[T]he death of someone close during childhood can haunt a child throughout their lives. However, it doesn’t have to if children are allowed to go through the grieving process in their own time and in their own way. “Children are naturally resilient,” says Katherine Supiano, PhD, LCSW, FT, director of Caring Connections: A Hope and Comfort in Grief Program at the University Of Utah College Of Nursing. “If they are given an opportunity to express their feelings and given support from adults they not only do well with their grief and grow up to be extremely helpful adults.”
Supporting a child through the grief process starts with being honest with them about what has happened. No, they don’t need to know every gory detail of a car accident or an illness, but they need to be given the facts in plain simple language. “Never tell a child someone just ‘went to sleep,’” says Supiano. “That could lead to a child having sleep issues later because they equate going to sleep with dying.”
Simple is often best when it comes to the spiritual aspects of death as well. Adults may believe they are being comforting when they tell grieving children about a master plan, or that their loved one is in a better place, but such words may fall on deaf ears – or have another impact. “In the face of raw new grief those words don’t feel true,” says Supiano. “They can end up being wounding and may drive people from a faith community.”
Instead of focusing on the spiritual when supporting a child through grief adults should focus on more basic needs. “Think about physical needs: is the child sleeping, are they eating, are they comfortable,” says Supiano. “Then look at the emotional and cognitive needs: do they need a hug, are you listening to them, are you answering their questions. Let the spiritual comfort be wrapped around the practical.”
It is also important to know when outside help is needed. There are times when family members experiencing their own grief cannot offer support to a child. There are services that can help in these situations. “Caring Connections can put you in touch with agencies and organizations that can help,” says Supiano. “If we can’t help we will help you find someone who can.”
A child who does not receive support in the face of grief may deal with lasting impacts. They cannot be expected to heal on a certain timeline, or to keep their thoughts and feelings to themselves. “When people are denied that freedom to grieve openly and with support the grief process can become thwarted,” says Supiano. “They may learn to mask their feelings and put on a veneer. Or they may develop coping mechanisms that are self-destructive.”
Unsupported grief at a young age could also lead to depression or anxiety. This could be exacerbated in cases where a family member dies suddenly and without warning. “You have a young person who suddenly has an ill-defined awareness that the world is a dangerous place,” says Supiano. “That’s gasoline on the fire of anxiety.”
There is no right way to go through grief. In facing loss everyone, including children, must find what works for them. However, in every case, the presence of support is what helps the process go smoothly. “It is especially important for children as they are still learning their emotional landscapes,” says Supiano. “Adults who support them and give good examples can have a powerful impact.”
At Gerald Chinchar’s home in San Diego, Calif., Nurse Sheri Juan (right) checks his arm for edema that might be a sign that his congestive heart failure is getting worse.
By Anna Gorman
[G]erald Chinchar, a Navy veteran who loves TV Westerns, isn’t quite at the end of his life, but the end is probably not far away. The 77-year-old’s medications fill a dresser drawer, and congestive heart failure puts him at high risk of emergency room visits and long hospital stays. He fell twice last year, shattering his hip and femur, and now gets around his San Diego home in a wheelchair.
Above all, Chinchar hopes to avoid another long stint in the hospital. He still likes to go watch his grandchildren’s sporting events and play blackjack at the casino.
“If they told me I had six months to live, or [could instead] go to the hospital and last two years, I’d say leave me home,” he said. “That ain’t no trade for me.”
Most aging people would choose to stay home in their last years of life. But for many, it doesn’t work out: They go in and out of hospitals, getting treated for flare-ups of various chronic illnesses. It’s a massive problem that costs the health care system billions of dollars and has galvanized health providers, hospital administrators and policymakers to search for solutions.
Sharp HealthCare, the San Diego health system where Chinchar receives care, has devised a way to fulfill his wishes and reduce costs at the same time. It’s a pre-hospice program called Transitions, designed to give elderly patients the care they want at home and keep them out of the hospital.
Social workers and nurses from Sharp regularly visit patients in their homes to explain what they can expect in their final years, help them make end-of-life plans and teach them how to better manage their diseases. Physicians track their health and scrap unnecessary medications.
All the medicine Chinchar takes for his congestive heart failure and other ailments fills a kitchen drawer. “What we like to do as a palliative care program is streamline your medication list,” the nurse explained during a home visit. “They may be doing more harm than good.”
Unlike hospice care, patients in this program don’t need to have a prognosis of six months or less to live, and they can continue getting treatment that is aimed at curing their illnesses, not just treating symptoms.
Before the Transitions program started, the only option for many patients in a health crisis was to call 911 and be rushed to the emergency room. Now, they can get round-the-clock access to nurses, one phone call away.
“Transitions is for just that point where people are starting to realize they can see the end of the road,” said Dr. Dan Hoefer, a San Diego palliative care and family practice physician, and one of the creators of the program. “We are trying to help them through that process,” he said, “so it’s not filled with chaos.”
The importance of programs like Transitions is likely to grow in coming years as 10,000 baby boomers — many with multiple chronic diseases — turn 65 every day. Transitions was among the first of its kind, but several such programs, formally known as home-based palliative care, have since opened around the country. They are part of a broader push to improve people’s health and reduce spending through better coordination of care and more treatment outside hospital walls.
But a huge barrier stands in the way of pre-hospice programs: There is no clear way to pay for them. Health providers typically get paid for office visits and procedures, and hospitals still get reimbursed for patients in their beds. The services provided by home-based palliative care don’t fit that model.
In recent years, however, pressure has mounted to continue moving away from traditional payment systems. The Affordable Care Act has established new rules and pilot programs that reward the quality of care, rather than the quantity. Those changes are helping to make home-based palliative care a more viable option.
In San Diego, Sharp’s palliative care program has a strong incentive to reduce the cost of caring for its patients, who are all in Medicare managed care. The nonprofit health organization receives a fixed amount of money per member each month, so it can pocket what it doesn’t spend on hospital stays and other costly medical interventions.
‘Something that works’
Palliative care focuses on relieving patients’ stress, pain and other symptoms as their health declines, and it helps them maintain their quality of life. It’s for people with serious illnesses, such as cancer, dementia and heart failure. The idea is for patients to get palliative care and then move into hospice care, but they don’t always make that transition.
The 2014 report “Dying in America,” by the Institute of Medicine, recommended that all people with serious advanced illness have access to palliative care. Many hospitals now have palliative care programs, delivered by teams of social workers, chaplains, doctors and nurses, for patients who aren’t yet ready for hospice. But until recently, few such efforts had opened beyond the confines of hospitals.
Kaiser Permanente set out to address this gap nearly 20 years ago, creating a home-based palliative care program that it tested in California and later in Hawaii and Colorado. Two studies by Kaiser and others found that participants were far more likely to be satisfied with their care and more likely to die at home than those not in the program. (Kaiser Health News is not affiliated with Kaiser Permanente.)
One of the studies, published in 2007, found that 36 percent of people receiving palliative care at home were hospitalized in their final months, compared with 59 percent of those getting standard care. The overall cost of care for those who participated in the program was a third less than for those who didn’t.
But Enguidanos knew that Kaiser Permanente was unlike most health organizations. It was responsible for both insuring and treating its patients, so it had a clear financial motivation to improve care and control costs. Enguidanos said she talked to medical providers around the nation about this type of palliative care, but the concept didn’t take off at the time. Providers kept asking the same question: How do you pay for it without charging patients or insurers?
“I liken it to paddling out too soon for the wave,” she said. “We were out there too soon. … But we didn’t have the right environment, the right incentive.”
A bold idea, rooted in experience
Hoefer is a former hospice and home health medical director and has spent years treating elderly patients. He learned an important lesson when seeing patients in his office: Despite the medical care they received, “they were far more likely to be admitted to the hospital than make it back to see me.”
Doctors, nurses and social workers meet bimonthly to discuss patient cases for the Sharp HealthCare Transitions program in San Diego.
Doctors, nurses and social workers meet bimonthly to discuss patient cases for the Sharp HealthCare Transitions program in San Diego.
When his patients were hospitalized, many would decline quickly. Even if their immediate symptoms were treated successfully, they would sometimes leave the hospital less able to take care of themselves. They would get infections or suffer from delirium. Some would fall.
Hoefer’s colleague, Suzi Johnson, a nurse and administrator in Sharp’s hospice program, saw the opposite side of the equation. Patients admitted into hospice care would make surprising turnarounds once they stopped going to the hospital and started getting medical and social support at home, instead. Some lived longer than doctors had expected.
In 2005, the pair hatched a bold idea: What if they could design a home-based program for patients before they were eligible for hospice? Thus, Transitions was born. They modeled their new program in part on the Kaiser experiment, then set out to persuade doctors, medical directors and financial officers to try it. But they met resistance from physicians and hospital administrators who were used to getting paid for seeing patients.
“We were doing something that was really revolutionary, that really went against the culture of health care at the time,” Johnson said. “We were inspired by the broken system and the opportunity we saw to fix something.”
Despite the concerns, Sharp’s foundation board gave the pair a $180,000 grant to test out Transitions. And in 2007, they started with heart failure patients and later expanded the program to those with advanced cancer, dementia, chronic obstructive pulmonary disease and other progressive illnesses. They started to win over some doctors who appreciated having additional eyes on their patients, but they still encountered “some skepticism about whether it was really going to do any good for our patients,” said Dr. Jeremy Hogan, a neurologist with Sharp. “It wasn’t really clear to the group … what the purpose of providing a service like this was.”
Nevertheless, Hogan referred some of his dementia patients to the program and quickly realized that the extra support for them and their families meant fewer panicked calls and emergency room trips.
Hoefer said doctors started realizing home-based care made sense for these patients — many of whom were too frail to get to a doctor’s office regularly. “At this point in the patient’s life, we should be bringing health care to the patient, not the other way around,” he said.
Across the country, more doctors, hospitals and insurers are starting to see the value of home-based palliative care, said Kathleen Kerr, a health care consultant who researches palliative care.
“It is picking up steam,” she said. “You know you are going to take better care of this population, and you are absolutely going to have lower health care costs.”
Nurse Sheri Juan and social worker Mike Velasco, take health care to the Chinchars.
Providers are motivated in part by a growing body of research. Two studies of Transitions in 2013 and 2016 reaffirmed that such programs save money. The second study, led by outside evaluators, showed it saved more than $4,200 per month on cancer patients and nearly $3,500 on those with heart failure.
The biggest differences occurred in the final two months of life, said one of the researchers, Brian Cassel, who is palliative care research director at the Virginia Commonwealth University School of Medicine in Richmond.
A home visit tailored to each family
Nurse Sheri Juan and social worker Mike Velasco, who both work for Sharp, walked up a wooden ramp to the Chinchars’ front door one recent January morning. Juan rolled a small suitcase behind her containing a blood pressure cuff, a stethoscope, books, a laptop computer and a printer.
Gerald Chinchar’s wife, Mary Jo (right), told the visiting nurse she especially appreciates getting the advice about what her husband should eat and drink. He doesn’t always listen to his wife, Mary Jo said. “It’s better to come from somebody else.”
Late last year, Gerald Chinchar’s doctor recommended he enroll in Transitions, explaining that his health was in a “tenuous position.” Chinchar has nine grandchildren and four great-grandchildren. He has had breathing problems much of his life, suffering from asthma and chronic obstructive pulmonary disease — ailments he partly attributes to the four decades he spent painting and sandblasting fuel tanks for work. Chinchar also recently learned he had heart failure.
“I never knew I had any heart trouble,” he said. “That was the only good thing I had going for me.”
Gerald Chinchar’s wife, Mary Jo (right), told the visiting nurse she especially appreciates getting the advice about what her husband should eat and drink. He doesn’t always listen to his wife, Mary Jo said. “It’s better to come from somebody else.”
Now he’s trying to figure out how to keep it from getting worse: How much should he drink? What is he supposed to eat?
That’s where Juan comes in. Her job is to make sure the Chinchars understand Gerald’s disease so he doesn’t have a flare-up that could send him to the emergency room. She sat beside the couple in their living room and asked a series of questions: Any pain today? How is your breathing?
Juan checked his blood pressure and examined his feet and legs for signs of more swelling. She looked through his medications and told him which ones the doctor wanted him to stop taking.
“What we like to do as a palliative care program is streamline your medication list,” she told him. “They may be doing more harm than good.”
His wife, Mary Jo Chinchar, said she appreciates the visits, especially the advice about what Gerald should eat and drink. Her husband doesn’t always listen to her, she said. “It’s better to come from somebody else.”
Growing acceptance of palliative care
Chinchar (left) is now 77. He told nurse Sheri Juan he never expected to live into old age. In his family, he said, “you’re an old-timer if you make 60.”
Outpatient palliative care programs are cropping up in various forms. Some new ones are run by insurers, others by health systems or hospice organizations. Others are for-profit, including Aspire Health, which was started by former senator Bill Frist in 2013.
Sutter Health operates a project called Advanced Illness Management to help patients manage symptoms and medications and plan for the future. The University of Southern California and Blue Shield of California recently received a $5 million grant to provide and study outpatient care. “The climate has changed for palliative care,” said Enguidanos, the lead investigator on the USC-Blue Shield project.
Ritchie said she expects even more home-based programs in the years to come. “My expectation is that much of what is being done in the hospital won’t need to be done in the hospital anymore and it can be done in people’s homes,” she said.
Challenges remain, however. Some doctors are unfamiliar with the approach, and patients may be reluctant, especially those who haven’t clearly been told they have a terminal diagnosis. Now, some palliative care providers and researchers worry about the impact of President Donald Trump’s plans to repeal the Affordable Care Act and revamp Medicare — efforts that seem to be back in play.
Gerald Chinchar, who grew up in Connecticut, said he never expected to live into old age. In his family, Chinchar said, “you’re an old-timer if you make 60.”
Chinchar said he gave up drinking and is trying to eat less of his favorite foods — steak sandwiches and fish and chips. He just turned 77, a milestone he credits partly to the pre-hospice program.
“If I make 80, I figured I did pretty good,” he said. “And if I make 80, I’ll shoot for 85.”
An Illinois couple married for 69 years have died within an hour of each other, family members tell US media.
Till death do us part: The couple first met in their native Argentina
Isaac Vatkin, 91, was holding the hand of his wife Teresa, 89, as she succumbed to Alzheimer’s disease on Saturday, the Daily Herald reported.
Isaac died 40 minutes later. Family members said they took comfort in knowing they were together at the end.
“You didn’t want to see them go,” said grandson William Vatkin, “but you couldn’t ask for anything more.”
The Vatkins sparkle on their wedding day
“Their love for each other was so strong, they simply could not live without each other,” said daughter Clara Gesklin at the couple’s joint funeral.
“They were always in love, literally to the end. To the last second,” said Rabbi Barry Schechter, who led the service at the Shalom Memorial Funeral Home in the Chicago suburb of Arlington Heights.
Staff at the local Highland Park Hospital found Mr and Mrs Vatkin unresponsive and breathing shallowly on Saturday and chose to place their beds side by side.
Family members positioned their hands so they touched.
The couple raised three children in Skokie, Illinois, and had a close relationship with their grandchildren, family members said.
Mr Vatkin had been a kosher meat distributor and Mrs Vatkin a homemaker and manicurist.
South Vietnamese funerals often include street performers such as fire eaters and snake handlers. Here a brass band watches as a performance takes place.
[G]iven the long and diverse history of human kind, it’s remarkable how alike customs can be in different parts of the planet.
That’s the idea behind a new exhibit at the Minneapolis Institute of Art opening this weekend. The show is built around a movie called “The Living Need Light, the Dead Need Music.”
That title is an almost direct translation of a Vietnamese phrase, said Tuan Andrew Nguyen, whose artist collective called the Propeller Group made the 20 minute film.
He said the title captures the essence of Vietnamese funeral practices.
“These ceremonies have to be lively and have a lot of music,” he said.
The Propeller Group film includes a well-known Vietnamese brass band which performs at funerals. For the film the group had them march in unusual places including mud flats.
Music at those funerals often comes from brass bands. And Nguyen, who spent part of his childhood in the U.S., said they reminded him of New Orleans jazz funerals, and that got it got him thinking.
“We found this really interesting kind of overlap between the two cultures that don’t speak to each other directly, yet they have like very similar ways of celebrating death,” Nguyen said.
That is part of the thinking behind “The Living Need Light, the Dead need Music.” The film is beautiful, engaging, and sometimes disturbing. It features many of the performers hired for funerals in Vietnam: professional mourners, acrobats, martial artists, fire eaters, snake handlers.
“For us, it’s about making a film that pays homage to the people that labor around the idea of death, “said Nguyen.
A central character in the film is Sam, a transgender woman. Transgender people often perform at Vietnamese funerals, one of the few places where they are welcomed.
While the Propeller Group is an artistic collective based in Ho Chi Minh City, Nguyen said, it initially described itself as an ad agency so it could get around government restrictions on film making.
Propeller described its early work as music videos, and it’s a term Nguyen uses for this work too.
“The film kind of sits on the edge of being documentary and fiction,” he said.
Minneapolis Institute of Art Photography and New Media Curator Yasufumi Nakamori said that was attractive to him. He realized he could build a show around the film using Mia’s vast collections.
“I invited them to collaborate with the museum, for them to select the objects and create the installations” Nakamori said.
Starting with the collection’s database, Nakamori and the Propeller Group searched for objects that reflected the ideas and artifacts in the film.
Minneapolis Institute of Art Curator of Photography and New Media Yasufumi Nakamori, left, and Propeller Group member Tuan Andrew Nguyen pose with a 10th century Chinese funerary mask. It’s at the entrance of the latest New Pictures exhibit at the Institute, which is based around a movie the Propeller Group made on Vietnamese funeral practices. The exhibit also includes artifacts from the museum’s collection and sculptures created by the Propeller Group. These include funerary masks of members of the Propeller Group, including Nguyen, created using 3D printers.
They gathered pieces from the Asian, African, Native American and classical collections, including a 4,000-year-old Egyptian model boat. It’s believed to be the oldest object in the Institute’s holdings.
As visitors enter the gallery, they see the film, playing continuously at the far end of the room. The objects stretch out towards the screen like a funeral cortege.
Mixed in with them are sculptures the Propeller Group made to build commonalities with the movie. A sixth century Buddha figure is surrounded by a gilded ring of fire similar to a scene in the film.
Also like in the film, there’s a huge ouroboros — or a ring formed by snakes, latching on to each other’s tails.
For the New Pictures show, Nguyen and Nakamori searched the Institute archive for pieces from cultures around the world with similarities to the images in the Propeller Group film.
The final effect of the show is somehow both alien and utterly familiar. Nakamori hopes visitors will recognizes the ideas if not the objects.
“I don’t want it to be just this exotic film from South Vietnam,” he said. “Rather I want a viewer to connect with their own lives.”
One example hangs on the wall at the entrance to the show: a 1,000-year-old gilt bronze funerary mask of a young woman. After seeing it Nguyen and another Propeller Group member had their own masks made using 3D imaging. They hang on the wall nearby.
“In these days and times where the selfie and the way that people imagine themselves and their portrait becomes so prevalent,” he said, “we wanted to rethink that.”
As Nguyen stood looking at his own death mask, he quietly said, “it’s surreal.”
[V]irtual reality is not just for showing off the latest games and inventions. The technology has found a purpose in the healthcare industry as part of improving hospice and end-of-life care.
When someone is terminally ill, it may be inevitable that the individual will, at some point, go to a hospice or treatment center for end-of-life care or, at the least, to a respite center to give home caregivers a break.
However, in the UK under a creaking, strained, and underfunded National Health Service (NHS), sometimes these facilities may be suffering themselves from a lack of budget to make these stays as comfortable as they could otherwise be.
In addition, and perhaps most importantly, taking someone away from their home at such a stage can be a difficult transition.
To make this process a little less heartbreaking, local charity hospice Loros, which provides hospice and home care to roughly 2,500 terminally ill individuals across Leicester, Leicestershire, and Rutland, UK, has launched a new project which uses virtual reality to enhance end-of-life care.
The idea is to help those who have limited mobility to experience life outside of treatment and give them the chance to go back to places in their past which hold fond memories, as well as experience new areas beyond the hospice and home.
As shown in the video below, 70-year-old John, who is diagnosed with motor neuron disease (MND), is trying out the headset equipped with a video of Bradgate Park. This kind of technology can give patients a little more joy in their lives when perhaps it matters most.
”
Since being diagnosed with MND, we can get out but I can’t spend a lot of time out of the wheelchair, so being able to have these experiences through the glasses is really good,” said John. “It’s almost as good as the real thing.”
It’s a reminder that while many of us obsess over whether or not the latest mobile device will have a headphone jack or an impossibly thin shell or not, advances in technology can also provide far more important experiences.
Loros is currently working with a VR company to produce more films and hopes to commission new films that other hospice providers will be able to use in their own virtual reality services.
“Research suggests that the brain accepts the virtual world within 20 seconds after which the experience becomes all-absorbing,” Loros CEO John Knight commented. “We recognize that some of our patients are often restricted to where they can go due to their illness, so we wanted to help give them the opportunity to still enjoy life wider than their restrictions allow, through virtual reality.”
There were about 150 people at my father’s memorial service.
[S]tanding in the receiving line afterward it seemed like every conversation, whether it was with an old friend or a total stranger, began with the exact same phrase, “I’m sorry for your loss.” Most conversations didn’t go far beyond that, partly because there’s not much to say in response except, “thank you.”
A few people managed to mix in another platitude like, “He’s in a better place now” or, “At least his suffering is over,” but it all started to sound like a broken record pretty quickly; one that I had heard many times before, seen played out in movies and even unknowingly participated in myself. Now it was being played for me at one of the most painful moments of my life, and the hollowness of that experience would literally change my course forever.
Why do so many of us struggle with what to say to someone who is grieving?
Perhaps it’s because of our cultural death phobia, and the way it pathologizes everything related to sadness. If we’re not better at dealing with grief, then it’s because we’ve never been taught better. Unfortunately, that leaves the majority of people with only one stock phrase in their repertoire, “I’m sorry for your loss.”
Grieving Needs More than Clichés.
One problem is simply the overwhelming use of this one phrase, while simultaneously reserving it almost exclusively for the family. It seems as the close friends aren’t really grieving at all, while family members get the idea of loss hammered into them over and over.
Saying, “I’m sorry for your loss” is a bit like the cashier saying, “Have a nice day,” at the convenience store. It betrays a lack of original thought and is so pervasive it has become irritating for many.
When responses are this programmed, how sincere is the sentiment? As more people start to become irritated by it, choosing this particular phrase because it feels “safe” isn’t really that safe anymore.
Clarity Works. Euphemisms Don’t.
Using the language of loss as a euphemism for death is one of many ways in which our culture conceals the reality of death, perpetuates our phobias about it, and keeps us trapped. Spoken by a griever, “I lost my mother in 2015” is being used to avoid saying the word “died.” Spoken to a griever it expresses pity combined with distancing, “I’m sorry for your loss.”
The problem is that it’s linguistically incorrect. The verb “to lose” is active, something we do. The reality of grief is that someone else died. You didn’t lose them in the same way you would lose your car keys or your wallet, and depending on your religious convictions you may not feel like you lost them at all.
For most of my life, I definitely thought of deceased loved ones as lost because I was well trained by the culture to do so. Visiting a Native American friend one day I said something about losing someone and my friend responded, “You don’t have to lose someone just because they died.”
That was the first time I was exposed to the idea that it’s possible to live in the presence of the dead, not as frightening ghosts, but as honored members of the clan.
These days I’ve become accustomed to drawing comfort from the idea that I’m living in the presence of departed loved ones. Actually, speaking to them in quiet moments when I’m alone is one of several key components—like meditation, being in nature or remembering special occasions—I use to process my grief whenever it shows up. Whether one wishes to think about that in terms of psychology or in terms of the spiritual language, it seems completely irrelevant. All I know is that I find it helpful.
It’s the Wrong Mental Programming.
Experts in the field of grief care (Stephen Jenkinson, for example) are starting to recommend using the language of suffering, healing, and overcoming challenges instead. The language of loss refutes the notion that there might be an upside to grief, a spiritual deepening that can result from being exposed to something that’s an inevitable consequence of being born and choosing to love each other. By shifting to the language of suffering, healing, and overcoming challenges instead, death and grieving can once again become the redemptive processes I’ve come to believe they were always meant to be.
After personally experiencing the old cliché and its real world application thousands of times over several decades, I remember quite vividly the first time someone said, “I’m sorry for your suffering. I’m here with you.”
How different those words felt!
I immediately knew the stranger sitting next to me on a park bench somehow understood something that had been missed by all the close friends and family who had been sorry for my loss, but not present with my suffering.
Firstly, she knew I was suffering, and her use of the word “sorry” came across as authentic compassion rather than pity. Second, there was no distancing or avoidance in the way she said it. She knew what I needed most: validation of my grief and someone willing to listen, even if that meant listening through some tears. Best of all there was no judgment.
The Challenges Ahead.
Significant numbers of people are starting to open up about their dissatisfaction with this worn out cliché. Others seem almost determined to defend it as the ultimate expression of sympathy. What the defenders don’t seem to understand is that no one will ever be offended or hurt by not saying, “I’m sorry for your loss.”
For those wanting to improve their grief communication by eliminating clichés with more accurate, helpful, and authentic responses, but still aren’t sure what to say, here are a few other choices in no particular order. These are just a few of the many options available, and they can be combined in various ways to make them both personal and appropriate.
1. I’m sorry you’re suffering right now, but I’m here with you and willing to help any way I can. Is there anything you need right now?
2. I’m sorry for whatever challenges might lie ahead for you, but I’m here and willing to help. Would it be okay if I call next week just to check in with you?
3. Please accept my deepest condolences. I can’t imagine what you must be going through right now, but I know enough about grief to know that it can be very challenging. Don’t hesitate to call me if there’s anything I can do to help.
4. I’m so sorry to hear about _____. I’m sure you’re going to miss him/her terribly. How are you holding up?
5. I know there’s nothing I can say right now to make things better, but I also know that having someone to talk to at times like this is really important, so don’t hesitate to call me whenever you need to.
Follow any of those with what you loved most about the deceased or tell a story about a favorite memory of them, and I think most people will be pleased with the deep level of connection that’s instantly created. I’m absolutely certain the bereft will feel less isolated and better supported.
One reason is that the phrases above easily open into longer conversations, while “I’m sorry for your loss” tends to shut them down. In some cases, it’s even appropriate to simply remain silent and offer them a deeply heartfelt hug instead.
Most important of all is just being willing to listen and be present.
You were born. You will die. And now, thanks to the internet, you’ll be publicly mourned.
Loved ones will change their profile pictures to photos of you. Stories will be shared on Facebook, Twitter, Weibo, VK. People may even snap selfies of themselves attending your funeral.
As familiar as we’ve become with the digital world, we’re still in the midst of adapting to our emotion-filled existences lived online. As social media evolves, we’re changing the ways we interact. The result: new etiquettes and new normals for every aspect of the human experience.
Even mourning.
“Over millennia, different communications media have affected and influenced how people relate to the dead,” says Tony Walter, professor of death studies at the University of Bath. “I see online mourning as the latest chapter in a story with a very long history and prehistory.”
Walter has tracked the evolution of grief back to the Stone Age. From the development of writing and mass literacy to photography and the recording of sounds and images, all had an identifiable effect on how we mourn.
Some academics see a strong parallel between grief on the internet and the advent of photography in the 19th century.
“That was revolutionary, this idea that you could have an image of the deceased,” says John Troyer, director of the Centre for Death and Society at the University of Bath. He’s also a member of the Order of the Good Death, a group of funerary professionals, academics and artists working to demystify death in a culture that fears it.
“Any new technology that gets used when it comes to death will almost always cause a momentary panic or freak-out,” he says. “Whatever the technology is, it just seems inappropriate.”
Post-mortem photos are considered shocking now in western culture, but there’s an ancient precedent for the practice. Taking likenesses from the bodies of the dead dates back at least to Roman times, when death masks were cast in wax. The masks would then be displayed at home and sometimes worn at funerals.
Nipper the dog, now recognised as the mascot for audio label HMV, was originally painted listening to an Edison phonograph recording — as he sits perched atop a coffin. One of the technology’s imagined uses would be the preservation of the voices of the dead.
A form of the Roman tradition of wearing the masks has returned on Facebook, where users in mourning often change their profile photos to those of lost loved ones.
The practice is also reminiscent of Georgians wearing black armbands, which served as visual signals the wearer was bereaved. Grief, experts say, used to be expressed in public.
In the modern world, however, our lives allow only so much time to mourn. Jobs keep us busy, families are on schedules. In the US, the situation is exacerbated because there is no federal bereavement law allowing people time off to grieve.
“I really believe that a lot of these social media mourning rituals are popping up because people aren’t able to mourn in public spaces the way that they used to,” says Candi Cann, an assistant professor at Baylor University and author of “Virtual Afterlives: Grieving the Dead in the Twenty-First Century.” “People have this need to be recognised as grievers.”
The portable tombstone
We’ve always talked to the dead.
Since the invention of the phonograph in 1877, people imagined audio recordings would be used to capture loved ones’ final words and preserve the voices of those departed. In private moments, we might even respond with “I miss you,” “I wish you were here,” or “You always knew what to do.”
This kind of talk has now made its way onto the internet. A message posted to a dead friend or a remembrance on a birthday demonstrates someone’s memory lives on.
Social media lets you address the dead directly and demonstrate that their memory lives on.
“When people would go and visit the tombstone and they would talk to the deceased, now you’re seeing that on the internet,” says Cann. “It’s essentially this portable tombstone.”
Social media gives us the illusion that the dead are still among the living. You can go to a Facebook or Twitter profile to read the person’s posts and look at their photographs. You can address them directly and post on their timeline.
“Most people will address the dead directly in the second person,” the University of Bath’s Walter says. “They do it knowing other people are going to read this, which is really interesting because if you’re writing to somebody it sort of implies they’re there and in some kind of way hearing this or receiving it.”
I Was Here
One of the most contentious issues around online grieving is the funeral selfie. It’s just what it sounds like.
Mourners pull out their phones, snap photos of themselves and other bereaved, and post to their favorite social media sites. To many, it seems gauche, even self-centered. It’s the latest example of a new death practice and it feels shocking to some people. A famous Tumblr even documented the trend until 2013, when it stopped updating.
“I think it was just an easy way for adults to tut at youth, like, ‘My God what are the kids doing, the kids these days are being corrupted by the technology,'” Troyer says. “I’d be more surprised if younger people weren’t taking selfies at funerals, because that’s what the phone has turned into.”
For a generation that’s grown up with phones and social networking, Cann says the selfie is just another component of their visual diaries. She says she’s seen that in her own daughter, who had surgery when she was 6 years old and asked to have her photo taken as soon as the operation was over. She wanted to document that moment.
Funeral selfies are just another entry in what are public diaries. They say, “I’m here and this is an important moment in my life.”
The complicated deaths
There are much darker taboos than whether it’s acceptable to snap a selfie at Gran’s funeral, like the deaths no one wants to talk about. Miscarriage, sudden death, suicide, voluntary euthanasia.
These are “complicated deaths,” says The Order of the Good Death’s Sarah Chavez, who also co-founded Death and the Maiden and helps run Death Salon. Unlike the sad but expected death of an older person or an ill patient, these can be controversial endings that make people uncomfortable. The response to these deaths can be very different.
Rather than an outpouring of support, the bereaved can feel isolated — and sometimes worse, Chavez says, speaking from experience.
Three years ago, Chavez’s unborn child was diagnosed with a fatal disease. When she told anyone, even medical professionals, the reaction was same.
“From dealing with decisions to counselors to specialists to anybody who I told, there was an immediate recoil,” Chavez says. “No one wanted to face me or deal with me.”
People mourning these deaths may look to social media, hoping to find people who’ve experienced similar traumas. Online social groups also provide a barometer to see how people will react.
It’s not always for the better.
Chavez said she scoured the internet for people who had experiences similar to hers. She found few. And those who posted their experiences overwhelmingly faced hostility.
A woman she knew gave birth to a stillborn child and, in her grief, got a tattoo of the child’s scan. She then took a photo and posted it to social media.
The response, from hundreds of people, was devastating.
People berated the mother, telling her “she should go die,” Chavez recalls. “Somebody actually said, ‘This is creepy wrong shit’.”
That’s changing, if slowly.
Private, safe forums have sprung up. Facebook groups have been created for people processing these deaths to seek support from others feeling the same emotions.
“Social media has really created this space for marginalized communities,” Chavez says. “It can make people feel like they’re not alone, there are others out there that are grieving with them, or are hurting, or are angry, or whatever those emotions are.”
Sun setting on gravestones at Abney Park Cemetery in London.
Etiquette in all things
So how should you respond to bereavement online? It’s not very different from how you’d respond offline, says Daniel Senning, a manners expert and spokesperson at the Emily Post Institute, an etiquette organisation.
“The first major faux pas that often happens is that you don’t want to scoop the news,” Senning says, noting that information travels fast on social media. “You don’t want to precede the family’s announcement onto social media if you can help it.”
Those close to the deceased should be told in person, but social media is appropriate for making sure a person’s wider circle sees the news.
As for offering condolences, Senning says there’s nothing wrong with responding to the news of a death in the medium you heard it. But that doesn’t mean you have to.
Senning says a handwritten condolence note carries the most weight. “In today’s rich communication environment, in making the choice to send a handwritten note, the medium itself becomes part of the message,” he says.
The more things change…
As it always has, the way we mourn is evolving. The internet is democratizing grief, even if the technology leaves us uncertain. But it always has, if that’s any consolation.
“These are just new norms or evolving ones, some of which are quite old and some of which look brand new,” the University of Bath’s Walter says. “It’s difficult for people to kind of negotiate this terrain. But I think it always was.”
