Category: Talking about death

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The Pandemic Broke End-of-Life Care

In a Boston ICU, staff members orchestrate goodbyes over Zoom and comfort patients who would otherwise die alone.

by Sarah Zhang

When the coronavirus came to Boston, doctors at Brigham and Women’s Hospital noticed how silent certain floors became. Any patients who could be discharged were discharged. Anyone who could stay away stayed away. “The hospital had this eerie quiet,” says Jane deLima Thomas, the director of palliative care at Brigham and Women’s Hospital and Dana-Farber Cancer Institute. But in the intensive-care units set up for COVID-19, machines beeped and whirred in room after room of the sickest patients. Those patients were sedated, intubated, and isolated. Many of them would die.

Palliative care is about providing comfort—physical and emotional—to patients who are seriously ill, including those who may be close to death. Before the pandemic, deLima Thomas’s team worked with patients with kidney disease or cancer or heart failure, but this spring, they all switched to COVID-19. They embedded themselves in the ICUs. Palliative care is a field especially invested in the power of a hug, a steadying hand, and a smile. In other words, palliative care is made especially difficult by a virus that spreads through human contact.

The first day the palliative-care doctors walked into the ICUs, Thomas says, “we felt like tourists.” They were dressed in business casual, while their ICU colleagues raced around in scrubs and masks. But the palliative-care team—which includes physicians, nurses, chaplains, and social workers—found ways to integrate themselves. In the early days of the pandemic, when protective gear was scarce, no visitors were allowed. Palliative caregivers, along with ICU nurses, held iPads cocooned in plastic bags so families could say goodbye on Zoom. They were sometimes the only one in the room when a patient died, otherwise alone. I interviewed several members of the Boston-based palliative-care team, and their stories, which have been condensed and edited for clarity, are below.

Samantha Gelfand, Fellow

In the ICU, the most immediate thing is the personal experience of walking down the hall. Nearly every patient’s room, the door is closed, and the patient is alone. And they’re often on their bellies for prone positioning. You can’t even see their faces often.

Seeing anyone who is critically ill with a breathing tube, lots of monitors and beeping, it’s not easy. When we facilitate Zoom calls with family, I say, “Listen, it may be alarming to see that your loved one has tubes and tape and monitors on their head.” They may have soft wrist guards on their arms to stop them from trying to take out their own tubes.

It doesn’t always work. I did a Zoom call with seven family members. The patient was a man in his 50s and he had seven kids, and they ranged from 18 to late 20s. I told the siblings what I could to prepare them, and still I’m holding the iPad and they start wailing. There’s a visceral experience of just devastation.

As someone’s who lost my own parent, I think wailing is appropriate. I let them. I actually think holding the silence and bearing witness is the right thing to do first. It’s very uncomfortable to watch, but I think it’s misguided to try to hush or try to shorten it. How do you comfort someone on Zoom? It sucks.

Our department has a reflection conference on Tuesday mornings. In COVID-19 times, we’re still doing this, but now we’re doing it by Zoom. One clinician will read the names of patients who died last week in our care. It’s very, very eerie to hear the list of names and have worked with probably half of them and not have seen their faces.

Usually when we sit in that room and we remember the dead, we are remembering what it felt like to talk to them, what they looked like. And this, it’s like we’re remembering what it felt like to think about the patient or what their family members’ voices sound like. I really missed the times when I could think of a face the patient made or a comment that they said. It feels like a new way of grieving.

Ricky Leiter, Attending Physician

COVID-19 doesn’t just affect individuals. It’s affecting families. I’ve had a couple cases where a married couple is in the ICU, next to each other. I was talking to a daughter whose parents were both intubated in the ICU. They were in their 70s to late 80s. Her father wasn’t doing well, and we were asking, “Should we try to resuscitate?”

I remember her saying, “I can’t think about the hard stuff right now. This is all too much right now. I can’t do that.” And of course she couldn’t. How could she? Her parents were relatively healthy before they came in. It was the suddenness of all this. In my normal palliative-care practice, those are patients who have been sick for a while. They have been diagnosed with a serious and life-limiting illness. A lot of COVID-19 patients are otherwise pretty healthy; maybe they have high blood pressure. This is an entirely new universe.

One of our fellows did five or six tough conversations like this with families in one day. I had a day like that early on. Our team walked back to our office, and everyone there asked what happened to us. We were so shell-shocked, and it felt like we were having the same conversations over and over. I don’t normally have six conversations where it’s the same disease, the same coronavirus.

Reverend John Kearns, Chaplain

My brother died 30 years ago this September. It was a life-changing experience and really oriented me into the life of loss and grief. He died of AIDS, which seems so similar now with the fears surrounding an illness that wasn’t well understood. People then were afraid to touch him or hug him. My parents were very dedicated to his care. He died at home in our bedroom that we shared as brothers.

It’s natural for people to take care of their loved one when someone’s sick. Being present for someone is part of what helps people get through it. They’re participating in some way. During this, the families have none of that participating. The first few weeks of COVID-19, we didn’t go inside the patients’ rooms. Now that we have more protective gear, they’ll let us go in, and the department has developed an iPad ministry to connect patients with family who can’t be at the bedside. Sometimes the family will email photographs and we’ll print them out and hang them in the room—photographs of the patients’ kids, wife, spouse, partner. Whether these sedated patients can see or hear is questionable, but the family gets to see, or the family gets to speak to them.

I’ve spent as much as two hours in a patient’s room. I’ve gently wiped the forehead of a patient. I’ve led prayers with the family over the patient. And they will ask us to hold their loved one’s hand. Often there’s a hope to see there’s a response, whether it’s a simple squeeze of a hand, a blink, the movement of the head—anything that gives them hope that their loved one is going to make it.

When the family wants to be seen by the patient, then you have to do the reverse camera and then hold it in such a way that they can see the patient’s face. You’re trying to orchestrate this intimate moment and sacred moment, and you’re fumbling with this iPad. Where is the camera lens on these things? And at first, we were putting these iPads in plastic bags, like a Ziploc bag, to keep it from getting germs on it. So now it’s sliding around in this bag that’s a little too big. You also have the problem of fogging up your glasses and fogging up the shield. At times, it is hard to see the face of the person or to read something or to manipulate the iPad.

There was a Muslim patient who was dying. We have a couple imams. One is actually out of the country; he has not been able to get home since COVID-19 started. The other imam wasn’t available. When the patient took a bad turn, I got called in by Ricky Leiter. As an interfaith chaplain, we also visit everyone. I had an iPad with 20 or so family members who were all over the globe. They were reciting prayers. At one point it reminded me of church bells. All those voices all over the world, coming together at the same time.

Stephanie Brook Kiser, Fellow

I’ve had family members say to me, Just please go in person and tell them in person that I love them and promise me that they won’t die alone, that you’ll be there at the bedside.

A patient I took care had been sick with COVID-19 and in the hospital for two or three weeks. He was 80 years old. His wife was just a few years younger. They had been together since they were teenagers. You can just tell in her voice that it was so hard for her to be apart from him. She said, “I can’t remember a time I’ve been apart from him for this long. I think this might be the first time since I’ve known him.” At the same time, she was living in fear in her home because she knew she had been exposed to him. Because of her age and other medical problems, she was at high risk to be at the same place he was: really sick in the ICU, with a breathing tube, not getting better at two weeks or three weeks.

It was pretty clear medically, no matter what we were doing, he was continuing to get worse and worse and worse. We had a really difficult conversation over the phone about what his wishes would be, and it was clear to her and to their children that the biggest thing we could do was transition to focus on his comfort. We knew what that would mean is he would die pretty quickly.< With the hospitals’ changing policy, if someone is actively dying, we can now allow for a family member too at the bedside. My experience in the ICU when that’s offered, more times than not family members actually say no, that they don’t actually want to come to the ICU. There’s a real infectious risk to them, and I’ve had a lot of family members say, “I don’t know that I want to see them again the way they are now. I want to remember them the way they were before.” The wife was in such distress and despair over the idea that she was so physically close in Boston but it wasn’t the right decision for her to come into the hospital. I spent a lot of time and I was even grasping at things: Can I arrange a Zoom call? Maybe I can record a video and send it to you guys? And the family was saying, We want to remember him in a different way.

They said, We just want you to go to his bedside and hold his hand so that he knows he’s not alone. And I did that over the course of about 15 minutes. He died pretty quickly.

I’ve been part of a lot of deaths of patients in palliative care. We don’t see a lot of death like this—without any family members present. We aren’t used to being that person at the bedside, trying our best to provide the comfort that a family member’s presence would provide and feeling inadequate in that at best. Afterwards I gathered his nurses and respiratory therapist and we talked. Everyone agreed it was unlike anything they had been part of.

It was the first time I had touched him. And in the ICU, probably one of the only times I’ve physically touched the patient.

Natasha Lever, Palliative-Care Nurse

I’ve been a nurse practitioner for seven years, and I was hired at Brigham to do heart-failure and palliative care. Literally the week after I started, COVID-19 happened. They had this whole very carefully planned out 12-week orientation, and I got a phone call from our director, Jane, and she said, “Either we’re going to keep you at home for the next few months or we’re just going to put you in the ICU.” I kind of got thrown into the deep end.

I went into nursing because I love to be at the bedside and with patients. Not having families and loved ones at the bedside was probably the most difficult part of all of this. It felt so wrong to us that families were having to make decisions about withdrawing care when they haven’t seen their loved ones.

I remember the one that hit me the most was a woman whose son had given her COVID-19. He had been quite ill himself, and he had recovered. The immense guilt that he felt was so profound. He kept saying—he’d obviously been watching the news—“Please, don’t throw her in a body bag if she dies.” He kept talking about how they had been so excited they were going to move into a house together and he was going to buy his first house. He had plans for her and just wanted her home so badly. She passed away and it was very difficult.

That was one of my first cases. And this was week two of my job as a palliative-care practitioner.

I remember the first day I was in the ICU, it was completely chaos. It was very loud, lots of people. Almost this adrenaline rush you felt. A couple of weeks in, things sort of settled down. Now the ICU numbers are down. I had a really strange feeling when they were closing down the COVID-19 ICUs. I walked down the hallway and it was dark and all the rooms were empty and clean and there was no one there. Two weeks ago, this was one of the most busy, chaotic places in the hospital and there was just this silence. No alarms, and no people. It was almost as though, Is this a dream, did that really happen?

Now I have just started doing the orientation that I was supposed to be doing. I’m going back to the hospital. I’m extremely excited to be at the bedside. I have never been so excited to talk to a patient in real life.

Complete Article ↪HERE↩!

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More people are dying in American prisons

– here’s how they face the end of their lives

An inmate inside the nursing unit at Louisiana State Penitentiary.

By

Outbreaks of coronavirus have hit prison populations particularly hard – but for many inmates in the U.S., illness and the prospect of dying behind bars already existed.

Advocacy groups have flagged concerns about disease transmission, lack of medical care and deaths in custody as a result of COVID-19. But deaths in custody are not a new phenomena and the process of dying with dignity while incarcerated is complicated.

I have spent a significant amount of time examining correctional health care practices and believe the process of dying in prison is one in which human dignity can be lost.

Prisoners grow old faster and become sick earlier. By 2030 some experts believe that one in three prisoners will be over the age of 55, increasing the likely population of prisoners diagnosed with conditions such as cancer, heart disease, liver and kidney disease, high blood pressure and diabetes.

A recent Bureau of Justice Statistics report revealed a startling increase in state prisoner mortality. Between 2006 and 2016, the last year for which the study provided data, there were more than 53,000 deaths in custody. More than half of the 3,739 deaths in custody in 2016 resulted from just two illnesses – cancer (30%) and heart disease (28%).

The proportion of prisoners requiring end-of-life care is twice as high as the general population.

An inmate with cancer in Colorado Territorial Correctional Facility’s hospice program.

Outside prison walls, a diagnosis of a terminal illness often means gathering friends and family to repair and restore relationships and thinking about end-of-life options. The coronavirus has, of course, affected who can be present in someone’s last moments, but the terminally ill still have options over their medical care, pain management, who to tell and how, and getting affairs in order. For prisoners, such choices are constrained by state regulation. Prisons are not well-equipped to provide human dignity at the end of life. Terminally ill prisoners have two options: compassionate release or end-of-life care behind bars.

Showing compassion

Offering early release or parole to prisoners diagnosed with debilitating, serious and often terminal illnesses is considered compassionate release. Many in the medical profession consider compassionate release a constitutionally protected right as incarceration of prisoners with debilitating illness undermines medical care and human dignity. Others see compassionate release as a way to reduce correctional health care costs for a population posing little risk to the public. Iowa is the only state without a compassionate release law.

The process of qualifying for compassionate release is complex and statistics on how many succeed are hard to obtain, although we know the numbers are small. Prisoners’ medical conditions, age and time served determine eligibility. But exclusion criteria are extensive. For example, prisoners committing the most serious crimes are excluded. Most states allow stakeholders such as victims, police and court professionals an opportunity to say no.

For the terminally ill, release is often dependent on one’s “death clock” – how many months a medical professional certifies that you likely have before dying. In some states like Kansas and Louisiana, death must be imminent – within 30 to 60 days. In others like Massachusetts and Rhode Island, prisoners with as long as 18 months to live may be released. Applying for compassionate release can be daunting for someone with only months to live. Sadly, some die before they can complete the process.

Even if an inmate does get out, their family may be ill-equipped to deal with the challenges of caring for a dying loved one. In these cases, release may result in transition from one restrictive, isolated, institutional setting to another with care provided by unfamiliar medical professionals.

End-of-life sentence

States must provide medical care to prisoners even though they are being punished for a crime. But the quality of such care is often inadequate. The prisoner does not get to select medical options; care is determined by the state. Death could mean dying alone in a prison cell, in an infirmary with only periodic check-ins from a nurse and prison volunteers or in a hospice unit managed by the state.

Pain management may be restricted by correctional policy and by staff who are reluctant to administer narcotics, such as morphine, to ease suffering out of concern that it could be sold or used illicitly. A recent report in the American Society of Clinical Oncology Post discussed how inadequate care caused unnecessary pain and suffering in prison and concluded: “No one in a wealthy and socially advanced country like the United States should suffer from untreated pain, especially at the end of life.”

While families are allowed to visit terminally ill prisoners, notification of the illness rests with the prisoner – a daunting task if the prisoner has lost touch with relatives over years incarcerated. State prisoners are often confined far from home, so even family members who would like to visit may be hampered by distance and cost. Another challenge for families is the bureaucratic process of prison admission. It is correctional staff at the gates rather than medical professionals determining who gets to visit on any given day.

Access to a mainstream faith leaders and last rites are provided when available. But it is not uncommon to find spiritual practices for the dying prisoner carried out by fellow prisoners.

For terminally ill prisoners “getting one’s affairs in order” includes trying to identify someone in the community willing to take responsibility for their body after death and ownership of personal effects gathered during incarceration. Even if the prisoner identifies a relative willing to take responsibility, there are no guarantees. A relative may be disqualified from handling prisoner affairs. In Ohio, for example, if the prisoner’s loved one is unable to accept the body within two days after notification, the relative may be disqualified.

If no one comes forward, then the prisoner will be buried in an indigent grave and prison officials will dispose of the prisoner’s belongings and monies remaining on prisoner accounts.

Complete Article ↪HERE↩!

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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.”

Complete Article ↪HERE↩!

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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.

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