Category: Talking about death

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‘Not Priests, Nor Crosses, Nor Bells.’

The Tragic History of How Pandemics Have Disrupted Mourning

By Olivia B. Waxman

On a recent Monday in a New Jersey cemetery, social worker Jane Blumenstein held a laptop with the screen facing a gravesite. A funeral was being held over Zoom, for a woman who died of COVID-19. It was a brilliantly sunny day, so a funeral worker held an umbrella over Blumenstein to shield the laptop from any glare, as synagogue members and family members of the deceased sang and said prayers.

The experience was a “surreal” one for Blumenstein, who is a synagogue liaison at Dorot, a social-services organization that works with the elderly in the New York City area. “I felt really privileged that I could be there and be the person who was allowing this to be transmitted.”

The roughly 20-minute ceremony was one of countless funerals that have taken place over Zoom during the COVID-19 pandemic. As authorities limit the size of gatherings — and hospitals limit visitors in order to prevent the spread of the novel coronavirus — loved ones have been unable to gather for traditional mourning rituals in the aftermath of a death, so it has become the norm for those who die to do so without their families by their sides, able to say goodbye only virtually, if at all.

The rising death toll has overwhelmed funeral homes and cemeteries, further limiting what is possible. Across religions and around the world, end-of-life traditions have been rendered impossible: stay-at-home orders have stopped Jewish people from sitting shiva together; overwhelmed funeral services have meant Islam’s ritual washing of the body has been skipped; Catholic priests may have had to settle for drive-through funerals, in which the coffin is blessed in front of just a few immediate family members.

The effects of COVID-19 will be felt for many years to come, but those who have lost loved ones are feeling those effects immediately — and, for many, their pain has been exacerbated by the inability to say goodbye. The horror of these rushed goodbyes may be looked back on as a defining feature of the COVID-19 pandemic. But, as the tragic history of pandemics reveals, it is something that disease has forced human beings to struggle with throughout history.

For example, during a 1713 plague epidemic in Prague, a shortage of burial supplies heightened the pain of rushed burials. The emotional toll is evident in a Yiddish poem written shortly after the outbreak, translated for TIME by Joshua Teplitsky, professor of History at Stony Brook University, who is writing a book about this period. At the sight of the dead being carried away day and night, “all weep and wail!,” the poem says. “Who ever heard of such a thing in all his life?” The poem describes people working around the clock and through the Sabbath to saw planks for coffins and sew shrouds.

In one 1719 book, a rabbi recalls counseling a man who was anxious about burying his plague-stricken father in the local cemetery because of a government requirement to coat the body in a chemical to accelerate decomposition. He asked the rabbi if it would be more respectful to bury his father in a forest far outside of the city. The rabbi told the man to follow the rules, likely thinking that “if the body gets buried in the woods, in a very short time, it will be lost, and if it’s in the cemetery, the rabbi is expecting that when this plague passes, visitors will go pray and pay their respects,” says Teplitsky.

Indeed, Teplitsky found a prayer printed circa 1718-1719 that he believes women may have recited while walking around a cemetery years after the epidemic, asking the dead for forgiveness for the lack of a traditional funeral and burial five years earlier.

Centuries later, during the 1918-1919 flu pandemic, Italians were likewise thrust into a world in which funerals had to take place quickly, without ceremonies or religious rites. According to research by Eugenia Tognotti, an expert in public health and quarantine, and a professor of history of medicine and human sciences at the University of Sassari, Italy, many expressed horror at hurried burials in letters to friends and relatives, which are preserved at the Central State Archive in Rome. “The more common lamentations are: ‘Not priests, nor crosses, nor bells’ and ‘one dies like an animal without the consolation of family and friends,’” Tognotti told TIME. Another woman wrote to a relative in Topsfield, Mass., “Here [in Italy] there is a mortal disease named Spanish flu: the sick die in four or more days, a bucket of lime is thrown over the dead bodies, and then four workers take them to the graves like dogs.”

The horror was similar in the U.S., especially in Philadelphia, an epicenter of the pandemic. Columba Voltz was an 8-year-old daughter of a tailor back then, who said that funeral bells tolled all day long as coffins were carried into a local church for a quick blessing and then carried out a few minutes later, according to Catharine Arnold’s Pandemic 1918: Eyewitness Accounts from the Greatest Medical Holocaust in Modern History. “I was very scared and depressed. I thought the world was coming to an end,” Voltz recounted.

Inside one such house, Anna Milani’s parents laid her 2-year-old brother Harry to rest with what they had on hand:

There were no embalmers, so my parents covered Harry with ice. There were no coffins, just boxes painted white. My parents put Harry in a box. My mother wanted him dressed in white — it had to be white. So she dressed him in a little white suit and put him in the box. You’d think he was sleeping. We all said a little prayer. The priest came over and blessed him. I remember my mother putting in a white piece of cloth over his face; then they closed the box. They put Harry in a little wagon, drawn by a horse. Only my father and uncle were allowed to go to the cemetery. When they got there, two soldiers lowered Harry into a hole.

The same concerns that would have limited attendance at the cemetery when Harry Milani was buried reared their heads more recently during the 2014-2016 epidemic of Ebola, a disease that can be spread through contact with the remains of those it kills. More than 300 cases came from one Sierra Leone funeral, and 60% of Guinea cases came from burial practices, according to the World Health Organization. In Liberia, mass cremations ran counter to traditional burial practices that include close contact with bodies. In Sierra Leone, the dead were put in body bags, sprayed with chlorine and buried in a separate cemetery designated for these victims. As traditional burial practices were curbed in an attempt to stop the spread, the dismay caused by this situation, Tognotti notes, was the same feeling experienced by those Italians of the early 20th century who wrote of the pain of the flu pandemic.

Sometimes, however, victims of epidemics who knew the end was near were actually hoping for a departure from the usual norms of burial and mourning: they wanted their deaths to be used to remind authorities to take these crises seriously.

This idea of the political funeral is particularly associated with the AIDS epidemic of the 1980s and 1990s. The activist group ACT UP spread the ashes of victims over the White House lawn, and staged political funerals—open-casket processions, such as the one that brought Mark Lowe Fisher’s body to the Republican National Committee’s NYC headquarters ahead of the 1992 presidential election. “I have decided that when I die I want my fellow AIDS activists to execute my wishes for my political funeral,” Fisher wrote, in a statement entitled Bury Me Furiously. “We are not just spiraling statistics; we are people who have lives, who have purpose, who have lovers, friends and families. And we are dying of a disease maintained by a degree of criminal neglect so enormous that it amounts to genocide.”

The inability to give loved ones proper send-offs is often a hidden cost of these pandemics, Tognotti says, and should not be ignored by officials. Even with modern knowledge about disease transmission, awareness of the reasons for public-health guidance doesn’t lessen the desire to participate in rituals. “The emotional strain of not being able to dispose of the dead promptly, and in accordance with cultural and religious customs, has the power to create social distress and unrest and needs to be considered in contemporary pandemic preparedness planning,” she says.

In this pandemic, a new openness about talking about mental health issues could help. For example, New York state launched a hotline so residents can talk to a therapist for free, and some sites host virtual sessions to discuss grief. Mourners can opt for live-streaming and video conferencing and include more people virtually than before.

For others, these virtual gatherings and brief blessings at the cemetery are placeholders. In March, after Alfredo Visioli, 83, was buried in a cemetery near Cremona in northern Italy, with no relatives allowed to attend and a brief blessing from a priest, his grand-daughter Marta Manfredi told Reuters that, “When all this is over, we will give him a real funeral.”

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When a Grandchild Asks, ‘Are You Going to Die?’

With the coronavirus largely affecting people who are grandparent-aged, it’s a good time to talk with children about death.

By Paula Span

My granddaughter was a few months past 3 years old when she first asked the question, as we sat on the floor playing with blocks.

“Bubbe, are you going to die?”

Nobody is as blunt as a toddler. “Yes, I am going to die one day,” I said, trying to remain matter-of-fact. “But probably not for a very long time, years and years.”

A pardonable exaggeration. Bubbe (Yiddish for grandmother) was 70, but to a kid for whom 20 minutes seemed an eternity, I most likely did have a lengthy life expectancy.

My granddaughter, Bartola (a family nickname, a nod to the former Mets pitcher Bartolo Colon), was beginning to talk about the deceased ladybug she found at preschool. Make-believe games sometimes now featured a death, though a reversible one: If an imagined giant gobbled up a fleeing stuffed panda, he would just spit it out again.

So I wasn’t shocked by what a psychologist would call a developmentally appropriate question. I did mention our conversation to her parents, to be sure they agreed with the way I handled it.

Such questions resurfaced from time to time, even before something she knows as “the virus” closed her school and padlocked the local playground. Though her parents talk about hand-washing and masks in terms of keeping people safe, not preventing death, even preschoolers can pick up on the dread and disruption around them.

Long before the pandemic, it occurred to me that grandparents can play a role in shaping their beloveds’ understanding of death. The first death a child experiences may be a hamster’s, but the first human death is likely to be a grandparent’s.

With tens of thousands of young Americans now experiencing that loss — most coronavirus fatalities occur in people who are grandparent-aged — it makes sense to talk with them about a subject that’s both universal and, in our culture, largely avoided.

Parents will shoulder most of that responsibility, but “grandparents have lived a long time,” said Kia Ferrer, a certified grief counselor in Chicago and a doctoral fellow at the Erikson Institute in Chicago, a graduate school in child development. “They’ve been through historical periods. They’ve lost friends.” We’re well positioned to join this conversation.

But that requires setting aside our own discomfort with the topic when talking to children. “It’s symptomatic of our society that we get nervous about what we tell them and how we’ll react,” said Susan Bluck, a developmental psychologist at the University of Florida who teaches courses on death and dying.

“But if they’re asking questions, they want to know,” she added. If we shy away, thinking a 4-year-old can’t handle the subject, “the child is learning that it’s a bad thing to ask about.”

We want kids to understand three somewhat abstract concepts, Dr. Bluck explained: that death is irreversible, that it renders living things nonfunctional, that it is universal.

We don’t need to prepare a lecture. “Only answer what they’re asking and then shut up,” advised Donna Schuurman, former executive director of The Dougy Center in Portland, Ore., which works with grieving children. “Listen for what they’re thinking. Let them digest it. The next response might be, ‘OK, let’s go play.’”

What and how much our beloveds understand depends on their ages and development, of course. Kids Bartola’s age will have trouble grasping ideas like finality.

They also tend to be awfully literal: My daughter, who knew better but spoke in the moment, once explained the Jewish custom of sitting shiva by saying that the family was going to keep their sad friend company because she had lost her father. “She lost him?” Bartola said wonderingly. “Did he blow away?” Oops, take two.

But 5- to 7-year-olds can think more abstractly. “That’s when they start understanding the cycle of life and the universality of death,” Ms. Ferrer said. And kids 8 to 12 “have an adultlike understanding,” she said, and may want to know about specifics like morgues and funeral rites.

What each age requires of us, experts say, is honesty. Euphemisms about grandpa taking a long trip, being asleep or going to a better place, create confusion. If someone died of illness, Ms. Schuurman advises naming it — “she got a sickness called kidney failure” — because kids get sick too, and we don’t want them thinking every ailment could be fatal.

Ms. Ferrer talks about a loved one’s body not working anymore, and medicine not being able to fix it. Even kindergartners know about toys that no longer work and can’t be repaired.

Nature can be helpful here. On walks, I’ve started pointing out to Bartola the flowers that bloom and then die, the leaves changing color and falling. A lifeless bird in the driveway presents an opportunity to talk about how it can’t sing or fly anymore.

Ms. Schuurman endorses small ceremonies for dead creatures. Wrap the bug or bird in a handkerchief or put it in a box; say a few words and bury it. “Let’s honor this little life,” she said. “It sets an example of reverence for life.”

Psychologists favor allowing children to attend the funerals of beloved humans, too, with proper preparation. In some families, religious beliefs will inform the way adults answer children’s questions.

The professionals I spoke with suggested some material to help grandparents with this delicate task. Ms. Ferrer is a fan of Mr. Rogers’s 1970 episode on the death of a goldfish and the 1983 “Sesame Street” episode in which Big Bird comes to understand that Mr. Hooper isn’t ever coming back.

Complete Article ↪HERE↩!

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Sometimes a ‘Good Death’ Is the Best a Doctor Can Offer

Despite everything we do, we have lost so many battles with Covid-19

By Dr. Hesham A. Hassaballa

There has been so much clinician distress with the Covid-19 pandemic. So many physicians, nurses, and health care professionals have suffered physical, emotional, and moral difficulty taking care of severely sick patients. Some have even committed suicide.

As an ICU physician, I feel this firsthand and believe the reason for the anguish is that we, as critical care doctors and nurses and health professionals, are used to making a difference in the lives of our critically ill patients. Yes, we do lose some patients despite all that we do. But, for the most part, the majority of the patients we see and care for in the ICU get better and survive their critical illness.

Covid-19 has upended all of that.

Before Covid, I would not think twice about placing someone on a ventilator. It is a life-saving measure. With Covid, however, many patients who go on ventilators never come off. This is very distressing.

It is just so hard to try and try and try — spending many waking and sleeping hours — to help these patients pull through, only to have them die on you. Many times, the deaths are expected. Sometimes they are not, and those deaths are the most difficult to bear.

We are used to seeing death in the ICU. It is inevitable that some patients, despite all that we do, are going to die. With Covid, however, it is different. So many have died, and what makes it so hard is that these people are dying alone. Their families are only left to watch them die, if they so choose, on FaceTime or Skype. I’ve lost a daughter to critical illness. I cannot imagine the horror of not being able to be there at her side.

I was speaking to a fellow ICU doctor, and he told me that it seems all he is doing in the ICU is ensuring a “good death” for his patients, and this has deeply bothered him. He is not used to this amount of death. None of us are. It is very, very hard.

Is there any such thing as a “good death”?< It seems oxymoronic that the words “good” and “death” can be juxtaposed. As doctors, our whole existence is to prevent our patients from dying. So, in one sense, there is no such thing as a “good death.” To be sure, I have seen plenty of “bad deaths” in the ICU. Of course, those include patients whose death was unexpected. At the same time, there are patients who we know (despite everything we do) will not survive. In those cases, we do our best to make sure the patient does not suffer. If a patient dies while suffering pain or distress, or they get care that is not consistent with their values and wishes, then — to me, at least — this constitutes a “bad death.” But, indeed, there can be a “good death.”

None of us knows when or where we are going to die… If, however, we can die with comfort, without pain, without distress, and with complete dignity, then that is sometimes the best outcome.

As a doctor, especially an ICU doctor, it is awesome to see our patients do well and survive critical illness. It gives me an indescribable feeling of warmth and joy, and it is the fuel that keeps me going for a very long time. This joy has only been amplified during the Covid crisis. Watching one of our patients — who was very sick and I thought for sure going to die — walk out of the hospital on his own made me absolutely ecstatic.

Sadly, however, that experience has been fleeting with Covid, which has been so disheartening. Yet, even in death, there is an opportunity to do good. Even in death, we can do all that we can to ensure our patients die in peace, without pain, without suffering, and with the dignity they deserverecent study found that approximately 25% of patients experienced at least one significant pain episode at some point in the last day of life. More than 40% of patients experienced delirium. Delirium is an altered state of consciousness, and as ICU doctors, we work very hard to minimize this experience in our patients. In more than 22% of ICUs in America, there were high rates of invasive therapies at the time of death. Almost 13% of patients were receiving CPR at the time of their death, and more than 35% of patients died on a ventilator.

If getting CPR or being on a ventilator will only prolong suffering, or if either is not consistent with a patient’s wishes or values, then I — as their physician — must do everything I can to ensure this does not happen.

When I speak to families on the phone, trying to comfort them in the face of the death of their loved one, I promise this one thing: “I promise you that your loved one will not suffer. I promise you that I will make sure they are not in pain or in distress.” It doesn’t make the death of their loved one any easier, I know, but it is the absolute least I can do to make a horrible situation better.

None of us knows when or where we are going to die. Many (if not most) of us do not know what will cause our death. Those factors are beyond our control. If, however, we can die with comfort, without pain, without distress, and with complete dignity, then that is sometimes the best outcome. That is a “good death.”

And if it is inevitable that a patient will die, and I can help that patient die a “good death,” then that is my job. And in that duty, there is some good, some light, in the overwhelming darkness of this pandemic.

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Refusing to give death the last word

Between the coronavirus and police killings, Black communities are coping with seemingly endless grief. The absence of funerals during the pandemic has been particularly devastating to a culture in which collective mourning plays a vital role.

Flag dancer Tinah Marie Bouldin performed at the memorial service of Kenneth O’Neal Davis Jr., 70, at the Whigham Funeral Home

By Nyle Fort

But the death toll only tells one side of the story. The other side is the anger of being unable to see or touch your deceased loved one for the last time. It’s “a different type of grief,” says Carolyn Whigham, my mother’s longtime partner and co-owner of Whigham Funeral Home in Newark, N.J. “This is where you snot. Cry. Stomp. Shout. Cuss. Spit.”

I asked Carolyn and my mom, Terry Whigham, about their experiences as Black undertakers during the coronavirus outbreak. The stories they shared speak to the scandalous nature of the pandemic. We’re not only grieving our dead. We’re grieving the inability to properly grieve.

This is not our new normal. This is the death of normal.

Terry Whigham (center) and Carolyn Whigham (left) worked with funeral home assistant Vernest Moore at the Whigham Funeral Home.

THERE WAS NEVER a dull moment growing up in a Black funeral home. After school, my brother and I played hide-and-seek between and inside caskets. Our chores included rolling old Star-Ledger newspapers used to prop up bodies for wakes. In the summers, when I wasn’t at basketball camp, I passed out peppermints and tissues to family members of the deceased. I knew I didn’t want to make a living burying the dead. But I was spellbound by the way we mourn.

Service after service I witnessed the electricity and elegance of Black grief. The adorned body laid out in an open casket. Elders dressed in their Sunday best tarrying and telling stories of the good ol’ days. Teenagers with a classmate’s face emblazoned on R.I.P. T-shirts. A spirited eulogy followed by a festive repast where soul food is served and family drama unfolds.

It’s a ritual of death transformed into a “celebration of life.”

For Black communities, who have been disproportionately affected by the coronavirus, bans on funerals have been particularly devastating. I understand why. Not only did I grow up in a Black funeral home, but I’m currently finishing my dissertation on African American mourning.

Burial traditions have long animated African American culture, politics, and resistance. During slavery, insurrectionists like Gabriel Prosser and Nat Turner plotted rebellions at slave funerals. A year before the Montgomery Bus Boycott, Mamie Till held an open-casket service for her slain son so “the world could see what they did to my baby.” The publication of the images of Emmett Till’s mutilated body, many historians argue, was the match that sparked the civil rights movement.

Ruthener Davis at the memorial service of her son, Kenneth O’Neal Davis Jr., who died from complications related to COVID-19.

Three years ago, white supremacist Dylann Roof walked into Mother Emanuel AME Church in Charleston, S.C., and slaughtered nine black parishioners. The day after President Barack Obama eulogized pastor and state senator Clementa Pinckney, activist Bree Newsome scaled a 30-foot pole at the South Carolina State House and removed the Confederate flag. “I was hoping that somehow they would have the dignity to take the flag down before his casket passed by,” she said in an interview after her arrest.

What does this have to do with the coronavirus? Black grief does not begin or end at the funeral procession regardless of how someone has died. Our dead live on in the food we eat, the songs we sing, the children we raise, the ballots we cast, the movements we build, and the dreams we struggle to make real. But how can African Americans work through the psychological wage of unfathomable grief without the sound of a Hammond B-3 organ, or tender touch of an auntie, or the smell of cornbread and candied yams, or the sight of our loved one’s beautified body?

“Could your big mama cook? Did you save any of her recipes?” Carolyn asks a family friend whose grandmother, who was known for her peach cobbler, passed away from COVID-19. “No, because it was all in how big mama did the crust,” the granddaughter explained.

“Well, maybe grandma couldn’t write down how to do the crust but did you stand over her shoulder and watch how she kneaded that flour?” Carolyn asks. She wants to make sure that what remains in the wake of loss doesn’t pass away with grandma.

The great poet and activist Amiri Baraka, whom my family funeralized in jazzy splendor, spoke to this in his book “Eulogies”: “I want to help pass on what needs to live on not just in the archive but on the sidewalk of Afro-America itself.”

How do we keep that tradition alive amid deserted sidewalks and overcrowded morgues? Hell, how do we keep ourselves alive as we witness, once again, Black death go viral?

The memorial service of Kenneth O’Neal Davis Jr., 70, who died from complications related to COVID-19, was live streamed at the Whigham Funeral Home.

I HEARD ABOUT the killing of Ahmaud Arbery the day after my friend’s father died of COVID-19. Then I heard about the killing of Breonna Taylor by police officers who burst into the wrong home to look for a suspect who was already in custody in Louisville, Ky. Then 21-year-old Dreasjon Reed and 19-year-old McHale Rose, two Black men killed by Indianapolis police within an eight-hour stretch. Then, before I could finish writing this story, George Floyd, another Black man, was killed by a white police officer, who pinned him to the ground for eight minutes as he pleaded for his deceased mother and yelled “I can’t breathe,” echoing Eric Garner’s last words.

I refuse to watch the videos of the killings of Ahmaud, Dreasjon, or George. I’ve seen the reel too many times. Different city, different cop, different circumstances. Same horror story. But when I heard that a detective in Indianapolis said “it’s going to be a closed casket, homie,” evidently referring to Dreasjon’s funeral, I lost it.

Unfortunately, I’m used to police playing judge, jury, and executioner. But this officer had the audacity to assume the role of an undertaker, too. It’s nauseating.

Black people are not only dying at alarming rates from the virus. We’re still dying from pre-existing conditions of racial injustice. There is no ban on police brutality during this pandemic. We are losing jobs and loved ones. Police are dragging us off buses for not wearing masks, while prison officials are withholding personal protective equipment to our loved ones behind bars.

Truth is: The pandemic is unprecedented but all too familiar. The endless grief hits close to home. In one year, my family buried my brother, father, and grandmother. My mom visits my brother’s crypt almost every day. Between funerals, she steals away and sits with his remains. For Thanksgiving she brings him pork chops smothered in gravy. His favorite. On the anniversary of his “transition,” as she likes to call it, she gives his shrine a makeover and sings Sam Cooke’s “A Change Gon’ Come.” Chad had an old soul.

A casket in a viewing room dedicated to Sally Alexander, Terry Whigham’s mother.

I last saw my brother on his 32nd birthday, four days before a heart attack took his last breath away. My memory of his funeral comes in shards. I remember the sound of the drums and the look on my mom’s face and me laughing quietly to myself at the idea that he had won our final game of hide-and-seek.

In the midst of our own grief, my family has provided dignified memorial services to Black people in New Jersey, including Sarah Vaughan, Amiri Baraka, Whitney Houston, and the countless beautiful lives whose names and stories don’t make national headlines. Like the daughter of the woman who banged on the funeral home window. A week later, the woman held her shirt still as my mom, standing a short distance away in personal protective equipment, pinned a brooch that contained a photo of her daughter who’d just been cremated.

The woman wept and said, “It’s the little things that mean so much.”

She’s right. A spirit of care and compassion sits at the heart of our heroic efforts to stay alive, too.

Organist and singer Joshua Nelson performed during a memorial service.

In the midst of all of the death and violence, Black people continue to fight back, risking our lives to save others. I witnessed hundreds of protesters wearing face masks chanting “Whose streets? Our streets!” at the intersection of West 62nd Street and Michigan Road in Indianapolis, where Dreasjon was shot and killed. I thought about the residents of Canfield Drive in Ferguson, Mo., who, before Mike Brown’s blood had dried, planted flowers between teddy bears and empty liquor bottles to commemorate his death. I pictured Bree bringing down the Confederate flag, and the heartaches and heartbeats of Black joggers as they “ran with Ahmaud.” Today, I marvel at the bravery of people across the country protesting George’s killing and resisting patterns of police violence amidst the deadliest pandemic in over a century.

Even Carolyn and my mother — who don’t consider themselves activists — provided a hearse for a funeral procession protest honoring the memory of the 45 inmates who have died from the virus in New Jersey prisons.

My family’s funeral home embodies the incredibly essential work before us all today: burying our dead while refusing to let death have the last word.

Complete Article ↪HERE↩!

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Dying virtually

– Pandemic drives medically assisted deaths online

The late Youssef Cohen moved from New York to Oregon in 2016 because of its aid-in-dying law. During the pandemic, assisted dying for terminal patients has gone online.

By

The coronavirus has stripped many of a say in the manner and timing of their own deaths, but for some terminally ill people wishing to die, a workaround exists. Medically assisted deaths in America are increasingly taking place online, from the initial doctor’s visit to the ingestion of life-ending medications.

Assisted dying laws allow terminally ill, mentally competent patients in 10 U.S. jurisdictions to hasten the end of their life. Waiting periods of 15 to 20 days mean that patients with acute COVID-19 won’t likely meet the requirements of these laws.

But the move to digitally assisted deaths during the pandemic has enabled other qualified patients to continue to exercise the right to die. While telemedicine is helping some people die on their own terms, it also makes the process harder on family members, who must now take a more active role in their loved one’s final act.

Assisted dying in America

I have spent the last four years studying assisted dying in America, particularly in Oregon and Washington, which have the country’s longest-standing assisted dying laws. California, Colorado, the District of Columbia, Hawaii, Maine, Montana, New Jersey and Vermont also allow medical assistance in dying.

A quirk in these laws has enabled the process to go virtual. While extremely restrictive in most ways, U.S. assisted dying laws don’t require a physician or other health care provider to be present at an assisted death.

Assisted dying laws require two doctors to independently evaluate a patient’s request for medical assistance in dying. But patients must be physically able to ingest the life-ending medication themselves, a safeguard that ensures they are acting voluntarily.

In Canada, by contrast, clinicians typically administer the lethal dose through an injection. Normally that’s a faster, safer and more effective method. But COVID-19 concerns are compelling some Canadian providers to suspend assisted deaths.

Attending to the dying

Though U.S. physicians aren’t required to attend an assisted death, many patients and their families do have help. In 2019, according to the Oregon Health Authority, 57% of all assisted deaths in Oregon were attended by a physician, another health care provider or a volunteer.

Trained volunteers – many of them former nurses, social workers and behavioral health experts – are critical in helping patients navigate the tricky path toward an assisted death. They know which physicians are willing to see aid-in-dying patients and which pharmacies stock the necessary medications.

In the United States, doctors prescribe a compound of four drugs – digoxin, diazepam, morphine and amitriptyline – to be mixed with water or juice. Within minutes of drinking the cocktail, the patient falls asleep, the sleep progresses to a coma, and eventually the patient’s heart stops.

Volunteers help mix the medication and supervise the ingestion, allowing families to be emotionally present with a dying loved one.

Now, because of the coronavirus, volunteers are accompanying patients and families over Zoom, and physicians complete their evaluations through telemedicine, based on recommendations released by the American Clinicians Academy on Medical Aid in Dying in March 2020.

Telehealth – a health care solution long used in remote areas – has become a critical tool of the COVID-19 pandemic. But some aid-in-dying physicians have drawn on telemedicine to reach far-flung patients for years.

“My patients love telemedicine,” Dr. Carol Parrot, a physician who lives on an island in Washington, told me during a Skype interview in 2018. “They love that they don’t have to get dressed. They don’t have to get into a car and drive 25 miles and meet a new doctor and sit in a waiting room.”

Parrot says she sees 90% of her patients online, visually examining a patient’s symptoms, mobility, affect and breathing.

“I can get a great deal of information for how close a patient is to death from a Skype visit,” Parrot explained. “I don’t feel badly at all that I don’t have a stethoscope on their chest.”

After the initial visit, whether in person or online, aid-in-dying physicians carefully collate their prognosis with the patient’s prior medical records and lab tests. Some also consult the patient’s primary physician.

‘Tough and tender situations’

The pivot to telemedicine hasn’t significantly changed that process. But patient advocacy organizations and physicians say the pandemic has amplified existing problems of access to assisted dying.

“These are tough and tender situations even without COVID,” said Judy Kinney, executive director of the volunteer organization End of Life Washington, via email.

Invariably, some terminally ill patients who wish to die face barriers. Some assisted living and nursing facilities have policies against assisted dying for religious reasons.

During the pandemic, residents in these institutions who lack access to a digital device – or the skills to videoconference with a doctor – may not be able to qualify for the law, according to Dr. Tony Daniels, a prescribing physician from Portland.

Meanwhile, a family member who objects to assisted dying may more easily undercut the process when a volunteer isn’t there in person to make sure a patient’s final wishes are carried out.

Facilitating death

Dying via telemedicine can be hard even on family members who stand behind their loved one’s decision, my research finds. Without a volunteer or physician present, families must assume a more active role in the dying process.

That includes mixing the life-ending medications themselves. Pre-pandemic, many families told me that preparing the lethal cocktail would make them feel like they were facilitating – and not just morally supporting – a loved one’s death. They were glad to outsource this delicate task.

Now they don’t have that choice.

Yet the option to assist in a loved one’s final act may be a comfort in this pandemic. It allows dying people to choose the manner and timing of their own death – and ensures they won’t be alone.

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How COVID-19 May Reframe End-of-Life Care Planning Engagement

The COVID-19 pandemic has renewed patient appreciation for end-of-life care planning, pushing providers to explore best practices for engaging these conversations.

By Sara Heath

For years, the concept of end-of-life care planning has been elusive to intensive care unit (ICU) providers. Not a lot of patients have engaged in these types of communications, and it hasn’t been hard to see why: end-of-life care planning is by nature a grim topic and can make a lot of people — including clinicians — feel uncomfortable.

But that’s started to change now that the COVID-19 pandemic has gripped the nation. At this point, over 100,000 people have died from the novel coronavirus, and it’s pushed end-of-life care planning as a key topic of conversation.

“The virus and the pandemic shined an important light on end-of-life care planning and the need for people who don’t have medical problems to still consider what their wishes would be. That’s because this virus can unfortunately strike folks who are healthy,” said Lauren Van Scoy, MD, a pulmonary and critical care physician at Penn State.

The number of patients coming into the ICU with an advance directive or having discussed some kind of end-of-life wishes with their family members of providers was scant prior to the pandemic. Patients and providers alike have long been uncomfortable with these types of conversations, largely because talking about death can be difficult and scary.

Per 2016 data, many hospitals don’t have much of a protocol for engaging patients in advance care planning or recording end-of-life wishes. Meanwhile, just under half of providers are uncomfortable with addressing the topic with their patients because they are unsure of what to say, the survey out of the John A. Hartford Foundation, the California Health Care Foundation, and Cambria Health Foundation revealed.

Several providers said that they struggle with identifying the proper time to broach care planning with their patients. Forty-eight percent of providers didn’t want their patients to think that they were giving up on them, and 46 percent didn’t want their patients to give up hope.

But this lack of advance care planning between patient and provider or patient and family member can have negative consequences down the line. For the patient, it decreases the likelihood she will receive hospice care at the end of her life and increases the odds she will receive intensive therapies, which can be both costly and unwelcomed by the patient.

And for the family, limited understanding of a loved one’s end-of-life care wishes can lead to serious distress.

“Care planning is so important because not only does it help the patient to receive care that’s consistent with their wishes, but it also helps the family members to have a lower-stress experience,” Van Scoy explained. “They have less psychological morbidities afterwards, and less stress related disorder.”

The data show that up to 30 percent of families who have to make end-of-life decisions experience post-traumatic stress disorder symptoms, Van Scoy pointed out, referencing a seminal study published in American Journal of Respiratory and Critical Care Medicine.

“That’s one of the things that advanced care planning can help to reduce the likelihood of, the stress related symptoms, so that’s why it’s really important for both the patient and the family,” she added.

Of course, advance care planning hasn’t totally been unheard of. In 2015, CMS said it would start paying Medicare providers for holding advance care planning talks with patients, with the goal of improving the quality and experience of end-of-life care and potentially decreasing the use of costly and intensive therapies. Increasing reimbursement for these activities potentially served as an incentive to increase engagement.

And older adults, knowing they may be nearing the end of their lives, have also been at least somewhat receptive to these conversations.

“As people get older, they’re more likely to do advanced care planning,” Van Scoy said, suggesting that this is not enough.

“As we know, medical catastrophe can happen for anyone of any age. We’re often faced with patients, particularly in the ICU, who have not had conversations about what their goals are, what their wishes are, what their preferences are. Families are often quite distressed when having to make decisions.”

But again, that trend has started to change, as more Americans face the reality that they could contract the novel coronavirus. And although COVID-19 has a pronounced impact on individuals with comorbidities, the fact of the matter is anyone could succumb to it.

“The virus has given us an opportunity to have that teachable moment to show that, whether you were diagnosed with coronavirus, or have cancer or a car accident, or some other sort of acute and unexpected illness, it’s always good to have good care planning done in advance,” Van Scoy stated.

“The coronavirus pandemic has allowed people to think about it in a new context as opposed to, ‘advanced care planning is just for old and sick people, not for me,’” she continued. “Now we’re having a conversation nationally about ventilators and ICU use and people needing emergency critical care. People are thinking, ‘gosh, I very well could end up on a ventilator.’ The coronavirus has changed the conversation to be more relevant, more pertinent, and brought it to a broader scope of Americans, not just elderly or those with illness.”

And while patients and providers alike are facing a renewed appreciation for advance care planning, Van Scoy has uncovered new strategies to make these conversations more palatable. After all, just because more patients recognize the need for advance care planning doesn’t make these conversations any less uncomfortable.

As part of her research on patient experience and communications in the ICU, Van Scoy has developed a game that brings advance care planning into the community in an agreeable way. The game, titled Hello, can be delivered in both the healthcare facility or in a community-based setting as it pushes patients to consider what is important to them at the end of their lives.

“The Hello tool is a game that allows patients and their families and friends to come together and talk in a way that’s sort of less serious and less intrusive,” Van Scoy explained. “The game features questions that are asked in a way that are easy to answer. Questions are things like ‘what music would you want to be listening to on your last day of life’ or ‘what are three non-medical facts that your doctors should know about you.’ It approaches this topic in a very soft way, but yet it’s still getting into the meat of the problem.”

And the qualitative data shows this approach has been effective, especially in traditionally marginalized populations for whom end-of-life care planning is even less prevalent. Van Scoy largely credits this to the community-based setting in which she has deployed Hello.

“We leverage those networks to get individuals set up to have these conversations in places outside the healthcare system,” Van Scoy noted. “Users are comfortable and they can lean on each other as opposed to leaning on the healthcare system, which in underserved populations have had some historic problems with trust.”

This new information about carrying out advance care planning will be essential going forward, as the COVID-19 crisis ideally renews patient and provider appreciation for these conversations. As the healthcare industry works to adapt to the novel coronavirus, understanding the best ways to address end-of-life wishes will help providers treat their ailing patients with dignity.

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