Designing for death online

“Facebook is not designed with death in mind and that’s a problem. It was designed for purposes that do not scale to the level at which it is now used in our world.”


[I]f you’ve ever used social media after the death of a loved one, you might understand the problems that Stacey Pitsillides is describing. As a university lecturer in design, Stacey is researching what happens to our online lives when we die and how grieving people use social media after the death of a loved one.

“Unfortunately, you have these uncomfortable encounters with something that hasn’t been well-designed,” she says, explaining how people experience social media after a bereavement. “The kind of design choices that make sense to Facebook or Twitter or LinkedIn as a digital platform, don’t make sense to someone who is in bereavement.”

For example, Facebook has an ‘On This Day’ function, which shows you an old photo or status update, with the caption: “We care about what you share here. We thought you’d like to look back on this post from five years ago.” It’s a lovely reminder if it’s a picture of you and your friends at the beach – not so lovely if one of those friends has since died and seeing that photo brings back all your grief and pain.

Lucy Herd, a mother who lost her son when he was just two years old, described the impact Facebook can have on someone who is grieving. “Yesterday Facebook showed me an ‘On This Day’ reminder of a video I’d posted of Jack when he first learned to walk. Some days you think you’re okay, but it knocked me for six.”

“The ‘On This Day’ feature really shows that Facebook hasn’t learnt their lesson. They haven’t brought those principles of designing for death into their actual user experience,” says Stacey.

It seems that the designers and developers behind social media giants like Facebook, Twitter and Instagram are lagging behind their users, who are routinely re-purposing social networks to act as memorials or grief support networks.

“These large social media platforms have a community, and that’s why a lot of the grief happens there,” she explains. “Those sites become ad-hoc spaces for memorial. They allow people to understand the dead in a new way and to talk to the dead through their profile. Those spaces, in some ways, are helpful to people.

“There is memorialization in all different environments and platforms, such as in online games and on social media. It shows the creativity of people’s own instinctive approach to bereavement.”

With the general public apparently one step ahead when it comes to using social media spaces for grief, Stacey, based at the University of Greenwich in the UK, is keen to explore how death can be factored into the design of new digital environments where people connect.

“The question is, not just why tech companies are not catching up, but how can we design for death, as a principle, in these tech environments.

“When you build something like that, when you want a community to grow, you need to consider not only the positive, happy moments in people’s lives, but the sadness too. Things need to be considered in equal measure – celebrating an anniversary, or remembering a death.”

These aren’t just abstract ideas or challenges for web developers to tackle. Issues about digital legacy and how we deal with grief online will begin to affect more people as living life online becomes more popular with each generation.

Stacey describes how a family from the Netherlands had to tackle some these issues when the social media site they used for a loved one’s memorial, called Hyves, began to disappear.

“As Facebook took over and as Hyves went down, people started leaving in droves,” she said. “It was a conundrum. What should they do with their loved one’s memorial as the community disappears?

“The family was wondering, do we move it onto Facebook with the community, onto a platform that she never existed on? Do we let the memorial die with Hyves and leave it to become derelict like a Victorian graveyard? Or do we print it off and archive it, so to speak?

“These are issues that will hit us, when Facebook and Twitter are inevitably taken over.”

As digital media becomes an increasing part of people’s daily lives, these questions will become more pressing. For now, it’s up to the developers and designers behind these digital spaces to realize that death and grief will not stay offline and begin designing with death in mind.

Complete Article HERE!

Funeral celebrants offer customized services without liturgy, dogma or traditional rituals

Until fairly recently, priests, ministers and rabbis presided over rites for the dead. But fewer Americans are attending a church or synagogue. Enter funeral celebrants.

By Kevyn Burger

[W]hile he was buttoning his crisp white shirt and tying his tie, Ryan Raffray started crying.

He’d been up late the night before, laboring over his eulogy for baby Dylan, found unresponsive in his crib, a SIDS death.

“How do you tell the story of a beloved child who was with us only six months?” he said, as he stood behind the lectern, trying to keep his voice from catching.

Raffray delivered his carefully composed tribute not in a church or funeral chapel, but in a Plymouth hotel conference room.

His audience was not a grieving family but a group of funeral professionals.

And the baby? He was fictitious. But the details Raffray gave about Dylan’s short life were so poignant that the others in the room passed around a box of Kleenex.

Writing and delivering the eulogy was Raffray’s final assignment in a course to become a certified funeral celebrant. He joined a dozen participants who spent three days and $999 attending a workshop on how to craft a final farewell for families that don’t want a funeral with traditional trappings.

Until fairly recently, priests, ministers and rabbis presided over rites for the dead. But fewer Americans are attending a church or synagogue. Every seven years, the Pew Research Center releases a comprehensive Religious Landscape Study. In 2008, 16 percent of those polled claimed no religious affiliation. By 2015, that number had grown to 23 percent, with the drop noted across denominations, genders, generations and racial groups.

That leaves nonreligious families without a person (such as a clergy member) or place (a house of worship) to turn to when they experience loss.

Increasingly, funeral celebrants are stepping in to create secular ceremonies without liturgy, dogma or traditional rituals. What they offer instead is a customized service designed to suit the needs of the grieving.

“Funerals are changing and families need new options and ceremonies that speak to them,” said Glenda Stansbury, co-founder of the InSight Institute Certified Celebrant program, based in Oklahoma City.

“Churches take care of churchgoers,” Stansbury said. “People on the fringes think no one can or will meet their needs. We can be there for the ones who say they’re spiritual but not religious or who clearly state they don’t want to be preached at.”

A meaningful funeral can be a healing first step for families as they begin to mourn. But funeral professionals see more people forgoing funerals altogether because they can’t find a service that will allow country music, quotes from Harry Potter or unvarnished storytelling.

“We know that people need that gathering to share their loss and get support from their community. Without funerals, we’re setting up a nation of people who are not dealing with grief, and unresolved grief is at the root of a lot of persistent problems,” Stansbury said.

Lisa Jones, a community activist from Milwaukee, took part in the celebrant training because she feels “called” to serve this unmet need in her community.

“The black church is strong, but a lot of hurting folks are unchurched or de-churched,” she said. “I just went to a church funeral that used the traditional model, but it didn’t suit the family and they went away feeling angry. We need to find new ways to respond to trauma.”

Training for a tribute

At the celebrant training in Plymouth, students learned how to organize funerals, celebrations of life, graveside services and the scattering of ashes. The course covered incorporating music, readings and video tributes and offered guidance on how to price, position and publicize work as a funeral celebrant. (Most charge $300 to $400.)

The centerpiece of the celebrant’s work is the life tribute, the unique story that the celebrant delivers to give mourners a sense of the life lived and lost.

Celebrants learned how to set up a family meeting to gather a mosaic of memories and fashion them into a story. Gathering those memories is as important as delivering the tribute.

“You become the ambassador for that person’s legacy,” Stansbury told her trainees. “When everyone is hearing the story together it becomes a sacred time that is healing.”

A licensed funeral director and certified celebrant, Stansbury estimates she’s delivered 500 life tributes in her 17-year career. The work is growing more challenging. In recent years, she’s been the celebrant for a greater number of overdoses and violent deaths.

Many funeral directors keep a list of pastors who may be willing to officiate at a service for someone they don’t know (“I never got a chance to meet John … ”). But Stansbury has found them reluctant to officiate at troubling deaths.

“The rent-a-ministers take a pass on the hard cases,” she said. “Families experiencing a sudden, tragic loss need us the most. We tell them, ‘We won’t sugarcoat your loss.’ Sometimes we walk into a family’s dysfunction and we have to help them grieve the relationship they didn’t have. We say, ‘What do you need to say goodbye?’ ”

Authentic vs. anonymous

When dealing with families that lack religious affiliations, funeral directors sometimes step into the breach.

“We’ve been functioning as celebrants, but we never had the training,” said Kelly Woltjer, who owns and operates three funeral homes in northwestern Minnesota with her parents. “We meet the ones who express that they are Christian but don’t go to church and are looking for someone to lead the service. We need help learning how to give them something different.”

Woltjer said many families don’t want mentions of salvation and eternal life, but seek comfort in what’s familiar. “A lot of them will ask for the Lord’s Prayer or the 23rd Psalm and ‘Amazing Grace,’ ” she said.

Some taking celebrant training are licensed funeral directors, like Woltjer, who are formally schooled in embalming and mortuary science. Others hope to work as independent celebrants, who are called in by funeral directors to fill the gap.

Jessica Moujouros works with young people who have experienced loss. That’s what inspired the program director at the Children’s Grief Connection in Willow River, Minn., to undergo the training.

“We see kids who come to our family grief camp because they didn’t have a good funeral experience. Their pain was trivialized. We want to give them a better ceremony that would help them on that stage of their grief journey.”

Moujouros has seen the value of the celebrant option in her own life.

“When my grandfather died last year, we had a celebrant who talked to his last surviving sister and we learned things about him that we never knew. The service and the story was wonderful,” she said. “When my other grandfather died, the town priest pronounced his name wrong.”

Houston-based SCI, the nation’s largest chain of funeral homes, offers celebrants as one of its funeral options. But others in the industry have been slow to embrace the concept.

“I was talking to a small-town funeral director and he said, ‘We would never offer a celebrant.’ He said he wouldn’t risk offending the clergy in his community. I was taken aback by that. He missed an opportunity to serve,” said Prof. Michael LuBrant, director of the Program of Mortuary Science at the University of Minnesota.

While LuBrant called the funeral industry “notoriously resistant to change,” he’s seeing a major shift in the kind of the death rituals that families seek, with tunes from the radio instead of the hymnal or a Champagne toast as a service concludes.

Stansbury agrees.

“Millennials are the least religiously affiliated generation in history and they’re getting ready to bury their baby boomer parents,” she said. “They will demand touching, authentic ceremonies that speak to them and their values. We need to make sure they understand they can have that.”

Complete Article HERE!

Sexuality, Intimacy and Palliative Care

A ground breaking program at Neringah Hospital (Wahroonga, NSW) is meeting the sexual and intimacy needs of people coming to the end of their life.


[W]hile research has shown that patients in palliative care have unmet sexuality and intimacy needs, they are usually not addressed. At Neringah, a 19 bed palliative care hospital, patients and staff are encouraged to normalise topics around sex and sexual desire.

“Sexuality and dying are considered taboo subjects, and most people feel that people in this stage of their lives are too ill to think about sex,” according to Brigitte Karle, Clinical Nurse Educator with HammondCare.

“But our palliative care staff – and our patients – recognise that sexuality is part of the holistic care of patients, and this has resulted in the “Let’s Talk About It” program.

“We need to make it easier for patients, their partners and staff to feel that they can have the conversation without being uncomfortable,” she said.

To facilitate the process patients are advised that they can arrange for a particular sign to be affixed to their door that forbids entry for a certain period.

“Through our research we have identified that patients would like staff to initiate the conversation, and we have implemented a system where staff feel confident to recognise cues to take the appropriate action to provide “Private Couple Time”.

“We also identified a need for staff to have additional training and education so they feel more comfortable about the issue.”

At Neringah Hospital, patients can arrange for a particular sign to be affixed to their door that forbids entry for a certain period.

“Regardless of the setting it is important for all hospitals and staff working in sub-acute care to recognise that people who are in the last stage of their life may have sexual needs,” Ms Karle said. 

Ms Karle said Neringah’s unique set up, which included private rooms, allowed patients to have intimate private relationships with their partners that might not be available in other hospitals.

Neringah Hospital Inpatient unit provides short term acute care to patients managing a life limiting illness and is not a long stay facility. The unit provides palliative care for:

  • short term admission to alleviate symptoms and the distress they cause
  • holistic care to meet the special needs of patients in the final stages of their illness

The hospital has 13 single beds and three double rooms. The study, Let’s Talk About It, was conducted over an eight month period and involved training for staff and designing ways that patients and their partners could have private time.

Brigitte Karle, Clinical Nurse Educator with HammondCare

Complete Article HERE!

The Christian case for assisted dying


[B]efore and after photos of Frenchwoman Chantal Sebire motivated me, in 2009, to become public in advocating, as a Christian, for the terminally ill to be shown Christian empathy, love and compassion, and to be given an additional choice when even the best palliative care cannot ease their futile suffering.

Chantal, who had an aggressive nasal cancer, that had left her blind, her jaw disintegrating and suffering “atrocious pain”, was pleading for assistance to die.

Since then my views have been reinforced by Christians far more theologically qualified than I am, and many examples of futile suffering sent to me by Christians who have watched loved ones dying inhumanely, asking how can this be compatible with Jesus’ message of love.

Catholic theologian Hans Kung, in his book A Dignified Dying states:

As a Christian and a theologian I am convinced that the all-merciful God, who has given men and women freedom and responsibility for their lives, has also left to dying people the responsibility for making a conscientious decision about the manner and time of their deaths. This is a responsibility which neither the state nor the church, neither a theologian nor a doctor, can take away.

Anglican Archbishop Emeritus Desmond Tutu has written:

I know that we will all die and that death is a part of life. Terminally ill people have control over their lives, so why should they be refused control over their deaths? Why are so many instead forced to endure terrible pain and suffering against their wishes?

Regardless of what you might choose for yourself, why should you deny others the right to make this choice? For those suffering unbearably and coming to the end of their lives, merely knowing that an assisted death is open to them can provide immeasurable comfort.

In refusing dying people the right to die with dignity, we fail to demonstrate the compassion that lies at the heart of Christian values. I pray that politicians, lawmakers and religious leaders have the courage to support the choices terminally ill citizens make in departing Mother Earth. The time to act is now.

Complete Article HERE!

5 Things The Death Of My Best Friend Taught Me About Life

By Megan Harris

[O]n July 6, 2015, I awoke to a phone call alerting me that my best friend of 17 years had been killed.  

The details were spotty: there had been a boating accident roughly 36 hours prior on a lake in North Carolina. Jenna had been killed along with her uncle. Her cousin and boyfriend, also on the boat, were in the hospital.

As I tried to make sense of what happened, I felt as though I was having an out-of-body experience. The entire time I sat in a comatose state of disbelief, my eyes glued to a text message she had sent me less than four hours before the accident. My brain refused to believe that someone I had just spoken to could be gone. I called her phone over and over again, hoping she would answer and explain that the whole thing had been an elaborate misunderstanding; but every time her voicemail picked up, the automated response alerted me that the mailbox was full.

The weeks that followed were a blur. Planning her funeral, comforting her grieving family and friends, packing up her house, all of the terrible side effects of tragedy compounded by the fact that she was four months shy of her 30th birthday.

And just like that, I entered into a completely new chapter: Life After Death.

Here’s what I’ve learned.

Every cliché you’ve ever heard is true

Life is precious. Everyday is a gift. Live each day like your last. Before losing my best friend, phrases like this seemed reduced to posters hanging on the walls of a guidance counselor’s office or accompanying a wistful Instagram post of a woman staring off into the sunset. Now, they read like totems from people who walked a similar path before me.

Losing someone, especially so suddenly, is a sobering reminder that the time we have on this planet really is so finite. All of the time we spend frustrated sitting in traffic, obsessing over how we look or what we’ll wear, arguing with a partner over who should unload the dishwasher, things that take up so much real estate in our minds cease to be important the moment our life is over. With that new knowledge, knowing that today could be our last, do we really want to spend it pissed off?

Now, I chose to live by a new rule: Life is short, order dessert.

You are stronger than you think

If you would have asked me a few years ago what my thoughts on death were, you would have been met with stunning anxiety. I spent so much of my time thinking about what I would do if I were to experience loss. I obsessed over how I would feel if I were to lose a loved one. I comforted grieving friends with praise, proclaiming them to be so strong, so resilient — all the while imagining myself in the same situation with different results. Surely I would be a withering mess, I told myself. I’d probably never stop crying or be able to smile again.

Then, one day, I was walking in their shoes and, believe it or not, I was putting one foot in front of the other. Sure, it was miserable and challenging, but I was doing it. I was still here, breathing and living and moving. To borrow a line from Bob Marley, “You never know how strong you are, until being strong is your only choice.” Another cliché come true.

Grief, like life, is a rollercoaster

If death teaches us anything, it’s that life is a constant of ups and downs. With every momentously tragic event, there are also incredible highs: birthdays, anniversaries, first love, first heartbreak, job promotions and layoffs. All of the ebbs and flows of life play out similar to the phases of grief.

Some days there are intense lows where the very act of getting out of bed seems impossible. Other days there are glimpses of happiness found in revisiting a memory or the first time you laugh, really laugh, after believing you may never feel joy again. The amount of time we spend on this rollercoaster differs for everyone; for some, we never disembark. But, as we grow to learn in time, the peaks and valleys become less severe and we are able to anticipate when the next heart-stopping plunge is around the corner.

Your pain can be used to help others

I am always so amazed by people who are able to turn their tragedy into triumph. We see stories everyday of profound individuals who have been to the edge and come back better, stronger, believing their divine purpose is to use their suffering to help others. I am not one of those people. I did not open a charity or become a motivational speaker.

For a long time, all I did was cry and move about my days in a zombie-like trance. Then, one day, an acquaintance of mine posted on Facebook about losing their friend in a freak accident. Immediately, I felt compelled to reach out to them to offer my condolences and share resources (books, a local therapist). I hoped I could provide them with some comfort, albeit minimal. I didn’t run a 5k or raise money, but the very act of letting someone know they weren’t alone made me feel as though I could make a difference, however small.

You’ll never be the same — but you will be okay

While you never fully “get over” loss, in time, you do learn how to live with it. For me, grief feels like living with an injury that never quite properly healed. Your body learns to adapt and rebuild and, over time, scar tissue covers the spot where the injury occurred.

You learn to live with this “new normal.” A giant, ugly scar that reminds you of the beautiful person you once knew. Sometimes it hurts and other times it just hurts to look at; but it’s always there — even if years later others can’t see it or even remember you have it. Life does go on after tragedy. It doesn’t go back to the way it was, but it does move forward. You keep moving forward — and that’s okay.

Complete Article HERE!

The Art of Natural Death Care

[T]he Art of Natural Death Care raises awareness of an alternative way in which families can care for their loved ones at the time of death. The Sophia Center for Life Studies Crossings Care Community, along with many forward thinking people around the country, are bringing death care back to family and community. Natural home death care is legal, even without a funeral director in most states, and is an alternative to the conventional way in which death has been handled in the United States over the last century. This growing movement of home funeral and green burial care is driven by the belief that this way can be more meaningful, affordable, and environmentally friendly. Families can care for their loved ones at the time of death bringing individuality, sacredness, love and reverence. The Art of Natural Death Care can help get the conversation started about end of life choices.

The Sophia Center for Life Studies would like to thank filmmaker Katelyn LaGrega for donating her time and energy and dedicating her heart and soul in creating this film. We believe that this film can serve individuals and organizations across the country who are dedicated to educating about Natural Death Care options. We are passionate about this work and encourage the use and sharing of this film to support this movement and raise awareness. Donations for the creation and production of this film can be made HERE!

The Sophia Center for Life Studies

The Art of Natural Death Care from Katelyn LaGrega on Vimeo.

Dying is a Sacred Act

by Frank Ostaseski

[M]irrors reflect the truth of what strikes their surface. The eyes of a dying patient are the clearest mirrors I have ever known. In their gaze, there is simply no place to hide. Over the years, the habits of my life have been reflected in those eyes.

Once while washing the back of a hospice patient named Joe he turned toward me and said, “I never thought it would be like this.” I asked what he had thought it might be like. He answered, “I guess I never really thought about it.” Death had taken him by surprise. Perhaps we are not so different.

In the sacred, Hindu epic poem the Mahabharata there is a question that speaks to this tendency. “In all of the worlds what is most wondrous?” The answer that is given is; “That no man no woman though they see people dying all around them believes it will happen to them.”

We make an enormous effort to keep death at arms-length. We spend more than 50% of our healthcare dollars in the final six months of life, literally throwing money at death. We shut away our elders in nursing homes to avoid confronting their pain and our destiny. We have a multi-billion-dollar cosmetics industry that tries to keep us all looking young. We even put rouge on people in the coffin.

Death is the fulcrum issue of our life and yet we can barely use the word. People don’t die they “pass away” or they “expire” like credit cards. We make plans for all sorts of activities; when to get married, the number of children we will have, where to go on vacation, which career moves to make or how we will spend our retirement—all of which may never happen. But death, the one event that is certain to occur, barely receives a sidelong glance.

Dying is at its heart a sacred act; it is itself a time, a space, and process of surrender and transformation. The sacred is not separate or different from all things, but rather hidden in all things. Dying is an opportunity to uncover what is hidden.

Walking the gauntlet of thirty beds on the long single hospice ward at Laguna Honda Hospital, I noticed Isaiah out of the corner of my eye. An African-American man raised in Mississippi, Isaiah was actively dying. His breathing was labored, and he was sweating up a storm. I sat down next to him.

     “You look like you’re working really hard,” I said.

     Isaiah raised his arm, pointed to the distance, and said, “Just gotta get there.”

     “I forgot my glasses. I can’t see that far in the distance. Tell me what you see.”

     Isaiah described a bright green pasture and a long hill leading to a grassy plateau.

     I asked, “If I promise to keep up, can I come?”

He grabbed my hand tight, and Isaiah and I started climbing together. His breathing got shorter, and he perspired more with every step. It was a long walk. Not an easy one.

     “What else do you see?” I asked.

He described a one-room red schoolhouse with three steps leading up to a door.

My training informed me that Isaiah was disoriented to time and location. I could have told the old man that his visions were likely being caused by brain metastasis and morphine. I could have reminded him that we were in a ward at Laguna Honda Hospital. But that was only true on the most superficial level.

The deeper truth was that we were walking to a little red schoolhouse.

     I asked, “Do you want to go in?”

     Isaiah sighed. “Yeah. I’ve been waitin’.”

     “Can I go with you?” I asked.


     “Okay, then, you go,” I said.

A few minutes later, Isaiah died quite peacefully.

The great spiritual and religious traditions have any number of names for the unnamable: the Absolute, God, Buddha Nature, True Self. All these names are too small. In fact, all names are too small. They are fingers pointing at the moon. I invite you to connect with what you know and trust most in your heart of hearts.

I use the simple term Being to point at that which is deeper and more expansive than our personalities. At the heart of all spiritual teachings is the understanding that this Being is our most fundamental and benevolent nature. Our normal sense of self, our usual way of experiencing life, is learned. The conditioning that occurs as we grow and develop can obscure our innate goodness.

Some part of us, deep in our hearts has known this truth. If not, we would not long for a return to it. And this part of our being knows that we will never be satisfied until our whole being is immersed in this oneness.

Complete Article HERE!