Widow is an awful word. It conjures up such drab and lonely images; and besides, it defines a woman by what she has lost and what she no longer is. But at least there is a word for having lost your husband. For the other heart-stopping losses that come to many in midlife, and some even earlier – the death of your parents, or of a sibling, or a child, or perhaps a best friend – there isn’t even a word. Yet these are life stages in their own right too, and deserving of closer understanding. For some reason, which may or may not be connected to the raw and unpeeled state of our emotions after a pandemic, a small window now seems to be opening on to an underexplored world.
The writer Clover Stroud’s The Red of My Blood, a memoir about trying to make sense of the death of her 46-year-old sister, Nell, from cancer, was published recently to a chorus of recognition and relief from some bereaved readers. After the funeral and the flurry of condolence letters, and the awkwardness of people just not knowing what to stay, there is still the long haul ahead of reconstructing a good life without someone who used to be central to it. And that’s what this book is about. Clover is a working mother of five: she might be dazed with grief but there is still pasta to be cooked, school runs to be done. In the spaces in between, however, she is constantly puzzling over the seeming impossibility of Nell being gone. How can she simply stop existing? The book revolves around Clover’s constant search for her sister, looking for her in photographs and in places they went as children and in the last things she touched when she was still alive. When you lose someone you love, they are suddenly everywhere but nowhere. Decades on, I still remember that irrational lurch of recognition at the face in the crowd that surely has to be them – except, of course, when you get closer it isn’t, and can’t ever be again.
More pragmatic but no less quietly moving was the interview Harriet Harman gave last week to Sky News’s Beth Rigby about coming to terms with the loss of Jack Dromey, her husband of 47 years. They were one of the most devoted couples at Westminster, and Dromey’s unstinting support for his wife powered her through the most gruelling stages of her career, juggling small children with working in a parliament still deeply hostile to women. But intensely as she will have felt the loss, as she points out she might have decades left to live without him – and she is trying to figure out how widowhood can become a different chapter in life, not the end of it. “People say, ‘Oh now that you’re on your own …’ but – I’m not with Jack any more, but I’m not on my own. I’ve got my children; I’ve got my friends; I’ve got my work colleagues. And I don’t agree with the notion that’s somehow out there that when you’re a widow your life is over and that somehow you’re a lesser person,” she told Rigby.
For all the grief and loss, she said, “people are themselves in widowhood just as they are themselves in the rest of their life”. As women they are very different characters, but both Stroud and Harman are grappling with essentially the same thing: how to find life again in the midst of death, without pushing away or denying the reality of what has happened.
It’s a stage most of us would perhaps rather not think about, even though grief comes to almost everyone who loves someone in the end. But if death itself is the last taboo, then the final frontier to be breached is what comes after; the slow, difficult process of learning to live with that loss, which takes much longer than the impatient outside world is often willing to accept. Time heals, everyone says, and there is a sort of truth in that. The wound doesn’t go away but it does change, slowly solidifying into scar tissue that will always be there. The beauty of Clover’s book is that there is no neat ending, just as in death there so often isn’t. What’s left, however messy, is the search for a different way of living.
Palliative care can provide relief to people with severe, but not necessarily life-ending, health conditions. But often patients — and their doctors — don’t realize they can take advantage of a team-based treatment approach that may include social workers and community support.
“The big misconception about palliative care in general is that you need to be dying to get it,” said Dr. Andrew Esch, a palliative care specialist and consultant for the Center to Advance Palliative Care (CAPC) in Tampa, Fla.
The pandemic has helped counter that view, Esch and others told Next Avenue, as physicians see the benefits to people living with COVID-19 and their families. A palliative care team aims to take a holistic view of the patient’s world rather than focusing solely on treating the primary condition.
Dr. John Mulder, of Spring Lake, Mi., executive director of palliative care training center Trillium Institute, uses “life-defining” or “life-altering” to identify conditions that might benefit from palliative care.
“Getting palliative services doesn’t mean that you are somehow giving up on treating an illness. It’s quite the opposite.”
“Many, many individuals as they navigate their lives are going to be diagnosed with something that is going to forever change them, and it’s going to impact their longevity, impact their quality of life, and can place some burden of suffering upon them,” he said.
“What we do in palliative care is acknowledge the fact that we have something we can’t fix,” Mulder continued. “It might be modifiable, it might be manageable, but we can’t fix it.”
The Symptom-Based Approach of Palliative Care
He added, “You don’t have to be imminently dying to get palliative services. Getting palliative services doesn’t mean that you are somehow giving up on treating an illness. It’s quite the opposite.”
People with cancer, for example, can rely on the symptom-based approach of palliative care to build their strength so they’re better able to withstand chemotherapy, he said. People with conditions like multiple sclerosis or Parkinson’s disease can also benefit, as can those with Alzheimer’s disease.
Palliative care is “really appropriate for anybody with a diagnosis of a serious illness, regardless of prognosis,” said Brynn Bowman, CAPC’s chief executive officer. Most insurance plans cover palliative care just as they would any other specialist service. CAPC manages a website that can help patients find palliative care providers by ZIP code.
“What palliative care aims to do is provide relief from the symptoms and stress of the illness,” Bowman said. That may include managing pain and other symptoms, supporting the family, or helping people match their treatment options to their goals.
“The point is to improve the quality of life for patients and families,” she said.
“Palliative care is based on need, not prognosis,” Esch said, adding that the earlier the team gets involved, the better.
Misconceptions About Palliative Care
Misconceptions about palliative care don’t appear to be limited to the public. Physicians often associate it with end-of-life care and are hesitant to recommend it early in a patient’s illness journey, palliative care specialists said.
“It’s really clear that the medical system isn’t telling patients at the front line of their disease” what to expect, said Katy Lanz, chief strategy and product officer at Personal Care Medical Associates, a geriatric and palliative care company in Pittsburgh.
“Many well-intended, wonderful, smart physicians still are confused about what options people have,” she said.
Often, a doctor will diagnose a patient with a serious condition “but not tell them it’s a disease that one day ends their life,” Lanz said. “There are decisions associated with that disease we should talk about with them while they’re well.”
‘Long COVID’ Brings a Shift in Perspective
The COVID-19 pandemic has boosted demand for palliative care and shifted medicine in ways that are likely to bring the specialty to the forefront, practitioners said.
“COVID has shined a light on the value of palliative care, especially now that we’re seeing ‘long COVID’ patients,” said Esch.
The complex nature of the disease and its effects on family members and caregivers make COVID-19 well suited to a team-based approach. “There’s been a real acceleration” in reliance on palliative care since the pandemic started, Esch said.
“Our volumes are way up,” Esch said. “Most teams are busier now than they’ve ever been.”
According to Esch, a palliative care approach helps with the “brain fog” many people experience after spending time in an intensive-care unit, as well as the “lingering malaise” many COVID sufferers report.
The general malaise brought about by the pandemic has also brought palliative care into focus, Esch said.
“There’s almost a parallel epidemic of a mental health crisis right now,” and people with underlying conditions are seeing their symptoms exacerbated by stress even if they haven’t contracted the virus themselves, he said, adding, “There’s a lot of suffering right now, and that’s really the intersection we sit in.”
“COVID has helped both providers and patients really focus on the need to think about what’s most important to them, where they want to get their medical care, and how,” said Dr. Kim Bower, of San Diego, Calif., medical director of the palliative care program at Blue Shield of California.
“I think it’s opened up discussions,” she said. “It’s been a reason for families to sit down and discuss priorities.”
The pandemic has also addressed barriers to telemedicine, and “really let us see what can we do effectively by video visit and what do we really need to do in the home to meet the patient’s needs,” Bower added.
Health Insurers and Hospitals See Value in Palliative Care
In 2019, 72% of U.S. hospitals with 50 or more beds reported having a palliative care team, according to CAPC. That was up from 67% in 2015, 53% in 2008, and just 7% in 2001. The number of palliative care programs in community settings is also rising, said Bowman.
Some health plans are being proactive about palliative care, sorting through records and identifying members who might benefit from palliative care, Bowman said.
“We’ve taken a multi-pronged approach” to reaching out to members, she explained. Physician and case manager referrals, along with research into medical records and discussions with providers, can identify those who might benefit, she said. Some may need something as simple as more time with a primary care provider or a telemedicine visit.
“I think about palliative care as a continuum, from the palliative care that can be provided by your primary care doctor to the type that can be provided by a specialist in your home,” Bower said. “The final part of that continuum would be hospice care.”
“COVID has helped both providers and patients really focus on the need to think about what’s most important to them, where they want to get their medical care, and how.”
“One of the gaps we have in the United States is, though we have a way to pay for hospice care, we don’t really have a great way to pay for palliative care providers” in a clinic or by telemedicine, Bower said.
The philosophy of palliative care — an interdisciplinary team taking care of the family as well as the patient — isn’t exactly matched with the existing reimbursement system, though that’s changing. “We’re starting to see a network of outpatient palliative care providers form,” Bower said. Still, “access is still spotty.”
Some 65% of Blue Shield members who take advantage of palliative care “discharge” from the home-based program after their symptoms stabilize or their needs are met, Bower said. They may still access services such as office-based palliative care visits, “but they don’t really continue to need that high-acuity palliative care.”
“I think it’s important for patients to be able to access palliative care across that continuum, whether that’s most appropriate in their primary care doctor’s office, a clinical setting, telehealth, or hospice,” Bower added.
The state’s passage of SB 1004, the law mandating coverage for Medicaid recipients, “was a huge win in terms of improving access,” Bower said. “I think having something like that nationally would be a great step forward for palliative care.”
Care for Caregivers and Families
Caregivers for people with serious diseases are themselves at risk for social isolation and exhaustion, and a palliative care team can connect them with community resources such as adult day care, according to Bowman. The team can also teach a caregiver about disease progression and how to manage pain and possibly avert a crisis.
For example, palliative care can provide immediate benefits such as alleviating symptoms so patients aren’t bedridden, said Esch.
“I could come up with about two-thousand and five hundred stories of patients who were in unmanaged pain,” he said. “You get that pain under control, it changes their life.”
As Esch sees it, one of the real values of palliative care is “coordinating care and communicating with the patient’s family and other clinicians” so “we’re not doing things in silos,” he said.
“Palliative care takes the lead and makes it so the patient feels they have four doctors and nurse practitioners taking care of them, and they have four of them talking to each other.”
We gathered as a medical team in front of my patient’s room early one Saturday. She was one of the sickest patients in the intensive care unit. Her lungs were destroyed by cancer and a rare reaction to her chemotherapy, and her condition worsened each day, despite aggressive interventions. It was clear that there was nothing more that we could do. Except to keep her alive until Monday.
Struggling to come to terms with this reality, her family had begged us to continue our interventions through the weekend. So we would keep her intubated, deeply sedated and, we hoped, pain-free, performing the rituals of intensive care until the family was ready to say goodbye.
There is a largely unacknowledged moment in critical care when doctors and nurses shift from caring for the patients in front of us to caring for their loved ones. Often these two aims are not inconsistent: Even when family members like these are not ready to stop life-prolonging interventions or ask for a treatment that is unlikely to work, they are speaking on behalf of the patient. But increasingly I wonder if it is possible to go too far to accommodate family. When a patient is at the end of life, what is our responsibility to those who will be left behind?
On another recent shift, I received a call from a colleague at a different hospital. He was caring for a patient in his 60s with severe respiratory failure after a coronavirus infection. The patient’s family was desperate for him to be transferred to our hospital, a larger institution with greater resources. But intensive care unit beds were a scarce resource, and there was no clear medical reason for the transfer. His team had already done everything that we would do, and the simple act of transferring someone so sick could be catastrophic. I was the critical care doctor on call, charged with accepting transfer requests, and it would have been easy to say no. But then there was the matter of his family.
The patient arrived overnight, just as sick as we expected. His oxygen levels had dipped in the move and never recovered. Standing outside his room the next morning, his wife asked me if I thought the transfer had been a mistake.
Maybe it was. Not because his numbers were worse; that was inevitable, regardless of the transfer. But because I had made the choice to bring someone to our hospital in large part so that his family members would believe they had done absolutely everything. Of course, family request alone is not a sufficient reason for a hospital transfer. And though I suspected that we would have nothing more to offer in terms of medical interventions, that was not possible to know with absolute certainty when the other hospital called. But perhaps even more important, I did not want his family to wonder what might have been.
And so the transfer was an act of caring for him, too, to leave his family without regret. I do not believe that we went against his wishes, sacrificed his dignity or caused him pain. When he died a few days later, it was peaceful, with his family at the bedside.
But that’s not always the case. Not infrequently a family will demand that doctors perform chest compressions and shocks if someone’s heart stops, even though we are nearly certain it won’t help. I used to find myself infuriated by these conversations. On occasion I have used hospital policy to take the decision away from the family altogether. But maybe that is not the only response.
Some years ago, Dr. Robert Truog, a critical care doctor and ethicist at Harvard, published a provocative essay arguing that there may be a role for cardiopulmonary resuscitation if it is necessary for the family, even if it will not directly benefit the patient. He told the story of a chronically ill child with a dismal prognosis whose parents were unwilling to stop aggressive measures. During one hospital admission, the child’s heart stopped, and at the parents’ behest, the team moved forward with attempts at cardiopulmonary resuscitation. When the efforts ended and the child had died, the parents entered the room, surveyed the detritus of the cardiac arrest, the lines and the tubes, and surprised the medical team members by thanking them for doing everything. Dr. Truog wrote that even if it was futile from a medical perspective, what he had come to realize was that the procedure let the family members know that the doctors had tried. That was the way to give them a narrative they could live with.
I am still not sure what to make of this argument. We would not resuscitate patients against their stated wishes, regardless of what their loved ones want. But in these moments, we are so often making decisions for both the patients in front of us and the people who will carry their story forward. And so maybe resuscitation attempts can be for a family just as much as or even more than they are for a patient. Maybe in some cases, that is justification enough.
But at the same time, I worry that even if my patients are beyond pain, there is also a cost to those who are forced to perform emergency efforts that are just that: a performance. I wonder, too, whether this very scenario means that doctors have failed. Perhaps if we were clearer communicators, no family members would choose for their loved ones to undergo intensive treatments that only postpone the inevitable.
That Saturday in the I.C.U. passed quietly for my cancer patient. But when I returned on Sunday, I learned that her blood pressure and oxygen levels had started to teeter when the nurses turned her, as they did every few hours to prevent bedsores. The daily activities of critical care were beginning to cause harm. We had planned to wait until Monday to readdress goals with the family, but was that the right choice? I hoped my patient was pain-free but could not guarantee it. And perhaps it was unkind to allow her family to spend another day hoping she might improve when we knew that to be impossible.
We called in her adult children and told them that their mother was dying. They cried and questioned, and I asked myself whether I should have waited, but they ultimately understood. If there was no way that doctors and nurses could make their mother better, then they would focus on her comfort. They gathered by the bedside. We waited for a chaplain. And late that night, in the last of our many rituals, a nurse disconnected my patient from the ventilator, ensuring she had enough medications so that she would not struggle. It was a final act of compassion, at once for the patient, her family and for us, too.
When Jordana Fremed, 26, got engaged, she didn’t think that one of the first serious topics the couple would discuss would be death and dying. But soon after, her fiance’s mother was diagnosed with amyotrophic lateral sclerosis, prompting difficult discussions to plan his mother’s end-of-life care.
Eventually, the couple started talking about wishes for their medical care should they be sick or injured and unable to communicate.
The experience “definitely got us thinking about those questions in relation to what we might want for ourselves,” said Fremed, of Teaneck, N.J.
Medical experts such as Rebecca Sudore, palliative medicine physician and geriatrician at the University of California at San Francisco, say that faced with these numbers, more young people should consider advance-care planning — a process that helps people think through medical decision-making should they be unable to communicate themselves.
“You know the old saying, ‘I could get hit by a bus tomorrow?’ And actually you could,” Sudore said. “And covid has shown us, too, that things are unpredictable. For people in their 20s or 30s who don’t have a serious illness, it could be helpful to think, ‘Well, if I did get hit by a bus tomorrow, who would speak up for me?’ ”
Sudore said she thinks that advance-care planning is an important way for people to participate in their own medical care. “People, particularly in their 20s, can think about advance-care planning as a way to prepare for medical decision-making and really to ensure that people have a voice in their health care, both now and in the future,” she said.
Advance-care planning is an umbrella term that may include completing advance directives — documents that provide written instructions for loved ones and a medical team. They may include specific instructions about which medical interventions doctors can perform — or withhold — such as CPR, mechanical ventilation or artificial nutrition.
Directives can also include broader descriptions of what a person considers a good quality of life, such as the ability to run or spend time with family.
These descriptions can help doctors imagine what a patient would want if they could communicate themselves and determine what medical interventions to offer.
Finally, advance directives often designate an individual to make medical decisions on a person’s behalf, should that person become incapacitated.
“It’s important for every person to think about this topic because unexpected and tragic things happen every day,” said Laura Taylor, a palliative care physician at the University of Michigan. “The pandemic has taught us is that even completely healthy adults can develop serious or life-threatening illness from covid-19, especially with the spread of more virulent variants like delta. And some of those people will require a surrogate decision-maker.”
While less likely to die than older adults, Americans in their 20s and 30s do face risks. The three leading causes of death in adults ages 25 to 34 in 2019 were unintentional injury, suicide and homicide, according to data from the Centers for Disease Control and Prevention. As of Jan. 19, over 5,000 adults between the ages of 18 and 29 in the United States have died of covid-19 since the start of the pandemic, according to provisional data from the CDC. Three hundred per 100,000 adults in this age group have been hospitalized.
In advance-care planning, young adults should first consider who they would want to make decisions on their behalf should they be unable to do so. That person is called a surrogate decision-maker or health-care proxy.
Experts agree that young, healthy adults should worry less about the nuances of medical decision-making, such as whether they would want to be intubated, and instead focus on designating a surrogate decision-maker.
“I think the majority of healthy young adults probably would default to receiving all aggressive, life-prolonging interventions that were offered to them if they were to become seriously ill, so it’s less important for young adults to have a detailed sense of their preferences and wishes,” Taylor said. “For young adults, it’s most important to identify the best surrogate decision-maker who understands that person well and can advocate for them.”
Legally, it might not be who they expect.
“People might assume ‘I want my roommate or my partner to make these decisions for me,’ ” Sudore said, “but it could be some estranged family member because that person is the next of kin.”
“I’m thinking about a young unmarried person who may not have a strong or trusted relationship with their parents, who may not want their parents to be their surrogate decision-makers, but they become their decision-makers by legal default,” Taylor said. “It’s really important for that person to decide who they would want to be assisting in medical decision-making for them if they were unable to.”
After choosing a surrogate, it is important to discuss health wishes together to ensure that the surrogate is comfortable making those decisions. Sudore recommended talking to the person about “what’s important in your life, and for your quality of life, and for your health care, so that this trusted person is really prepared to advocate for you if ever they needed to.”
Sudore is the founder and director of PREPARE for Your Care, an interactive site on advance-care planning. It yields a prepopulated advance directive for a specific location, as the process can vary by state. The documents can be updated at any point, should someone’s wishes or circumstances change.
“We have these easy-to-read advance directives,” Sudore said. “They focus on things like value, goals, what brings quality to somebody’s life, which is probably more important to someone in their 20s than ‘Do you want CPR or mechanical ventilation?’ ”
Olivia Duffield, 24, a medical student at Temple University in Philadelphia, first heard about advance-care planning during the terminal illness of a family member when she was a child. After learning more in a bioethics course, she broached the topic of her own wishes to her parents.
“For me, I think about what would happen if I were to get into a car accident or have a really sudden unexpected event that would cause me to potentially be brain dead or to be intubated in the hospital,” Duffield said.
Sudore said advance-care planning should be normalized for young people.
“When I think about it, it’s a kindness to ourselves in the sense that it gives us empowerment to make sure that our voice is heard if there’s a time that we could not speak for ourselves,” she said. “And it’s a kindness to our loved ones by giving them a little bit of a heads up.”
Fremed agrees: “You kind of always think that you have until tomorrow to do it, but things can happen in a moment. Having your other person know what your wishes are and what you want is just a very smart and healthy thing to do.”
The unexpected death of a friend and colleague to COVID-19 in January 2021 led me to start researching how American death rituals were transforming during the pandemic. My friend was Hindu, and while watching his funeral on Zoom, I witnessed the significant transformations that had to be made to the traditional rituals to accommodate COVID-19 safety guidelines.
In the spring and summer of 2021, I conducted over 70 hours of oral history interviews with people involved in the medical and funerary professions, as well as grieving families and those who worked closely with them, including grief counselors, hospice workers and even spirit mediums.
As a historian of religion interested in how different cultures make sense of death, I noticed what appeared to be a momentous cultural shift happening in America in terms of death rituals as over 850,000 Americans died from COVID-19. During this period, funerary customs dramatically shifted and, in many cases, failed to bring any comfort to grieving friends and families.
What changed in funerary rituals
In my conversations, funerary professionals described the initial chaos as funeral size had to be dramatically curtailed, sometimes with only one to two hours’ notice. Eventually, many began to innovate with new technologies that allowed them to hold virtual funerals.
Richard Davis of the Cook-Walden Funeral Home in Pflugerville, Texas, described how early in the pandemic he utilized radio technology for grieving families who could be in their cars in the parking lot, tune the radio to a specific station and listen to the person giving the eulogy inside the funeral home.
Some funerary directors partnered with wedding videographers whose business was suddenly upended because most weddings were canceled or delayed. These videographers found that the high-quality equipment used to produce wedding videos could as easily be put to use broadcasting a Zoom funeral.
I also spoke with three spirit mediums who all described a marked increase in clients seeking postlife words from loved ones who died on ventilators. They described how anguished families sought to know that their loved one had not died alone and did not blame them for their death. One medium in particular also noted that the pandemic saw an increase in family members seeking to connect with those who had died of drug overdoses brought on by the stress of the pandemic.
The end-of-life work of religious leaders was transformed as well: Catholic and Episcopal last rites were performed via FaceTime, sometimes with consecrated oil being carefully administered by a Q-tip.
The Jewish tradition of sitting with a body before burial – usually performed by volunteers in shifts at the funeral home – became an at-home experience. Although the volunteers, called shomer or shomeret in Hebrew, could not sit next to the body as usual, they worked on the honor system to ensure that someone was always praying and keeping the deceased in their thoughts, even while far away.
Muslim leaders described working with local health agencies to obtain Personal Protective Equipment (PPE) and specialized training for those performing the full-body washing of a corpse known as ghusl in Arabic.
These adaptations reflect a long history of transformations for the American funeral.
In the 17th and 18th centuries, most Americans generally prepared the body themselves and hosted the funeral at home. However, by the 19th century, more Americans were dying in hospitals as a result of the availability of medical care and because the corpse was believed to be carrying disease. This spurred the development of the funeral home. Individual funeral homes often personalize their offerings to the needs of local cultural or religious communities.
Funeral homes became most popular after embalming – a form of preservation performed by mortuary specialists – became the norm after the Civil War. The war spurred a crisis to preserve soldiers’ bodies while they made the long trip home, and embalmers would sometimes follow the military troops to accept payment in advance for the procedure.
Today, the funeral industry has grown to a whopping US$20 billion, and embalming remains the predominant treatment for the body after death.
With the rise of the internet, funerals are once more undergoing rapid transformations. Scholar of death and dying Candi Cann has shown how the internet gives rise to new forms of social remembrance after death. These can include mourners going to Facebook or Instagram pages on the anniversary of the death and leaving a message about how much they miss the deceased. Online marketplaces allow for the purchase of individualized mourning paraphernalia like T-shirts or bumper stickers, and public memorials at the site of death.
Such tools thrived during the pandemic. During my research, several individuals who lost loved ones explained creating memorial items, including stickers and face masks commemorating a lost loved one, as a way to encourage others to wear masks. Virtual online communities of COVID-19 mourners adopted the yellow heart as a public expression of loss of a loved one to the pandemic in the U.S. and Europe.
Funerals and other rituals surrounding death are important to begin the grieving process. Research has found that performing rituals has a major role in alleviating grief through increasing feelings of control and transitioning mourners to accepting their loss. Funerals can provide important structures for families to say goodbye that have been correlated with better grief outcomes.
J.Z. Smith, one of the most influential theorists of religion in recent years, said that “ritual relies for its power on the fact that it is concerned with quite ordinary activities placed within an extraordinary setting.” In other words, ritual takes elements from the ordinary world – words, gestures, symbols, etc. – and imbues them with extraordinary meaning.
We might cry or wear black clothing every day for any number of reasons, but in funeral rituals these activities have special significance and bring a sense of closure. It is this repurposing of ordinary things that makes rituals so effective.
But in my conversations with those who lost loved ones to COVID-19, it became apparent that for many, the transformations in funerals and rituals of mourning failed to help them in dealing with their grief. As one individual explained to me, “I knew my grandmother would pass away sometime, but I always imagined I would be there; I never imagined I would be watching it virtually on Facebook. It felt like a parody of a funeral.”
Another interviewee explained how the isolation necessary in the pandemic era fundamentally undermined the comfort these rituals could provide: “Because my family has been so terrified of COVID, we have not been able to gather together to process my mother’s death. That has been really hard for me culturally – especially in Indigenous families, you grieve together.”
Reverend Richard R. Andre, C.S.P. of St. Austin Catholic Parish in Austin, Texas, echoed these thoughts as he described assisting those losing loved ones in his own spiritual community: “The funeral helps you to start a process of closure. But without the funerals they envisioned, people are just getting stuck and are unable to grieve.”
The COVID-19 pandemic has forced us to consider how rituals can lose their extraordinary power when our sense of “normal” is shattered and remains shattered for years. As religion theorist J.Z. Smith noted, rituals work by framing the ordinary as extraordinary. But if nothing feels normal, then nothing can feel extraordinary either.
Elegy performs an essential caretaking, both intimate and public, of our dead.
By David Sherman and Karen Elizabeth Bishop
The grinding work of pandemic survival leaves few moments to reckon with the significance of our catastrophic losses. The scale of death from the coronavirus — 5.4 million, more than 800,000 of them in the United States, and counting — baffles understanding and eclipses feeling. But a society survives such devastation only by creating shared spaces and open time for mourning. How do we begin to acknowledge so many dead? What cultural forms and expressive practices can bear these absent lives with us into the future?
Elegy is where we figure out how to do this work. Elegiac poetry helps us hold vigil over the dying and bear the dead to a resting place. The form has long offered symbolic versions of these defining human acts, surrogate ways to fulfill existential obligations when we are rendered passive and mute by another’s death. Whitman’s “When Lilacs Last in the Dooryard Bloom’d,” shared in so many classrooms and anthologies, still resonates for the way the poet risks the unanswerable questions at the jagged heart of elegy: “O how shall I warble myself for the dead one there I loved? / And how shall I deck my song for the large sweet soul that has gone?”
Whitman wrote these lines fora slain president and a nation devastated by civil war. In a pandemic, when a flood of statistics threatens to swallow the singularity of every death, contemporary elegies — about the dead, for the dead, in place of the dead — offer us new ways for our grief to work its way past silence. Elegy performs an essential caretaking, both intimate and public, of our dead. Poetry is a labor of survival.
At the beginning of the pandemic, our most established mortuary and memorial practices were in lockdown. Funerals were forbidden and mourners had no way to gather in person, as farewell rituals collapsed into screens. The anguished poetry of that moment tried to work through this dreadful impasse. Nick Laird’s “Up Late,” an elegy to his father, who died of covid-19, describes the sudden, otherworldly alienation of pandemic dying: “This morning / the consultant said your father now is clawing / at the mask and is exhausted and we’ve thrown / everything we have at this. It’s a terrible disease. … // Dad, / you poor bastard, I see you. / You lay like that for a week alone / with your thoughts in the room. // Tethered. Breathless. Undefended. / At sea as on an ice floe / slipping down into the shipping channels.” As touch is impossible, Laird labors to make sure his father is seen and his death de-sequestered. The poem struggles with how to be present from a distance, how to witness the ravages of the pandemic from the inside out. In this final gift of elegy, his father is isolated, but not alone, as he drifts into death’s cold waters.
In recent seasons, many have tried to acknowledge the pandemic dead in inventive memorial forms: empty chairs in D.C. and Tennessee; flags in Austin and on the National Mall; prayer flags and cairns and quilts in Massachusetts; origami cranes in Los Angeles; and freshly planted groves of native trees in Ohio. But where memorials, however elegantly conceived and assembled, function only in situ, elegy offers an alternative: a text that is easy to access, reproduce, circulate and share. Whether spoken or written, elegy leverages that most intimate, visceral and spontaneous mechanism of expression: the human voice.
Contemporary elegy, like love poetry, seeks to tell something very old and repetitive — I miss you, where are you, why were you lost among so many spared — without cliche. Each death uniquely rends our shared world; the shock of innovative elegiac form captures the specific incompleteness of being in the wake of another’s death, telling how this death and this grief matter. “In the night I brush / my teeth with a razor”: This distich — an old elegiac form renovated here by Kevin Young — is the entirety of his poem “Grief.” It jolts us awake to confront a terrible void by coupling daily routine with violence. Just as a blade might threaten the nerves protected within teeth, his image cuts through familiar language to expose raw grief. In the same volume, “Book of Hours,” we come to the oddly musical line: “I wish to wash / my face in the furnace.” Such soothing alliteration and assonance, laid out in iambic pentameter, delivers us without warning to the terrifying catharsis of a cleansing by fire. Where elegy wounds in image and sound and figurative device, it also houses the impossible strangeness of grief so that we survive it.
Many poets use elegy to tell the dead about their own passing, as if they might help us make sense of their absence and our own, now uncanny, survival. “I was asleep while you were dying. / It’s as if you slipped through some rift, a hollow / I make between my slumber and my waking,” Natasha Trethewey explains to her dead mother in “Myth.” Trethewey addresses her mother directly, seeks to summon her with just the right images, rhythms, and pitches of longing. For a moment we meet in a fertile borderland between being and nonbeing, or a time zone between is and was. We inhabit this space alongside the poet; elegy is a practice of addressing the dead so that others can overhear. Trethewey’s address to her mother is also to us, and eventually to herself, in a circuit that offers company for grief’s isolation.
Elegy, like other commemorative practices, often strains between individual and collective voice amid widespread trauma and social crisis. Mass death requires a different language to grapple with loss, fracturing traditional elegy as poets seek to chronicle many interrupted lives. Kim Hyesoon’s astonishing book “Autobiography of Death,” translated by Don Mee Choi, responds to the April 2014 Sewol ferry disaster, in which hundreds of schoolchildren drowned off the coast of South Korea in view of a horrified nation. Hyesoon hallucinates impossible rites of commemoration: “a four-ton bronze bell with a thousand names of the dead engraved on it dangles from the helicopter / The helicopter flies over a tall mountain to hang the bell at a temple hidden deep in the mountains,” or “A thousand masks float on the thousand rivers of the north, south, east, west.”
In these poems, the 304 people killed in the disaster become thousands of names, masks, and rivers because their loss is incalculable, beyond account. Each death, for Hyesoon, is multiplied by injustice and official negligence so that it becomes many deaths, intolerable and beyond repair. Her imagination inscribes the sky, water and land with their absence, remaking and remapping the world in their wake. Her poetry teaches us about the combination of imagination and courage we need to create commemorative spaces for the millions who have died, and are dying, of covid.
Elegy modulates collective anguish into form and meaning. In “The Man with Night Sweats,” poems written in response to the AIDS epidemic in the 1980s, Thom Gunn imagines lives vanishing on a wide scale, and in intricate entanglement: “Contact of friend led to another friend, / Supple entwinement through the living mass / Which for all that I knew might have no end, / Image of an unlimited embrace.” For Gunn, the living mass names our basic existential solidarity, the far-reaching interdependence of human lives.
“The Missing” goes on to explore a sense of mutual implication in others’ illness, a shared exposure that speaks clearly to the present: “But death — Their deaths have left me less defined: / It was their pulsing presence made me clear. / I borrowed from it, I was unconfined, / Who tonight balance unsupported here.” Gunn searches an ambiguity in survival, because every survival is temporary. It is hard to ignore, against these measured verses, the pressure of the shadow-word “uncoffined” for “unconfined,” as if the speaker has returned from his own burial to speak here also for himself. In a posthumous undertone, Gunn speaks with the dead. Elegiac language is a territory that the living and dead inhabit together. Four decades later, we need to reclaim this lyric territory.
Elegy does not change the fact of death. It is just poetry, as frail as the breath that utters it and a confirmation of our own precarity. As Joy Harjo tells us in “Death Is a Woman,” “I have nothing to prove your fierce life, except paper / that turns back to dust.” But somehow we are stronger in both knowing that the terms of death are nonnegotiable and still insisting, on the page and in our voice, on negotiation. The mind imagines tactics; the voice tries out its claims. This work is ours to do. Poetry helps us gather the remains of the dead, even across great distance, and offer them a place. Elegy makes our dead, sheltered from the weather, sound.
As the coronavirus pandemic increased anxiety and upended many lives, it led U.S. millennials to get more serious about end-of-life planning.
According to new research from 1Password, a digital security and privacy platform based in Toronto, and digital estate planning platform partners Trust & Will and Willful, 72% of U.S. millennials (ages 25 to 40) with wills created them or updated them in the past year.
In addition, 34% of these millennials have talked about their digital assets with their parents in the past year.
More than two-thirds of millennials don’t have a will
While the pandemic brought greater focus to end-of-life planning among millennials, they’re still largely unprepared. According to the 1Password findings, 68% of millennials don’t have a will.
In turn, respondents estimate descendants would lose access to an average of $22,500. Plus, only 38% have clarity over who should handle their digital assets after they die.
Among those who do have a will, here’s what sparked it:
With a digital handover, the top priority for respondents is giving their executor login credentials to banking and financial accounts (67%). Interestingly, 57% of millennial respondents say granting access to social media accounts is more important than giving access to email, subscription and e-commerce accounts.
Navigating a post-death digital handover
The pandemic provided a wake-up call for millennials and their end-of-life planning, no doubt. But there are some areas of estate planning that are murky. And it’s not just about the respondents themselves.
The survey finds 51% of millennials will be responsible for the execution of their parents’ wills. However, just 36% have access to their parents’ online account passwords.
While we already noted that 34% of respondents say they’ve chatted with their parents about their digital assets in the past year, 52% have never discussed it with their parents or can’t recall the conversation. Among those who have handled the execution of wills, 63% say it was more challenging than expected to access accounts after a death.
Millennials use old-fashioned ways to store documents
Old-school ways of handling important documents reign supreme among the millennial crowd. More than 4 in 5 (81%) report keeping paperwork — think birth certificate — in a physical location like a safe deposit box, safe or filing cabinet.
They share their passwords mainly by way of a written list (41%), then verbally (39%) and digitally (25%), such as through email, Google Docs, the cloud or a PDF.
As for storing passwords, 51% say they store their passwords by memory, while 25% keep them on a piece of paper. One in 5 (20%) millennials say they use a password manager.
The report also found that 48% of millennials trust their significant others the most for emergency access to their passwords, more than twice as much as their second choice — their parents (20%).
If you’re prioritizing end-of-life planning, decide who will be granted access to your digital accounts and online passwords and list out all your debts. This might include: