Death in the age of Facebook

Issues around social media may feel new, but technology has always created conflict in the way we grieve.


[I]f you’re reading this, three things are true.

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.

Death masks were used in more recent history, before the invention of photography, to capture a likeness of the deceased, particularly of important people. Some museums display death masks of notable figures, including the poet Dante and Napoléon Bonaparte.

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.”

Complete Article HERE!

For old folks left to die at Myanmar’s roadsides and cemeteries, these homes are their last hope

Cast aside “like rubbish” and turned away even by nursing homes, these elderly outcasts are given dignity at the end of life by volunteer groups outraged by their plight.


YANGON, MYANMAR: There she lay, on the ground in the darkness of night, moaning in pain as rats – drawn to the smell of blood from the lacerations on her body – nibbled at her wounds.

The elderly woman had just been involved in a road accident. But instead of getting help, the driver had abandoned the woman next to a rubbish dump by the road to fend for herself.

Daw Khin Ma Ma said her stomach churned at the sight of the battered old woman who was eventually conveyed to her nursing home. “Her rib bones were broken, some of which had pierced her lungs. We could see a hole in her back that had been gnawed on by the rats,” she said.  

“I’ve never seen such a terrible case before.”

The woman died some six months after arriving at the home.

Daw Khin is the vice-president of Twilight Villa (See Sar Yeik), a nursing home in Myanmar which takes in abandoned sick elderly citizens whom other homes turn away. This horrifying episode is just one example of why she is so dedicated to helping this group.

Cases of seniors being left abandoned by families near markets, railway stations and even cemeteries are on the rise. “These grandpas and grandmas at our nursing home have been cast aside at hospitals and under bridges like rubbish,” she said with heat.

(LINK: Poverty forces families in Myanmar to ditch their elderly)

Twilight Villa is tucked in a quiet corner surrounded by thatch and bamboo houses, an hour’s drive from downtown Yangon.

It started out with just eight senior citizens housed in a one-storey building in 2010, but today, it operates out of a modern four-storey building that includes an intensive care floor, courtesy of generous donors.

The home currently has capacity for about 70 people, but there are 50 more on the waiting list. It takes in only those over 70 years of age who are ailing and without any traceable family.


Daw Khin is among a small but growing number of individuals and local non-profit organisations that have stepped forward to help the sick elderly who are in the last years or even months of life.

They have no training in nursing nor geriatrics, driven only by their passion to provide this group with dignified end-of-life care.

Daw Khin, a criminal lawyer by profession, co-founded Twilight Villa along with local philanthropist and award-winning writer Daw Than Myint Aung in 2010, after they found that nursing homes were unwilling to accept the sick elderly.

She said that some of these seniors are referred to them by the police, and they have little memory of their identities.

“Sometimes in the pocket of their jacket, there would be a note with just their name and age, such as Daw Pu, age 80. That’s all. When we ask them more, they can’t remember anything else,” she said.

Photos of volunteers with the residents at Twilight Villa.

Daw Khin fumed at how some caregivers go to great lengths to abandon these seniors – even using different modes of transport to ensure that they can’t find their way home.

“They might be transported in a car, then a trishaw, and then by ferry to the other side of the river where they’re abandoned,” she said.

Some are dumped because they had suffered a stroke or some mental illness. “When we ask them where they live, they would say, ‘a market is near my house, and I have little grandchildren’. If they could remember more details, we would surely send them back,” she said.

Then there are those like 87-year-old Daw Kyi Kyi, who was referred to the home after her husband and two sisters died. She has no children.

She wakes at 5am every day and spends her time praying and meditating. The company of friends and the staff at the home help to relieve any loneliness.  “I am happy here,” she said. “I can live peacefully; it’s like living in heaven with all my friends.”


Like Twilight Villa, the group Save The Aged focuses on the sick elderly who have nowhere else to go.

It was started by a group of 15 young, public-spirited volunteers who were so moved by their plight, they took to the Internet and social media to rally help for them.

So successful were they that – for a country with a low Internet penetration rate – they managed to raise enough funds solely through social media to open a nursing home in 2015.

Save The Aged volunteers Hnin Hnin and Phyo Thiri

Volunteer and accountant Daw Phyo Thiri said: “There were other organisations such as Save the Children but there were none that looked after the elderly. We were inspired to create a group to help those that we had met.”

They started out by repairing the homes of these old folks and helping them with expenses such as for food and medicine, as well as conveying them to the hospital when they were sick. They had no donors initially, and most of their expenses were borne by the volunteers.

With no physical office, they communicated via WhatsApp and social media, posting pictures and videos of their activities on Facebook. As their digital presence grew, they managed to get donations and more volunteers, especially among the young.

Save the Aged currently provides care and accommodation to around 25 homeless elderly, all aged above 65.

Resident Daw Kyi Kyi Khin, 85, was living alone and surviving on occasional donations when some Save The Aged volunteers brought her to the home.

She said: “Now I live peacefully here and I have nothing to worry about. They treat us like their own parents or grandparents.”


However, funding continues to be an issue for these NGOs – a problem made even more acute in a poor country like Myanmar.

Daw Phyo said Save The Aged would like to do more but is limited by the lack of resources. The NGO relies solely on donors, who include Myanmar nationals overseas in countries such as Singapore, South Korea and Australia.

When they were building the home, they had to pay for the construction in instalments – and at one stage, they ran out of funds. Thankfully, another appeal for funds online managed to raise enough to complete the project.

“We only have enough funds to run the day-to-day operations,” said Daw Phyo. “For the longer term, we would like to expand, to buy new land and build new homes. We would like to support the elderly even more, and we are looking for donors.”

Twilight Villa, too, relies mostly on public donations.

The government’s Social Welfare Department provides the organisation with 25,000,000 kyats (S$26,000) a year in subsidies but they can only use it to buy rice.

Daw Khin said she would prefer to have more flexibility with the subsidy, for medical supplies or to pay their employees.


But more than that, she would love to see the day when there is no more need for homes such as hers.

She cited the example of one home for the aged she knows of which – curiously enough – has no seniors living there.

The residents in that village in the state of Kachin have learnt to value and respect their elderly folks for the part they have played in society, and so everyone chips in to take care of them in their twilight years, she said.

“If a family is too poor to take care of an elderly person, they will bring that person to another family who will take care of him or her. The whole village takes care of the elderly. That’s why there is no old person in the home for the aged.

“This is excellent. We need this to be the situation in every family,” she said.

Complete Article HERE!

How to Live When You’re Dying

Embrace the idea of death for a better life.

By Wesley Baines


It’s a concept that few wish to dwell on, but one that will eventually become a reality for each of us. For some of us, it comes rushing up sooner than we’d like, and suddenly the hands of the clock are moved up to five minutes till midnight. For others, the hands move at their normal pace, but our minds linger on what those final moments will hold.

The truth is that we are all dying. Every last one of us. But by learning to accept death, by allowing the ticking clock to drive us to greater heights rather than to deeper despair, we can truly live. And in choosing to live in the face of death, we not only improve the time we have left, but also set an example for others so that they might do the same.

Whether you’ve recently found your own clock unexpectedly moved forward or if you simply find your eventual end more discomforting than you’d like, there are lessons to learn here that will make the remainder of your life not mere a series of days, but beautifully alive.

Accept and Acknowledge

As a culture, we don’t like to talk about death—it’s one of our staunchest taboos. But the problem with this is that we don’t deal with it. We pretend it doesn’t exist, that the clock isn’t ticking at all.

And so because we don’t deal with death in a meaningful way, we become divided into two camps—those who are paralyzed by the fear of death, and those who feel it will never happen to them. Both views are mistakes.

Those who are terrified of death are limited by it. They are confined to what is safe, and live lives of mental agony. Those who feel invincible, on the other hand, lack the motivation that only an awareness of our limited time can bring.

But when we embrace death, when we acknowledge it by openly talking about it, and when we can accept that it is inevitable, we can make use of it. It can be our friend.

When Steve Jobs gave his 2005 Stanford commencement speech, he told the students: “No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent.”

He went on, saying “Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.”

Dealing with your own impermanence is painful. It means making yourself vulnerable and open. It means intentionally processing things you’d rather tuck beneath the rug. But when you do, when you accept and acknowledge, you can move past the fear of, or indifference toward, death, and in doing so, you may just find life for the first time.

Be Kind to Yourself

Learning how to live in the face of death means learning to love yourself. It means you learning to be kind to you.

This means several things. First, it means, as Jobs said, avoiding the idea that you have something to lose—forgive yourself for any perceived failures. The burdens you place upon yourself, the weights you pile onto your shoulders—take them off. They’re not a big deal.

This doesn’t mean shirking your responsibilities toward those you love and care about. It doesn’t mean that you don’t work to make the world a better place. This simply means that you don’t carry these things as a weight. You don’t constantly berate yourself for not attending to them well enough.

You do your best and move on.

If you have a habit of being unkind to yourself, tapping into the awareness of death is an empowering tool that can help you forgive yourself. And once you forgive yourself and let go of your fears of imperfection and underachievement, you’ll have so much more room in your life for the things that truly matter.

Perspective and Priorities

Considering the reality of death brings perspective. It helps us see what is truly important.

What matters to you? Is it your family? Is it your web of relationships? Are you committed to a cause? Are you bent on creating something beautiful with your life? Are you spiritual or religious? What deserves your time?

Likewise, what are you doing that is wasting your time—for many, the thought of death brings this to mind first. Are you working overly long hours or spending time with people who don’t truly value you? Are you obsessed with the future at the cost of living in the moment?

Once you’ve acknowledged death as a part of life, you can use this to drive you trim the fat and focus on what’s really important to you. It forces you to examine your life, and like Socrates once suggested, the examined life is the one worth living.

In an interview with the Guardian, Holly Webber, a British woman diagnosed with terminal cancer, has this to say about how her perspective has changed since her diagnosis.

“Sometimes I feel like I’m on another planet looking in on this one. I can’t relate to people stressing about work or getting the Tube. People are so wound up, but it’s such a waste of time and energy. Chill out! I hope that by reading this, someone out there will take a second to think, ‘I’m glad that’s not me. Maybe I should worry less about the things that don’t really matter.’”

Allow death to grant you perspective on your priorities, and you’ll gain the life you truly want.

A New Life From Death

You’ve heard the old cliché, “Carpe diem,” which is Latin for “Seize the day”. This phrase is the essence of what death has to teach us. Be present. Live in the moment. Love the people in your life with all your heart and mind and soul.

Because in a hundred years, those business reports will be dust. Your money will be gone. Your fears and burdens won’t matter.

And that should make you feel free, not fearful.

So be open to the idea of death. Talk about it without fear or denial. Use it to shed your woes and gain a better perspective on your priorities.

Above all, use death to live. It’s one of the best things you can do for yourself, as well as for those who love you.

Complete Article HERE!

At the End of Life, a Way to Go Gentle


[W]hile confronting the prospect of death, people like me — grappling with a diagnosis of advanced cancer — often consider what sort of care they want and how to say goodbye. Given the delicate negotiations in which the dying need to engage, do intensive care physicians with their draconian interventions act like proverbial bulls in a china shop? My fear of pointless end-of-life treatments, performed while I was in no condition to reject them, escalated when I read Dr. Jessica Nutik Zitter’s book, “Extreme Measures: Finding a Better Path to the End of Life.”

Dr. Jessica Nutik Zitter

Dr. Zitter confronts the sort of scenario that haunts me because she works in specialties that are sometimes seen as contradictory: pulmonary/critical care and palliative care.

In her new book, she refers to the usual intensive care unit approach as the “end-of-life conveyor belt.” She argues that palliative care methods should be used to slow down and derail the typical destructive I.C.U. approach that often torments people it cannot heal.

Over the past few years, quite a few studies have indicated that physicians are less likely than the general population to receive intensive care before death. Many doctors choose a do-not-resuscitate status. Dr. Zitter highlights the insight upon which her colleagues base their end-of-life decisions.

According to Dr. Zitter, even what are intended to be temporary intensive care measures can put a patient on that conveyor belt to anguish and isolation. She writes of breathing machines, feeding tubes, cardiac resuscitation, catheters, dialysis and a miserable existence prolonged within long-term acute care facilities. In an account of the evolution of her own ideas about doctoring, she also explains why it remains so difficult to change intensive care units so they can better serve the terminally ill.

“Extreme Measures” analyzes a complex cluster of suspect but ingrained attitudes that bolster hyperaggressive methods. Medical training fosters a heroic model of saving lives at any cost. American can-do optimism assumes all problems can and should be solved. Both doctors and patients tend to subscribe to a “more is better” philosophy. If technology exists, surely it should be used. Physicians’ fears of litigation plays a part, as do patients’ fantasies of perpetual life. For too many, death remains unthinkable and unspeakable.

One of Dr. Zitter’s compelling patient narratives teaches a clear-cut lesson. It involves an 800-pound man “too large to fit into the CT scanner,” but “too unstable to be transported to the nearby zoo’s CT scanner.” Surgery would therefore be impossible. The patient, a 39-year-old she calls Charles, is bleeding from his intestinal tract, his heart is exhibiting erratic behavior, his kidneys have failed and his liver is foundering. Yet he and his relatives want the doctors “to do everything.”

Although Dr. Zitter tries to explain to Charles and his family that chest compressions would break his ribs and electric shocks would burn his skin, they insist on “a full-court-press resuscitation attempt when he died.” To Dr. Zitter, “Running a code on this dying man felt… akin to punching him in the face and would probably have had the same utility.” Honoring his wishes would require breaking the oath: “First, do no harm.”

Other case histories in “Extreme Measures” are more troubling because their moral implications are less obvious. After a dramatic brain bleed from a major clot, a 45-year-old she calls George faces an operation that cannot return him to who he had been. His wife wants to know what Dr. Zitter would do if he were her husband. She explains that her husband would accept paralysis if he could remain communicative with her and their children at home.

Although Dr. Zitter fears that the surgeons who operated on George never broached the topic of his quality of life after surgery, she is heartened upon his return to the I.C.U.: He gives a thumbs-up. “What if, as a result of our talk, his wife had not consented to the surgery? Would I have been his unwitting killer?” This moment of self-doubt is followed by another turn of the screw. When Dr. Zitter later phones George’s wife, she says: “I am a single mother, but with another angry child.”

“Extreme Measures” includes a number of stories that explore the difficulties of talking about the subject of death with dysfunctional families, wracked by depression or feuds, and across racial, religious and ethnic divides. Often and to her credit, Dr. Zitter finds herself baffled, unsure of how to balance cultural priorities, human needs and medical possibilities. Throughout, she struggles personally and professionally to redefine common responses to terminal conditions.

In place of hope for recovery, Dr. Zitter emphasizes “the miracle of time at home, of pain management, of improved quality of life. These are all concepts I have seen families embrace in place of survival — the only concept of hope previously imagined.” And to people refusing “to play God” by withdrawing a breathing tube, she asks whether “they were playing God by keeping [a relative] alive when her body was actively dying.”

For readers who wish to avoid the end-of-life conveyor belt, Dr. Zitter concludes “Extreme Measures” with some practical advice on, for example, procuring a Physician Order for Life-Sustaining Treatment (POLST), a legal directive that emergency responders, paramedics and emergency room doctors are supposed to follow (but sometimes don’t, as Paula Span reported in The Times earlier this week).

Without this sort of documentation of end-of-life wishes, Dr. Zitter writes, a 90-year-old with metastasized prostate cancer ended up paralyzed and tethered to machines after cardiac arrests. “Our well-intentioned resuscitative efforts had crushed his cancer-weakened neck bones, rendering him quadriplegic.”

Passionately and poignantly, Dr. Zitter reminds us that “conveyor belts, regardless of their destination, are not meant for human beings.” Sometimes less is more.

Complete Article HERE!

Doctors who can’t communicate bad news are technicians, not true physicians

By Jessica Zitter

[I] am a doctor who loves to use technology. But I also understand its limits. As an intensive care physician, I have great respect for the tools I have been trained to use. They have helped me rescue people from the jaws of death. But these tools can do more harm than good when used without first having an honest communication about what they can’t do.

Take Linda. She was born with a defective heart valve, which was replaced when she was in her 50s. She had a pacemaker implanted at the same time. But an errant pacemaker wire chafed the delicate replacement valve, which slowly began to build up scar tissue. It was a subtle undoing, not enough to be obvious but enough to cause increasingly serious health problems. Her heart problems were compounded by kidney failure and a recurring buildup of fluid in her lungs. She became increasingly fatigued and bedbound.

Linda’s poor medical status made a second valve replacement operation very risky. Her cardiologist recommended that she go across the country to a highly respected medical center in the Midwest that specializes in such procedures. Its cardiac surgeons were considered the “A” team for managing problem valves.

Linda’s husband, John, a civil engineer, was confident that reshaping Linda’s valve would restore the rest of her body to health. It would just take cool heads, some design thinking, and the steady hands and expertise of these spectacular surgeons. John possessed the education, resilience, and ingenuity to overcome most obstacles and, when it came to saving his wife’s life, he would spare no effort.

John hit the ground running, inserting himself into the medical team with confidence. He was pleasant but persistent, unafraid to ask questions or express opinions.

The operation was successful, but Linda encountered several severe complications afterward. The doctors included John in conversations about these complications as they cropped up, and even solicited his preferences regarding next steps for her. They continued to discuss with him the minutiae of her physiology and listen to his opinions on which drug or nutritional formula to consider next. There was always another treatment, another high-tech intervention to try.

But the one thing the doctors didn’t offer was the larger truth. Linda was dying. Enlarging blood clots, bleeding deep within her abdomen, the inability to breathe without the support of a machine, profound and progressive weakness, and the deficits of her sick liver: This was an avalanche no “A” team could prevent.

In the third month after the operation, Linda’s suffering growing by the day, John reached out to me through a mutual friend. I listened to his exhausted voice on the phone. It was clear that he was broken and overwhelmed, but he was still struggling to fight each of Linda’s medical problems. While John knew about every medical treatment available, he was blind to the fact that his wife was dying. Even as her body was breaking down in painful and gruesome ways, even as she asked him to let her die, he felt that it was his duty to keep fighting for her life.

All of Linda’s specialists had, no doubt, wanted to do their best for her and for John. But they were unable to say the words that this suffering man needed to hear. There was no outright incompetence, no obvious neglect or laziness, no ill intention — only doctors, the best of the best, extremely smart and eager to help, providing the world-class, organ-focused care they had been taught to provide.

At my suggestion, John asked to talk with a palliative care specialist. Palliative care is a relatively new subspecialty in medicine which focuses on caring for the whole patient instead of just the failing organ. To do this, its practitioners are highly trained in the management of all symptoms that come with serious illness, as well as the communication skills required to share important information about prognosis and treatment options that other doctors often avoid.

Although palliative care has been proven to benefit seriously ill patients in intensive care units, Linda’s team hadn’t offered her this option. With the support of a palliative care doctor, John acknowledged that it was time to honor Linda’s request to be disconnected from the machines that were keeping her alive. She died shortly afterward. But the trauma of Linda’s prolonged dying process left John with a sense of failure, profound pain, and a grief so complicated it would take years to unravel.

Specialists with cutting-edge technical skills and the technology to support them are indeed a type of “A” team. But they often lack a different crucial skill, one I believe all doctors should hone: the ability to communicate bad news. Without that they are an “A” team of technicians, not physicians in the truest sense.

A true physician, to my mind, tends to the whole patient, not just her organs, and cares for the human behind the disease. Unfortunately, Linda and John’s experience was another manifestation of how our system often treats patients who are dying, focusing on cure rather than care, and chasing fantasy even when cure is not an option.

We physicians must come out from behind our machines and high-tech treatments and do something that can be more difficult than replace a heart valve: talk with our patients and their family members about what is really going on. We owe patients this essential information so they can understand the range of options, and their limits. Each of us — physician, patient, and family member — must look carefully at our collective tendency to celebrate technology and to assume that more is always better.

Complete Article HERE!

Inferior End of Life Care for Ethnic-Minority Patients With Ovarian Cancer

Study findings show that “important disparities in use of end-of-life care persist among racial and ethnic minorities.”


[A]frican-American and Hispanic patients with ovarian cancer in Texas were more likely than Caucasian patients to suffer invasive or toxic treatment and to be admitted to the ICU in their final month of life, according to a study published in the Journal of Clinical Oncology.1

“We found being a minority was associated with receiving intensive and invasive end-of-life care among patients with ovarian cancer,” reported lead study author Jolyn S. Taylor, MD, MPH, of the University of Texas MD Anderson Cancer Center in Houston, and colleagues. “Irrespective of other sociodemographic factors, patients of black or Hispanic racial and ethnic backgrounds were less likely to meet end-of-life quality-care metrics.”

The authors analyzed data from the Texas Cancer Registry and Medicare to assess the treatments administered to 3666 patients with ovarian cancer who died between 2000 and 2012. Seventy-seven percent of the patients were Caucasian, 15% were Hispanic, and 7% were African-American. (One percent of patients were classified as “other.”) Only patients who had received 13 months of Medicare coverage before death were included in the analysis.

Most (72%) patients had been enrolled in hospice but only 64% were still enrolled when they died, the study team noted. Median enrollment was 20 days.

“In the final 30 days of life, 381 (10%) had more than one ER visit, 505 (14%) more than one hospital admission, 593 (16%) ICU admission, 848 (23%) invasive care, and 418 (11%) life-extending care,” the authors reported.

Ten percent (357 patients) received chemotherapy during the final 2 weeks of life.

Ethnic and racial disparities in end-of-life care remained statistically significant in multivariate analyses adjusting for year and age at death, tumor stage, comorbidity index, income and education level, and location of residence. Race and ethnicity correlated more strongly with outcomes than income, education, or geography.

“Several outcomes differed for minorities compared to white patients,” the authors concluded. “Hispanic and black patients were less likely to enroll and die in hospice (black odds ratio [OR] 0.66; 95% CI: 0.50-0.88; P = .004; Hispanic OR 0.76; 95% CI: 0.61-0.94; P = .01.”

Hispanic patients were also more frequently admitted to the ICU (OR 1.37; 95% CI: 1.05-1.78; P = .02), while African-American patients more frequently received multiple ER visits or underwent life-extending procedures (ORs 2.20 and 2.13, respectively; P < .001 for each).

The findings show that “important disparities in use of end-of-life care persist among racial and ethnic minorities,” the authors concluded.

Complete Article HERE!

10 Comedians Who Make Grief Funny – Part 2

6. Shalewa Sharpe

I was pretty upset at the world after my mom died. One day at work, a customer complained about me not moving fast enough and I was ready to cuss him out, but my manager said, “Stay calm. Your mother would have wanted you to stay calm.” Um, how the hell did my manager know what my mother would have wanted? My mother once yelled at a stranger for chewing with his mouth open—at Thanksgiving dinner at a shelter. Pretty sure she would have wanted me to slap that customer upside the head and say, “Is that fast enough for you?”

Another NYC-based comedian, Shalewa Sharpe “developed her sly yet goofy style in Atlanta where she was raised,” according to her website. For more insightful, intimate observations, you should check out her album, Stay Eating Cookies.

7. Jenn Welch

“Ugh, it’s been three weeks since my dad died, how am I still single?!”

Jenn Welch was the subject of a recent Washington Post story headlined, “This comedian’s dad died last month. So she added that in her Tinder profile.” Yes, she really did that. In the article, Welch explains that her intent was not to make fun of those that responded: “The joke’s not on the men who respond to her, Welch said. Rather, she’s the punchline. ‘The joke of it is to be that brutally honest about where I am and what I’m going through,’ she said.”

Curious to see what kind of responses she got? We all are. She’s done us all a favor and made an Instagram account where she posts screenshots of her various exchanges. Here are two of my personal favorites:

Of Welch’s peculiar approach to grieving, the Post observed how social media helped her connect with other people in her shoes: “Welch did draw inspiration from social media—specifically from her friend and fellow comedian Ben Wasserman, whose father passed away from cancer two weeks before Welch’s did. “We’ve kind of been grieving together,” Welch said. “He went to town on Facebook with jokes about it… That made me feel more comfortable about being open about what I’m going through as well.”

8. Ben Wasserman

“how bout an all-female reboot of MY DAD”

The joke above is one example of the many statuses that Ben Wasserman has posted on Facebook since his father’s death. Welch wasn’t exaggerating when she said he “went to town”—I can attest to this, being that I am his Facebook friend. A few of his other memorable takes, reacting to Daylight Savings Time and Rachel Maddow’s tax return story, include “oh great first i lose my dad now i lose AN HOUR??” and “wake me up when Rachel Maddow gets a DAD return.”

9. Pete Davidson

“Justin, you know, I lost my dad on 9/11 and I always regretted growing up without a dad. Until I met your dad, Justin. Now I’m glad mine’s dead.”

SNL’s Pete Davidson has been open about his father’s death, on 9/11, throughout his career as a comic. The joke above is hardly about grief, but it was just too good not to include. You should really watch the video, his delivery is on point. Plus, he’s got a phenomenal follow-up joke that I don’t want to spoil for you.

10. Alison Zeidman

“My mom’s single. By default, because my dad died. Yeah… he literally ghosted on her.”

Alison Zeidman is currently a writer for TruTV’s Adam Ruins Everything. She wrote this gem of a joke about her dad, who passed away in 2014. Like others on this list, Zeidman took to social media to express herself at the time. And like Alyssa Limperis, she wrote a satirical article about the grief she was experiencing; A Father’s Day Sale for the Recently Deceased Dad. Both comics have appeared on Calogero’s podcast, which you can listen to right here.

Look for Part 1 HERE!