Dying doesn’t disappear at Christmas. For those who know death will come soon but don’t know exactly when, the festive season, when the air is thick with “joy”, can be particularly unsettling.
As a psychotherapist working in palliative care, I often see distressed patients in the lead up to Christmas. Patients can find decorations and carols being played in shopping centres particularly triggering, reminding them this may be their last Christmas.
The dying person may often face an inner struggle. They may want to be involved in activities but may not have the physical and emotional capacity to deal with the heightened stress and stimulation. Some may prefer to sit quietly and watch proceedings without necessarily being amongst the action, but still feeling like they are a part of things.
Regardless of the the type of life-threatening illness, and whether an infant, child, adolescent, young, middle or older aged person is dying, both the patient and their family members may experience deep distress. You may feel the impending death, and your family the anticipated loss. These gloomy or morbid feelings might clash with the celebrations of Christmas.
Whether it’s you or a loved one facing dying at this time of year, there are some practical tips available that draw from a wealth of research and experience.
If you are the one dying
Where possible, plan ahead how you want to spend your Christmas festive period so you don’t place additional pressure on yourself. Think about the most comfortable arrangements for you. Where and with whom do you want to spend Christmas Day? Which is the best time of day for you to manage different activities? Let people close to you know your thoughts.
The process of dying is unique to each individual. It may be quick or slow, spread over weeks or days. Palliative care specialist at Stanford University, Dr James Hallenbeck wrote:
For those who do die gradually, there’s often a final, rapid slide that happens in roughly the last few days of life — a phase known as ‘active dying’. A person may begin to lose their senses and desires. First hunger and then thirst are lost. Speech is lost next, followed by vision. The last senses to go are usually hearing and touch.
We have an ideal perception around death, that a dying person wants to be surrounded by family in their final hours. But some people in the active phase of dying may actually prefer to be alone. And while this may be difficult for family members to hear, you can give yourself permission to ask for whatever you would like.
Studies indicate some dying people may feel they’re a burden to their family. Other people have difficulty saying “no” because they don’t want to disappoint or hurt others, or they may fear conflict. Know your limitations and don’t push beyond these to simply please others.
Many dying people feel they may be a burden to their families.
Have kind consideration for yourself. Remember you are a person before you’re a patient. And remember it’s OK to say “no” and forgo invitations.
If you’re caring for a loved one who is dying
Essential care demands such as helping the person you are caring for to feed, go to the toilet, and clean themselves, will not disappear at Christmas. If your loved one is dying at home, they may require unrelenting attention.
Be realistic with your expectations. This can be a different and simpler Christmas than others. Allow for spontaneity. Try not to be a martyr and delegate and ask others to help. Doing so enables others to feel they’re included and contributing in special ways.
Listen to the person who is dying. Let them speak if and when they can. Gauge their mood and be guided by them. There is value in being present with the dying person without talking.
Heightened noise and activity, which often go hand in hand with the holiday season, can create distress for a terminally ill person. Ask family and friends to roster their visits over the different days of Christmas so as not to tire, overwhelm or stress the dying person.
People can think children don’t understand death and wouldn’t be able to cope with the concept, so often they may protect them by hiding it. But children are attuned to the family emotional dynamics. They know something is happening and they need their feelings validated. It can be helpful to get children involved in taking care of someone who is dying.
Research shows children do manage themselves well in the face of dying, when adults support them to deal with their responses.
Expect things can change quite suddenly. Have a backup plan ready. Keep emergency contact details readily on hand always.
When dying is happening at Christmas, it’s best to allow all feelings to be expressed rather than simply putting on a brave or smiling face. Feelings are a natural response to suffering and what may be a stressful situation.
It’s mostly important to remember not to hide your needs and feelings but to speak and communicate with your loved ones. Especially when dying may be imminent.
If you are over 50 and reading this, you have probably done some end-of-life planning. No? Time to get to work. You made a will 15 years ago? Not good enough. If you haven’t done anything or haven’t reviewed your planning in over five years, read on.
The key components of end-of-life planning are:
A will
A power-of-attorney for finances
A power-of-attorney for health care
An advance directive for health care
A trust for your assets
I am not an attorney, so I am not going to go into any depth about these legal documents. My intention is to rouse your interest in doing end-of-life planning by telling you about some novel and inventive ways to enhance it. So, even if you have done the basic planning with your estate attorney and have the documents on record, there are some new and interesting twists today that you may want to know about.
Traditionally, when the topic of end-of life planning comes up, the first item that comes to mind for most people is a will. If you are just beginning this journey a will is a good place to start and you may not need an estate planning attorney to take this first step. There are a number of online tools today for building a will, and some of them are so robust you may only need a couple of witnesses rather than an attorney.
FreeWill.com is one of the newest players in this space. Founded at Stanford University and launched in 2017, FreeWill (in the company’s description) “provides high-quality, intuitive online estate planning tools at no cost to the consumer.” The founders, Patrick Schmitt and Jenny Xia, are young entrepreneurs with experience in finance and technology.
Several years ago, Patrick, who has a background in nonprofit fundraising and technology for social impact, was about to travel to areas that were not particularly safe for Americans. He decided the prudent thing would be to make a will. In doing so, he discovered that the process was more complicated and difficult than it needed to be, especially if one wanted to include any kind of planned giving to a non-profit. That event became the impetus for starting his company, FreeWill.com.
FreeWill strongly supports the inclusion of planned giving and it is built in to their will-creation software. Through their own research, they have discovered that single people are more than twice as generous as any other group when writing a will and single people who choose to leave a bequest are the most generous (2.5 times more than married people). FreeWill reaches out to singles through their marketing and because I often write about solo agers they reached out to me to help them spread the word.
I tried the online will creation form and discovered it to be very simple and straightforward. It took me less than the 20 minutes they suggest. Once I had completed the online form, I had the option to print it. Printing is necessary because for a will to be legally binding it must be signed by the principal and also by two witnesses. Then it can be kept stored in a safe place, including cloud storage. For larger, more complex estates, FreeWill suggests pairing the effort with a visit to an attorney and they provide the forms for doing just that. FreeWill will be rolling out additional end-of-life forms. A health care directive and a durable power-of-attorney are in the works.
An often-overlooked piece of end-of-life planning is the disposition of your remains after you have passed. I think many people have an even harder time facing this question when they are still healthy and strong, but making these plans ahead of time is one of the kindest gestures you can make for the loved ones you leave behind.
When I was still in my teens, my divorced father, age 55, purchased a burial plot and picked out a casket. He wanted to take me to see the burial park and the plot. I resisted, but he eventually wore me down and we went to visit the cemetery. About 15 years later, he created very specific plans for where he wanted his memorial service and who should be invited. Again, I resisted his efforts to share these plans with me, but he insisted. In addition to telling me, in great detail, what he had in mind for the burial service and the memorial, he also showed me where he kept all his important papers and took me to the bank to show me how to open the safe-deposit box where he kept some gold coins and other valuables.
It upset me to think about him dying; he wasn’t sick at the time and I couldn’t figure out why he was making all these seemingly-premature plans. Of course, years later he did die and it was fairly sudden. Amidst the shock of his passing I realized I did not have to make any decisions; all I had to do was put his plans in motion. It was the greatest gift he could have given me.
My father chose to be buried. Now, thirty years later, my husband and I have chosen cremation and having our ashes scattered at sea near our Northern California home. The Neptune Society and the Trident Society (both subsidiaries of Service Corporation International) have pre-need programs for cremation. There are other cremation programs, but these two have been around the longest and that seemed important for a decision like this. They both have 5-year financing plans and other payment options.
There is also a green burial option today that may be appealing to you if you are concerned about traditional burial’s impact on the environment and use of open space.
As with so many later-life concerns, baby boomers are changing the landscape at the end of life. I think we can expect to see many more new concepts arise in the next two decades as this large population cohort enters the final decades of life.
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.
Involving your children in your pet’s death helps them grieve.
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.
Children who ask the most questions are usually worriers.
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.
Being prepared is an essential part of helping your child through the pet grieving process.
“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.
Max has a headstone in the backyard of Kasey’s property.
“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.”
‘Death cafes’
Aging expert Brian de Vries, right, with his husband, John Blando, Ph.D.
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.
Challenges
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.
Participants speak at the the Nocturnists storytelling event where doctors from Mount Sinai, New York University, Columbia, and other local hospitals share their personal experiences with death.
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.
Doula Craig Phillips pauses before entering the room of a person who is near death at the Gilchrist Hospice in Baltimore on June 6, 2016.
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.”
Pallbearers escort the casket to the altar during the funeral for Watertown firefighter Joseph Toscano at St. Patricks Catholic Church in Watertown, Massachusetts, on March 22, 2017.
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.”
<center
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.
Dr. Ira Byock, the doc from Jersey.
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.
A study from doctors a OHSU and the Dana-Farber Cancer Institute found that the number of people in Oregonian who fill out forms with end-of-life wishes has increased.
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.
