“Everyone’s death is different,” writes Jennie Dear at the end of her book, What Does it Feel Like to Die? Inspiring New Insights into the Experience of Dying. Dear is correct: just as every life is different, so every death is different. The dissimilarities in deaths lie in whether or not we accept the inevitability of death and especially in our internal dialogues about the necessity of death. Dear’s book tries to answer an old problem: how to speak openly and freely about the different ways of dying? The power of modern medicine makes these discussions particularly urgent—to preserve autonomy and avoid harm at the end of life. What does it Feel Like to Die? is an open invitation to talk about the limits of life as well as of the limits of medical technology.
Real life experiences are “the best teacher.” In Dear’s book readers learn how her family members and friends confronted the existential crisis that comes with dying. The book is directed to readers eager to understand the meaning of facing our mortality, the significance of dying, people’s deep denial about what is happening, and the ways to cope with dying. She uses many ways to answer the difficult question: What does it feel like to die? In richer societies, modern death is sometimes a kind of disease as instead of prolonging life, medicine prolongs death.
Dear discusses how in rich societies assisted suicide and euthanasia were until recently largely taboo. The major impression of the West of the Buddhist monks expelled from Tibet after the invasion by China was the almost absolute negation of death. In many Eastern cultures knowledge of self precedes knowledge of the world. The order is clear: first the inside, then the outside. In the West the order (or disorder) is upside down: first the exterior, occasionally the interior. When people do not reflect on themselves, and the purpose of living is seen in material achievements, it is difficult to accept and understand the dying process.
What Does it feel Like to Die? is not a medical book and is not directed at health professionals, but an increasing number of health professionals are themselves unfamiliar and uncomfortable with death. It is a vivid book about the process of dying by a daughter, a former journalist, and long-time hospice volunteer. The triad of daughter, journalist, and volunteer allows Dear to study the soul of very sick patients who will die in weeks or months despite the best attention from doctors and nurses. She understands the implications of end-stage disease, “a disease that cannot be cured or adequately treated that is reasonably expected to result in death of the patient.” She explains in plain language the feelings of dying patients: “dying is different for everyone. There’s no textbook”; “pain seems to dissipate in the very last few hours, and, for most people, those hours are peaceful”; “in the last two weeks of her life, my mother was ready and eager to die”; “I’ve also tried to convey some sense of the beauty and joy that often surround dying, the sense of meaning it can give to the dying person and people around her.”
Dear includes topics like the existential “slap”, where people die, whether dying hurts, and the last few hours of someone’s life. She considers doubts and questions that we should all contemplate. The language is clear, and she mixes personal reflections with the words of doctors, hospice nurses, and other published accounts of the dying process. This book can help the internal debate we should all have about death and dying and our own deaths.
Maureen Tonge’s living room looks out over the houseboats on Yellowknife Bay. She’s sitting in a comfy chair by the window, wrapped in a cozy blanket.
“I’m in the end stages of my life,” she says matter-of-factly. “Yep. I’m dying.”
It’s Sept. 16. Three weeks from now, Maureen will die at home, with her husband Robert Charpentier, her sisters and her parents, by her side.
The way she wanted it.
But on this day, with the warm autumn sun lighting up her face, she wants to talk about dying, while she still has the strength and memory.
Tonge has taught at École Sir John Franklin High School in Yellowknife since 1992.
In the last decade she’s shared her Kundalini Yoga practice with people in the North and around the world.
Her family and friends say she’s taught them how to live a good life, and now, to die a good death.
‘I would prove them differently’
Tonge was diagnosed with glioblastoma multiforme in February 2019.
Doctors gave her four months and said she wasn’t likely to see the end of 2019.
Those giving the prognosis had no idea who I was … so I would prove them differently.
– Maureen Tonge
But Tonge wasn’t giving up that easily.
“I indicated to everyone who would listen that I was not my diagnosis nor my prognosis,” she told CBC North Trail’s End host Lawrence Nayally at the end of 2019.
Tonge went through chemotherapy, but also followed her own less conventional path, working with a naturopath, and with other healers. At diagnosis, the tumour was bigger than a golf ball, but a bit smaller than an egg. Ten months later it was more like a quarter of a marshmallow.
“Those giving the prognosis had no idea who I was,” she said. “So I would prove them differently.”
By June this year Tonge begins to feel pressure between her eyes, jitters and dizziness. A scan shows the tumour has grown aggressively.
By mid-September trips to the bathroom require a supportive arm. She has trouble keeping track of conversations.
“I’m pretty low functioning now,” she says. “It has been a bit of a struggle to wrap my head around the fact that has changed so dramatically.”
But the transition from fighting death, to accepting it, has become easier.
“It’s not been a struggle to wrap my head around the fact that I am dying. Dying is an inevitable part of living. I’m welcoming it.”
Teaching about life, and death
Maureen’s sister-in-law, Kathleen Charpentier has been helping with Maureen’s care and says hearing that gives her a lot of comfort.
“We live in a culture that is death-phobic and grief illiterate,” she says. “We often make the demand of dying people to live, and I think that’s a very hard demand.”
Eleven days before her death, Maureen’s condo is quiet, but there is still laughter, and a fridge full of food from friends. Hundreds of people have been posting on Maureen’s Facebook, sending messages of love and appreciation.
Maureen’s twin, Kirsten Tonge, has come from British Columbia, and soon her parents and two other sisters will be there, thanks to a special exemption from the territory’s chief public health officer.
Kirsten describes their relationship as “halves of the same whole” and remembers cuddling up with Maureen on the gurney, when they got the news that the tumours were growing again.
Their bond goes back to the womb, but Kirsten says she’s not sure she will ever understand the grace and gratitude her twin shows in the face of death.
“Earlier this month she said to me ‘I’m healing you know … it’s not the end.'”
Kirsten believes Maureen was talking about spiritual and emotional healing of trauma from her childhood.
“You know she had some deep wounds to her spirit, and emotionally. And she’s been able to truly dig deep and use the resources she’s built, and heal herself with the love and support of so many people.”
Former student Cailey Mercredi is there to give Maureen a massage.
“She’s taught me papier mâché mask-making and then Kundalini yoga,” Mercredi said. “To say she’s taught me about love would be an understatement.”
She added that being part of Tonge’s journey toward death will stay with her forever.
“Vulnerability and the trust there, is what brings us closer as human beings. This is how we make connections and how we build community.”
It’s just hard. Knowing I’m saying good-bye, and a part of me feeling entirely ready. And another part of me, not.
– Maureen Tonge
Tonge says she can’t say how she got to a place of peace about her death, but that it has been a process, something she’s been building toward through her life.Having people around her has been essential.
“I’m so grateful that I have family here but also friends that are like family. Connections have always been really important to me.”
For her sister-in-law Kathleen, sharing in Tonge’s last days is a gift.
“I think when you share your death, you are teaching others,” Charpentier says. “I think it’s important. Because we’re all going to be there someday.”
‘There is zero fear’
Tonge says she doesn’t know what happens after death, but she’s not afraid.
“Absolutely not,” she said. “There is zero fear. I know that we are composed of energy. And I don’t believe energy can be created or destroyed.”
She does feel sadness and it wells to the surface when she thinks about the ones she’s leaving behind.
“It’s just hard,” she says, between tears. “Knowing I’m saying good-bye, and a part of me feeling entirely ready. And another part of me, not.”
Two things bring Tonge comfort: Having no regrets, and the hope she has for her family and friends. It’s an echo of what her students of art and yoga have always heard from her: “I just hope that they are able to tap into their richest opportunities, and take full advantage of that.”
Kirsten Tonge says losing her twin will be the “the most difficult loss.”
“She has taught me that this time is only one of many … it’s not the final chapter,” she said.
“She may be gone in the physical sense … but I know without a doubt that her love will always be with me, and my love will always be with her.”
Will was distraught after his dog, Ray, died. Though Ray had been slowing down and sleeping more, Will had passed it off as normal, signs that his trusted buddy was simply getting older. By the time the vet diagnosed cancer, there was little that could be done.
Looking back, Will blamed himself for not getting Ray to the vet sooner—“He was counting on me and I let him down.”—and kicking himself for not being able to afford additional diagnostics, much less treatment. “I just didn’t have that kind of money and it’s tearing me up inside.”
He couldn’t shake memories of Ray’s death, or stop the self-critical thoughts that brought guilt and a sense that “I’ll never be able to forgive myself.”
When we lose a canine companion, these kinds of thoughts and feelings may become a part of our grief. Though rooted in positive values such as loyalty, protectiveness and a commitment to our dog’s well-being, these values can also leave us in moral pain when we believe that we have failed to live up to them. According to Brandon Griffin, PhD, “Moral pain may be attributed to an event or series of events that a person views as a gross transgression of his or her moral beliefs and values, such as when we violate our own values by what we did or failed to do.”
In his book, The Loss of a Pet: A Guide to Coping with the Grieving Process When a Pet Dies, Wallace Sife, PhD, points out that caring for an animal companion involves “a complex set of responsibilities” in some ways “similar to the obligations of raising a child.” Given that we cannot always protect our dogs from suffering and may have to make decisions about when to end their lives, there may be times when we second-guess ourselves and wonder how well we have fulfilled these responsibilities.
In our grief, we may disproportionally focus on our perceived failures and imperfections rather than view our actions as those of someone doing her or his best to stand by a canine loved one during painful circumstances. Thus, when a dog dies, Sife observes, we may “need to consider the feelings of guilt and failed obligation that almost always crop up during intense bereavement for a pet.”
Often, moral pain abates as we process our grief. There are times, however, when it persists. When this happens, it may indicate deeper issues such as depression, anxiety or what counseling professionals call moral injury. According to the Moral Injury Project at Syracuse University: “Moral injury is the damage done to one’s conscience or moral compass when [one] perpetrates, witnesses or fails to prevent acts that transgress one’s own moral beliefs, values, or ethical codes of conduct.”
People struggling with moral injury may feel intractable shame, guilt, anger and/or remorse. They may experience unwanted and intrusive memories of painful events or harbor a sense of being morally defective. Over time, moral injury can lead to social isolation and a diminished sense of self-worth.
When it comes to our canine friends, there are many potential sources of moral pain. When a dog is sick or injured, we cannot talk with them about what is going on. We can’t get their input and involve them in decision-making. The pressure is on us to make painful but necessary decisions, which may involve euthanasia or treatments that temporarily cause suffering. Under such pressurized circumstances, it’s easy to agonize about what to do and to criticize whatever choices we make.
Veterinary social worker Jeannine Moga points out that dogs can be very stoical and mask underlying physical issues until they are advanced. “Diseases can progress in their bodies before they start to show overt signs of illness. Add to that the significant expense of veterinary diagnosis and treatment, and people can be faced with animal losses complicated by unknown causation, questions of ‘Why didn’t I see it?’ and worries that they’ve somehow failed to take adequate care of their companions.”
The decision for euthanasia, even when done to alleviate suffering on the recommendation of a veterinary professional, can be a source of acute moral distress. In their book, The Pet Loss Companion: Healing Advice from Family Therapists Who Lead Pet Loss Groups, Ken Dolen-Del Vecchio, LCSW, MFT, and Nancy Saxon-Lopez, LCSW, reflect on painful questions that arose after euthanizing a beloved cat.
Had we waited too long and prolonged his suffering unnecessarily? Had we put enough thought into the decision to end his life? Should we have taken him home and thought it over more carefully? Should we have sought another opinion? … Should we really have stayed with him when the vet put him to sleep? Did Reggie think that we killed him? Should we instead have said our goodbyes and left the room until he was gone?
According to Maryjean Tucci, MSEd, MDiv, lead bereavement coordinator for a hospice program and coauthor of A Peaceful Path: A Supportive Guide Through Pet Loss, decisions about euthanasia can raise other moral concerns. “When a person’s religious beliefs are such that they believe they are killing their pet by ending their life in an unnatural way, moral distress may play a role in their grief.”
“There are times,” Tucci continues, “when individuals may not understand the medical implications of what is happening to their pet and therefore are unable to make a clear decision on the process of euthanasia. If a pet partner experiences their pet struggling when their pet is being euthanized, this may cause an interruption of their grief experience by thinking they may have made the wrong decision. This is also true if the pet rallies and is perky just before the injection.”
There may be moral anguish if a grieving person looks back and concludes that they failed to understand the extent of an animal’s suffering and/or put off making a decision about euthanasia because it was too painful. In such instances, humans may blame themselves for allowing a pet to suffer. “When this occurs,” Tucci says, “there can be extreme feelings of guilt and low self-worth.”
Circumstances specific to an individual dog’s death may also cause moral pain—for example, the dog who escapes through an open door and is hit by an automobile, or the dog euthanized against an owner’s wishes due to aggressive behavior shown to a neighbor.
I worked with a patient who had no one to adopt her aging and infirm Beagle, Rosie. Days before we met, she made the heartbreaking decision to end Rosie’s life in order to save her from being abandoned and feeling unwanted. Though this client was terminally ill, much of my counseling with her focused on the moral pain of this decision despite the loving intention behind it.
Sometimes moral pain has nothing to do with the specifics of the death. For example, I worked with a woman who was providing care for her dying mother, which left her little time for her 14-year-old Basset Hound. “I was so stressed by Mom’s care that I just wound up ignoring him. He started having occasional [urinary] accidents, and I found myself getting impatient and yelling at him. I even had occasional thoughts that it would be easier if he were gone.”
When her dog needed to be euthanized, she felt at peace with the decision but agonized over having lost her temper in moments of frustration. “I feel horrible. I worry he might have thought I didn’t love him anymore or that I wanted him to die. I wish I could have that time back.”
Ritual and Remembrance
When grieving for a beloved dog, it’s important to have opportunities to share one’s grief and, if desired, engage in rituals that honor and help make sense of the loss. Unfortunately, some who have lost pets find that such opportunities for rituals and support are rare, even nonexistent.
When it comes to our canine companions, says Tucci, “Families, friends and society do not always recognize this loss as important or legitimate. Statements from others such as: ‘This wasn’t a child,’ or ‘The impact isn’t as bad as losing a sibling or a parent,’ minimize the loss for the person experiencing grief.”
She likens this to what Kenneth Doka, PhD, calls “disenfranchised grief.” In his book, Disenfranchised Grief: Recognizing Hidden Sorrow, Doka describes situations in which the significance of a loss goes unrecognized, unacknowledged or is dismissed by others—situations for which there is no recognized social or communal context in which to express one’s grief and receive support.
Feeling isolated in one’s grief can intensify the suffering of moral pain by presenting barriers to processing one’s thoughts and feelings as well as to receiving reassurances from a caring other. Attempting to grieve in isolation can complicate such pain and even cause some to wonder if there is something wrong with them. Sometimes, this isolation is experienced as abandonment, even betrayal, by those from whom a grieving person expected compassion.
In “Grief and Moral Injury,” a blog post about his grief following the death of his German Shepherd, psychologist David Fisher, PhD, describes feeling abandoned by those he counted on for support and understanding. Having no one to “witness” his “inconsolable grief,” he writes, significantly intensified his pain.
Over time, moral pain typically lessens as we grieve and gain perspective. For those who are struggling with this kind of pain, the suggestions that follow may be helpful.
• Give yourself a break. Moral pain comes from caring about doing the right thing and wanting the best for your dog. If you did not care, you would not be feeling this kind of pain. Sometimes, there are things we don’t recognize or cannot control. We may need to make decisions under duress. Intense emotions and conflicting responsibilities can make these decisions very difficult, and whatever we decide, we may criticize ourselves. Acknowledge the difficulty of this kind of pressure and let yourself be human.
• Find someone with whom you can talk. If you don’t have someone, think of somebody in your life, even if they are no longer alive, from whom you have felt love and compassion. Imagine they are in the room with you and tell them what you are thinking and feeling. Imagine their response.
• Get creative. Some people find it helpful to write in a journal. Some write poetry or letters to their dogs, telling them what is in their hearts. Others express their feelings and honor connections with deceased dogs through other forms of creative expression, including music, art, storytelling, play, humor or dancing.
• Share the story. As we tell the story of our dog’s life, even if it’s just to ourselves, we see the longer journey we had with our pet, not just the last weeks, days or hours. When we place end-of-life events in the larger context of a friendship that may have unfolded over years, we remember good times and moments of connection and warmth that may have been minimized or forgotten in the midst of our pain.
• If desired, create formal or informal rituals to honor your dog’s life and affirm the enduring meaning of the relationship. Tucci says these kinds of rituals “legitimize the grief experience and reflect the importance of the pet in this person’s life. This also becomes part of the letting go and moving forward process necessary in the healing of grief.”
• Be mindful. It’s easy to get caught up in negative thoughts and beliefs. Being mindful means paying attention to what we are thinking, sensing and feeling in the present moment without avoiding, judging or identifying with negative states. In his book, The Mindful Path to Self-Compassion: Freeing Yourself from Destructive Thoughts and Feelings, psychologist Christopher Germer, PhD, observes that “it seems that the more intense our emotional pain is, the more we suffer by obsessing, blaming ourselves or feeling defective.” He recommends bringing gentle attention to our inner experience and responding with self-compassion, “taking care of ourselves just as we’d treat someone we love dearly.”
• Beware of cognitive distortions. Part of mindfulness is being aware of our thoughts and what we are telling ourselves. When doing this, it’s important to be on the lookout for what psychologists call cognitive distortions. These are ways our minds convince us of things that aren’t true and unconsciously reinforce painful beliefs that keep us feeling bad. There are dozens of cognitive distortions, including personalizing, black-and-white thinking and negative mental filtering.
For example, emotional reasoning refers to a belief that if you feel something, it must be true. If you worry that your dog was angry at you or felt unprotected because you discovered too late that she was sick, you assume it’s true even though it’s not. The key to not getting hooked by cognitive distortions is to notice when they are occurring and gently “talk back” to them. “Oh, I’m falling into the trap of emotional reasoning. I feel sad about what happened, but Maggie was good at hiding when she was in pain. She knew how much I loved her.”
• Don’t confuse regret, guilt and shame. This is easy to do. In simple terms, regret is a sense of sadness that things turned out the way they did. It can convey a wish that we had understood a situation better so that we could have done things differently. Guilt refers to a belief that we knowingly did something that violated our code of ethics. Shame takes guilt to a whole new level by replacing the belief “I did something that was bad” with “I’m a bad person because of what I did.”
It’s easy to confuse these experiences. If you’re feeling intense regret, it’s easy to start blaming yourself. Before you know it, regret can turn into guilt and guilt can lead to shame. If you’re feeling shame, ask yourself, “Could this really be guilt?” If you’re feeling guilt, ask yourself, “How much of what I’m feeling is really regret?”
• Tend to your body and spirit. Moral pain doesn’t just affect your heart and mind. It’s important to take care of your body by getting exercise, rest, and practicing good nutrition and sleep habits. If you have a faith tradition or spiritual/contemplative practice, these can be sources of strength, comfort and perspective.
At times, moral pain can be intensified by destructive messages we’ve received and internalized at some point in our lives, often as children. Messages like, “I’m not good enough,” “I can’t do anything right,” “I have to be perfect,” “It’s my fault when something goes wrong” or “It’s my job to make sure everyone is safe/happy.” Readers for whom this registers are warmly encouraged to find a safe context, possibly with a caring professional, to explore and gain perspective on these messages.
Don’t be afraid to ask for professional help or to join a support group. It’s okay to reach out to a psychotherapist, clergy person or professional bereavement counselor. Many counselors understand this kind of pain and how deep the grief can be for a deceased animal companion.
“To die will be an awfully big adventure.” Even Peter Pan, the mischievous little boy who refuses to grow up but rather spends his never-ending childhood adventuring on the island of Neverland, attempted to see death in a positive light.
But things were different in 1902 when Peter Pan first appeared in the book “The Little White Bird.” We saw death differently then and treated it more as a part of life. Is it because we believe we’re more likely to avoid it for longer in the 21st century that we seem to shy away from talking about it? Or is it because we have removed ourselves so far from the reality of physically dealing with the dead.
Whatever the reason, a reluctance to face or even talk about dying is largely an American phenomenon. And though there are many and varied ways for families and friends to honor their dead, we don’t seem to want to talk about it until it’s too late. And then we pay others to handle most of it.
But people like Lauren Carroll are trying to change all of that. Carroll and her partner, Erin Merelli, formed Deathwives in hopes of forging a cultural shift which encourages people to think and talk more freely about death. They describe Deathwives as “a collective of professionals who care about the practice of good death.” And they want to educate others about their end of life options which they say should include in-home funerals and death doulas.
“You have the right to a good death,” Carroll said. “We seek to widen the narrative around death and dying and support our community as we remember how to care for one another till the very end.”
A former funeral director and current hospice volunteer, Carroll serves on the board of directors for the National Home Funeral Alliance (NHFA). She said she wants to create connections between funeral homes, home funeral educators, death doulas and families. Merelli is a death doula, ceremonialist, funeral officiant and grief counselor. She is often called to sit with people as they die and to “create ritual and sacred space around the dying process.”
Most people don’t know that home funerals are an option available to them, Carroll said. “There have never been laws against this. You have the freedom to die at home and to take care of your loved ones at home. The family legally owns the body even after death in a hospital. The only law is that you have 24 hours after death to refrigerate or cremate the remains.”
According to the NHFA, “keeping or bringing a loved one home after death is legal in every state for bathing, dressing, private viewing and ceremony as the family chooses. Every state recognizes the next-of-kin’s custody and control of the body that allows the opportunity to hold a home vigil. Religious observations, family gatherings, memorials and private events are not under the jurisdiction of the state or professionals in the funeral industry, who have no medico-legal authority unless it is transferred to them when they are paid for service.” The National Home Funeral Alliance offers a list of legal requirements on the books in each state—either statutes that are applicable to all or regulations that fall under the state mortuary board’s set of procedures applicable for licensed funeral directors only.
“Keep this in mind: there are no funeral police,” the alliance states. “And there are exceptions to every rule, many of which happen when someone dies in the middle of an ice storm or a weekend or a holiday or a multitude of other unpredictable circumstances. Even under perfect conditions or professional care, many of these requirements are not logistically or practically enforceable.”
When America was a new nation, families cared for their dead in their own homes. The preparation, dressing and readying for a funeral was done there, and the caskets were typically built by the family themselves. As parlors gained popularity, families held their funerals in them. Traditionally rooms filled with a family’s finest possessions, parlors were ideal locations for honoring the dead. The parlors of grander homes even had a “death door” for the removal of the deceased family member, as it was considered improper to remove a body through a door the living entered.
The Civil War brought about the practice of embalming, as so many men were dying far from home, and the practice allowed the time needed to bring the bodies home to their families. With embalming came the appearance of funeral homes, funeral directors, morticians and undertakers all over the United States. The National Funeral Directors Association (NFDA) as well as the first school of mortuary science—the Cincinnati School of Embalming, now known as the Cincinnati College of Mortuary Science—were both formed in 1882. It was really the beginning of the same funeral process we use today, though advances in the profession have improved the ways that morticians care for the body as well as the ways that families can remember their dead.
And new trends on how to honor the dead and even just how we talk about death are being presented all the time. Environmentally-friendly funerals are being offered by so-called “green” funeral homes. Advocates of these services say that it’s less expensive, uses less natural resources and eliminates the use of hazardous chemicals such as formaldehyde.
And apparently we’re using a lot. According to an article by Tech Insider, more than 800,000 gallons of formaldehyde are put into the ground along with dead bodies every year in the US. In addition, conventional burials in the US every year use 30 million board feet of hardwoods, 2,700 tons of copper and bronze, 104,272 tons of steel, and 1,636,000 tons of reinforced concrete, Tech insider reported. “The amount of casket wood alone is equivalent to about 4 million acres of forest and could build about 4.5 million homes.”
According to the NFDA, a green funeral may include no embalming or embalming with formaldehyde-free products; the use of sustainable biodegradable clothing, shroud or casket; the use of recycled paper products; serving organic food; locally-grown organic flowers; funeral guest carpooling; and natural or green burial.
“In a purist natural or green burial, the body is buried, without embalming, in a natural setting,” the NFDA states. Any shroud or casket that is used must be biodegradable, nontoxic and of sustainable material. Traditional standing headstones are not permitted. Instead, flat rocks, plants or trees may serve as grave markers. Some cemeteries use GPS to mark the locations of gravesites. A natural or green burial may also simply mean burial without embalming, in a biodegradable casket without a vault, when permitted by a cemetery.”
Jon Hallford, also a member of the Deathwives Collective, owns Return to Nature Burial and Cremation in Colorado Springs, Colorado. Hallford told 9NEWS.com in Denver, Colorado last month that he plans to begin offering aquamation as an alternative to cremation. “Aquamation uses an alkaline hydrolysis system that consists of a metal chamber that uses water and lye for the cremation process, which is a cleaner process than the traditional cremation,” 9NEWS reported. “Once he has the system in place, he’ll be the only funeral home in Colorado to offer the service.”
The environment isn’t the only reason we’re talking more about death. Death doulas are becoming more mainstream. Just as a doula or birth companion provides guidance and support to a pregnant woman before, during or after the first days of the life of her baby, the death or end of life doula accompanies the dying person and their loved ones through the final months, weeks and days of their life. The doula provides support, resources, education and friendship for this period of life, whether it lasts a year or a day.
Then there are now so-called “Death Cafes,” where people gather to share cake and coffee, tea or hot chocolate and talk about death. A “Death Café is a space where you talk about death to become more engaged with life. Such is the paradox of a Death Café,” writes Abby Buckley about a meeting at the Alchemy Café in Gawler, South Australia. “We came from all walks of life, aged 6 months to 64 years old, from all over South Australia but met as equals because we all have one thing in common. We know we are going to die. We don’t have many spaces in our lives or our culture that are conducive to talking about death and dying. But people are hungry to talk about their experiences, to listen to others and to reflect on death.”
Death Cafés typically offer visitors an opportunity to discuss death without judgment, without prescribed ideology, and without any sales pitches. They are not grief counseling or bereavement sessions. There are no agendas, objectives or themes, rather they are often philosophical—and at times, humorous—discussions about death.
Death Café is both the name of the organization that created the format of the death-discussion groups and the term for the meetings themselves. To date, some 9,045 Death Cafes have taken place in 65 countries—4669 of them in the United States—since September 2011.
Death Café calls Death Café a “social franchise,” meaning that people who sign up to the organization’s guide and principles can use the name Death Café, post events to the website deathcafe.com and talk to the press as an affiliate of Death Café.
The Death Café model was developed by the late Jon Underwood and his mother, Sue Barsky Reid, based on the ideas of Swiss sociologist and ethnologist, Bernard Crettaz.
It’s not surprising the concept of Death Cafes has taken off. There’s been a tendency in the last few years to bring death out from among the list of forbidden topics.
“We have become such an isolated nation,” Carroll said. “Death is normal, and for some reason we’ve made it seem like the most abnormal, scary thing. We don’t even talk about it. Like Jon Underwood said, ‘Just like talking about sex won’t make you pregnant, talking about death won’t make you dead.’”
Carroll said society has removed the family from taking an active part in the death process “other than picking out the casket and flowers. In the past we had to prepare and think about it. It helps the healing process to be more hands-on, and it has been proven across the board that it helps to be active in grief.”
With Deathwives, Carroll hopes to teach others to have a better “relationship” with death, to take away the fear. “I have a healthy relationship with death. Knowing I’ll die, and talking about it, has made my life fuller. That’s how everyone single person should live.”
Carroll compared the moment of death to the moment of being born. “We don’t know what happens after death, just as a baby comes into the world having no idea what’s about to happen. We’ve all done it before. We were all born. We opened our eyes to the unknown. I have a feeling what’s next is going to be pretty amazing. If you think about it, no person who has had a near-death experience has ever come back and said that it was awful.”
When 2020 began, our routines felt familiar, well within what we thought of as “normal.” We felt a relative sense of security. Then the pandemic struck like a storm out of the Bible, a plague beyond what we could have imagined. The world turned on a dime, and suddenly governments worldwide were mandating lockdowns, and we were all sheltering in place.
Where we live in Boston, April and May brought a surge of COVID-19 infections and deaths. An email Marnie received during the shutdown began: “I am writing with a heavy heart to tell you. . . .” It was about a friend from her meditation group who had been hospitalized and then died a few days later from the virus. That week, there were almost no non-COVID-19 stories in the news, as the US pandemic death toll surpassed 100,000.
In a column in the New York Times, David Brooks asked readers how they were holding up. In the first few days, he received 5,000 replies. “I think I . . . expected a lot of cheerful coming-together stories,” Brooks told NPR. “But what I got shocked me. It was heart-rending and gutting frankly. People are crying a lot . . . It tends to be the young who feel hopeless, who feel their plans for the future have suffered this devastating setback, a loss of purpose, a loss of hope. Then the old, especially widows and widowers, talk about the precariousness of it, the loneliness of it. They just feel vulnerable, extremely vulnerable. While a lot of people are doing pretty well, there’s just this river of woe out there that really has shocked me and humbled me.”
Now we see that aspects and qualities of grief and grieving are universal, whether you have suffered an individual loss, or are experiencing losses on a global scale. Individually and collectively, we are grieving. We’re experiencing large, difficult feelings, even if we don’t recognize them as grief: sorrow, fear, anger, anxiety, depression, hopelessness, or disorientation. These troubling emotions, sensations, and mind states are the ways we humans respond to loss.
We feel the loss of family members, friends, and neighbors we loved, celebrities and public figures we followed. We’re missing the person we were and the way we lived not long ago. In the midst of this invisible, highly contagious virus, we grieve the loss of a kind of innocence. As we don our masks and gloves, we fear being infected or infecting others, and wonder what impact these changes will have on our worldview and our emotional well-being.
We grieve the loss of our work and economic stability, the familiarity of seeing our kids go off to school, and the ease of chatting with friends and even strangers. We grieve for shuttered offices, factories, and gathering places. We grieve for elders in nursing homes, family members who cannot visit one another. In the midst of national protests over police brutality and systemic racism, we bear witness to the deep grief of the African American community and other communities of color who suffer a disproportionate share of deaths and infection in the pandemic.
And yet, despite all the towering amounts of grief we are holding, many of us harbor our own “great palace lies” about grief. We may believe that grief should last for only a fixed and fairly brief period of time, or that the “grieving process” should proceed in a particular sequence.In 1969, psychiatrist and renowned researcher Elisabeth Kübler-Ross wrote a popular book about the five stages of moving through dying and death. Decades later, Kübler-Ross and coauthor David Kessler wrote a book in which they worked with the same stages—denial, anger, bargaining, depression, and acceptance—to explain how people move through the grieving experience.
Even at the time of writing their book On Grief and Grieving, the authors acknowledged that Kübler-Ross’s ideas about stages were widely misunderstood.She did not mean to assert that there is only one prescribed timeline or a unique sequence of emotions and experiences (denial, anger, and so forth) that most people would predictably follow as they grieved.
And yet, Kübler-Ross’s ideas gained traction and have continued to penetrate popular culture with far-reaching and, for some people, painful consequences. In my bereavement groups, I often hear people worry aloud that they have missed an important stage or even plaintively ask if they are grieving “correctly.”
But the reality is that grieving has no predictable stages or particular timeline. Grief has as many different expressions as there are people who grieve. We all share some common and universal experiences, yet each of us moves through grief in our own way and in our own time. Russell Friedman, author and cofounder of the Grief Recovery Method, describes grief as “(a) normal and natural emotional reaction to loss or change of any kind.”
Your grief will last for as long as it lasts. Some of us experience grief as a series of waves. One day you feel distraught and immobilized. The next day you find the unexpected strength to do an errand. Perhaps you walk down the aisle of a supermarket, thinking that you are having a good day. And then, you see something that reminds you of what and whom you’ve lost. Your heart is broken open by something as ordinary as a can of tuna.
You could think of grief as a passage. You are torn from the life you knew before. You are not who you were, and you are not yet who you will become. You are, in a very real way, between identities. This experience—profoundly different for each of us—is confusing and agonizing, and it may also be a doorway for transformation.
Though this may be hard to believe or accept at first, grief can be seen as an invitation to grow and, eventually, to find meaning in suffering and in the experience of loss. A heart that is broken open offers a precious gift—a chance to become more authentic with yourself and with other people.
When you try to turn away from grief, when you hope to bypass or escape it, grief persists. Painful emotions—such as sadness, anger, or fear—linger and may even seem worse than ever. Until you stop running, begin to name or acknowledge and lean into all you’ve been through, and build a friendly relationship with grief, you’ll almost certainly continue to suffer.
Alan Wolfelt, author, educator, and grief counselor, puts it this way: “ . . . the pain that surrounds the closed heart of grief is the pain of living against yourself, the pain of denying how the loss changes you, the pain of feeling alone and isolated—unable to openly mourn, unable to love and be loved by those around you.”What would it mean to live instead with an open heart, denying none of your pain or grief, mourning in whatever ways feel appropriate and comforting, being loving and loved by those around you?
Holding grief close, as a companion, allows for opening to love, compassion, hope, and forgiveness. Author and grief therapist Francis Weller writes, “When we don’t push the pain of grief away, when we welcome and engage it, we live and love more fully.”
Grief Meditation: A Practice
Sit quietly for a few moments and settle into the meditation by noticing the subtle movement in your body as you breathe in and then out. Say slowly, to yourself, the following phrases:
May I welcome all my feelings as I grieve.
May I allow grief to soften and strengthen my heart.
May I hold my sorrow with tenderness and compassion.
A Few Contemplative Suggestions
Spend a few moments reflecting on any “rules” or expectations you carry about grief:
What do you think grief should look like?
How long do you think grief should last?
What do you view as a normal or abnormal way to grieve?
Consider where you acquired your beliefs about grief:
The LGBTQ+ community has been among the groups historically underserved by hospice, with mistrust of the health care system at large and provider bias as leading roadblocks to quality end-of-life care. Hospice providers are increasingly working to better understand the LGBTQ+ population and improve access to care.
Issues of equity, inclusion and diversity have plagued the nation’s health care system. Providers of all walks are reaching deeper into the roots of disparities to understand barriers and expand care among underserved African American, Hispanic, Jewish and LGBTQ+ communities. While widespread data is scarce, available research indicates that the LGBTQ+ population is among those groups under-utilizing hospice care. According to a 2018 AARP study, 60% of the LGBTQ+ community are concerned about a lack of sensitivity to their needs among health care providers.
“When LGBTQ+ seniors need to access long-term care, most of them do not don’t feel safe and our health system in many places doesn’t make them feel safe,” said Ruth Thompson, national hospice medical director at Elara Caring during a session at the National Hospice and Palliative Care Organization (NHPCO) Interdisciplinary Conference. “We may have no idea that we’re taking care of people who are gay, lesbian, transgender and bisexual, but we are. It’s not unusual that they are not going to share with you that part of their personal history, which is really unfortunate because it’s who they are. The history of discrimination and poor education of the health care system really has had a profound effect on these people and compounded their fears. This population of people tend to have worse health outcomes as compared to their heterosexual and cisgender peers.”
With barriers such as patients’ fear of discrimination and general mistrust, hospice providers will need to build up awareness and break down biases around gender identity and sexual orientation to foster greater trust among underserved LGBTQ+ communities. A general lack of understanding and awareness among providers, along with stigmas, stereotypes and biases have been drivers of under utilization.
“No one is asking for special care or special treatment,” said Michael Kammer, medical social worker and bereavement counseling professional at Ohio’s Hospice of Dayton, during the conference session. “We just want care that takes into consideration the unique needs, concerns and experiences that we have had just like we do for any other minority population. We’re working on developing the awareness and ability to identify and join with people in the LGBTQ community. We need to shift our thinking about this from seeing the LGBTQ population as a special population to more inclusive care. Everyone needs the same specialized care, and it requires self-awareness on our part to shift how we perceive these groups and become aware of our own implicit biases, and being able to better interact with and support all our patients.”
Expanding education and awareness among hospice staff regarding the challenges, concerns and needs could extend reach for LGBTQ+ community members. Older LGBTQ adults often face issues such as economic insecurity, reduced caregiving support networks and misconceptions around sexual orientation and gender identity.
Hospice providers can improve access and experience of care by shifting organizational cultures and patient care practices, with executives leading the charge on deeper integration of LGBTQ+ education.
“In order to be successful and transform your organization’s culture, you must really start from the top,” said Kammer. “There needs to be buy-in at that executive leadership level. This requires a lifelong commitment, self-critique and self-evaluation and being culturally humble so that we can become aware of our implicit biases and mitigate those to provide truly person-centered care. This is not a one-and-done activity.”
Addressing gender identity and sexual orientation during the patient admission processes is one strategy toward greater LGBTQ+ inclusion in the hospice space. Providers will need to look beyond the scope of information on electronic health records to better understand how aspects such as gender identities and personal pronoun preferences can impact the experience and quality of care for LGBTQ+ patients.
Despite increasing advocacy, the field has much room to grow when it comes to improving cultural understanding and learning the specific social determinants of health for LGBTQ+ communities.
“People are struggling with LGBTQ+ issues that are impacting their psychosocial and spiritual situations, and it’s really critical that those patient discussions remain respectful,” said Thompson. “You can identify champions and have a team willing to stand up and make sure that people are having respectful conversations around care goals. When people are reaching the end of life, it’s important that they can be who they are and be with who they love. Those can really be challenges for the senior population because our LGBTQ+ elders are really the group of people who experienced a lot of that historical discrimination before the Gay Rights Movement many years ago. We’ve come a long way since then, but we still have a long way to go.”
The Day of the Dead or Día de Muertos is an ever-evolving holiday that traces its earliest roots to the Aztec people in what is now central Mexico. The Aztecs used skulls to honor the dead a millennium before the Day of the Dead celebrations emerged. Skulls, like the ones once placed on Aztec temples, remain a key symbol in a tradition that has continued for more than six centuries in the annual celebration to honor and commune with those who have passed on.
Once the Spanish conquered the Aztec empire in the 16th century, the Catholic Church moved indigenous celebrations and rituals honoring the dead throughout the year to the Catholic dates commemorating All Saints Day and All Souls Day on November 1 and 2. In what became known as Día de Muertos on November 2, the Latin American indigenous traditions and symbols to honor the dead fused with non-official Catholic practices and notions of an afterlife. The same happened on November 1 to honor children who had died.
Day of the Dead Traditions
In these ceremonies, people build altars in their homes with ofrendas, offerings to their loved ones’ souls. Candles light photos of the deceased and items left behind. Families read letters and poems and tell anecdotes and jokes about the dead. Offerings of tamales, chilis, water, tequila and pan de muerto, a specific bread for the occasion, are lined up by bright orange or yellow cempasúchil flowers, marigolds, whose strong scent helps guide the souls home.
Copal incense, used for ceremonies back in ancient times, is lit to draw in the spirits. Clay molded sugar skulls are painted and decorated with feathers, foil and icing, with the name of the deceased written across the foreheads. Altars include all four elements of life: water, the food for earth, the candle for fire, and for wind, papel picado, colorful tissue paper folk art with cut out designs to stream across the altar or the wall. Some families also include a Christian crucifix or an image of the Virgin of Guadalupe, Mexico’s patron saint in the altar.
In Mexico, families clean the graves at cemeteries, preparing for the spirit to come. On the night of November 2, they take food to the cemetery to attract the spirits and to share in a community celebration. Bands perform and people dance to please the visiting souls.
“People are really dead when you forget about them, and if you think about them, they are alive in your mind, they are alive in your heart,” says Mary J. Andrade, a journalist and author of eight books about the Day of the Dead. “When people are creating an altar, they are thinking about that person who is gone and thinking about their own mortality, to be strong, to accept it with dignity.”
Celebrating the Dead Becomes Part of a National Culture
Honoring and communing with the dead continued throughout the turbulent 36 years that 50 governments ruled Mexico after it won its independence from Spain in 1821. When the Mexican Liberal Party led by Benito Juárez won the War of Reform in December 1860, the separation of church and state prevailed, but Día de Muertos remained a religious celebration for many in the rural heartland of Mexico. Elsewhere, the holiday became more secular and popularized as part of the national culture. Some started the holiday’s traditions as a form of political commentary. Like the funny epitaphs friends of the deceased told in their homes to honor them, some wrote calaveras literarias (skulls literature)—short poems and mock epitaphs—to mock living politicians or political criticism in the press.
“This kind of thing happens alongside the more intimate observation of the family altar,” says Claudio Lomnitz, an anthropologist at Columbia University and author of Death and the Idea of Mexico. “They are not in opposition to one another.”
The Rise of La Catrina
In Mexico’s thriving political art scene in the early 20th century, printmaker and lithographer Jose Guadalupe Posada put the image of the calaveras or skulls and skeletal figures in his art mocking politicians, and commenting on revolutionary politics, religion and death. His most well-known work, La Calavera Catrina, or Elegant Skull, is a 1910 zinc etching featuring a female skeleton. The satirical work was meant to portray a woman covering up her indigenous cultural heritage with a French dress, a fancy hat, and lots of makeup to make her skin look whiter. The title sentence of his original La Catrina leaflet, published a year before the start of the Mexican Revolution in 1911, read “Those garbanceras who today are coated with makeup will end up as deformed skulls.”
La Catrina became the public face of the festive Día de Muertos in processions and revelry. Mexican painter Diego Rivera placed a Catrina in an ostentatious full-length gown at the center his mural, completed in 1947, portraying the end of Mexico’s Revolutionary War. La Catrina’s elegant clothes of a “dandy” denote a mocking celebration, while her smile emerging through her pompous appearance reminds revelers to accept the common destiny of mortality.
Skulls of Protest, Witnesses to Blood
Over decades, celebrations honoring the dead—skulls and all—spread north into the rest of Mexico and throughout much of the United States and abroad. Schools and museums from coast to coast exhibit altars and teach children how to cut up the colorful papel picado folk art to represent the wind helping souls make their way home.
In the 1970s, the Chicano Movement tapped the holiday’s customs with public altars, art exhibits and processions to celebrate Mexican heritage and call out discrimination. In the 1980s, Day of the Dead altars were set up for victims of the AIDS epidemic, for the thousands of people who disappeared during Mexico’s drug war and for those lost in Mexico’s 1985 earthquake. In 2019, mourners set up a giant altar with ofrendas, or offerings, near a Walmart in El Paso, Texas where a gunman targeting Latinos killed 22 people.
As Lomnitz explains, one reason why more and more people may be taking part in Día de Muertos celebrations is that the holiday addresses a reality that is rarely acknowledged by modern cultures—our own mortality.
“It creates a space for communication between the living and the dead. Where else do people have that?” Lomnitz says. “These altars have become a resource and connection to that world and that’s part of their popularity and their fascination.”