Category: Death Education

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Learning to talk about death and dying should start early in doctors’ careers

Hilary thinks people can talk about their end of life wishes more easily with someone who is not family

By Junaid Nabi

When I started medical school, I fully expected to learn how the nervous system works, why heart attacks happen and what to do to stop them, and how the immune system sometimes turns against the body and causes autoimmune diseases. One of the things I needed to learn but didn’t was how to talk with people about death and dying.

To fill that gap, I enrolled in a course at Harvard Medical School on communication strategies during end-of-life care. It was designed to help budding physicians understand how spirituality, end-of-life care, and medicine interact. What I learned surprised me.

I found out that I wasn’t alone in feeling that I was ill-prepared for having effective end-of-life conversations. Physicians in general tend to be particularly limited in their ability to discuss issues such as how long patients will survive, what dying is like, or whether spirituality plays a role in their patients’ last moments.

At first glance, physicians’ poor understanding of death and the process of dying is baffling, since they are supposed to be custodians of health across the lifespan. Look deeper, though, and it may reflect less the attitudes of physicians themselves and more the system that nurtures them. After all, we train vigorously on how to delay the onset of death, and are judged on how well we do that, but many of us get little training on how to confront death.

At one of the seminars that are part of the course, a young man was asked about how he felt during the final days of his mother’s struggle with cancer. “Pain is not suffering if it has a meaning; if it doesn’t, pain and suffering are the same thing,” he said.

That juxtaposition of pain and suffering struck me as an important reminder of the vital role physician communication plays from a patient’s point of view. I realized that a transparent communication strategy can ease suffering and make pain more bearable.

In the process of my coursework, I also realized that significant communication barriers exist between physicians and patients to discussing end-of-life care. When physicians aren’t trained about how to approach patients and their families regarding end-of-life decisions, it’s difficult, if not impossible, to provide the care they want and need.

In one survey, nearly half of the medical students and residents who responded reported being underprepared to address patient concerns and fears at the end of life. About the same percentage said that “dying patients were not considered good teaching cases.” In other words, patients on palliative care with no need of further interventions were seen as offering little in the way of imparting clinical knowledge — even though they might have been wonderful cases for learning more about death and dying.

It’s still unclear whether such limitations arise from personal difficulty talking about this sensitive topic, an inadequate medical curriculum, or a lack of training during residency on how to communicate with terminally ill patients.

When a robust rapport between patient and physician is lacking, or when a physician hasn’t taken enough time to lay out all the options, hospitals tend to follow the “standard” protocol: patients — often at the insistence of family members — are connected to several intravenous lines and an intubation tube, or put on life-support machines, all because the patient or the family never had a clear conversation with the medical team about the severity of the disease and its progression.

That’s not how physicians prefer to die. In a famous essay, an experienced physician wrote that most doctors would prefer to die at home, with less aggressive care than most people receive at the ends of their lives. They understand that such efforts are often futile and take away from the precious time that could be spent in the company of family and friends.

Intensive management of patients with poor prognosis can result in severe emotional damage to patients and their family members. They also have significant policy implications: On average, 25 percent of Medicare payments go to patients in the last year of life, with one-third of that spent in the last month, often on clinical services with negligible benefits.

Physicians certainly share some of the blame for these gaps in communication. But we need to be aware of the role health care systems play in shaping end-of-life interactions. Over-treatment is often encouraged, and with little guidance or feedback on how to navigate end-of-life care, physicians can feel vulnerable to malpractice lawsuits. Due to ever-changing regulations, most interns, residents, and attending physicians are forced to spend more and more time typing into their patients’ electronic health records and less time sitting with their patients, talking with them and understanding what they want and need at the ends of their lives. The issue of resource allocation may also play a role. Medical centers often suffer from a shortage of physicians, and struggle to balance comprehensive teaching with quality patient care.

One way of addressing these deficiencies is to incorporate into the medical school curriculum required courses in which students are provided space and time to reflect upon the limitations they face when engaging with patients with terminal diseases. Some schools have already started this process, albeit as elective courses. Senior physicians also need to play more active roles as mentors, guiding younger doctors on how to approach these complicated situations.

In a book written as he was dying from lung cancer, Dr. Paul Kalanithi said this: “Doctors invade the body in every way imaginable. They see people at their most vulnerable, their most sacred, their most private.”

Physicians have a responsibility to initiate and maintain an open channel of communication with each patient, understand and address the values that he or she holds dear, and talk frankly about the prognosis of his or her disease. If they lack the skills to talk openly about dying and death, one of the most sacred and private transitions, they do their patients a disservice and possibly prevent them from receiving the best possible end-of-life care.

Complete Article ↪HERE↩!

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Death Doula: We Are Segregated, Even After We Die


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

By Dylan Allswang

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

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

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

This interview was edited for clarity and length.

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

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

DA: Who are some of your usual clients?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article ↪HERE↩!

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Talking to your child about death

You need not worry excessively about what to say. According to one study, children just want to “hear the truth expressed in kind words.”

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Death is often a sore subject and one that adults like to avoid talking about. But because it is inevitable, at some point we are going to have to talk to our children about it.

Sometimes their own curiosity may force us to broach the subject, like when your six-year-old child innocently asks if you’re going to die someday. What would your response be? Would you try to invent something in order to spare them any worry or would you tell them the truth in a way that they would understand? While most parents find it difficult to talk about death and dying with their children, the best way to go is by telling them the truth in a way they best comprehend.

In fact, children do think about death. Some even play games in which someone pretends to die. Therefore, death should not be considered a taboo subject, and you should welcome any questions your child may have about it. By occasionally talking openly about death, you help your child learn how to cope with the loss of a loved one.

Talking about death will not cause your child to have morbid thoughts. Rather, it will help him or her alleviate their fears. However, you may need to correct some misunderstandings. For example, some experts say that many children under the age of six do not view death as final. In their games, a child will be “dead” one moment and “alive” the next.

When they get a little older, however, children begin to grasp the seriousness of death—a fact that may cause them to have questions, concerns, or even fears, especially if a loved one has died. Therefore, it is vital that you discuss the subject. Several mental-health experts believe that a child will develop anxieties related to death if he or she feels that they are not allowed to talk about this subject at home.

Here are some tips to guide you when the subject pops up:

Take advantage of opportunities to talk about death: If your child sees a dead bird on the side of the road or if a beloved pet dies, use simple questions to encourage him to talk. For example, you could ask: “Does a dead animal suffer? Is it cold or hungry? How do you know that an animal or a person is dead?”

Do not hide the truth: When an acquaintance or a relative has died, avoid using confusing euphemisms such as “He has gone away.” Your child might wrongly conclude that the deceased will soon return home. Instead, use simple and direct words. For example, you might say: “When Grandma died, her body stopped working. We can’t talk to her, but we will never forget her.”

Reassure your child: He or she might think that their actions or thoughts caused someone’s death. Instead of just saying that they are not responsible for what happened, you could ask, “What makes you think that it is your fault?” Listen carefully, without belittling their feelings. Also, since a young child might think that death is contagious, assure them that it is not so.

Draw out your child: Talk freely about loved ones who have died, including relatives whom your child has never met. You might evoke fond memories of an aunt, an uncle, or a grandparent and relate amusing anecdotes. When you openly discuss such people, you help your child understand that they need not avoid talking or thinking about them. At the same time, do not force your child to talk. You can always broach the subject later, when you feel the time is right.

You need not worry excessively about what to say. According to one study, children just want to “hear the truth expressed in kind words.” Be assured that a child will usually not ask a question unless he or she is ready to hear the answer.

Complete Article ↪HERE↩!

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Patients with COVID-19 shouldn’t have to die alone.

Here’s how a loved one could be there at the end

By &

While the number of new COVID-19 cases in Victoria continues to trend downwards, we’re still seeing a significant number of deaths from the disease.

The ongoing outbreaks in aged care, and the fact community transmission is continuing to occur, mean it’s likely there will be many more deaths to come.

As a result of strict infection control measures restricting hospital visitors, tragically, many people who have died from COVID-19 have died alone. Family members have missed out on the opportunity to provide comfort to the dying person, to sit with them at their bedside, and to say goodbye.

But it doesn’t have to be this way. We have cause to consider whether perhaps we could do more to preserve the patient-family connection at the end of life.

Who can visit?

There’s some variation between Victorian health-care facilities in how visitor restrictions are applied. Some allow visitors to enter hospitals for compassionate reasons, such as when a person is dying. But visitors are not permitted for patients with suspected or confirmed COVID-19.

The latest figures show 20 Victorians are in an intensive care unit (ICU) with 13 on a ventilator. This indicates their situation is critical.

Despite hospitals, and particularly ICUs, being adequately prepared and resourced to provide high-level care for people diagnosed with COVID-19, patients will still die.

Family-centred care at the end of life in intensive care is a core feature of nursing care. So in the face of this unprecedented global pandemic, we realised we needed to navigate the rules and restrictions associated with infection prevention and control and find a way to allow families to say goodbye.

Our recommendations

We’ve published a set of practice recommendations to guide critical care nurses in facilitating next-of-kin visits to patients dying from COVID-19 in ICUs. The Australian College of Critical Care Nurses and the Australasian College for Infection Prevention and Control have jointly endorsed this position statement.

The recommendations are evidence-based, reflecting current infection prevention and control directives, and provide step-by-step instructions for facilitating a family visit.

Some of the key recommendations include:

  • family visits should be limited to one person — the next-of-kin — and that person should be well
  • the visitor must be able to drive directly to and from the hospital to limit exposure to others
  • they should dress in single-layer clothing suitable for hot machine wash after the visit, remove jewellery, and carry as few valuables as possible
  • on arrival, staff should prepare the visitor for what they will see when they enter, what they may do, and what they may not do (for example, it would be OK to touch your loved one with a gloved hand)
  • a staff member trained in the use of personal protective equipment (PPE) should assist the visitor to put on PPE (a gown, surgical mask, goggles and gloves) and after the visit, to take it off, dispose of it safely and wash their hands
  • where possible, the visitor should be given time alone with their loved one, with instructions on how to seek staff assistance if necessary.

We also highlight the importance of intensive care staff ensuring emotional support is provided to the family member during and immediately after the visit.

Tailoring the guidance

It’s too early to know the full impact a loved one’s isolated death during COVID-19 may have on next-of-kin and extended family. But the effect is likely to be profound, extending beyond the immediate grief and complicating the bereavement process.

These recommendations are not meant to be prescriptive, nor can they be applied in every circumstance or intensive care setting.

We encourage intensive care teams to consider what will work for their unit and team. This may include considerations such as:

  • whether there are adequate facilities in which the visitor can be briefed and don PPE
  • whether social distancing is possible with current unit occupancy and staffing
  • whether an appropriately skilled clinician is available to coordinate and manage the family visit
  • each patient’s unique clinical and social situation.

Rather than just using a risk-minimisation approach to managing COVID-19, there’s scope for some flexibility and creativity in addressing family needs at the end of life.

Complete Article ↪HERE↩!

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Pa’s Smile

Jaimal Yogis’s dad explained his final wishes: “I’ve gotten so much from Buddhism for good living, I’m not going to pass up their tips for good dying.”

by

The first and only time I bought dry ice, the grocery store clerk asked if I was going camping. “No,” I muttered, then managed to stop myself from saying it was for a body. The ice really was to lay my father’s corpse on.

An air force colonel who was skeptical of organized religion, my father, who we call Pa, wasn’t sure the Tibetan Buddhist tradition of leaving the dead undisturbed for three days was necessary. But, as he said after being diagnosed with late stage lung cancer, “I’ve gotten so much from Buddhism for good living, I’m not going to pass up their tips for good dying.”

As if summarizing Socrates in his famous pre-execution speech, Pa often said he had no idea where he was going. ‘If the lights go out, it’ll be a good rest,’ he’d say. ‘And if there’s more, it’ll be a great adventure.’

These three days are not unique to Tibetan, or more accurately, Vajrayana Buddhism. Irish wakes often last two or three days while a soul departs, and Jewish Midrashic texts say a soul hovers over the body for three days (or seven) until the body is buried. The idea behind the three days in Vajrayana Buddhism is that as the breath and heart stop, our gross level of consciousness dissolves but more subtle levels of consciousness remain in the body for up to about seventy-two hours. During that time the subtlest stream of consciousness is said to leave, a transition known to go more smoothly if the body can chill—in Pa’s case literally since under California law dead bodies have to be kept on ice.

“Otherwise they tend to smell like dead bodies,” our hospice nurse informed us.

“Right,” I nodded. “And where do we get the ice?”

“Grocery store.”

“Of course.”

As if summarizing Socrates in his famous pre-execution speech, Pa often said he had no idea where he was going. “If the lights go out, it’ll be a good rest,” he’d say. “And if there’s more, it’ll be a great adventure.” Still, he’d reasoned his way toward the three-day death plan. In addition to reading up on how Vajrayana Buddhists use strict tests to prove they’ve found reincarnations of former teachers, he’d read the work of doctors like Sam Parnia of NYU Langone Health. Dr. Parnia has meticulously catalogued data on people who’ve died clinically, sometimes for hours, before being resuscitated. These briefly dead folks often report vivid dreams after waking, sometimes ones in which they correctly recount what doctors had been saying—“Going to the game later?”—when the patients had no heartbeat. “That’s enough evidence for me,” Pa said. “Don’t poke or prod me for a few days.”

As the actual death part of the three-day death plan approached, we—his family—wondered if having Pa’s cold body steaming on carbon dioxide in the bedroom might intensify our grief. And might it be a little creepy? It turned out to be just the opposite.

Death leaves you in a dreamy shock. You don’t know if you should wail or drive all night to Mexico or finally get to writing your own will. When Pa stopped breathing on a warm summer evening, dressing him in his aloha shirt and favorite Christmas socks, then adorning his room with flowers, was just the beautiful busy work our reeling minds needed. Reading Jane Hirshfield’s “It Was Like This: You Were Happy,” a special request from Pa, while he was actually there in the room felt more heart opening than reading it again while scattering his ashes. And as we sat with Pa each of the three mornings while reading him The Tibetan Book of The Dead—a text meant to help us navigate the space between lives—it felt as if we were on a kind of spiritual tour bus with him, visiting the realms where awakened beings are born from lotuses and truths are whispered on the breeze.

Perhaps most surprising was how much the three-day death plan helped before death. As Pa was starting to show signs of getting close to the end, my sister Ciel and I asked if he would like to hear a Medicine Buddha ceremony that is often done for the sick and dying. “You don’t have to bother with that,” Pa said, continuing his usual stubborn quest to keep us from doting. But we argued that the ceremony would be a good warm-up for when he was down for the count and we were reading The Tibetan Book of the Dead, which Tibetans actually call The Great Liberation for Hearing in the Bardo. Since this made it sound like the reading was for us, Pa agreed.

We sat around his bed, switching back and forth between botching the Tibetan chanting and reading the English translation. The ceremony took about an hour, and we thought ­­Pa had slept through it. But at the end, he sat up with tears in his eyes. “I am so honored you did that for me,” he said. “And now I’m going to get up and see the sky one more time.”

“We’ll get the wheelchair,” Pa’s wife, Margaret, said reasonably.

“No,” he said, “I’m going to walk.”

Pa had already fallen behind the toilet in such a precarious position we’d needed the fire department to come dislodge him, and he’d been bedridden for days now. But charged up by the chanting, Pa managed to lumber slowly to the back porch, rasping with every breath.

We opened the door. Pa turned his face up bracingly to the blue. He looked so pale, I half expected him to croak right there. Instead, he then looked down at a few small stairs he would have to navigate in order to be fully outside. “Take me back,” he whispered. “I want an easy death. Not to fall off the damn steps.”

We laughed. Finding humor in the face of hardship was one of Pa’s great gifts. But we hadn’t heard zingers with gusto like this for a few weeks. And I think, in addition to the power of the ceremony itself, knowing that his family would be there for three full days—botching more Tibetan chants around him—was a great comfort, a lightening.

Philosophical aspects of the plan were helpful too. In hospice Pa occasionally felt unsure of where—even who—he was. One day he called himself King Henry and my aunt the queen. “You wouldn’t believe what’s happening,” he told me. “It’s like I’m disappearing.” This was scary, but Buddhist wisdom for conscious dying gave Pa a place to put his fears.

According to Vajrayana Buddhists, our gross consciousness is where we construct our version of reality through our senses. This construction is like a video game in our heads in which we are the most important character, the one whose suffering matters most, the one who should win all the gold coins because, as our senses (falsely) tell us, we exist separately from the rest of reality. The more we let go of this illusory separation from others, the more room there is to experience our true blissful and compassionate nature. Vajrayana Buddhist teachers say this true nature is most easily accessible at death because, as opposed to meditative glimpses beyond the veil, in death the gross levels of consciousness drop away automatically. So, when Pa was scared or disoriented, we could remind him that losing a mere idea of himself was not just natural, it was part of spiritual awakening.

In his last hours, Pa’s brow was furrowed and his body appeared tense. He looked like he was trying desperately to remember something. Ciel, Margaret, and I were taking turns sitting with him, and fittingly it was just when Margaret was singing him Nat King Cole’s, “When I Fall in Love,” a song they’d danced to on West Cliff Drive above the sea, that Pa finally let go. As he did, his brow smoothed completely, making him look instantly younger. A distinct half-smile appeared on his lips. A Buddha smile. And whether it was Pa’s newfound bliss, rigor mortis, or some combination of both, that smile remained perfectly serene for all three days.

Complete Article ↪HERE↩!

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Relearning how to die

By Richard Smith

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article ↪HERE↩!

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How Death Doulas Have Adapted End-of-Life Care Amid COVID-19

By Ilana Kaplan

Christy Marek, a certified end-of-life doula, has seen firsthand the added stress that terminally ill individuals have had to endure because of the pandemic. One client had been living at home but decided that her health was putting too much added stress on her family. “She had considered going into a facility just so that she could get the level of support that she needed as she was becoming bed-bound,” says Marek, who is based in Minnesota. But the client found herself at a crossroads: she had to choose between the possibility of dying alone in a facility (upon admission, patients were required to quarantine alone with no visitation for two weeks) or continuing to rely on family care while spending the rest of her time at home.

Marek made several phone calls to facilities to advocate for her client. “I said, ‘What if she doesn’t have two weeks? What are you going to do?’” Marek recalls. Ultimately, her client ended up getting 24-hour home care, but it wasn’t her first choice. “People are then dying at home because the last thing they want is to go into a facility,” says Marek. “They don’t have time to quarantine for the amount of time that [facilities] need.”

For centuries, doulas have been assisting with childbirth, providing emotional, physical, and educational support during pregnancy, labor, and delivery. But there aren’t just doulas for the birthing process: over time, both officially and unofficially, end-of-life doulas have emerged to help individuals with palliative care and support their families through the grief that comes with losing someone. A 2017 study found that women who had continuous support during their labor—whether from a nurse, doula, or partner—reported a more positive birth experience. It seems likely that the same kind of constant emotional support from a death doula would have an equally positive effect on processing the grief around passing.

In a year when death and grief have become a constant, the palliative care process has reached a new level of complexity amid COVID-19. End-of-life doulas have always strived to be a support system for those who are terminally ill, but in 2020 the people who take on that responsibility have been challenged to think outside the box when it comes to caregiving. They’ve had to help their dying clients make unimaginable choices between risking virus exposure and spending their last days alone. They’ve also had their presence questioned at a time when their skills could be most valuable.

Alua Arthur, an end-of-life doula and founder of Going With Grace, has been trying to encourage clients to focus on what they do have control over, even when the world feels full of uncertainty. “Because they’re getting close to the end of life, I remind them that there are some things that are still firmly within our control,” says Alua. “[I have them] look at what it is that we’re trying to control and where the control actually exists. She has her clients work on “cultivating presence and practicing adaptability,” along with “exercises, like finding our feet and consistently planting our feet firmly on the ground [and] becoming present.”

Communication and connection have been the most challenging variables for doulas and their clients. Many in-person meetings with clients and their families have gone digital. For Arthur, FaceTime and Zoom have become essential for helping with clients’ health-related questions when she can’t physically be with them. “Family members [can] scan body parts through a video call, show me and say, ‘Does that look normal?’ Or, ‘She’s breathing like this, does that sound normal?’ And [they] hold the phone up [for me to hear] somebody’s breathing pattern.” That way, even if Arthur is not with the client, she can make an informed decision as to whether they should call the doctor. Arthur has also hosted webinars to help people experience grief and facilitate rituals for transitioning. She has helped coordinate with funeral homes to livestream funerals for clients so that more family members could participate.

For clients who are in assisted-living communities or the hospital, nurses often act as a bridge on behalf of doulas. Janie Rakow, a recently retired end-of-life doula and former president of the International End of Life Doula Association (INELDA), has been raising money for baby monitors for local hospitals so that doulas can keep in touch with their clients, talk to social workers and chaplains, and even play music. “Nurses and medical staff have been integral in helping doulas make sure they connect with families and play music until the end,” she says.

Omisade Burney-Scott, a full-spectrum doula based in North Carolina, has been encouraging her clients to “think about how you show up energetically when you can’t show up physically.”

“Because I’m a Southern Black woman, there’s so much ritual involved with death and dying in the South with Black folk,” says Burney-Scott. “It’s beautiful, it’s complex, but it’s highly ritualized.” Grieving has generally involved a lot of face-to-face interactions and “people coming to your house dropping off casserole after casserole,” so during the pandemic Burney-Scott has tried to help her clients try to find alternate activities that will create a similar feeling of closeness and community. One client with relatives spread throughout the United States and Europe had lost two family members and was looking to honor the deceased. “My question for this person was, ‘Where are they from? What are the things that are meaningful for your family? What are the things that you all love to do together?’ And one of the things that we talked about was food and how much food is a core part of their family culture.” Since their family already did a Zoom session every Sunday, Burney-Scott suggested that they make a dish that everybody in the family loves for their meeting. “Then, when you come to the Zoom call, y’all eat together and honor this person or these people who’ve made their transition,” Burney-Scott says.

End-of-life doulas also help their clients navigate and find support within a racist healthcare system. A 2017 study from Academic Emergency Medicine on implicit bias revealed that White patients were favored, especially by White doctors. Coronavirus has been two times as likely to kill Black and Latino people than White people. In June, Arthur was a panelist for a talk where she and other Black death doulas, along with grief and funeral professionals, discussed the implications of a “good death” in a racist society. More than 2,000 people signed up for the webinar, which touched on the “implicit bias that exists against Black workers, Black deceased and patrons of their families.” “I don’t know how many times I’ve heard people say that racism or race should not be a factor in how we care for people at the end of the day,” says Arthur. “But in order for us to effectively care for people in the afterlife, we have to honor the reality of their lived experience. That includes race, their physical ability, [their] ability to hear, color, sexual orientation, gender identity, and every little part of themselves. We’re honoring a life, so we have to look at the whole life.”

Burney-Scott has been helping members of the Black community process continued grief after the killings of George Floyd, Breonna Taylor, and Ahmaud Arbery and amid continued police brutality and the Black Lives Matter movement. “Grief is not an emotion that is mutually exclusive to physical death,” says Burney-Scott. “So what I have found is that there’s been an unrelenting nature to the grief that we’re all experiencing right now with the pandemic, with COVID-19, but also with racism and white supremacy.” Burney-Scott has been looking to her spiritual background to provide support for others. “My role in that has been to provide instructions and support around how to create your own altar, how to open your space and yourself up to either meditation, prayer, or conversation with your ancestors to ask for support for these families who have experienced the unimaginable,” she says.

More than ever, it’s been necessary for doulas to focus on possibility and opportunity as a way to keep their clients comforted and connected. Still, the challenges of limited physical interactions and restrictions due to COVID-19 have transformed their jobs. In the meantime, end-of-life doulas are doing everything they can to be there for their clients.“We support and empower,” Arthur says. “Why? Because we don’t want people to feel alone in the process. How? We show up.”

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