In recent months, I read a very powerful piece in The New York Times that detailed the last day in the life of President George H. W. Bush. It described how in the last week of the president’s life he had stopped eating and was mostly sleeping.
His longtime friend and colleague, James Baker visited him frequently in his last days, and was there when he passed away. Baker described how, at the end, he held Bush’s hand and rubbed his feet.
The former president died in his home, surrounded by several friends, family members, doctors and a minister. As the end neared, his son George W. Bush, also a former president, who was at his own home in Dallas, Texas, was put on speaker phone to say goodbye.
He told his father that he had been a “wonderful dad” and that he loved him. “I love you too,” Bush told his son. And those were his final words.
Bush’s doctor described how everyone present knelt around the president and placed their hands on him and prayed for him. It was a very graceful and gentle death, accompanied by loved ones who gathered in the intimacy of his home in Houston.
For almost four years now, I have been privileged to visit nursing homes, assisted living facilities and private homes to sing and play music for people in hospice under the title of my role as “Chords of Comfort.” I also make visits as a hospice chaplain.
On some days, my patients are alert and able to converse with me. On others, they lie in bed unable to speak and sometimes sleep.
On such occasions, I sit by their bedside and just keep them company. Sometimes a family member or two is present when I visit.
Several years ago when I arrived to visit a certain patient, I was surprised to find members of her family singing and playing guitar while the patient, who could not speak, moved her head rhythmically back and forth.
One of her youngest grandchildren had flown all the way from San Francisco, Calif. to New Jersey just to sing for her great grandmother. It was obvious that the singing and playing brought great comfort and pleasure to her.
When the family asked me to join in with my guitar, it became clear to me that we all were feeling spiritually uplifted by the beautiful music that we created together.
There is a rabbi who directs a Jewish-end-of-life care/hospice volunteer program. As part of his training program, the rabbi asks the volunteers to reflect on a moment when they were in need of someone to be present for them.
One man related the story of his bicycle accident when a stranger sat silently with him on the curb until the ambulance arrived. Another volunteer described how her grandmother sat knitting in the corner of the hospital’s delivery room throughout her three-day-long labor.
What both of these stories have in common is the power of someone simply being present for another person.
Chaplaincy – spiritual care – is all about accompanying another person while being fully present. It is all about trying to ensure that there will be times during the day when a patient is not left alone and has someone by their side.
Even when someone’s life is transitioning, healing of spirit is possible until the very last breath. It is especially at these times when our very presence can raise their spirits, which not only benefits them, but also us.
Being present and ensuring that no one is left alone is an incredible act of kindness and a supreme act of holiness. In the Jewish faith, it is considered a “mitzvah,” a religious obligation.
I hope that you will consider ways that you can help reduce isolation for those who are alone and provide them with “accompaniment.” Let us continue to find ways to be fully present for members of our own family and for those in the wider community who will benefit from our companionship and just “being there for them.”
Perhaps you may wish to consider committing to one specific act of accompaniment each month that will lift the heart and brighten the spirit of someone else – and probably do the same for us.
Doctors today have documented evidence to demonstrate that grieving can, in fact, make children sick. Health issues such as skin problems, cardiovascular disease and even cancer can often track their onset to a painful event translated as grief. Traumatic loss is so abhorrent to the mind that children often have difficulty coping. Children today have […]
Doctors today have documented evidence to demonstrate that grieving can, in fact, make children sick.
Health issues such as skin problems, cardiovascular disease and even cancer can often track their onset to a painful event translated as grief. Traumatic loss is so abhorrent to the mind that children often have difficulty coping.
Children today have numerous opportunities to distract themselves from grieving properly; i.e. video games, computers and television. In my book, The Only Way Out is Through, I share some insight into working through grief. Here are some tips for parents and caregivers to help children deal with grievances in a healthy manner.
Tips for Nurturing Bereaved Children
Grieving children must get plenty of rest, eat a balanced diet and drink plenty of water. Exercise is also very important; however, remember that fatigue is often a characteristic of both loss and depression.
Encourage a grieving child to express and vent shock, anger and fear. This will help the child stay connected to life and can re-establish trust in what has become an unsafe world.
Children should be allowed to participate in the rituals of saying goodbye. This will give them a sense of realty and closure to this unthinkable event.
Parents or caregivers of grief-stricken children should encourage their child to participate in weekly therapeutic groups with other children who have encountered the same kind of loss.
I was standing in my cubicle, a 24-year-old fact-checker envisioning a publishing career of glamor and greatness, suddenly shaking as I read the document my mother had mailed. It detailed her wish that I promise never to keep her or my father alive with artificial respirators, IV-drip nourishment, or anything else she deemed “extreme.”
I was horrified, and slightly angry. My mom was a 54-year-old literature professor who’d spent the 1970s eating whole grains and downing vitamins. She was healthier than anyone I knew. Why get so dramatic now? It seemed ghoulish, not to mention premature. But I scrawled my signature at the bottom of the page and shoved it into an envelope, my mother’s voice in my head, prodding me along.
As with the whole wheat and vitamins, my mother—back in 1990—was onto something long before it became conventional wisdom. But these days, Americans’ approach to aging and death is rapidly evolving, pushed both by the numbers and the grim reality behind them: In 40 years, 19 million Americans will be over 85, all at high risk of losing the ability to care for themselves or dwindling away because of organ failure, dementia, or chronic illness. (The days of a sudden fatal heart attack are fading; by 2008, the death rate from coronary heart disease was down 72 percent from what it was in 1950.)
So while many seniors now live vigorous lives well into their 80s, no one gets a free pass. Eating right and exercising may merely forestall an inevitable and ruinously expensive decline. By 2050, the cost of dementia care alone is projected to total more than $1 trillion.
My mom’s decision to face her end came not from any of these facts, but from the nightmare of watching her own mother’s angry decline in a New York nursing home. “You’re all a bunch of rotten apples,” Grandma growled at visitors, the words erupting from her otherwise mute lips. And there she sat for three years, waiting to die. “Why can’t you just get me some pills so I can go?” she would sometimes wail.
The slide toward death was only slightly less awful for my father’s mother. Grandma Ada would greet me with a dazed smile—though it was impossible to know whether she recognized the person standing in front of her wheelchair—before thrashing with involuntary spasms. An aide would come to restrain her, and then my dad and I would leave.
This cannot be right. This cannot be what we want for our parents—or ourselves.
In denial
Despite our myriad technological advances, the final stages of life in America still exist as a twilight purgatory where too many people simply suffer and wait, having lost all power to have any effect on the world or their place in it. No wonder we’re loathe to confront this. The Patient Self-Determination Act, passed in 1990, guarantees us the right to take some control over our final days by creating advance directives like the one my mother made me sign, yet fewer than 50 percent of patients have done so. This amazes me.
“We have a death taboo in our country,” says Barbara Coombs Lee, whose advocacy group, Compassion & Choices, pushed Washington and Oregon to pass laws allowing doctors to prescribe life-ending medication for the terminally ill. “Americans act as if death is optional. It’s all tied into a romance with technology, against accepting ourselves as mortal.”
For proof of this, consider that among venture capitalists the cutting edge is no longer computers, but life-extending technologies. Peter Thiel, the 45-year-old who started PayPal and was an early investor in Facebook, has thrown in with a $3.5 million bet on the famed anti-aging researcher Aubrey de Grey. And Thiel is no outlier. As of 2010, about 400 companies were working to reverse human aging.
Talking about death
The reason for this chronic avoidance of aging and death is not simply that American culture equals youth culture. It’s that we grow up trained to believe in self-determination—which is precisely what’s lost with our current approach to the process of dying. But what if every time you saw your doctor for a checkup, you’d have to answer a few basic questions about your wishes for the end of life? What if planning for those days became customary—a discussion of personal preferences—instead of paralyzing?
Dr. Peter Saul, a physician in Australia, endeavored to test this approach by interviewing hundreds of dying patients at Newcastle Hospital in Melbourne about the way they’d like to handle their lead-up to death—and how they felt discussing it. He was startled to find that 98 percent said they loved being asked. They appreciated the chance to think out loud on the subject. They thought it should be standard practice.
“Most people don’t want to be dead, but I think most people want to have some control over how their dying process proceeds,” Saul says in his widely viewed TED lecture “Let’s Talk About Dying.”
Nevertheless, when his study was complete, Newcastle went back to business as usual, studiously ignoring the elephant in the room, acting as if these patients would eventually stand up and walk out, whistling. “The cultural issue had reasserted itself,” Saul says drily.
Slow medicine
It’s hardly surprising that medical personnel would drive this reexamination of our final days. Coombs Lee, who spent 25 years as a nurse and physician’s assistant, considers her current advocacy work a form of atonement for the misery she visited on terminal patients in the past—forcing IV tubes into collapsed veins, cracking open ribs for heart resuscitation.
“I had one elderly patient who I resuscitated in the I.C.U., and he was livid,” she says. “He shook his fist at me, ‘Barbara, don’t you ever do that again!’ We made a deal that the next time it happened we would just keep him comfortable and let him go, and that’s what we did.”
It bears pointing out, however, that many doctors dislike discussing the ultimate question—whether patients should be allowed to choose their moment of death by legally obtaining life-ending medication. Several have told me that the debate over this overshadows more important conversations about how to give meaning to what remains of life. In Europe, the term of art is euthanasia—the practice of injecting patients with life-ending drugs—which remains illegal in the United States. But whatever the method, many physicians would prefer to avoid the entire topic.
While arguments flare around this, Dennis McCullough, a geriatrician in New Hampshire, has noticed a quieter answer taking shape among his own patients. Many are themselves retired doctors and nurses, and they have taken charge of their last days by carefully mulling the realities of aggressive medical intervention. Rather than grasping at every possible procedure to stave off the inevitable, they focus instead on accepting it. In place of scheduling never-ending doctor’s visits, they concentrate on connecting with others.
McCullough has termed their philosophy “slow medicine,” and his book about it, My Mother, Your Mother, is starting to attract attention around the world.
“If you go to a doctor to get a recommendation for having some procedure, that’s probably what’s going to happen. Doctors are driven by revenue,” he said in an interview. “But many of the things that we can do to older people don’t yield the results we’ve promised—medicine can’t fix everything. ‘Slow medicine’ is being more thoughtful about that and staying away from decisions based on fear.”
This attitude is gaining traction. In November, several hundred physicians plan to gather in Italy to discuss slow medicine (a name lifted from the similarly anti-tech slow food movement), and McCullough’s book is being translated into Korean and Japanese.
“What’s the last gift you’re going to give your family? In a sense, it’s knowing how to die,” he says. “Staying alive is not necessarily the goal.”
Death with dignity
I consider my mother-in-law, a practicing Catholic and right-leaning political moderate, a barometer for this slowly shifting national consciousness. She is in her mid-60s and healthy, but has already written directives specifying that Bach be played at her bedside and perfume scent the air, if her health deteriorates to the point where she cannot say so herself.
Personally, I’m relieved. Unlike my 24-year-old self, I now find it comforting to plan these things, rather than living in fear of them. But I would still be mired in denial were it not for former Washington Gov. Booth Gardner, whom I wrote about in 2008 when he was pushing for a Death with Dignity law and I was a newspaper reporter.
Shaking with Parkinson’s disease, he tried to spark conversation about legalizing physician-assisted aid-in-dying while attending a luncheon in downtown Seattle with a small circle of business friends: “I have a real tough time understanding why people like us, who’ve made tough decisions all their lives—buying, selling, hiring—do not have the right to make such a fundamental decision as this,” Gardner said, referencing his wish to take life-ending medication when his illness becomes unbearable, to gather his family and die when he chooses.
The men sipped their soup. They did not approve. They did not even want to discuss it. Yet that stony opposition—which mirrors the position of the Catholic church, groups representing the disabled, and hospice workers dedicated to maintaining “studied neutrality”—has, ironically, begun to nudge talk of death into the open.
Gardner, to my mind, had articulated the central concern: Wherever you come down on end-of-life decisions, the question is one of control—and who is going to have it over our bodies at the last moments.
Thus far, only Washington and Oregon have passed Death with Dignity laws, though a voter initiative is scheduled for the November election in Massachusetts. In Montana, the courts have ruled that physicians who prescribe life-ending medication for the terminally ill are not subject to homicide statutes; in New Mexico, two doctors have filed a suit challenging prohibitions against “assisting suicide.” And in Hawaii, four doctors willing to prescribe life-ending medication have geared up for a similar fight.
Yet after 15 years of legalized aid-in-dying in Oregon, the biggest news is how seldom people actually invoke this right. Since 1997, fewer than 600 terminal patients have swallowed doctor-prescribed drugs hastening their ends, though 935 had prescriptions written. Did 335 people change their minds at the last minute? Decide in their final days to cling to life as long as possible?
If so, that might be the best thing to come out of Compassion & Choices’ campaign: a peace of mind that allows us to soldier on, knowing we can control the manner of our death, even if we never choose to exercise that power.
My own immediate family ranges in age from 3 to 84, and I envision a dinner in the not-too-distant future when we will gather, talk about how to make my parents’ final journey as meaningful as all that has come before, and raise a glass to the next stage. Maybe at Thanksgiving.
Death doula Christy Marek talks with Mark Quinlan at Our Lady of Peace in St. Paul, Minn. on Friday, May 10, 2019. They discussed the specifics of funeral planning and the nuances of the end of life. She has followed him from the hospital to a transitional care unit, and now to the hospice.
By BOB SHAW
In the dimly lit room, Mark Quinlan struggles to be heard.
His voice box has been silenced by his thyroid cancer. He tries to whisper, but the hum of his oxygen machine drowns out the sound. The voice of the bone-thin 67-year-old barely carries to the edge of his hospice bed.
But Christy Marek is listening.
Marek, an end-of-life assistant called a death doula, leans forward to catch every word. She asks him about funerals, the afterlife and memories of happier times.
“Do you want last rites?” she asks.
The whisper: “I suppose.”
She has been with him for months, in a hospital, transitional care unit and a hospice. Every step of the way, she has guided him through a dark and scary wilderness.
In many cases, death doulas are redefining how people approach death. They are breaking away from traditional generic funerals, and pioneering approaches to grieving, memory and death.
“Death is being reimagined at this moment,” said Anne Murphy, owner of the death-consultation business A Thousand Hands.
In the past, doulas were women working as midwives to help the process of birth. “Death doula” is a term for people who help with the other end of life. They also call themselves celebrants or soul midwives.
“They all do the same thing — companioning for people dying,” said Jane Whitlock, a St. Paul death doula.
The National Doulagivers Institute reports that its training has quadrupled in two years. President Suzanne O’Brien said she has now trained 402 certified doulas in a six-month course. The cost is $997, Twin Cities Pioneer Press reported.
“I just got back from a month of training in Thailand,” O’Brien said in April. “This is needed around the world.”
Doulas-to-be are drawn to a job that that pays up to $100 an hour in Minnesota. The trainers are proliferating, with names like Doulagivers, Lifespan Doulas, Soul Passages and the National End of Life Doula Alliance.
The traveling doula schools are arriving in Minnesota.
One session starting May 31 offers a three-day program by the International End of Life Doula Association for $750. Or you could get training from the Conscious Dying Institute, which is offering three-day classes starting June 22 and September 26, for $2,995 and $1,895, respectively.
The inconsistency makes some uncomfortable.
“I look at the programs where you get certified after a weekend. It is not doing the people you work with justice,” Marek said.
“It is frankly a little bit messy.”
Doulas sometimes overlap the services of a hospice — causing some friction.
“Hospices frankly do not know what to do with the end-of-life doula role,” Marek said.
Susan Marschalk, director of the Minnesota Network of Hospice and Palliative Care, said they do not compete but must learn to work together.
“Doulas are newer, and there is some trepidation about them,” Marschalk said. She said hospices provide medical care and emotional support for dying people.
Doulas are flexible, hired by the hour. They can be employed before or after the dying process begins, helping with funerals and commemorations.
The training for death doulas is sketchy.
It’s a new vocation, with no regulations or standards. With no training whatsoever, anyone can start working as a death doula.
Sometimes they are hired months before a death, and work for months afterward. Some are called at the last minute and may help only in a person’s final hours.
“This is so new. We are all finding our way,” said Marek, of Lakeville, owner of Tending Life at the Threshold.
Being a doula is not a full-time career — yet.
“Right now there are no full-time death doulas,” said doula Whitlock. But she predicts that as baby boomers age, the demand will increase along with the number of deaths.
Doulas seeking full-time work sometimes branch out into related areas — paperwork, aging in place, consulting, or doula services for pets.
“Dying people want to put things in order,” she said. She helped a woman arrange for her ashes to be dropped into the Mississippi River from a pedestrian bridge.
Death doulas encourage doing whatever is meaningful — which can often mean breaking the rules.
For example, one dying man recently requested a wedding and an end-of-life celebration — in the same service. He was engaged, said doula Murphy, and saw the dual-purpose ceremony as meaningful.
What was meaningful at Susan Showalter’s funeral was utterly original.
Showalter, 71, of St. Paul, died in December of diabetes complications. End-of-life adviser Murphy suggested a home vigil, displaying the body for visitors to see.
About 175 mourners were served white wine and Doritos — Showalter’s happy-hour treat.
Respecting an ancient ceremony, they washed the body with washcloths and pans of water. They anointed her with oil, dabbing it on her face and hands.
The group spontaneously sprinkled rose petals to make a pathway between the body and the funeral-home van.
Once the body was gone, they shaped the petals on a table into an outline of her body. Where her feet had been, someone placed hockey socks — which she wore when her feet were cold.
The personal touches enriched the process, said her husband, David.
“This allowed us to be in charge,” he said. “We were participants, not just observers.”
“I swear at least 20 people thanked me for such a wonderful way to say goodbye.”
At other times, death doulas help celebrate the lives of the deceased — before and after they die.
On May 10, Marek hovered at the bedside of cancer victim Quinlan in Our Lady of Peace hospice in St. Paul.
She reminded him of the impact he had on his students, from 40 years of teaching at Centennial High School in Circle Pines.
One of them — Chris Roskowinski — flew from his home in Sherman Oaks, California, when he learned that Quinlan was dying.
The night before, he was taken to the opening-night play at the high school, which he had helped direct until the cancer left him incapacitated. The cast and the audience honored Quinlan — which made the occasion both happy and sad.
“Tell me, did that make it easier for you?” Marek asked. “Harder?”
After a pause, a raspy whisper rose from the bed: “Easier.” The word seemed to hang in the air.
At his bedside, Roskowinski could barely hear Quinlan speak, but nodded appreciatively.
Standing under the canopy, hiding from the scorching sun, I listened to stories of my grandfather. Meanwhile, my grandmother stared aimlessly ahead, her dementia shielding her from her husband’s body — neatly tucked inside a wooden box. I had met my family in San Diego to mourn my grandfather’s death, but confronted with my grandmother’s foggy-eyed gaze, I found myself wondering what the end of her life would look like.
As a family medicine doctor, I knew what conversation was needed. I also knew the challenges of initiating such conversations. The week before, I had seen a 95-year-old gentleman have his ribs crushed and crumpled like papier-mâché during CPR because there was no documentation indicating he wanted anything differently. I remember sitting anxiously the month prior with a family trying to decide whether to “pull the plug” on their comatose father/husband, uncertain of his wishes, having never had that conversation.
These conversations are hard, but they are immensely important. Regardless of how healthfully we live or how much medical care we receive, we will all die. Yet, understanding this intellectually is vastly different from truly feeling it; raw confrontation with our own mortality is frightening. Many of us live in denial about death — shying away from discussing it — and many medical professionals act as if death is a problem to be solved, rather than a process to be lived. Consequently, while 92% of people believe talking with their loved ones about end-of-life care is important, only 32% of people do so. Similarly, while 97% of people say it’s important to put their wishes in writing, only 37% of people have such written documentation.
We mustn’t succumb to this cultural fear of death. When we confront our end-of-life processes through humble inquiry and acknowledge our own mortality, we are able to articulate what we want to avoid. In doing so, we are not harbingers of misfortune, but rather active participants in care that helps ensure we live and die in a manner consistent with our values and priorities. While engaging in this emotional discomfort can be daunting, the avoidance of such conversation is far worse.
Too often, I find critically ill, hospitalized patients who have not yet considered how they want to live when their health is severely compromised. This not only contributes to excessive health-care expenditures (25% of all Medicare costs are from the last year of life), but it creates enormous familial stress when life-threatening decisions — such as withdrawing life-support — are unexpectedly thrust upon family members. Furthermore, ignoring our inevitable futures prevents us from receiving care we want — 70% of patients report wanting to die at home but less than half do so.
We must find the courage to discuss these issues with our doctors, our parents and our children. Fortunately, there are examples throughout the country paving a way forward.
“Death Cafes” are now spread throughout the country, where folks come together to talk about end-of-life care. Card games, such as “Hello,” offer creative opportunities for friends and family to discuss hopes and fears surrounding death. To some, this may sound outlandish, but when such tactics have been embraced, marked change has occurred, such as in La Crosse, Wisconsin, where similar efforts have led to 96% of people holding advance health care directives.
Bringing such conversations to the forefront of our collective consciousness, as was done for my grandfather, is possible … if we so choose. Ask your primary care provider at your next appointment to offer insight on advance care planning. Explore resources like Stanford’s Letter Project and The Conversation Project, which aim to help us articulate our health-care priorities and personal legacy.
What greater gift can we give our parents than to humbly inquire about what is most important to them as they age, so we can help facilitate their health-care goals? In so doing, not only might we reduce familial stress, we may liberate our families and ourselves to fully live.
When you’re looking at Elizabeth Fournier’s funeral home from the street, it looks like any ordinary farmhouse nestled into the hills of Boring, Oregon—and even after she welcomed me through the front door, it seemed hard to believe there were two wicker caskets tucked neatly in the back room of the cozy house.
Offering woven caskets is just one of the things that makes Fournier’s mortuary business particularly remarkable.
With the enormous costs of chemically-treated wood coffins, concrete burial vaults, liners, cremations, urns, cemetery space, and embalming, an average funeral in America costs about $10,000. In addition to adding a financial burden to the backs of grieving families, these burial methods are also notoriously toxic for the environment.
Fournier, on the other hand, has made a name for herself in the funeral industry by ditching toxic burial methods altogether in favor of “green funerals”.
When Good News Network first published an article on Fournier’s trailblazing mortuary career in 2016, she told me about how she created biodegradable urns out of dryer lint, flour, and water so she could give them away to poorer families who couldn’t afford traditional funeral costs.
Not only did she offer discounted services to low-income families, Fournier has also facilitated dozens of funerals for parents who lost their children – and she didn’t charge them a dime.
“As long as the mortuary board is happy with me, and I am being ethical I tend to march to my own drum,” Fournier told GNN in 2016. “If a family is truly having a hardship, I have no issue giving services away.”
Since opening Cornerstone Funeral Services 14 years ago, her passion for eco-friendly mortuary practices has earned her the nickname “The Green Reaper”, although she was quick to assure me that she wasn’t the one to coin the term—there nothing is scary about the humbling way she talks about death and grief.
Beyond her compassionate and eco-friendly business practices, the ease with which she offers her guidance, empathy, wisdom, and expertise is particularly singular. As we chatted in the Cornerstone funeral parlor, she recounted awe-inspiring tales of uplifting funerals and intimate ceremonies that she had been invited to attend after her consultations. Despite her passion for arranging more consoling memorials, she also spoke very frankly about the ones that had been so heartbreaking to facilitate. She simply said that they “just plain sucked”.
Regardless of the circumstances, she emphasized that everyone should be allowed to grieve in their own way. Fournier herself recently had to cope with the loss of her father, but she says she likes to remember him fondly by the numerous jigsaw puzzles that they did together (all of which have been lovingly glued together as a makeshift wallpaper for the Cornerstone funeral parlor bathroom.)
The DIY manual is as fascinating and informative as it is relevant. According to a 2017 survey from the National Funeral Director’s Association, just over half of participants expressed interest in an eco-friendly funeral. Furthermore, 62% of consumers felt it was very important to communicate their funeral plans and wishes to family members prior to their own death, yet only 21% had done so.
What makes the guidebook even more relevant is a law that was passed by the Washington state legislature at the end of May.
The bill, SB 5001, makes Washington the first US state to legalize human composting—also known as “liquid cremation”. Up until the law was passed with sweeping bipartisan support (80-16 in the House and 38-11 in the Senate), the only legal methods of post-mortem funerary processing were cremation and burial.
Now, however, bodies can be naturally processed into clean, odorless soil that can nourish the planet without taking up any space in crowded, pesticide-laden cemetery spaces.
“Natural organic reduction and the conversion of human remains into soil will be opening in the Seattle area in late 2020, and it’ll be the first facility in the world where this can be offered to the public,” Fournier told GNN. “It’s very exciting. Until then, there will be a large push to get the word out and to improve the sustainability, the conscientiousness and the meaning of it all.
“I believe other states are waiting to see how this program will develop before they set foot into the human composting realm,” she added, “but I think it is beautiful, regenerative and really aligned with the cycles of nature.”
Each day we create a wealth of online data, especially on social media
By Susan Brown
Few of us plan our legacy for when we’ve died and how we’ll live on in the lives of others. At Marie Curie our nurses help terminally-ill people to create memories for their loved ones. One nurse helped create a mixed music playlist to help a spouse sleep when their loved one is no longer lying next to them. Others helped to record stories, write letters or capture photographs. These are all very intimate and physical legacies, but as technology advances and we are increasingly living more of our lives online, it’s time to think about what people’s digital legacies will be.
In an increasingly digital world, we’ve shared online mourning when a celebrity dies, we’ve grieved when people we met online have died, and we’ve also been touched by stories of people online that we didn’t know.
Most of us have digital assets and online accounts. We need to think about what will happen to them when we die and if we want to leave a digital legacy online.
The Law Society advises that people should leave instructions about what should happen to their social media and online accounts after their death. The Digital Legacy Association has materials on its website to help people consider and leave a digital will.
There’s been a recent trend of video blogging, where people tell their stories to be shared after their death. Facebook has a feature to allow accounts to be memorialised so you can set a legacy contact to manage your account. Other technologies, such as Afterbook, enable you to create a home for memories, stories and photos.
It’s important to think about what you want to leave behind, and how you want to be remembered online. It’s also important to consider who owns any data left behind, how accessible and enduring that data will be, and how it will be protected.
In my lifetime we’ve seen incredible advances in technology. We’ve moved from VHS to DVD to Blu-ray. We’ve gone from no mobile phones to basic Nokia 3210s to the iPhone. Likewise, the way we interact online has changed. The first social media site was launched in 1997. Two years later, the first blogging sites were established and in the early 2000s we saw sites such as Myspace and Bebo which have either been replaced or lost the popularity they once had.
Are we naïve to think that any of the current websites and software will still be available and as commonly used in the next 20, 50 or 100 years? It’s impossible to accurately predict what the world will look like then.
Unless data is transferred across platforms, carefully planned online legacies may not be accessible to others in the future.
Even if they are, memorialising a Facebook page doesn’t ensure that what we want to be left behind will be seen. There’s a whole wealth of data on my social media to sift through, data that it’s likely no one will want to access in the future.
In comparison though, my grandfather was a plane navigator in the Second World War. I know this because he’s told me his stories, I’ve seen the photographs and held his medals in my hand. Although he is still alive, his memory will live on and will be passed down generations.
It’s interesting that physical artefacts could stand the test of time more than digital artefacts. There’s a common perception that when something is online, it will last forever, but that might not be the case.
These are all concepts explored in prominent psychologist Elaine Kasket’s new book, All the Ghosts in the Machine. Elaine highlights that while privacy is a fundamental human right, it is not a right for the dead. There is no legislation that protects people’s privacy when they’re gone. A digital will can ensure that only certain people can access someone’s data, but that might have serious implications, especially if a loved one finds information in an online account that the person never intended to share and is no longer there to explain. That’s part of a digital legacy too, and can cause real pain to those left behind. What can that do to the grieving process of the bereaved?
