If you think telling your child Fido, Fluffy or Feathers has “gone to live on a farm” is a good strategy when the family pet dies, think again.
By Kellie Scott
You’re likely missing an opportunity to help them grieve and learn about death, no matter their age, according to the experts.
But what you tell them and how involved they should be is dependent on developmental stage and personality.
Being prepared is an essential part of helping your child through the pet grieving process.
We spoke to a child psychologist, vet and mum-of-two who experienced the loss of a family pet for advice.
Why lying about a pet’s death won’t help
“Pet death is a very big opportunity to learn how to talk about death and how to cope with future death, like extended family, for example,” says Elizabeth Seeley-Wait, clinical psychologist and principal of a children’s psychology clinic.
Dr Seeley-Wait says the modelling a parent shows around processing and coping with the death will go “a long way for their children”.
“Everyone is different in their coping style, but what parents at least want is to be honest about what is going on, and as open as they can be in the process of feeling sad and going through those emotions over time.”
After all, she says, children will often catch you in a lie.
“And if not, they will figure it out later and feel pretty uncomfortable with that.”
What to do when your pet dies
Whether your pet dies naturally, in an accident or is euthanased, kids will have questions.
How you answer those questions will depend on their developmental stage and personality, says Dr Seeley-Wait.
“The younger the child, the more simple terms you should use, and you probably want to be more general,” she says.
When children reach the pre-teen and teenage years, naturally they are going to want more information, warns Dr Seeley-Wait.
“Parents should use their best instincts on that, because they will have a sense of whether their child can handle details.”
She says the children that ask a lot of questions tend to be worriers.
“Kids ask a lot of questions, but they also ask questions they can’t handle the answers to.”
What should be consistent through all the ages, she says, is children being involved in some way to grieve properly.
When Kasey Drayton decided to put down her 16-year-old dog Max, her daughter and son, aged nine and 11 at the time, knew it was coming.
“He had been sick for some time, so we were hoping he would pass away naturally, but that didn’t happen,” she says.
“We explained he was possibly in pain, and it was the kindest thing to do.
“There was a bit of resistance in that they didn’t want to lose him, but once they understood it was better for him, they were fine.”
How to decide if your child should attend the pet’s euthanasia
The younger they are, the less they need to see, recommends Dr Seeley-Wait.
“To be honest, there would be some teenagers who don’t really need to see that.”
Sydney vet Sandra Nguyen says in her observations, including children in the euthanasia can help them process the death.
“I feel it’s hard for a kid to understand that their pet has gone to the hospital and won’t come back,” she says.
“I’m relatively comfortable for kids to be there if we are putting the pet down — not all vets are the same.”
Kasey included her children in Max’s passing, something she says was a beautiful experience.
“On the day, we explained the vet will come here and it will be quite quick,” she says.
“We all took turns in holding him and saying goodbye. Tears were flowing.
When children are present for a euthanasia, Dr Nguyen keeps her language around the process as simple as possible.
She explains the euthanasia process as an injection that is an overdose of anaesthetic.
“I do tend to use pretty frank language, but I soften my voice,” she says.
“A friend of mine who is a childcare worker said not to say ‘put to sleep’ as kids can then associate sleep with dying.”
Dr Nguyen also prepares parents for how children might react.
“I’ve seen kids absolutely sobbing … but as they are leaving the pet hospital they will turn to Mum and Dad and ask for a new puppy,” she says.
“The parent can get quite upset that the child doesn’t seem to be mourning the loss.”
But ultimately, Dr Nguyen says having your child attend a euthanasia is a case-by-case situation.
“Some parents don’t want their kids’ last memories to be of the pet dying, and that is the same with adults — some people decide not to be there for the euthanasia themselves.”
How to deal with the aftermath of a pet dying
No-one grieves the same way, explains Dr Seeley.
In Kasey’s experience, her two children dealt with Max’s death differently.
“My daughter put a little shrine up in the bedroom and kept his collar and his old dog toy,” she says.
“She still refers to him and keeps his spirit alive, and that was her way of grieving.
“My son grieved quite differently. They both felt it acutely, but very different.”
Rituals like burying the pet or planting a tree are worth making time for, Dr Seeley-Wait says.
“Do something that commemorates the life of the pet,” she says.
“Those moments are pretty special and memorable. And at least really model to the child that you should take a moment out of your busy lives to commemorate the passing of someone important.
“Talk, remember their pet, share stories, and let them feel a part of the process of the ritual of letting a loved one go.”
In Kasey’s home, Max lives on.
His body was cremated, and his ashes are in an urn in the backyard with a plaque.
“We still very much talk about him. That sort of helps.”
While enjoying her seventh decade on the planet, Donna Personna knows her remaining days are numbered. Yet the prospect of her demise doesn’t scare her.
“The end question. ‘The end.’ It’s not a touchy subject for me. I’m irreverent,” said Personna, a transgender woman who grew up in San Jose and now lives in San Francisco. “I have been on the planet for 72 years. I learned long ago this was going to come.”
Personna, a beloved drag performer, playwright, and hairdresser, credits her Mexican heritage with teaching her that death is a part of life. She pointed to the annual Dia de los Muertos holiday — the Day of the Dead in early November — as one example of how, from an early age, she was taught to embrace one’s mortality rather than fear it.
“I am not worried about it. It doesn’t scare me,” said Personna, who graduated with honors from San Jose State University and, for years, owned her own hair salon in Cupertino, which she sold a while back but continues to cut hair at once a month for longtime clients.
Born into a large Baptist family with 16 siblings, Personna remains close with several of her older brothers and their families in the Bay Area. She is confident she can rely on them in the case of emergencies or if her health deteriorates.
“Some of my nieces said, ‘You can live with us,'” said Personna, who has designated one of them the beneficiary of her estate.
Her Plan B, however, is to move into a pueblo outside Guadalupe, Mexico where her Social Security check and personal savings will be worth more.
“I want to spend the rest of my days in Mexico. I don’t want to die in San Francisco,” said Personna. “I am longing to go there.”
Confronting the end of one’s life isn’t easy for the majority of seniors, whether LGBT or straight. Most have not declared an executor for their estate, let alone discussed with their physician what sort of care they want in their dying days.
“It is rooted in the death phobia that North American culture has,” said Brian de Vries, a gay man and professor emeritus of gerontology at San Francisco State University who is a leading expert on end-of-life issues among LGBT seniors.
There are an estimated 2.7 million Americans who are LGBT and 50 years of age or older. Of that age group, 1.1 million are 65 and older. By 2060 LGBT elders in the U.S. are expected to number more than 5 million.
This generation of LGBT seniors differs from its heterosexual counterpart in significant ways, according to aging experts. Most of the LGBT seniors experienced discrimination not only in their day-to-day lives but also in medical settings due to their sexual orientation or gender identity.
LGBT seniors are oftentimes no longer in touch with their birth families, having been ostracized after they came out of the closet. And many don’t have a partner, spouse, or children of their own to rely on as they age.
“The issues around aging alone are particularly meaningful in LGBT seniors,” said Lisa Krinsky, 55, a lesbian who is the director of the LGBT Aging Project at the Fenway Institute in Boston.
And in the case of many older gay men, they lost their families of choice, whether it was their friends, partners, or spouses, to the AIDS epidemic. Thus, they are more likely to be aging alone. And if they are living with HIV, they are largely unprepared for their retirement years having believed they would have died by now.
Dearth of research
For LGBT seniors, living alone “sets them up to more likely need institutional care as one gets older,” said Daniel Stewart, a doctoral student and adjunct professor at Saint Louis University in Missouri.
Stewart and his colleague, Brandy Fox, a Ph.D. student at the university’s Center for Health Care Ethics, presented their research on LGBT older adults’ end-of-life perceptions and preparations at the Gerontological Society of America’s annual conference, held last month in Boston.
“There is not a lot of research on LGBT end of life,” noted Stewart.
Talking about the end of one’s life can be exceedingly difficult for LGBT seniors, according to aging experts, because of their lack of trust in their health care providers or not having close familial or social connections, leaving them without a family member or friend they can turn to and discuss how they want to be cared for as they age.
“We know gay and lesbian seniors delay getting care,” said Kysa M. Christie, Ph.D., a clinical psychologist at the Veterans Affairs Boston Healthcare System during a panel at the aging conference focused on palliative and end-of-life care for LGBT older adults.
The reasons can vary, said Christie, from internalized homophobia and heterocentrism to stress-related stigma and poverty. It is estimated that one in five LGBT seniors, she said, “have no one to call in a crisis. Compare that to one in 50 for heterosexual seniors, so that is a stark difference.”
Fox and Stewart interviewed 17 LGBT seniors living in the Midwest about end-of-life issues. The cohort expressed concerns about being a burden as they aged and largely had unfavorable views of health care settings, particularly religious affiliated hospitals.
As one 78-year-old woman told the researchers, “Me and the medical profession do not get along,” recalled Fox.
De Vries and his colleagues in the field of LGBT aging call the lack of discussions about one’s palliative care needs, from who will be one’s power of attorney to what a person’s advance directives are for their medical care, “the missing conversations.” It is a subject that seniors must repeatedly address as their circumstances and choices may change as they age.
“I like that it is plural, as once you have the conversation people think you are done with it,” said de Vries. “It is hard enough to have the conversation. And once you have it, you want to wipe your hands dry and move on. As if that is it; it is one of many conversations people need to have, I think.”
For several years now de Vries has been involved in research in Canada looking at end-of-life issues among LGBT seniors. In one paper de Vries co-wrote, and is under review at the International Journal of Aging and Human Development for inclusion in a special issue on LGBT aging, he and his colleagues note that evading end-of-life discussions “keeps death ‘in the closet’ — along with one’s hopes, fears, and wishes about their end of life.”
The issue struck close to home for de Vries six years ago when his husband, John Blando, Ph.D., who is also a professor emeritus at SF State having worked there as an instructor/adviser in the Department of Counseling, was diagnosed with Parkinson’s disease. The men, both 62 and together 33 years, began to seriously discuss end-of-life issues, such as how to care for each other, as they drew up their wills and estates. When they moved four years ago from San Francisco to Palm Springs and had to revise their wills, they also completed their advance health care directives and durable powers of attorney.
“These naturally involve deeper discussions about end of life — at least that was our experience,” said de Vries. “Of course, elements of end-of-life discussions have dotted our other conversations as we talk about our plans and hopes for the future. I will admit to some discomfort in some of these conversations — about raising issues that we both fear, about releasing strong emotions — but they ultimately rest on expressions of love and opportunities to share.”
Since the couple retired to Palm Springs, de Vries has continued to work on end-of-life issues and helped launch a group called PALS, short for Planning Ahead for LGBT Seniors. It presents seminars where people can discuss a range of palliative care issues, from entering hospice care to planning one’s funeral.
“We have a funeral home director come in who is gay and talks about his experiences and the issues and the complications he has seen and how they could be mitigated if people only planned ahead,” said de Vries.
He also borrowed a concept from Britain known as a “death cafe,” where people meet socially to talk about death and dying issues. The gatherings are held at least once a month in Palm Springs and attract upward of 20 people or more.
“What is so neat is it is an in-your-face approach to it. It is not a ‘passing away cafe’ or something subtler. It is a death cafe,” said de Vries. “The idea is it just kicks the door open and brings it out of the closet and brings it into a public space and invites people who may not know each other to a safe space to have these conversations.”
For those LGBT people who have thought about how to plan for their end-of-life care, they tend to focus solely on matters related to their death or dying and not the months or years leading up to their final days. As an example, de Vries said when he once asked a focus group of gay men if they had a will or written out their funeral plans, most had. Hardly any of them, however, had determined who in their life would take them to the hospital or pick them up when, and if, they were discharged.
“It kind of provides an entry into this. It is a bit innocuous to ask someone, ‘I need a ride back and someone to sit with me for an hour, would you do that?’ People feel honored to have been asked and that someone cared enough about me to think I could help them with this,” said de Vries.
Asking for help isn’t always easy for LGBT seniors, noted the Fenway Institute’s Krinsky, even when they have family or friends who can assist them. She recalled talking once to a group of 20 older lesbians and asking them if they would be willing to go to the pharmacy for a friend.
“Eighteen said they would go for someone,” said Krinsky.
But when she flipped the question and asked the women if they would request help for themselves in getting their medications from the pharmacy, “only eight hands went up.”
Krinsky refers to such a model of care as “horizontal caregiving,” where a circle of friends, neighbors, and/or co-workers rely on each other to look after one another.
“We see tight families of choice taking care of each other as best as they can,” she said, “as people are concerned about how will I care for myself as I age.”
Such a structure, she said, upends the heteronormative approach of relying on one’s biological family to provide caregiving. It is expected that a married straight couple’s children and grandchildren will look after them in their senior years and that responsibility is passed on with each new generation.
“Right now, we a have a vertical model of multi-generational caregiving,” Krinsky explained.
Even though Personna lives in an LGBT-affirming city like San Francisco and has her family’s support, she is cognizant of the fact that there are still challenges that LGBT seniors must confront.
“Because of my orientation it is totally different than a heterosexual family and their end-of-life situations. So many things are already in place for them,’ she said. “By law you get things and your family connection is built in. My community, we have to build that and do the work. People my age usually don’t have what the heterosexual person has, like built in grandkids to come over and take you to lunch.”
Five years ago Personna moved from Cupertino into the city to help care for her friend, Bill Bowers, 71, a member of the famed gender-bending group the Cockettes whose outrageously designed jackets became a must-have for rock stars such as the members of the Rolling Stones and Led Zeppelin.
Bowers, a gay man who is HIV-positive, had been living alone at the Derek Silva Community when he had a stroke that left him unconscious for two days in his studio apartment. After that episode, he moved into a two-bedroom unit so that he would have a roommate who could look after him. After he lost his first roommate to cancer, Bowers asked Personna to move in.
“I can’t live alone,” said Bowers. “I asked Donna because she was traveling back and forth from the city to Cupertino on weekends to move in. She is here to be my caregiver.”
Personna not only ensures Bowers makes it to his various medical appointments and takes his daily regimen of medications but also provides companionship. They also share many of the same friends and can reminisce about their younger days in the city.
Bowers has designated an executor for his estate and thought about how he would prefer to be cared for at the end of his life. For example, he doesn’t want to be put on life support should it come to that.
He expects to live out his days in San Francisco, though Bowers said if he could afford it he would spend the rest of his days in Paris or somewhere tropical, like Tahiti or the jungles of South America.
Unafraid of death, Bowers is concerned about how he will die.
“I don’t want to suffer,” he said. “I watched my former roommate go through weeks of suffering. I don’t want to go through that or have someone have to watch me suffer.”
When somebody dies in the Catholic tradition, people generally know what to do. There’s the saying of the Last Rites at a dying person’s bedside, the vigil for the deceased — also known as a wake — and, often, a formal Mass of Christian Burial.
In the Jewish tradition, there’s the practice of sitting shiva: the week-long mourning process during which the family of the deceased remains at home, and friends and relatives call on them to pay their respects.
In the Islamic tradition, the deceased’s body is ritually bathed and shrouded in white cloth before Muslims of the community gather to perform the Salat al-Janazah, the customary prayer for the dead.
But what happens when you die and you don’t follow any faith tradition?
When Iris Explosion — an entertainer and social worker who prefers to go by her stage name — was widowed unexpectedly at age 28, she and her friends had to create the memorial service for her husband, Jon, from scratch.
Explosion and her husband were not conventionally religious — she describes herself as a “lax Jew,” while her husband, a queer man interested in alchemy and other occult practices, often felt alienated from the born-again Christianity of his parents. The memorial service her friends created a few days after his death, she says, contained a blend of traditions and practices individual to Jon.
A Jewish friend recited the Mourners’ Kaddish. The group told stories — some reverential, some “bawdy” — that reflected all aspects of Jon’s personality. They played an orchestral rendition of the theme song to Legend of Zelda, Jon’s favorite video game. Friends from out of town dialed in on Skype to share their stores. Numerous friends gave Explosion rose quartz, a stone associated in some New Age and occult traditions with heart healing, as a gift.
The memorial service — as well as a second funeral service, which took place a few months later, and was similarly eclectic in style — focused on Jon’s personality and interests rather than being constrained by a specific set of traditions.
Explosion is just one person among the 24 percent of Americans who identify as religiously unaffiliated. For the religious “nones,” the issue of what happens when you die is an open question in more ways than one. According to a 2008 American Religious Identification Survey, the most recent year for which data is available, 29 percent of Americans do not anticipate having a religious funeral, for whatever reason, and given the steady increase in religious “nones” over the past decade, that number will likely only rise.
But what do secular funerals — or death rituals more broadly — look like? What can they provide that religious death rituals can’t? What are the challenges involved in putting them together?
And as secular funerals become increasingly individualistic, tailored to the preferences and needs of the deceased, rather than a given religious or spiritual tradition, what does that mean for the sense of community engendered by ritual?
Secular funerals are part of a wider “unbundling” of religion
It started with weddings.
Scholar and psychologist Philip Zuckerman, author of Living the Secular Life, suggested in a telephone interview that secular funerals are just the latest iteration of the secularization of major life stages overall.
Its genesis, he said, lies in the proliferation of secular weddings in America. In 2017, just 22 percent of American weddings took place in houses of worship, a nearly 20-point drop from 2009, according to data from the wedding website the Knot.
“The first thing we saw was zillions of people going online and registering with the Universal Life Church,” said Zuckerman, referring to an organization that virtually automatically ordains people over the Internet, “so they can perform their own weddings for friends and family, so they can still make it sacred but not under the auspices of religion.”
Different states have different laws about the extent to which Universal Life ordinations are legally valid for performing weddings. Funerals, however, have no such restrictions.
Zuckerman posits that among the people he’s interviewed for his book research, the desire to have a secular funeral isn’t just about not wanting to affirm the existence of a God or an afterlife that the deceased may or may not believe in. Rather, he says, it’s also about wanting to preserve a sense of the deceased’s individuality.
“They just don’t want fairy tales. They don’t want to be told, ‘So-and-so’s in a better place now,’ or, ‘So-and-so is now suckling the bosom of Jesus’ — they can find that talk annoying,” Zuckerman said. “We want to curate our own Facebook page. Why wouldn’t we want to curate our own funeral?”
More and more, Zuckerman said, he sees people choosing their own music and their own speeches that they want to be read after they die. “I think that is part of our growing individual and less of this care of tradition … more and more people want to feel the idiosyncrasies of the dead person and the specialness of the dead person.”
This attitude, he said, is particularly prevalent in the United States. “We all like to think in the United States that we’re special. Why wouldn’t we want our funerals to be special too?”
Certainly, for Iris Explosion, commemorating Jon’s life in a way that felt true to his personality and character was a priority. From sharing Jon’s favorite Spotify playlists with his friends to curate the music selection for the services to working in references to My Little Pony — a show Jon loved — Explosion and the couple’s friends created a memorial for Jon that fit his character.
By contrast, Explosion said, she declined to attend other memorial services, like one hosted by Jon’s family in his home state, that had a more Christian focus, instead circulating an email to attendees of that service asking them to donate to Planned Parenthood, which she felt better reflected her husband’s values.
Explosion’s experience dovetails with a phenomenon called religious “unbundling.” A term coined by Harvard Divinity School researchers Casper ter Kuile and Angie Thomas, who have covered how phenomena like CrossFit and Soulcycle function similarly to religions for their participants, “unbundling” refers to the way both the religiously unaffiliated and the religious alike are increasingly willing to pick and choose elements of spiritual traditions.
Someone might, for example, be a committed Christian but also practice Buddhist meditation or yoga, or be an atheist but attend Jewish family holidays and read tarot cards. In a pluralist landscape, in which people are used to gathering information and ideas from multiple sources (not least through the internet), a more individualized approach to religion and life rituals is all but inevitable.
As a culture, we still haven’t figured out what secular death rituals should look like
Even for those of traditional faiths, death is a phenomenon that defies easy answers. But for the religiously unaffiliated, processing and dealing with death and its aftermath can be an especially loaded task.
Brad Wolfe is trying to help them do that.
Wolfe is the founder of the week-long Reimagine End of Life festival. The singer-songwriter and author was inspired to work in the end-of-life space after watching a close college friend’s struggle with terminal cancer. The festival, which takes place in New York and San Francisco, partners with community centers and artists to curate a 300-strong series of events — from talks to workshops to performances to museum displays — dealing with the subject of death.
“Death is often the central coalescing element around which many religions are formed,” Wolfe told me in a phone interview. “As we’ve become more secular in some communities … there’s an increasing hunger for that space … to come together and explore this topic.”
The New York festival, which took place around Halloween, featured a range of explorations: a class on how to write your own obituary, doctors talking about dealing with their patients’ deaths, live musical performances exploring themes of loss and bereavement.
What connects each event is a sense of intentionally: that people are actively setting aside time and space to deal with a weighty topic.
Both Wolfe and Zuckerman identify similar elements of what that “coming together” looks like. Ideally, both say, it involves elements of ritual, community gathering, and a sense of meaning: How do we conceptualize a person’s death as part of a bigger picture?
Wolfe suggested that we might be better off looking at this “coming together” not as a nonreligious event but as an expansion of the definition of what religion means. At least two Reimagine events are, fundamentally, immersive theater performances. In one, participants are invited into a phone booth to have conversations they wish they’d had with somebody who has died.
In another, participants role-play members of a fictional bereavement support group. Speaking about these events, Wolfe argued that the lines between art, ritual, religion, and performance are deeply blurred.
“The boundaries between art and religion are more porous when it becomes a practice explored with intention,” he said. What matters is the sense of significance shared by participants: “Having a practice, a shared system, allows us to connect in ways that give us a sense of comfort and something we know we can turn to.”
The idea or combining artistic creation and end-of-life ritual is far from new to Janie Rakow, president of the International End of Life Doula Association. As a “death doula,” Rakow works in hospices, helping those facing the end of their lives develop rituals and practices around their death. While she works with patients from a wide variety of religious backgrounds through the hospice, she tailors her work and approach to the individual in question.
One of the most important parts of the end-of-life process, she says, is the act of creation. She helps her patients develop what she calls “legacy projects”: individual artistic works, from a memory box to audio letters.
“Everyone has a legacy,” Rakow says. “So [I ask myself] what kind of legacy project could we possibly create with this person to really leave behind a sense of who they are or were?”
Next, she asks patients to help plan their own death — where they would like to be? What music they would like to be listening to?
“There may be some ritual work done around that,” she says, even if it’s “as simple as surrounding their bed, holding hands, saying a prayer or saying poetry, reading something to them, [or] lighting a candle.”
The point is to help dying people take an active, creative role in the story they leave behind.
Often, Rakow says, these rituals are tailored to individual passions. She gives the example of one man she worked with, who was dying from ALS, a degenerative neurological condition that prevented him from being able to move. With his wife, Rakow created a series of guided visualizations for the man, who loved hiking, “so we would bring him with his eyes closed on the most detailed and specific hike that we could from the very beginning to hiking all the way through.”
She’d walk him through ”smelling the forest and feeling himself walking up the hills and hearing the birds chirping and looking over at the crystal clear lake. And the more descriptive we could get, we were able to bring him back into his body that he wasn’t able to use through his mind.”
Secular rituals present their own set of challenges
One of the most difficult parts of creating secular death rituals is compensating for the lack of built-in community, or built-in structure, that often accompanies more established religious traditions.
Zuckerman pointed out that the secular bereaved don’t necessarily have a clear road map, or community support, to help them deal with the pragmatic aftermath of a death.
“One of the biggest problems for secular culture [is that] you have to cobble together and make it yourself. If you want your kid to have a bar mitzvah, it’s all taken care of. You want your kid to go through confirmation class in the Episcopal Church? Boom, they’re enrolled. If you want to do a secular version of that? Good luck. You’re on your own. You have to figure it out, explain it to people, rent the space, find people, figure out how to write up your own program. … It’s a lot of effort.”
The lack of intentional secular communities, Zuckerman said, only intensifies this problem. “With religious communities,” he said, “not only is the structure of the funeral in place, but there are going to be people who are going to immediately sign up to cook dinner for your family for a month and they’re going to deliver food to your doorstep and they’re going to help you get your kids to school and they’re going to do a lot for you. And when you’re secular, you don’t have those kinds of resources.”
For some secular Americans, the idea of having a “chosen family” — a close-knit network of friends — helps fill in the gap. Just as Friendsgiving has become a phenomenon among urban millennials, friendship networks more broadly have become an increasingly vital part of social cohesion, replacing both extended family structures and traditional organized religious communities.
That was certainly the case for Explosion. She cites her friends’ involvement in making the service possible at a time when she didn’t feel capable of planning herself. “I needed camaraderie and community,” she said, and I feel like I had it.”
At the same time, she says, she had less of a blueprint for how to cope with the next stages of grief after about six months.
“People go back to their own lives,” she said. “And it was hard to feel that sense of community. Without a church or synagogue to bind us together, it maybe felt like it dissipated. People missed their friend and their co-worker. But for me, it’s like, I miss my husband who lived with me, and it was hard to feel that sense of community after time had passed.”
The next step forward might be intentional secular communities
Explosion’s story points to a wider tension in the world of secular funerals and the creation of secular culture more broadly. On the one hand, the benefits of the “unbundled” religious landscape, for many secular Americans, lie in the opportunity to create truly new, individualistic rituals and experiences. We have the opportunity to curate our identities and public personae event after death, creating experiences that feel unique to us.
On the other hand, what risks getting lost in the process is precisely that feeling of collective identity that demands subsuming our individuality in a wider whole. Religious rituals and language, from Catholic ceremonial liturgy to the Salat al-Janazah, may not feel fully and uniquely “us,” but they nevertheless define and orient a wider community and give us a sense of shared values.
The 19th-century sociologist Émile Durkheim saw religion primarily as a shared construction of identity; in his seminal 1912 work The Elementary Forms of Religious Life, he wrote, “The most barbarous and the most fantastic rites and the strangest myths translate some human need, some aspect of life, either individual or social.”
As more and more Americans leave organized religion, the next question is whether, and how, many of them will gather together, and how an increasingly individualistic conception of identity can be reconciled with the real, human need for group belonging. As secular funerals and death rituals become the new standard, we may see some of these rituals become more group-centric.
For Explosion, for example, the process of grieving led her to an unexpected new ritual. During her husband’s life, she said, she often played a video game called Destiny with him, looking up the location of objects hidden in-game and giving him hints to find them. While she never particularly got into the game, she said, she enjoyed playing it with him. After his death, she started watching YouTube videos of people playing the game, or its sequel, to remember the time they’d shared. Then she decided to buy the game’s sequel to play it herself.
“I’ve been playing this game I wouldn’t have played if he hadn’t died. And it’s been meditative for me. Finding the little things, like doing these things we used to do, felt like a pilgrimage in a way,” she said.
Sometimes, Explosion communicates with other players in the game online. While she’s only told a few of them about her personal history with the game, she’s nevertheless found a community that can accompany her in a time of grief.
“When we do a big quest or a raid together, there’s always a moment for me of, you know, okay, he would have done this. He did this in the old game. Now it’s me kind of picking up this mantle.”
The secular funeral liturgies we see in the future may transition from being individualistic to being based on other nonreligious elements that bring a community together. They may involve the music of My Little Pony or the playing of video games.
Ultimately, they’ll represent two fundamental human needs. First, to make sense of a beloved’s death. And second — and just as importantly — to not do it alone.
The good doctor is irked. In a very gentle way, but still.
“I think it was Confucius who said that the beginning of wisdom is to call things by their correct name,” says Dr. Ira Byock, 67, founder and chief medical director at the Providence St. Joseph Health Institute for Human Caring in Torrance, California. “So to be perfectly grammatically correct and to be absolutely legit, let’s focus on the adverbs and the adjectives, since what we’re really talking about is Dying Well.”
Which is exactly where throats start to get cleared and the death-phobic among us try to edge toward the exits. Because no matter the fact that each and every person alive to read this must one day perish, none of us wants to perish. Particularly not in misery and solitude. “I’ve had patients who have literally said to me that they’d rather be pushed down a flight of stairs,” intones Byock, “than have to face a future of crap care in some facility at the end of their lives.”
But Byock is not in the euthanasia camp — dying quicker doesn’t mean dying better. His pitch, instead: a menu of a few different things, the most compelling being “psychedelic-assisted therapies.”
Studies show about 25 percent of Medicare spending gets poured into caring for people in their last year of living — which would add up to $175 billion last year. That number is catching the eyes of cost-cutting politicians. All this penny-pinching has caused Byock to turn a jaundiced eye to the spate of now-legal physician-assisted death states: California, Colorado, the District of Columbia, Hawaii, Montana, Oregon, Vermont and Washington. “I call it Physician-Hastened Death,” says Byock. “And why the rush to hustle the old and the sick into the hereafter? Excuse me if it just seems a little too convenient to me.”
Byock’s New Jersey roots, played through the betraying trace of an accent, are even more in evidence as he inveighs, not without flashes of humor, against dying badly and too soon. Working one of his first physician gigs after med school in a rural Montana emergency room for about 14 years, Byock created a clinical assessment tool that measured the quality of life for people who are suffering.
His prescriptions for the medical-industrial complex now include listening to patients, formulating care plans for disease and symptom treatments, helping them sleep, helping them move their bowels, addressing family needs and perhaps most importantly training doctors to do this early. So medical schools have to teach about caring for seriously ill or dying people up to and including the ethics of decision making, and should face financial penalties if they fail to do so. “Most med schools dedicate one month for pregnancy care even if the doctors in question won’t end up delivering babies,” Byock says. ”But 70 percent of physicians will be seeing sick or dying people.”
Byock talks about learning to listen, being sensitive to older patient needs — and then comes the needle-scratching-across-the record moment when he brings up psychedelics.
“I’m a child of the ’60s,” Byock laughs. “And there are legitimate medical uses of psychedelics when we’re talking about end-of-life wellbeing issues.” With an eye to easing pain and creating comfort, Byock turns to the early, legal uses of psychedelics as an adjunct to therapy, as well as the recent and well-publicized benefits of using psychedelics to mitigate PTSD.
Elizabeth Wong, a Northern California nurse and Byock fan who is training to be an end-of-life doula, points to controlled studies that show psychedelics having “lasting effects for up to six months on anxiety issues. It’s real science.” As legalization of medical and recreational marijuana has made clear, this is less of a traditional Democratic/Republican divide, says the committed progressive Byock, but more of which stakeholders win and which will lose.
Losing? If the Dying Well’ers were to succeed, pharmaceutical companies and medical equip
ment manufacturers would take a hit. A contingent of pro-lifers under the aegis of the American Life League has blasted Byock’s work as “stealth euthanasia,” a charge Byock believes is risible. And winning? Nurses’ aides, nursing homes, hospices, long-term care facilities and pretty much anybody who expects to be dying.
“I think you’ll need more than a scorecard to get people to change their minds about this,” says senior care worker Josefine Nauckhoff. “Or at the very least America will have to take seriously those magical, mystical countries that have figured this out.”
Like? “Canada,” Byock says. “They’re taking this seriously,” with an emphasis on hospice centers, senior care facilities and addressing end-of-life issues as though they were both real and manageable.
Byock is pushing the U.S. to follow suit via his indefatigable advocacy in the wellness community, faith-based Catholic initiatives, books, conferences for reimagining the end of life and even the Death Over Dinner movement, where people bite the bullet, as well as biscuits, and talk seriously about death.
A movement is evident in the growing number of related books, death cafés, conferences, efforts at real legislative change and hospitals that are dealing on their own. In 2016, three-quarters of all U.S. hospitals had a palliative care team — focusing on improving quality of life for those with serious illnesses — up from one-quarter of hospitals in 2000, according to the Center to Advance Palliative Care.
“This is not just about avoiding suffering,” Byock said. “I’m in it for the joy. But, I mean, we’re all going to die. Best we do so the best ways we can.”
Byock and an ad hoc group of like-minded experts propose the following public policy planks to improve end-of-life care:
Raise training standards for physicians, nurses and allied clinicians in geriatrics, palliative care and related topics.
Establish minimum program standards for “palliative care” (disciplines, staffing, services, hours).
Require palliative care consultation before high-risk surgery or low-yield treatments for patients with advanced age or physiologic frailty.
Eliminate the requirement to forego disease treatments to receive hospice care for comfort, quality of life and family support.
Long-term care: Require adequate staffing of nurses and aides.
Long-term care: Require living wages and benefits for aide-level workers.
Annually revoke licenses of nursing homes in lowest 10 percent of quality and resident safety scores.
Award new licenses only to nursing homes qualifying as Greenhouse, Planetree or Beatitude-style models.
Each evening, Tina Castanares sits with her 97-year-old mother and reviews the next day. Castanares tells her mother who will wake her up in the morning and help her get ready for the day. Then her mother recites what she wants and doesn’t want paramedics to do in case she has a heart attack during the night.
Castanares knows that might sound morbid, but the ritual keeps her mother’s mind sharp and comforts her to know that her mother’s end-of-life wishes will be considered in an emergency.
That’s why her mother filled out a Physician Order for Life-Sustaining Treatment form, commonly called POLST. A recent study says that nearly half of all Oregonians who have died since the form was created had one filled out and the percentage of people doing so has only grown. The state leads the country how many people have a POLST form.
About 31 percent of people who died from 2010 to 2011 had a POLST on file with the state’s registry. A group of Oregon Health & Science University researchers, along with one from Harvard’s Dana-Farber Cancer Institute, found that number had jumped to 45 percent between 2015 and 2016.
In that same time frame, the number of deaths in Oregon by natural causes increased nearly 13 percent while the number of forms filled out by nearly 66 percent. Researchers say that indicates the popularity of the form has grown independent of the size of the population who would need it.
Oregon has led the country in palliative care in several ways. One of the most high-profile is Oregon’s Death with Dignity law, passed by voters in 1994 and enacted in 1997, years before other states started to adopt similar physician-assisted suicide laws.
But POLST is possibly the most impactful. The Center for Ethics in Health Care at Oregon Health & Science University put together a group of health care providers from the state to create the document, which allows anyone to say what kind of life-saving measures they want or don’t want in an emergency.
Every state now has some form of a POLST form. Oregon also has the most robust registry that any doctor or emergency worker can access in seconds.
Paramedics in Oregon are allowed to start CPR or other resuscitation techniques on a person in a medical crisis at their own discretion. But the chance of it working can be as low as 3 percent for people who are permanent residents of a nursing home. So many frail and older people fill out a POLST form that refuses those resuscitations measures.
Castanares’ mother is one of them. When an ambulance came twice, both times for non-life-threatening injuries, emergency crews were able to immediately look up her POLST form and see that she doesn’t want to be evaluated for anything beyond the injury. She has also made it clear she doesn’t want a breathing tube or other interventions other than those that would make her comfortable and able to be at home before she dies.
“She just really wants a natural death and really feels the POLST protects that,” Castanares said.
OHSU Center for Ethics in Health Care Director Dr. Susan Tolle said that many people who fill out a POLST form do it for the same reasons. However, the number of people who want extensive medical care in emergency situations has increased, according to the study.
About 13 percent of people who had a POLST form filled out when they died in 2015 to 2016 requested every life-saving measure, whereas only 8 percent did in 2010 to 2011.
And sometimes those desires change over time. Many people fill out more than one POLST over the course of their life, Tolle said, as their diagnosis changes or they experience new ailments.
“This is like any other medical order: if the wishes and the values and the context change, the orders need to change so that the plan of care is clearly guided as someone moves from one care setting to another,” Tolle said.
Tolle was also surprised to find that many people fill it out earlier in life.
The older an Oregonian is, the more likely they are to have a POLST form on file with the state. For people 95 and older, nearly 60 percent have a form — an increase of 83 percent over the last five years. But even people in their 60s and 70s have filled out the forms at a growing rate.
More than 31 percent more people between 65 and 74 had a POLST on file when they died than in 2010.
That could change how doctors talk to patients about POLST forms. Many people who are frail or have weak immune systems die suddenly from pneumonia or complications relating to disease. Tolle also said that people with memory or dementia conditions have started to fill out forms years before they expect to die.
Doctors tend to recommend POLST forms for people who are within months or a year of death. But Tolle said that might be excluding people who want to state their needs early and often.
“We didn’t really think carefully enough or fully understand the special needs of those at the most advanced age and frailty, and especially those with cognitive impairment,” Tolle said.
Grief, as you might have sadly discovered, is like a river that takes us where it wants us to go. We can’t stop those heartbreaking reality waves of anguish but we can learn to once again drift with purpose. Getting there is rough, because no matter how many well-meaning friends tell you “time heals all wounds,” there are just some losses we get “through” but we never get “over.” No grief is like your grief because no relationship was quite like yours.
Grieving the loss of a loved one is horrific enough, but it is even harder when you’re a member of the LGBTQ community. I know. I’ve felt this disenfranchised grief. Gay grief is marginalized. Many of us, depending on where we live and what kind of network we have, are excluded from experiencing society’s mourning process.
My girlfriend of 14.5 years died five years before same sex marriage was made legal. While I was the health care proxy and caregiver, I’m haunted that I was not able to file a wrongful death suit regarding medical malpractice because I was not an “immediate family” member. I was not invited to the funeral hosted by her family. And compared to many of my gay sisters and brothers, I got off easy.
There are thousands of members of our community who cannot even tell their employers that the love of their life has died for fear of losing their job, and much worse.
We’ve made significant inroads in the past decade. But despite legislation on same-sex marriage, a push for tougher anti-hate crime laws, and the World Health Organization’s declassification of transgender people as ‘mentally ill,’ the prejudice has not gone away.
The current administration has unleashed a culture of hate that is once again stacking the deck against us. They have erased LGBTQ terminology from various government forms. Beautiful families with same-sex parents are scrambling to lock down their rights in the event that rulings are overturned. Many are forced to conceal their true selves for fear of harassment. This dread and anxiety, especially among our trans family members, is making access to proper healthcare a terrifying experience.
Homosexuality is illegal in 73 countries. While not criminal in the U.S., there is a menacing climate present that ranges from wedding cake controversies to harassment and beatings.
If you lose your precious love, you might be denied a proper grieving process. This grief is forceful, commanding and unpredictable. We must grieve the loss of our loved one and the person we became with our love by our side.
If a long-term illness is the ultimate cause of death, will the medical staff be considerate and respectful of your relationship? How will you manage the discussions with the funeral home and cemetery arrangements? Will it be difficult to deal with your dear mate’s family? Are you afraid to tell your boss and co-workers about your relationship? These are questions straight people never have to ask.
Gay grief is often not taken as seriously as the bereavement process is for a hetero relationship. Co-workers, neighbors, and so forth, might not have any gay people in their circle of friends and don’t know what to say. They might not even try to console you. You might be completely ignored.
It’s important to stick close to like-minded people, your LGBTQ family, friends and straight allies. The good kids on the block. If your gay community is small or non-existent, reach out to online resources including the Human Rights Campaign, The Trevor Project and Parents & Friends of Lesbians & Gays (PFLAG) to make connections.
Look for a place to put your pain. Create a memory box with notes, cards, mementoes and souvenirs of your love. Write a letter and say all the things you wished you had time to say. Schedule a grieving session with yourself every day or week until the rushing river begins to subside a bit. Consider joining a grief group, but wait for the loss to really settle in — that could take four to six months.
Finding a gay grief group is, of course, the optimum situation. Talk about your grief with caring people. Reminisce. It helps.
A naming opportunity offers much solace. Find a charity building a walkway or other structure and buy a brick, for example, with your loved one’s name on it. Contribute to a program that places park benches in your town inscribed with your loved one’s name. If this is not an option, plant a flowering shrub or tree to honor your lost love. Watch it flourish and blossom every spring.
Plan holidays and special dates of observance in advance so you won’t be alone or succumb to last minute plans with callous people who don’t, won’t or can’t acknowledge your loss.
Join organizations, get involved. You might be able to help someone who is also grieving this traumatic death of a love.
Above all, be grateful for the time you spent with this cherished partner. Your life was better for having them in your world. It changed you, it shaped you. Take the golden moments with you. Grief is a war, but you are a survivor.
Before his mother, Dee Dee, died from emphysema in 2009, Larry Sernovitz spent a lot of time at her bedside, keeping her company. Toward the last few days of Dee Dee’s life, she wasn’t very responsive, so her son didn’t expect to connect with her meaningfully anymore. During one of the final visits, Dee Dee had mostly rested, and the two hadn’t interacted much. So Larry was surprised to get a phone call from his mom the next day.
“She sang, ‘I just called to say I love you,’” says Sernovitz, a rabbi in Cherry Hill, N.J. “I don’t know if I fully realized the power of that moment. She bounced back. She was singing to me over the phone. Within the next day, she was gone.”
Dee Dee had sung to Sernovitz often while he was growing up, but her melodic phone call toward the end of her life was an unexpected surprise.
“I said, ‘Thank you so much. I love you, too,’” Sernovitz says. “I didn’t fully realize what was happening: She was beginning to say goodbye. She just wanted to let me know, even though I didn’t realize it at the time, that no matter where she goes, she’ll always love me.”
At the end of life, many people choose to tie up loose ends, to make sure nothing critically important is left unsaid to the people who matter to them most. They may feel it will help them die peacefully, knowing that no loved ones will have any doubts about their feelings.
“Those are opportunities for people to take stock and say, ‘I want to be more intentional about how I want to relate to people in my life,’” says Dr. Jessica Zitter, author of Extreme Measures: Finding a Better Path to the End of Life and an attending physician in critical-care and palliative care medicine at Highland Hospital in Oakland, Calif. “Death should really be seen as the last opportunity that you have to make amends and clean things up before you’re in the next world, wherever that might be.”
A New Dynamic
The end-of-life period can spark honest, soul-baring conversations that let people grow together emotionally while reminiscing, apologizing, forgiving, thanking or recognizing the efforts of their most cherished relatives and friends. Such talks can be especially meaningful if they’re initiated by someone who doesn’t usually talk about his or her feelings.
Sometimes palliative care physicians will help their patients with life-threatening conditions facilitate these conversations, steering them in directions that can bridge differences, highlight commonalities and allow people to grow closer. It’s ideal to have these conversations during the final weeks or months of life rather than waiting until the last possible moment.
“We always think we are going to have more time than we do,” says Zitter, who appeared in the Academy Award-nominated short documentary Extremis, about end-of-life decisions and conversations. “I see so many patients who get caught off-guard by those final days, to the point where something happens, they deteriorate; they can’t speak anymore; they aren’t alert. You don’t want to wait until those final days because it may be too late by then.”
The Start of an End-of-Life Discussion
When someone at the end of life opens up about his or her feelings, it can initiate an emotional conversation, with everyone sharing perspectives to gain a greater understanding of each other’s feelings. And if one person says “I love you,” the other person may return the sentiment, which brings greater depth to the relationship. The further the talks go, the greater the intimacy of the relationship may increase.
“I’ve seen it go any number of ways,” Zitter says. “A dialogue. One-sided. Over the phone — for people who aren’t going to have the chance to see each other again.”
Staying on Topic
Some terminally-ill patients want to have emotional conversations but can’t get the words out because their relatives cut them off.
“A lot of people say, ‘Every time I want to talk to my kids, they put their fingers in their ears and say, You’re not going to die’,” Zitter says. “When someone is coming to you with that feeling, you want to open up and listen and support, not deny the sentiments that are bringing them to you.”
It takes a certain amount of bravery to initiate these conversations. Not everyone is able to bare a soul this way — especially if someone is in denial about his or her diagnosis or prognosis. So honor your loved one by listening.
“The problem is: So many in America today don’t have these discussions, as they are too busy thinking they are going to be cured,” Bryant says. “Our goal should be not to die fighting a disease but to die loving people.”
Nearly 10 years after his mother’s death, Sernovitz is still awed by the meaningful conversation he had with his mom when she sang about her feelings.
“It was such a powerful moment,” Sernovitz says. “We have to really pay attention to what people say because we never know what messages they’re trying to send us.”