Category: Talking about death

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When someone hovers at the edge of death, these singers step in to ease the passage

Threshold Choir members pray before visiting a patient at the Halquist Memorial Inpatient Center in Arlington, Va.

by Debra Bruno

[I]t’s a quiet afternoon at the Halquist Memorial Inpatient Center, a hospice, as four women huddle close, talking quietly in a tight circle before walking through the doors to sing to men and women on the threshold of death.

These women are part of the Threshold Choir, a group that brings the comfort of song to dying people.

A thin woman, who is in the last weeks of life, is the choir’s first stop. She is sitting nearly upright in a hospital bed, her daughter beside her. Leslie Kostrich, the group’s leader for this day, asks the older woman if she would like to hear a few songs. She nods; the singers set up folding stools and pull up close to her bed.

“We sing in a circle of love,” the women sing, a cappella and in three-part harmony. “In music we are joined.” As they sing, the woman gazes off with a faraway look in her eyes, as if she’s trying to remember something.

The group sings another song, and as they finish, the older woman claps softly. “Thank you,” she says. “Nice.”

It takes sensitivity, situational awareness and a dash of emotional intelligence to sing to the dying. The sound of soft harmonious voices can be very comforting as life closes down, but the songs can also bring forward the immediacy of death to family members sitting nearby. Singing in such an emotional environment takes practice and a recognition that it is less a performance than a service.

For the dying and their families, the singers are hoping to bring peace, comfort and a feeling of love. “We call it kindness made audible,” says Jan Booth, who with Kostrich is co-director of the Washington-area Threshold group.

It is also very life-affirming for those who sing in this unusual choir.

“When I tell people I’m in a choir that sings at the bedside of the dying, they’ll say, ‘Oh girl, what a good thing,’ or ‘Girl, you must have lost your mind,’ ” says Kadija Ash, 66.

But the opposite is true. “Sometimes I run” to rehearsals, she says, “because of the healing.” In the two years she has been a member of Threshold, Ash says, she has gone from having a fear of death to an ability to be more accepting of life’s ups and downs.

Kostrich, 60, who has been with the group for three years, likewise says: “This has changed my life. That’s not an exaggeration. It gave my life a spiritual dimension that I was totally unprepared to receive.”

Threshold Choir — which has more than 200 groups around the world — seems to have tapped into something both primal and much-needed: a growing desire not to recoil from death or abandon the dying but to face that ultimate truth and figure out how to help ease the isolation of those near the end.

Bedside singing is a way of “normalizing death,” says Kate Munger, 68, who founded the first group in the San Francisco area 18 years ago. Many of the choirs are started and run by baby boomers, who are comfortable shaking up the accepted way of doing things, Munger says. “We’ve done that for childbirth, for education, and now for our impending death.” She says the number of people participating in Threshold Choir has grown to about 2,000.

Similar deathbed choirs have also surged, including Hallowell Singers, based in Vermont, which recently celebrated its 15th year, says founder Kathy Leo. She estimates that Hallowell has as many as 100 spinoffs, mainly in the United States.

Although they sing some requested songs, such as “Amazing Grace,” Threshold Choir mostly uses a repertoire designed for singing around a dying person. The pieces tend to be limited to just a few words, and sung without accompaniment in three-part harmony.

The idea is to keep things simple and not tied to any spiritual tradition — for instance, “Thank you for your love” and “We are all just walking each other home.” Complicated verses could intrude on the process of dying, which often involves people retreating from the day-to-day and reviewing their lives.

During the afternoon at Halquist, the four Threshold singers — Booth, Kostrich, Ash and Margo Silberstein — move out into a hallway after their first group of songs. One hospice staffer says, “I love working on Thursdays because I love listening to this group.”

The group slips into another large room with four beds separated by curtains. A frail woman with brilliant blue eyes smiles at the group. In another bed, someone is making noises that are halfway between breathing and groaning.

The blue-eyed woman asks, “Do you know ‘A Mighty Fortress?’ ” The group knows some of the words to the hymn but ends up mostly singing “oooo” to its tune. After they finish, Kostrich offers, “We do have ‘Amazing Grace.’ ” “Oh yes,” the woman answers and quietly sings along with them. After they finish, she says: “Oh, thank you. That was just wonderful.” They go on to sing “Simple Gifts” and “He’s Got the Whole World in His Hands” and then a few Threshold songs.

A TV next to a different bed blares.

After they finish, they approach a man sitting at the bedside of a woman. Can they sing?

“She’s pretty well gone out, but you can try,” he says.

As they sing “Hold this family in your heart,” the man’s eyes redden. He shifts in his seat. They sing, “Rest easy, let every trouble drift away.” His chin starts to tremble. As they begin to sing “You are not alone,” the woman begins to breathe more loudly but doesn’t move. The woman in the bed across the room, where they first sang, calls out, “Beautiful!”

An hour later, as the group gets ready to leave the hospice, Kostrich says that singing with Threshold has given her a way to process her own family’s experiences with death. When her parents were dying in the 1980s, Kostrich says, no one acknowledged they were close to death, which didn’t allow her and her family to come to terms with the losses themselves. The Threshold Choir has both helped her in a small way alleviate her own loss and help others avoid that kind of pain, she says.

There’s another thing that comes out of Threshold singing: community. And that feeling is evident when group members get together for a twice-a-month rehearsal, often in a church basement in the District. All but one singer at this rehearsal is female, but they range in age from 20-somethings to 70-somethings, African American, Chinese and white, those with tattoos and those with carefully coifed hairdos. There are a lot of hugs and laughter.

Olivia Mellon Shapiro, 71, says that group members are her “kindred spirits.” When she retired from her work as a psychotherapist, she told a friend, “Now I want to sing people out in hospices,” Shapiro says. “My father sang himself out — he died singing, and I was very moved by that.” Her friend said, “Oh, that’s the Threshold Choir.”

“Now I have a new group that feels like home to me. It really does,” she says. “I’ve also always been a little afraid of death and dying, but I’ve always loved the idea of hospices. So the idea of singing people out in hospices to get more comfortable with the idea of death and dying appealed to me.”

(The group sings several times a month at Halquist in Arlington and also at Providence Hospital in Northeast D.C. through the nonprofit hospice provider Capital Caring.)

One of the singers, Lily Chang, 28, notes that the choir is helping her confront her own fears of loss.

Chang says she’s very close to her grandmother and, given her age, worries about her. “I remember telling my mom, ‘I don’t know what I would do’ ” if she died. “Thinking about it, engaging with it in different ways makes me feel better.”

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Truly understanding the differences between palliative care and hospice

By Terri Maxwell, Ph.D., MSN

[C]are at the end of life should address all of the important elements that play a critical role in ensuring a positive end-of-life experience for patients and families. Therefore, quality end-of-life care extends beyond managing physical pain to include psychosocial and spiritual needs.

Not all long-term care professionals carry the same understanding of the issues.

Frequently, nurses serve as advocates to support patients and families in making care decisions based upon their goals and values. Ideally, physicians, nurses and other team members work together to create an atmosphere of care and compassion in accordance with patient and family wishes.

Although hospice and palliative care both aim to deliver quality holistic care, there are key differences.

The dimensions of hospice care

Hospice is the model for quality compassionate care for people facing a life-limiting illness. Hospice clinicians focus on pain and symptoms, and attend to the patient and family’s emotional and spiritual needs. Hospice is offered at a patient’s residence, such as their home or nursing home, or, if needed, in a hospice facility.

Hospice programs utilize an interdisciplinary team (IDT) approach to plan the care needed by patients and their families during the final weeks and months of life. The IDT is comprised of nurses, chaplains, social workers, physicians and medical directors, hospice aides, volunteers, bereavement specialists and other clinicians who develop and implement a plan of care that is formulated to relieve anxiety and suffering during the final months and weeks of a patient’s life. This approach allows the team to address physical, emotional, spiritual and social concerns that arise with advanced illness.

Hospice is available to people with all types of conditions and diseases, and focuses on comfort — not cure. Hospice provides care for the “whole person,” including physical care, counseling, spiritual needs, drugs, equipment and supplies related to the conditions that comprise the terminal prognosis. It also supports family caregivers, including bereavement support for up to a year after the patient’s death.

Financing hospice

Hospice care is reserved for people at the end of life who meet Centers for Medicare & Medicaid Services eligibility requirements and elect a comfort approach to care. The Medicare Hospice Benefit (MHB) requires that two physicians certify that a patient has less than six months to live if the disease follows its usual course. However, if a patient is still alive after six months, he or she can continue to receive hospice services if he or she meets eligibility requirements and demonstrates signs of progressive decline.

When a patient elects hospice, they sign off their Medicare Part A (hospital insurance) and enroll in hospice under the MHB. From that point on, hospice covers all services and care related to the terminal diagnosis and related conditions through Medicare, Medicaid and most commercial insurance.

The hospice IDT, together with the patient’s attending physician, is responsible for determining the plan of care. Under terms of the Medicare Hospice Benefit, the hospice agency is responsible for the plan of care and may not bill the patient for services. All costs related to conditions that affect the terminal prognosis are paid from a per diem rate that the hospice agency receives from Medicare. This per diem rate includes all drugs and equipment, nursing, social service, chaplain visits and other services deemed appropriate by the hospice agency. Care and medications not related to the terminal illness or related conditions continue to be paid for through original Medicare.

Distinctions of palliative care

The biggest differences between hospice and palliative care revolve around where the patient is in their illness related to prognosis, their goals/wishes regarding curative treatment, and how palliative care is financed.

Palliative care focuses on relief from physical suffering and caregiver burdens for individuals who are living with a chronic disease that may or may not be terminal, addressing their physical, mental, social and spiritual well-being. Atul Gawande recently defined palliative care “as the field devoted to providing people with serious life-limiting illness with expert care that serves their goals for quality of life, not just quantity of life.”

Similar to hospice, palliative care utilizes an interdisciplinary approach with highly trained professionals, including physicians, nurse practitioners, nurses, social workers, chaplains, and other disciplines.

Palliative care can be offered to people of any age, without restriction as to disease or prognosis. It may be appropriate for anyone with a serious, advanced illness, whether he or she is expected to recover fully, live with chronic illness for an extended time, or experience disease progression. Unlike hospice, patients receiving palliative care may continue to receive aggressive treatments, including life-prolonging therapies.

Conditions appropriate for palliative care include cancer, congestive heart failure, end stage renal or liver disease, chronic obstructive pulmonary disease, and dementia, among others. While palliative care is often appropriate earlier in the disease trajectory, referrals to palliative care clinicians are often not made until late in the disease process.

Palliative care focuses on relieving symptoms, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and depression. Palliative care providers also support patients in carrying on with daily life so that they can tolerate medical treatments. In addition, patients receive support that empowers them to have more control over their care by improving communication so that they can better understand their choices for treatment. Helping patients and their caregivers coordinate care across care settings is a hallmark of palliative care.

Financing palliative care

Unfortunately, palliative care programs struggle financially because there is no reimbursement code specifically for palliative services and Medicare does not reimburse for interdisciplinary care management. Hospital-based palliative care is paid by the health system with some fee-for-service (FFS) billing for physician services. Medicare Part B covers physician and nurse practitioner (NP) fees for outpatient care delivered in the community or in clinics. Therefore, most community-based palliative care programs utilize NPs and physicians for home visits.

Other disciplines, such as nurses and social workers cannot bill Medicare for palliative home visits. Palliative care is also paid for through flexible bundled payments under Medicare Advantage, Managed Medicaid, ACOs and other commercial payers.

While Medicare doesn’t have a palliative care benefit, CMS has authorized demonstration projects that are testing different ways of meeting the needs of seriously ill patients. The Medicare Care Choices Model allows patients to receive hospice-like support services while concurrently being treated for their illness.

Demonstrated value

Costs for palliative care teams and programs are offset by fewer trips to emergency departments and lower hospitalization and rehospitalization rates. In addition, patients and families rate the value of palliative care services highly. This explains why 80% of hospitals with 50 beds or more have established palliative care teams and some are starting to consider outpatient palliative care programs. In addition, health plans and payers, including Accountable Care Organizations (ACOs), Integrated Delivery networks (IDNs) and other types of provider-driven managed care organizations, are beginning to offer community-based palliative care programs to their patients/members to extend the benefits of palliative care into the home.

Palliative care programs and advance care planning that include earlier conversations about patient and family goals of care are consistently demonstrating their value in helping patients live their final days in accordance with their wishes. Data shows that in communities that provide greater access to palliative care programs, patients are less likely to die in the hospital.

Furthermore, findings show that patients experience fewer admissions to the intensive care unit in the last six months of life and are less likely to die in an ICU

Today, palliative care is becoming recognized as option at any stage of advanced illness, not simply reserved for care at the end-stage of life. Its use should be driven by patient need, not disease prognosis. Hospice care remains the gold standard for end-of-life care. Together, hospice and palliative care offer compassionate care when it is needed most.

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How Virtual Reality Can Help You Face Your Own Mortality

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[I] was in elementary school when I first became aware of my own mortality. It was early in the morning. My mom was in the bathroom getting ready for work, and I was on her bed covered in tears, thrashing around and yelling “I don’t want to die!” over and over.

Like a lot of people, dying terrifies me, the finality of it so unthinkable that I try not to acknowledge it in my day-to-day life. So when an opportunity came to go to “Second Chance” — an interactive experience that uses theater and virtual reality to help people come to terms with their demise — I was both scared and intrigued. It was one of 175 activities that took place during Reimagine End of Life week in San Francisco, an event that consisted of panels, film screenings, and other experiences that encourage people to talk openly about death and how it affects us.

SF-based art collective Lava Saga spent three months creating “Second Chance,” transforming a two-story gallery in the city’s Mission district into an ethereal environment.

“We believe that immersion is a way to experience things, and when we have those lived and bodied experiences, we can start to answer some of those big questions around death or around life itself or any other big topic we’d like to explore,” said co-producer Scott Shigeoka in an interview.

“Second Chance” only allowed 10 people in at a time, and they all had to be strangers (one of Lava Saga’s few hard rules). It unfolded across four different rooms, with VR serving as a key piece of the production. My group entered the first space — a darkened room lit only by blue and purple lights — and found black futons on the floor, all of which had pillows and neatly folded white sheets. Next to them were Samsung Gear VR headsets and wired headphones that attendants asked us to put on after we sat on the beds.

The nearly four-minute VR sequence pulled me through a monochrome landscape filled with massive planets, intricate caverns, and pulsating tendrils that pierced the sky. An otherworldly hip-hop track from electronic artist Shigeto made the 360-degree journey feel lonely and isolating.

When the experience was over, I took the headset off and laid on the bed; another person came to pull the white sheet up to my neck. A cellist at the corner of the room began playing a peaceful but melancholic tune. I closed my eyes as our end-of-life doula (who had spoken to the group beforehand to address any concerns) read a poem from Buddhist monk Thich Nhat Hanh.

As far as the “Second Chance” narrative was concerned, we were dead.

Simulating Death
Surprisingly, the VR music video wasn’t made for “Second Chance.” It’s a pre-existing project (known as “Hovering”) from creative studio 79 Ancestors. Lava Saga worked with VR and augmented reality curator Dream Logic to determine what kind of piece would best represent the transition between life and death.

It wasn’t easy. For awhile, they wondered whether they should even have a symbolic representation of death. After all, how do you visualize an experience that, by definition, is impossible to come back from?

“We picked [‘Hovering’] because it feels like going through a portal. And with VR in ‘Second Chance,’ we wanted it to serve that function, to be a transporting mechanism that people could go inside, be transported, and come out into a shifted reality,” said Dream Logic producer Kelly Vicars.

Though “Hovering” wasn’t created with “Second Chance” in mind, its abstract graphics made it a fitting choice for the production. During the design process, Lava Saga interviewed people who had near-death experiences, with many of them saying they were moving through a tunnel or seeing black-and-white images before being resuscitated. “Hovering” also worked well because it wasn’t scary and didn’t adhere to any specific religious beliefs.

“It was important for us to honor the diversity of cultures, traditions, and wisdom around death. … We wanted to make sure that whatever experience we used was really inclusive,” said Shigeoka.

Lava Saga and Dream Logic knew that for a lot of people, “Second Chance” would be their first opportunity to be in VR. So they tried to make the experience as seamless as possible, with attendants giving clear instructions on how to use the equipment. And Gear VR offered the least amount of friction due to its portability and ease of use (when compared to PC-based gaming headsets like Oculus Rift and HTC Vive). Participants just had to put it on and wait for “Hovering” to begin.

“My team’s goal is to use immersive technology to elevate art, to have the technology disappear,” said Vicars.

Breaking through taboo topics
After dying in VR, my group entered a series of rooms that represented a kind of liminal purgatory state. One had thin sheets of white fabric hanging from the walls and ceiling, with actors and dancers (Lava Saga refers to them as spirits) talking to each other about their previous lives.

From there, “Second Chance” starts to pull back on its mystical interpretations of an afterlife and morphs into something a little more grounded: group therapy.

In the third room, we broke into two smaller groups with trained facilitators who asked us questions about our own lives. Shigeoka said this was often an “emotionally charged” space because of the stories people would share — about their hardships, mourning for loved ones who died, or anything else they just needed to talk about. This vulnerability is why it was so vital to go through “Second Chance” with strangers instead of friends or family members.

I didn’t let my guard down completely. I couldn’t quite squash the skeptic voice in my head, which was too loud and too stubborn to go away. But I still felt comfortable in those discussions, as well as in the 1-on-1 meetings that followed in the last room, where we were randomly paired with another person from our group. That I was able to share personal details about my life at all was remarkable given that we had only met an hour before.

“Second Chance” wasn’t a perfect experience; at times, I was bored or confused about what was going on. But the core conceit — getting people to express their feelings about a sensitive topic — was sound. It reminded me that sometimes, it feels good to have someone just listen to you.

“I hope that people emerge [from ‘Second Chance’] with a new perspective and a new relationship with what it means to die. And that’s [to] live,” said Vicars.

Lava Saga and Dream Logic consider this first run as a prototype. If the show ever returns (whether in San Francisco or elsewhere), they want to keep refining it based on the feedback they receive. One day, they might make their own VR experience to replace “Hovering,” or maybe even depict that life and death transition in a totally different way.

But the idea of using theater and immersive technology to break through cultural taboos is something both teams want to keep exploring.

“It’s so important for us to open up about [death] and it’s so important for us to change the narrative around it, to make it something that should be discussed and talked about. … We need to have a conversation that goes beyond the medical world around the end of life,” said Shigeoka.

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A pet’s death can hurt more than losing a fellow human

Social norms are wrecking your grief experience.


Deciding when to take a suffering pet to be put down can leave owner’s with a lot of guilt.

By Dyani Sabin

[T]he perfect coffin for a gerbil is a Celestial Seasonings tea box. With the tea bags removed, the white wax-paper bag inside is the ideal size funeral shroud for a tiny body. This unfortunate factoid, like much of the information about how to dispose of a beloved pet’s body, comes from personal experience. I buried four gerbils in my backyard as a child, complete with incense on their graves and a few words.

As an adult with a puppy well on his way to being over 60 pounds, I hadn’t given much consideration to how I’d deal with other pet deaths until a friend asked me, “this is a terrible question, but what do you do when he dies?”

I dug into the question, and as I did I found that I wasn’t alone in wondering—but that there isn’t a great answer.

The experts I talked to emphasized that our relationship to pet loss has changed over the last century. “It’s not surprising to me that we feel such grief over the loss of a pet, because in this country at least they are increasingly considered family members,” says Leslie Irvine, a sociologist at the University of Colorado-Boulder. Sixty-eight percent of Americans own a pet, an increase of twelve percent since surveys of pet ownership started in the 1988, when it was already booming. Losing a beloved animal friend is made harder by the relative novelty of the experience, often being a person’s first experience with a close death, and by it being one of the few times most people chose euthanasia to end a life. And depending on the relationship, the loss of a pet can be more traumatic than the grief we feel after the death of family and friends. In part, this is because pets share some of our most intimate relationships—we see them every day, they depend on us, we adjust our lives around their needs—and yet publically grieving their loss is not socially acceptable.

We haven’t always felt this way, though. As a society, Irvine says, we’ve moved from thinking of pets as accessories or mindless pieces of furniture to thinking, feeling beings.

Pets become family members because they actively shape how we live. “A lot of people who have pets wake up at a certain time, not because of any alarm clock or any need of their own but because their dog needs a walk,” says Irvine. “Just as other humans participate in becoming family by doing these practices—getting up together, eating together, navigating the bathroom times, and all that—so do animals become part of the rituals that make family.”

And it isn’t just a daily ritual that makes pets familial. We form attachments to animals in the same way that we form attachments to people, says Cori Bussolari, a psychologist at the University of San Francisco. She points to a study in Science from 2015 that found when people gazed into a dog’s eyes, both the person and the dog had increased levels of oxytocin. Oxytocin, sometimes called the love hormone, regulates social interactions. It’s released when humans stare into each other’s eyes, and when parents look at their newborn children. “I’m sure if you did the study with other animals it would be the same,” Bussolari says.

I already imagine losing my puppy will be harder than burying my gerbils, but I also didn’t stare into my gerbils’ eyes quite as much. No matter the species, our bonds with our pets are unlike our other relationships. For one, Bussolari says, they’re entirely dependent on us. For another, Irvine says, “we idealize animals, especially dogs. We create them as these almost angelic characters, so we have this idea of unconditional love for us.” When they die, she explains, it almost seems like a violation of this mythos we’ve built around them.

On a personal level, the death of a pet is often a person’s first exposure to the loss of a close relationship, says Thomas Wrobel, a psychologist at the University of Michigan-Flint. Human death has been relatively sanitized, he explains. We have an industry for funerals and cremations, and you don’t typically have to deal with a dead body yourself. “With pets it’s a lot more in your face,” says Wrobel. “Unless you do the cremation option, you’ve got this dead dog you have to deal with, which is a lot more intimate experience of the death.”

With pets, you also have to decide if you are going to euthanize, and when. In a study of 305 pet owners, Bussolari found that almost seventy percent chose to euthanize their pet. It’s often medically necessary—the kindest thing to do for a dying animal—but the decision can wrack the owner with guilt. In 2005, Wrobel did a study of the relationship between symptoms of grief and attachment to pets. “In our results we saw that guilt was way up there [on the list of emotional responses], because a lot of people are carrying the animal to where it would be euthanized,” says Wrobel.Years ago, my cat, who I had rescued as a kitten, developed a urinary tract infection that lingered due to a weakened immune system from his feline HIV. I’d tried everything to help him get over it. One day, I came home and saw from his tepid movement that he was clearly in incredible pain—he was dying. Driving to the vet was excruciating, and my mom had to be the one in the room when he was euthanized because I was too upset.

“After the passing of a pet ninety-nine percent of people say to me in some shape or form, this was harder for me than the loss of my mom, or my grandma,” says Dani McVety, veterinarian and CEO of Lap of Love, a veterinary hospice network. She has found that the option to have in-home euthanasia and pet hospice makes death easier for families.

In-home euthanasia helps remove the negative experience of knowing that you’re driving your pet to their death in a place that you know causes them stress. In her practice, she sees the same kind of anxiety over deciding the right time for euthanasia at the end of a pet’s life. “I’ll tell them, I know you don’t want to hear this right now, but when this is done, you will feel relief,” McVety says. “And people do this thing after it’s done. . .they stand up and put their hands on their head and say, ‘Oh my gosh, I feel so relieved.’”

But despite the fact that 68 percent of Americans own a pet, and have grown to treasure them like members of the family, taking care of a dead animal’s body isn’t the same as dealing with a human corpse. In New York City, if you look up what to do with a deceased pet on the 311 page, you come to this statement:

If you think that’s appalling, you’re not alone.

“Wow. Wow, you end up just treating it like a raccoon. Wow, that’s crazy,” says McVety. The New York Department of Sanitation doesn’t keep data on how many pets are left on the curb so it’s unclear how often this happens. Other major cities, like Houston and Los Angeles, will pick up pets curbside, and in other cities you can call for pickup.

These guidelines are written so that the city has some response available, but they don’t take the emotional element into consideration, says Bonnie Beaver, professor of veterinary medicine at Texas A&M.

City services aren’t the only ones to fail to see how emotional a pet death can be.

“You feel often isolated, socially,” says Beaver, “because people don’t understand what you’re going through, because they might say, ‘get over it, it’s just a dog’—which is exactly the wrong thing to say.”

When you lose a person, there are rituals—the funeral, the memorial—and it’s acceptable to take time off work and talk about your loss. “What people grieving the loss of a pet don’t realize the first time they lose a pet is the strength of the grief and how long it lasts,” says Wendy Packman, a psychologist at Palo Alto University. “So it surprises the griever, and it really surprises the people who aren’t sympathetic to pet loss.” Although Packman has found that the depth and length of grief is similar to how we grieve people, this social stigma causes it to feel more painful.

“With disenfranchised grief is there is less support, and the grief can be even worse than for a person because there are no rituals,” says Packman, “and when people do go out and do a ritual, when they feel brave enough, they can be ostracized.”

As I was researching this story, friends told me about the lengths they went to in order to bury their pets properly, despite regulations about where and how you may dispose of animal remains. One snuck into their community garden at midnight to bury a pet rat under a rose bush. Another drove out in the middle of the night to bury their cat underneath a beautiful oak tree they pass on their daily commute. Even my gerbil burials, and the funeral I held for my cat were private affairs, in the backyard with my family—our secret, quiet grief shared together.

Packman believes this social acceptability of grieving for pets is changing, noting that she’s seen a rise in memorials for pets and pet cemeteries. But in the meantime, says Bussolari, we grieve our pets so deeply because we feel like we’re not supposed to. “We worry a lot about making people uncomfortable, because then they don’t want to be around us—and if they don’t want to be around us then we’re by ourselves,” she says. “But the reality is that the more we talk about grief, the more we normalize grief.”

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A Dying Father, His Son and One Last Road Trip

By ALEX GILVARRY

CENSUS
By Jesse Ball
272 pp. Ecco/HarperCollins Publishers. $25.99.

[J]esse Ball is one of our most prolific experimentalists. His last few novels, starting with the excellent “Silence Once Begun,” demonstrate a mature style that feels less like an experiment than a means to communicate deep emotional truths without the clutter of too many narrative conventions.

“Census,” Ball’s eighth and latest novel, may be his most emotionally affecting book to date. It is also his most transparent. In a candid preface, Ball explains that he wrote “Census” in memory of his brother, Abram Ball, who had Down syndrome. Ball sets out to write a book that captures “what it is like to know and love a Down syndrome boy or girl.”

In “Census,” a father and son journey across a nameless, dystopian land. The father, a recent widower and retired doctor, has just received news that he is dying. Both he and his wife had always meant to travel, but because their son was born with Down syndrome, they talked themselves out of it. The cruelty of others kept them from the road: “Ever since he was born, our lives, my wife’s, mine, bent around him like a shield.” Now, with his wife passed on, his son grown and his own end very near, he devises a plan to become a census taker, which will take him and his adult son on a cross-country road trip.

The census itself is part of the novel’s central mystery. It is both a survey of the population and an existential measurement. The father explains, “I must, in speaking to a person, know what is special about that individual, and that data must pass through me … in such a way that what is … most special about the nation … could be known and felt.” He asks participants to tell their own unique stories, after which they are marked — tattooed — on a rib, proof that they have been tallied. While the census may sound like an Orwellian device, Ball is more concerned with his characters’ emotional lives than with authoritarian foreboding. The father and son move from region to region, entering strangers’ homes, administering the census. With each new encounter a story from the narrator’s life is revealed. The best of these recall him falling in love with his wife, a renowned clown and performance artist who is also one of the novel’s most dynamic characters. In one lovely scene, prompted by his encounter with two eccentric sisters who conjure the Beales of “Grey Gardens,” the narrator remembers a performance in which giant pieces of silverware, a knife and fork, hovered overhead as his wife and other clowns evaded them. In a novel that ruminates so heavily on death, such memories provide a celebratory sense of joy.

While Ball accomplishes the stated goal of his preface, bringing the son with Down syndrome to life, the census itself leaves a little to be desired. If the narrator aims to hear each citizen’s story, that which is “most particular, most special,” he never shares enough details to make a lasting impression. This creates a kind of flatline with regard to the central conceit. Without more of the particulars, “the small, the overlooked,” it’s hard to understand what the census is meant to measure.

Yet the spare and episodic encounters do take us to some tender places. In one scene, a mother who raised a girl with Down syndrome recognizes the narrator as someone who sees what she sees in their children: “They experience the world just as we do, maybe even in a clearer light.” More than a dystopian tale, “Census” is a profound and stirring meditation on love, loss and paternity.

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Death doulas provide comfort on final journey: ‘We know how to die’

End-of-life doulas fill an emotional gap between doctors, family and attitudes about dying. 

Christy Marek, a certified death doula from Lakeville, is part of a new field that reflects gradually more open attitudes toward death.

By

[W]e should be better at dying.

That sounds judgmental, but it’s more akin to wishful thinking.

While death is a certainty, it’s rarely a goal, so we tend to resist, to worry, to grasp at new treatments or old beliefs.

But the emerging death doula movement offers another option: We can’t change the destination, but we can improve the journey.

The term doula is more linked to childbirth, describing someone present during labor to help a mother feel safe and comfortable. There’s no medical role; doulas are companions and listeners. They attend.

End-of-life doulas, also called death doulas or death midwives, similarly are attuned to a dying person’s emotional needs.

“It’s about filling a gap that the system doesn’t acknowledge,” said Christy Marek, an end-of-life doula from Lakeville. “The system is designed to tend the body. But when you get into the lonely feelings, the mess of real life, the expectations and beliefs around dying — those things don’t fit into the existing system.”

In some ways, death doulas signal a return to earlier times, when ailing parents lived with children, when life-extending options were fewer.

“Death was more of a ritual, really laboring with someone as they were dying,” said Jeri Glatter, vice president of the International End of Life Doula Association (INELDA) in New Jersey.

Family and friends “felt a sense of acceptance and completion and a knowledge that they had fully honored someone,” she said. “It’s the most loving act that they could do.”

Over time, though, “we became a very medicated society — and thank God for that. I don’t want to diminish that,” Glatter said. But medical options can create a sense of disconnect with our inevitable mortality. When those options are exhausted, “we say we’ll house them, make sure they have medication and have a bed that goes up and down.

“But people are saying, ‘I don’t feel OK about this.’ ”

Marek is the first end-of-life doula in Minnesota certified by INELDA, credited with creating the first death doula program for hospitals and hospices in 2003. It offered its first public training in 2015; last year, 700 people attended 18 sessions. Several other groups in Minnesota and elsewhere offer training and doula directories.

Glatter said the trend has roots with those who used birth doulas in the 1980s.

“These people now are burying their parents. Just as with birth, as we labor into the world fully engaged in that process, they’re saying, ‘I want to be fully engaged in this process.’ Doulas are the bookends of life.”

How can we do this together?

What does it mean to be fully engaged? Whatever the dying person wants it to mean.

“Is the person having their own experience, instead of trying to meet the expectations of the family?” Marek asked. “I’m there to create a space for the person who is dying to ask, ‘How can we do this together?’ ”

One woman, for example, asked Marek to tell everyone that she wanted acknowledgment — a greeting — each time someone entered her room, “even though it may look like she’s sleeping.”

Marek added, “I have no agenda other than reflecting to that person what they are saying, what they are feeling. I can give directions to family and friends, which is a comfort to the dying person because then people around them know what to do — and they feel listened to.”

As part of a new field, doulas occupy a niche among doctors, family, hospice and other factors. Sometimes, doulas fill practical needs, gathering paperwork or helping with funeral plans, particularly if relatives are distant, either geographically or emotionally.

More often, though, their roles are more personal: creating a vigil environment, writing letters to loved ones, helping family members recognize the signs of dying such as a change in breath and, finally, helping survivors deal with their loss.

Glatter said that doctors or hospital personnel sometimes worry that a doula will infringe upon medical decisions. But doulas have no medical role, and may even be able to provide information that doesn’t come up in medical conversations, “such as, ‘Do you know there’s a son with a restraining order?’ ”

Doulas’ lack of medical standing also enables consistency. Doctors may change. Hospice care may be suspended. “But a doula provides a continuity of care no matter what treatments are being done or not,” Marek said.

Dying as a creative process

Marek, 47, appears to wear not a speck of makeup. The physical transparency mirrors her comfort with the emotions that dying can expose. But it took her years to reach this point.

With a degree in child psychology, she intended to work with youngsters. Then she met a child life specialist, a field of which she’d never heard, describing someone who works with children with acute, often fatal, illnesses.

“It was like a lightning bolt went through me,” she said. “I knew that someday I would work with people who are dying. And it scared the pants off me!”

She went on to do other work, in the course of which she explored yoga, shamanism, writing, painting and more. She studied to become an anam cara, from pre-Christian Celtic spirituality that translates as “soul friend.”

Every few years, the idea of working with dying people surfaced, but never took hold. Then, five years ago, she learned about applying doula principles to the dying process. This time, the idea came cast as “the creative process at the end of your life,” and her path was clear.

“I feel like this has been following me my whole life,” Marek said. She took the training through INELDA, which includes vigil planning, working with the survivors, and self-care for doulas themselves. She founded a business, Tending Life at the Threshold.

“As doulas, we’re trying to normalize the experience of death,” Marek said.

She recalled one woman who said that her mother would love it if Marek would read the book of Psalms or a Hail Mary. “And I told her, ‘I can certainly do that. But it would be more meaningful if you did.’ ”

Once family members and friends learn that it’s OK to “lean into the pain,” she said, they may find a sense of comfort and ease with dying that, in turn, proves a gift to their loved one.

Another support system

Karen Axeen had been sick for what seemed like forever, after years of breast cancer and ovarian cancer and other chronic illnesses.

After spending almost all of 2016 in the hospital, she decided to enter hospice care. She also decided that she wanted a doula at her side.

“She kind of fell into the idea, talking with the hospital social workers,” said her daughter, Laura Fennell, who lives in Marshall, Minn. “I don’t live close by, so I think it was really helpful for her.”

Working with Marek, Axeen developed what’s often called a legacy project. In this case, she wrote several letters to each of her six grandchildren, to be read as they grow older.

“She wrote letters to be read on their 16th and 18th birthdays, on their wedding days, on the first day they have kids of their own,” Fennell said.

“I think I probably would have been lost after my mom had passed away, but Christy had everything organized,” she added. “It’s definitely a great service for those who don’t have family in the area.”

End-of-life doulas “are another support system,” Fennell said. “It was important for Mom to be able to get to know someone closely and have them walk her through the final process of life.”

Axeen died on Sept. 23, 2017, at age 57.

‘We know how to die’

Some death doulas volunteer with hospices or churches. Others work in hospitals, while others set up private practices.

Glatter mentioned a California prison where inmates with life sentences became end-of-life doulas “because they wanted to be able to care for their own,” she said. “They’re really an extraordinary group of men who wanted to pay their debt to society by helping other inmates as they die.”

An article in Money magazine included death doulas among “seven new jobs that reflect what’s important in 2017.” Also listed, compost collectors and vegan butchers.

The death doula trend reflects gradually more open attitudes toward death. Surveys show that 80 percent of Americans would prefer to die at home if possible, but few are able to. Yet the landscape slowly is changing. Hospital deaths slowly declined from 2000 to 2010. In that time, deaths in the home grew from 23 percent to 27 percent. Deaths in nursing homes held steady at about 20 percent.

The Centers for Disease Control suggested that the shifts reflect more use of hospice care. As the dying process becomes, for some, more grounded in the home, end-of-life doulas may become more familiar and, in Marek’s vision, help make death a natural part of life.

She reached that vision, in part, during an outdoor meditation project she began in 2014. For 1,000 days, she meditated for 20 minutes outdoors, no matter the weather. (It’s on Instagram as wonderofallthings.)

“Sometimes I’d be thinking, ‘This is awful. But that’s OK,’ ” she said. “It helped me develop a tolerance for whatever is happening, and to stay close to the fact that none of us is immune to the cycles of nature, including death.

“If you can sit when it’s uncomfortable — to be able to sit in the unknown — that’s huge.”

While family members may not be at peace with someone’s death, she added, they can be at ease with it as a natural outcome of life.

“One thing I believe firmly is that we know how to do this,” she said. “We know how to die, like every creature of nature does. We just need to get out of our own way.”

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How dying offers us a chance to live the fullest life

The price of a humanity that actually grows and changes is death.

By Rowan Williams

[P]eople still sometimes discuss the question of how you could tell that you were talking to some form of artificial intelligence rather than an actual human being. One of the more persuasive suggested answers is: “Ask them how they feel about dying.” Acknowledging that our lifespan is limited and coming to terms with this are near the heart of anything we could recognise as what it means to be human.

Once we discovered that Neanderthals buried their dead with some ritual formality, we began to rethink our traditional species snobbery about them and to wonder whether the self-evident superiority of homo sapiens was as self-evident as all that. Thinking about dying, imagining dying and reimagining living in the light of it, this is – just as much as thinking about eating, sex or parenting – inseparable from thinking about our material nature – that to have a point of view at all we have to have a physical point of view, formed by physical history. Even religious systems for which there is a transition after death to another kind of life will take for granted that whatever lies ahead is in some way conditioned by this particular lifespan.

Conversely, what the great psychoanalytic thinker Ernest Becker called “the denial of death” is near the heart of both individual and collective disorders: the fantasy that we can as individuals halt the passage of time and change, and the illusions we cherish that the human race can somehow behave as though it were not in fact embedded in the material world and could secure a place beyond its constraints. Personal neurosis and collective ecological disaster are the manifest effects of this sort of denial. And the more sophisticated we become in handling our environment and creating virtual worlds to inhabit and control, the looser our grip becomes on the inexorable continuity between our own organic existence and the rest of the world we live in.

It’s a slightly tired commonplace that we moderns are as prudish in speaking about death as our ancestors were in speaking about sex. But the analogy is a bit faulty: it’s not simply that we are embarrassed to talk about dying (although we usually are), more that we are increasingly lured away from recognising what it is to live as physical beings. As Kathryn Mannix bluntly declares at the beginning of her book about pallia-tive care, “It’s time to talk about dying”. That is if we’re not to be trapped by a new set of superstitions and mythologies a good deal more destructive than some of the older ones.

Each of these books in its way rubs our noses in physicality. Caitlin Doughty’s lively (and charmingly illustrated) cascade of anecdotes about how various cultures handle death spells out how contemporary Western fastidiousness about dead bodies is by no means universally shared. We are introduced to a variety of startling practices – living with a dead body in the house, stripping flesh from a relative’s corpse, exhuming a body to be photographed arm in arm with it… all these and more are routine in parts of the world. And pervading the book is Doughty’s ferocious critique of the industrialisation of death and burial that is standard in the United States and spreading rapidly elsewhere.

Doughty invites us to look at and contemplate alternatives, including the (very fully described) composting of dead bodies, or open-air cremations. A panicky urge to get bodies out of the way as dirty, contaminated and contaminating things has licensed the development of a system that insists on handing over the entire business of post-mortem ritual to costly and depersonalising processes that are both psychologically and environmentally damaging (cremation requires high levels of energy resource, and releases alarming quantities of greenhouse gases; embalming fluid in buried bodies is toxic to soil). Doughty has pioneered alternatives in the US, and her book should give some impetus to the growing movement for “woodland burial” in the UK and elsewhere. At the very least, it insists that we have choices beyond the conventional; we can think about how we want our dead bodies to be treated as part of a natural physical cycle rather than being transformed into long-term pollutants, as lethal as plastic bags.

Talking about choices and the reclaiming of death from anxious professionals takes us to Kathryn Mannix’s extraordinary and profoundly moving book. Mannix writes out of many years’ experience of end-of-life care and presents a series of simply-told stories of how good palliative medicine offers terminally ill patients the chance of recovering some agency in their dying. Those who are approaching death need to know what is likely to happen, how their pain can be controlled, what they might need to do to mend their relationships and shape their legacy. And, not least, they need to know that they can trust the medical professionals around to treat them with dignity and patience.

Mannix’s stories are told with piercing simplicity: and there is no attempt to homogenise, to iron out difficulties or even failures. A recurrent theme is the sheer lack of knowledge about dying that is common to most of us – especially that majority of us who have not been present at a death. Mannix repeatedly reminds us of what death generally looks like at the end of a degenerative disease, carefully underlining that we should not assume it will be agonising or humiliating: again and again, we see her explaining to patients that they can learn to cope with their fear (she is a qualified cognitive behavioural therapist as well as a medical professional). It is not often that a book commends itself because you sense quite simply that the writer is a good person; this is one such. Any reader will come away, I believe, with the wish that they will be cared for at the end by someone with Mannix’s imaginative sympathy and matter-of-fact generosity of perception.

Sue Black’s memoir is almost as moving, and has something of the same quality of introducing us to a few plain facts about organic life and its limits. She moves skilfully from a crisp discussion of what makes us biologically recognisable as individuals and how the processes of physical growth and decay work to an account of her experience as a forensic anthropologist, dedicated to restoring and making sense of bodies whose lives have ended in trauma or atrocity. The most harrowing chapter (and a lot of the book is not for those with weak stomachs) describes her investigations at the scene of a massacre in Kosovo: it is a model of how to write about the effect of human evil without losing either objectivity or sensitivity.

Perhaps what many readers will remember most vividly is her account of her first experience of working as a student with a cadaver. For all the stereotypes of the pitch-dark and tasteless humour of medical students in this situation, the truth seems to be that a great number of them actually develop a sense of relatedness and indebtedness to the cadavers they learn on and from. Black writes powerfully about the sense of absorbing wonder, as the study of anatomy unfolds, of the way in which it reinforces an awareness of human dignity and solidarity – and of feeling “proud” of her cadaver and of her relation with it.

For what it’s worth, having taken part in several services for relatives of those who have donated their bodies to teaching and research, I can say that the overwhelming feeling on these occasions has been what Black articulates: a moving mutual gratitude and respect. And the book is pervaded by the sense of fascinated awe at both the human organism and the human self that comes to birth for her in the dissecting room.

Richard Holloway writes not as a medical professional but as a former bishop, now standing – not too uneasily – half in and half out of traditional Christian belief, reflecting on his own mortality and the meaning of a life lived within non-negotiable limits. His leisurely but shrewd prose – with an assortment of poetic quotation thrown in – is a good pendant to the closer focus of the other books, and he echoes some of their insights from a very different perspective. Medicine needs to be very wary indeed of obsessive triumphalism (the not uncommon attitude of seeing a patient’s death as a humiliation for the medical professional); the imminence of death should make us think harder about the possibility and priority of mending relations; the fantasy of everlasting physical life is just that – not a hopeful prospect, but the very opposite.

He has some crucial things to say about the politics of the drive towards cryogenic preservation. Even if it were possible (unlikely but at best an open question) it is something that will never be available to any beyond an elite; any recovered or reanimated life would be divorced from the actual conditions that once made this life, my life, worth living; how would a limited physical environment cope with significant numbers of resuscitated dead? The book deserves reading for these thoughts alone, a tough-minded analysis of yet another characteristic dream of the feverish late-capitalist individual, trapped in a self-referential account of what selfhood actually is.

****

Odd as it may sound, these books are heartening and anything but morbid. Mannix’s narratives above all show what remarkable qualities can be kindled in human interaction in the face of death; and they leave you thinking about what kind of human qualities you value, what kinds of people you actually want to be with. The answer these writers encourage is “mortal people”, people who are not afraid or ashamed of their bodies, those bundles of rather unlikely material somehow galvanised into action for a fixed period, and wearing out under the stress of such a rich variety of encounter and exchange with
the environment.

None of these books addresses at any great length the issues of euthanasia and assisted dying, but the problem is flagged: Black says briskly that she hopes for a change in the law (but is disarmingly hesitant when it comes to particular cases), while Mannix, like a large number of palliative care professionals, strikes a cautionary note. She tells the story of a patient who left the Netherlands for the UK because he had become afraid of revealing his symptoms fully after being (with great pastoral sensitivity and kindness) encouraged by a succession of doctors to consider ending his life. “Be careful what you wish for,” is Mannix’s advice; and she is helpfully clear that there are real options about the ending of life that fall well short of physician-assisted suicide.

Like all these authors, she warns against both the alarmist assumption that most of us will die in unmanageable pain and powerlessness and the medical amour propre that cannot discern when what is technically possible becomes morally and personally futile – when, that is, to allow patients to let go. The debate on assisted dying looks set to continue for a while yet; at least what we have here goes well beyond the crude slogans that have shadowed it, and Mannix’s book should lay to rest once and for all the silly notion occasionally heard that palliative care is a way of prolonging lives that should be economically or “mercifully” ended.

The most important contribution these books make is to keep us thinking about what exactly we believe to be central to our human condition. It is not a question to answer in terms simply of biological or neurological facts but one that should nag away at our imagination. How do we want to be? And if these writers are to be trusted, deciding that we want to be mortal is a way of deciding that we want to be in solidarity with one another and with our material world, rather than struggling for some sort of illusory release.

Richard Holloway doesn’t quite say it in these terms, but the problem of a humanity that doesn’t need to die is that it will be a humanity that needs no more births. The price of a humanity that actually grows and changes is death. The price of eternal life on earth is an eternal echo chamber. As someone once said around this time of year: “Unless a grain of wheat falls to the ground and dies, it remains only a single seed.” 

Waiting for the Last Bus: Reflections on Life and Death
Richard Holloway
Canongate, 176pp

All that Remains: a Life in Death
Sue Black
Doubleday, 368pp

From Here to Eternity: Travelling the World to Find the Good Death
Caitlin Doughty
Weidenfeld & Nicolson, 272pp

With the End in Mind: Dying, Death and Wisdom in an Age of Denial
Kathryn Mannix
William Collins, 352pp

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