relationship can be maintained can be very healing.

“When you think of death as final, you’re looking from a specific sliver of a perspective that does not show the whole story,” Dunblazier says.

Grief doesn’t follow a strict timeline.
When someone you love dies, everyone expects you to struggle—but only for a little while. The problem, of course, is that people don’t heal on schedule, and sometimes it takes months or even years to “move on,” especially after someone passes unexpectedly. This idea is known as complicated grief, and Western cultures usually view it as something to treat (perhaps with therapy and/or antidepressants).

Cultures that celebrate Day of the Dead, however, don’t try to force a sense of closure. Having a holiday that acknowledges the presence of the dead can make complicated grief easier to address, particularly on November 1, when the spirits are thought to be nearby. Believing that your loved ones can hear and understand you on this holiday means that you have the chance to say anything that was left unsaid before they died, says Merrie Haskins, a counselor and psychotherapist based in Minnesota.

Funerals (or at least memorials) can be fun.

In America, death is a very somber event. We wear black to funerals and talk in hushed tones. However, anyone who has ever listened to a lovingly-delivered eulogy knows that smiles and laughter are an important part of the grieving process. Although South American cultures have sad funerals as well, they incorporate happiness and fun into Day of the Dead to honor their loved ones in a more spirited way. That’s something that’s not common in American culture. (See how these 3 alternative therapies can help heal your grief, according to Prevention Premium.)

“We don’t usually have a celebration with levity, happiness, song, and dance,” says Shoshana Ungerleider, MD, chair of the End Well Symposium, an organization that focuses on quality end-of-life care. “People who celebrate the Day of the Dead take this lightness very seriously, due to the belief that spirits who come to visit would be insulted if they found everyone in mourning.”

Haskins suggests adopting that focus on fun as a way to celebrate your loved ones. For example, each year she attends an Academy Award viewing party given in honor of a particular deceased family member who used to love watching the awards show. “That makes it fun for us to remember her and for new people to get to hear about how wonderful she was,” she says.

Stop fearing death, and your own death will be better.
Everyone dies, but many people are too terrified to think about it—to their detriment. “In America, we often shy away from talking about death, loss, and grief. As a physician, I see many gravely sick people in the hospital who have never considered what they want at the end of life,” Ungerleider says. As a result, their final days can be stressful for them as well as their families, because everyone is struggling to make decisions that align with their beliefs while simultaneously dealing with the grief of imminent loss.

A celebration like Day of the Dead can make people think about their own death and plan for what they want at the end of their lives. “By accepting and discussing openly that death is a part of life, you make sure you receive the care you want.”

Complete Article ↪HERE↩!