Month: April 2016

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Contending With The Specter Of Death, 140 Characters At A Time

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Paul McLean: "So often Kate Granger’s tale of dying has become one of living, which may be her greatest gift."
Paul McLean: “So often Kate Granger’s tale of dying has become one of living, which may be her greatest gift.”

“Forget funeral selfies. What are the ethics of tweeting a terminal illness?”
— Headline in The Guardian, Jan. 7, 2014

I did not expect to still be writing about Kate Granger in the present tense. I thought she would be dead by now. If that sounds unfeeling, well, she thought she’d be dead, too. She said so in an email, and on Twitter. Many times.

Dr. Granger — “call me Kate” — was diagnosed with an aggressive sarcoma nearly five years ago. She began telling her story on Twitter in March 2012, to a smallish following. A while before the writer Emma Gilbey Keller and her husband, former New York Times editor Bill Keller, came under fire for stories questioning another terminal cancer patient’s use of Twitter to tell her story, Kate’s mortal tale had found a growing audience. Its present count: 42.3K.

Kate didn’t post for nearly a week after writing, “feeling very down after this morning’s clinic visit. Just feel there is no hope for me anymore.” A chill ran down approximately 42.3K spines.

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But not one of them really knows what to think. Following @GrangerKate has been a roller coaster ride and an emotional bait and switch. So often Kate’s tale of dying has become one of living, which may be her greatest gift. She is a marvel of revelation and self-motivation, and no small part of that has been her passion for being a medical doctor.

She wants to care for suffering humans. It is a profound calling. Her specialties are elder and palliative care, finding ways to somehow lessen the suffering. All while sharing her own.

Around the time Kate started telling her story on Twitter, the American physician Ken Murray published an influential essay about the difference in ways of dying between physicians and patients. More than their patients, Murray wrote, doctors know when to say when.

This seemed true of Kate. “Never again,” she would write in a letter to chemo. But then she’d change her mind. This happened more 005than once.

A newlywed when diagnosed, Kate wanted more time with her husband. A newly minted doctor, she wanted more time with patients. Another round of chemo allowed her meet the queen, to write another book, to hold her niece for the first time. She launched a national movement in England, a product less of her training as a physician than her experience as a patient.

Being a patient gave her a view she preferred not to have into an impersonal side of her profession, with rounding teams of doctors and medical students gathering at the bed of a person defined by a set of symptoms. This inspired Kate’s #hellomynameis name tag that has become something of a phenomenon throughout the National Health Service and elsewhere in the U.K.

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Scan the hashtag, or @PointonChris, the Twitter handle for Kate’s husband, Chris Pointon, and be amazed at the photos of who has adopted #Hellomynameis — pop stars Kylie Minogue and Peter Andre, Virgin founder and entrepreneur Richard Branson and British Prime Minister David Cameron, to name a few.

“I think you are right about productivity at the end of life,” Kate wrote in an email to me earlier this year. “I don’t have tomorrow so I have to do things today. When I’m having a bad day, then I tend to just push myself into action. I guess it all comes back to legacy for me. I want to make my mark on healthcare.

“Because of my illness, that is not going to be through a long, distinguished academic and clinical career; but it could be through improvement of culture and how we view patients now with the #hellomynameis campaign.”

The chemo ride consists of hopeful peaks and toxic depths, and more hopeful peaks if you’re lucky. Kate and her husband agreed that 004six months of good quality of life would be “worth it for suffering the distress of chemo,” as she put it in an email.

“I know full well there will come a time when we won’t achieve the six months good time (chemo is becoming less and less effective with each course) and my baseline fitness will be declining,” Kate wrote to me.

“Making a choice not to have treatment in that setting will obviously be very difficult, but I think because we have been open, honest and logical about it, hopefully it will be easier to communicate our choices to family and friends.”

To all 42.3K of them, in 140 characters or fewer.

Complete Article HERE!

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After her own tragic loss, WGN-TV reporter wants death to be a dinner discussion

randi-belisomo
WGN-TV reporter Randi Belisomo will host a “death over dinner” event at Barba Yianni Greek restaurant in Lincoln Square, where people can gather to ask questions and swap stories about approaching their final days.

By Heidi Stevens

If the two certainties in life are death and taxes, a close third is that no one wants to discuss either of them over dinner.

WGN-TV reporter Randi Belisomo is trying to change that — the death part, anyway.

Her husband, Chicago journalist Carlos Hernandez Gomez, died from colon cancer in 2010, and although the couple knew Hernandez Gomez’s cancer was incurable, they never discussed what to do if he had to be put on life support. When faced with that reality, Belisomo struggled to make the right decision.

She has spent the years since his death encouraging people to discuss end-of-life decisions while their loved ones are still alive and lucid. Along with Northwestern Memorial Hospital oncologist Mary Mulcahy, who treated Belisomo’s husband, she launched Life Matters Media, an initiative that offers resources and information to approach dying with dignity and a strategy.

“We come to this from a point of failure,” Belisomo told me. “Death was the elephant in the room that was never addressed, and it left me just shocked. I don’t regret any decisions that were made, but it would have been so much easier if we heard from him what he really wanted.”

On Saturday night, Belisomo will host a “death over dinner” event at Barba Yianni Greek restaurant in Lincoln Square, where people can gather to ask questions and swap stories about approaching their final days.

If you knew you were going to die in a month, what would you do? How can you plan ahead, so you can be present and surrounded by your loved ones when you’re dying? How do you want your life to end?

“End-of-life has become so medicated and such a series of interventions,” Belisomo said. “We talk about what’s the ideal scenario and how to support the wishes of those that you care about.”

The dinner series is part of a national effort spearheaded by The Conversation Project andDeath Over Dinner, two nonprofits made up of wellness and medical experts who guide people toward end-of-life discussions.

“Everyone is reluctant to start the conversation,” said Ellen Goodman, the Pulitzer Prize-winning journalist who co-founded The Conversation Project. “Middle-age children may be reluctant to have the conversation with their parents because they don’t want to suggest their parents are going to die. Elderly parents may be reluctant because they don’t want to worry their children.”

The conversations, though, become a gift — to both parties, she said. The person dying knows his or her wishes have been heard and will be respected. The survivors know what their loved one wanted and didn’t want.

And yet:

“There are these dynamics of reluctance,” Goodman said. “Because you’re letting death in the room.”

She experienced it firsthand, and she meets countless others who have too — from all generations and age ranges.

“My mom and I were people who talked about everything, except one thing: how she wanted to live at the end of her life,” Goodman said. “What I found to be true is when I tell people that, half a beat passes, and out pours a similar story.”

Some of those stories will be shared Saturday, when Belisomo will help her fellow diners honor loved ones they’ve lost and talk about their own wishes. This will be her fourth such event.

“People come alone who just want to explore the topic and learn how to talk about it in their own family,” she said. “We have couples who come. People talk about their own experiences. I hear these stories over and over again, and it’s not going away.

“The fact is we’re going to have to make decisions on other people’s behalf,” she continued. “And that’s a heck of a lot easier if you know the values and goals of that person.”

Complete Article HERE!

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Pet euthanasia: Better a week too early than a day too late?

By Pete Wedderburn

Pete Wedderburn's late dog, Spot
Pete Wedderburn’s late dog, Spot

This weekend saw the biggest annual global gathering of “companion animal” (pet) vets, which takes place in Birmingham every year. The BSAVA congress has 15 concurrent streams of lectures and practicals for eight hours a day, over five days. Vets need to do a minimum of 30 hours of continuing education per year: attendance at this conference allows a full quota to be obtained on one trip.

Diagnostics, medicine, surgery and therapeutics take up most of the lecture time but there’s also space for debate and discussion: one lecture on the ethics of choosing the right time for euthanasia caught my attention, partly because it brought back memories of euthanasing my own much-loved family pet, a dog called Spot.

Euthanasia: vets, owners and pets are involved

The lecture looked at the decision on euthanasia from three perspectives: the vet, the owner, and not least, the pet itself. The big question, of course, is “when is the right time to say goodbye”?

Vets

Vets are obliged to fulfil a vow, made on qualifying, to prevent animals from suffering: arguably we may be in a better position to assess quality of life objectively than an emotionally distraught owner. That said, vets cannot dictate the outcome of a situation: owners need to be brought along with the decision. If owners do not fully understand, and agree with, the decision, they may subsequently say “the vet forced me into it”.

Owners

For owners, there are often conflicting emotions. There may be intense grief at the prospect of losing a much loved family member, but there may also be a fear of allowing their pet to suffer by going on too long. In most cases, the decision making is made easier by the thought that they are fulfilling their responsibility of relieving their pet’s suffering.

Despite this, afterward, there is often guilt: the feeling that they have “murdered” a loved one, regret that they may have done it too soon, or (more commonly), that they may have left it too late, so that the pet suffered unnecessarily.

Pets

What about euthanasia from the pet’s perspective? Do animals experience fear or despair at the thought of dying? Can they anticipate impending death? Can they consider the concept of an extended life of deteriorating quality compared to a shorter life with less pain? Is it arrogant of us to assume that that elderly pets want to stay alive and remain in our company? While each of us may have strong views about these questions, there are no definitive answers.

Pete Wedderburn at his clinic
Pete Wedderburn at his clinic

The general assumption is that euthanasia provides instantaneous relief from pain and suffering, and that animals have no foreknowledge that it’s going to happen. It seems most likely that the experience involves peacefully falling asleep and then into death, without being aware that this is happening. Perhaps how most of us would like to end our days, and that’s why we find it so easy to justify euthanasing our pets.

Pet hospices

There is a growing end of life/ hospice care movement for pets, aiming to optimise end of life arrangements for pets. It’s come up with some useful tools, like the HHHHHMM Quality of Life Scale , which can help people reach the euthanasia decision more easily.  Euthanasia of pets is a collaborative decision, with human carers and veterinary staff (vets and nurses) working together to find the best answer.  For myself, and my 15-year-old dog Spot, I had to wear the hat of owner and vet at the same time. Spot made it easy for me: he had been gradually declining with doggy Alzheimer’s, and when he refused to eat for two days in a row, it was as if he was sending me a message. He was ready to go, and I was ready to help him.

Complete Article HERE!

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A new divide in American death

By Joel Achenbach, Dan Keating

Anne Case and her husband Angus Deaton, both Princeton University economists, published a study late last year that drew national attention to rising mortality among middle-aged whites.
Anne Case and her husband Angus Deaton, both Princeton University economists, published a study late last year that drew national attention to rising mortality among middle-aged whites.

White women have been dying prematurely at higher rates since the turn of this century, passing away in their 30s, 40s and 50s in a slow-motion crisis driven by decaying health in small-town America, according to an analysis of national health and mortality statistics by The Washington Post.

Among African Americans, Hispanics and even the oldest white Americans, death rates have continued to fall. But for white women in what should be the prime of their lives, death rates have spiked upward. In one of the hardest-hit groups – rural white women in their late 40s – the death rate has risen by 30 percent.

The Post’s analysis, which builds on academic research published last year, shows a clear divide in the health of urban and rural Americans, with the gap widening most dramatically among whites. The statistics reveal two Americas diverging, neither as healthy as it should be but one much sicker than the other.

In modern times, rising death rates are extremely rare and typically involve countries in upheaval, such as Russia immediately after the collapse of the Soviet Union. In affluent countries, people generally enjoy increasingly long lives, thanks to better cancer treatments; drugs that lower cholesterol and the risk of heart attacks; fewer fatal car accidents; and less violent crime.

But progress for middle-aged white Americans is lagging in many places – and has stopped entirely in smaller cities and towns and the vast open reaches of the country. The things that reduce the risk of death are now being overwhelmed by things that elevate it, including opioid abuse, heavy drinking, smoking and other self-destructive behaviors.

White men are also dying in midlife at unexpectedly high rates. But the most extreme changes in mortality have occurred among white women, who are far more likely than their grandmothers to be smokers, suffer from obesity or drink themselves to death.

White women still outlive white men and African Americans of both sexes. But for the generations of white women who have come of age since the 1960s, that health advantage appears to be evaporating.

This reversal may be fueling anger among white voters: The Post last month found a correlation between places with high white death rates and support for GOP presidential candidate Donald Trump.

Public health experts say the rising white death rate reflects a broader health crisis, one that has made the United States the least healthy affluent nation in the world over the past 20 years. The reason these early deaths are so conspicuous among white women, these experts say, is because in the past the members of this comparatively privileged group have been unlikely to die prematurely.

Laudy Aron, a researcher with the Urban Institute, said rising white death rates show that the United States’ slide in overall health is not being driven simply by poor health in historically impoverished communities.

“You can’t explain it away as, ‘It’s those people over there who are pulling us down,’ ” Aron said. “We’re all going down.”

For this article, The Post examined death records from the Centers for Disease Control and Prevention, breaking the information down geographically, county by county, by level of urbanization and by cause of death.

Big cities and their suburbs – metropolitan areas of more than 1 million people – looked strikingly different from the rest of the country. The Post divided these populations into urban and rural categories, with the rural population encompassing smaller cities as well as small towns and the most remote places.

Beverly Layman
Beverly Layman, 58, died in March from complications due to liver failure. Layman’s liver failed as the result of long-term use of alcohol, painkillers, anti-anxiety medications and illicit drugs. She died two weeks before her 59th birthday.
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Cold Food Festival and Qingming Festival (Tomb Sweeping Day)

By Sarah Elizabeth Troop

qingming1

How did an act of cannibalism transform into a national day for honoring  the dead?

As the legend goes, during China’s Spring and Autumn Period following a civil war, Prince Chong Er was forced into exile for 19-years. With him was his loyal minister, Jie. When the pair had run out of food and were starving, Jie cut the flesh from his own leg and made a leg soup from it to feed the Prince, taking loyalty to a whole new level.

When the hard times were over and the Prince became King, he rewarded all those who had remained loyal to him and totally overlooked the guy who CUT THE FLESH OFF HIS OWN LEG TO FEED HIM. Jie packed up his bags and disappeared into the wilderness, taking  his mom with him.

Someone finally confronted the King about his major oversight and feeling ashamed, he went off in search of Jie, but never found him. In result, some idiot suggested setting the entire wilderness on fire to smoke him and his moms out so, that’s just what the king does. Surprise! Still no Jie.

When the fire was extinguished poor, loyal Jie is found dead in the forest , underneath a willow tree, with his mother on his back. Inside the tree is a letter, written in blood from Jie, “Giving meat and heart to my lord, hoping my lord will always be upright. An invisible ghost under a willow tree is better than a loyal minister beside my lord.” Ouch…

In honor of Jie’s death, the King decreed that no fires could be lit on this day and created the Hanshi Festival or “Cold Food Festival,” since food could not be cooked.

Throughout China’s history the Cold Food Festival has been absorbed into the Tomb Sweeping Festival, which occurs on April 4 or 5th each year.

Qingming Festival2

Quingming or Tomb Sweeping Day in China is a day for honoring the dead. The day is reserved for visiting the graves of loved ones. At this time the graves are cleaned and tended to, favorite foods of the deceased are offered and the practice of burning paper goods, “joss paper,” in the form of money and luxury items is practiced. Joss paper has taken many forms in recent years, everything from McDonalds food to IPhones to the more traditional money, ensuring that the deceased is well provided for in the afterlife. It is reassuring to know there is no McDonalds in the afterlife, tho, amirite?

Qingming Festival3

Since the tradition of eating cold food remains a large part of the festival, qing tuan, sweet green rice balls, have been a traditional festival food for some 2,000 years. A  “green rice” dish is also common, containing a mixture of rice powder and green mugworts, stuffed with a sweet bean paste. Both dishes are common offerings to the dead.

Modern elements now include the recent crop of websites where busy families and professionals who cannot travel to the gravesite can choose from different “tomb sweeping packages.”  Professional mourners will go to your loved ones grave, clean and provide traditional offerings. Sobbing or weeping is extra.

Complete Article HERE!

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On Widower Watch

By ANN NEUMANN

On Widower Watch

He crossed the marbled lobby of his building, headed for the front door, leaning into his blue walker as if he were facing a gale-force wind. A golden starburst of drying urine ringed the front of his khaki pants. I thought we were meeting in his apartment, but one of us had the time wrong.

As a hospice volunteer for his late wife, I had traveled from my home in Brooklyn to the Upper West Side every Sunday for the last four years to spend time with them, adding more visits when they needed help with household tasks. When she died, I could hardly abandon him. We had, over the course of all our time together, become a kind of family.

Widowers are endangered beings, challenged by grief and its grim companions: loneliness, disorientation and a statistically high mortality rate. A 2012 study by a team at Rochester Institute of Technology showed that widowers are 30 percent more likely to die after the recent death of a spouse, compared to normal risks of mortality. The first six months after widowhood are the most challenging, but the effects of grief can last up to a decade.

At 90, the man I come to visit every week has a host of complicating ailments: He lives with a colostomy bag; his feet are permanently swollen and flaky with gout; he was given a diagnosis of prostate cancer more than a decade ago. It’s a slow growing cancer, and while he had treatment for it, he suspects that some of his current urination problems are a result. These health factors would be challenging enough on their own, but now they are compounded by profound grief.

It had been only eight weeks since he and I had watched his wife take her last breath on the sofa in their apartment upstairs. Her companionship — they had been married for 53 years — had long dictated his daily schedule; for years her illness required him to carry on with the duties of the household. With his wife gone, his routine gave way to a morass of unaccountability and unwelcome quiet.

It would be easy to be rebuffed by his stoical insistence that he’s fine, but his family and I have begun to track his emotional and physical wellness in a number of ways in the hope that we can forestall the typical effects of new widowhood. Which is why, as he and I stood in the lobby, I anxiously checked the time on my watch, vigilant for any indication that he was encountering psychological or physical difficulties.

He seemed a little confused about what day it was. Yet his thin white hair was neat; his sneakered steps deliberate and sure. His eyesight has been quickly fading over the past few years, but he continues to watch TV, and he is in charge of his hygiene and his schedule for all but four hours a day when his aide comes to cook his evening meal. Despite his soiled clothes, he seemed to be managing his activities of daily living (what gerontologists call A.D.L.s) successfully.

Social isolation is a risk many widowers face, compounded by solitary living. A Pew Research study reported in February showed that an increased number of men live alone: 18 percent, up from 15 percent in 1990. According to AARP, 90 percent of those over 65 wish to stay at home as long as possible.

Although his daughters call and visit frequently, they both live far away. Most of his friends are long dead and he is not a member of a synagogue or senior center, organizations that can often provide continuity and support to elder widowers. My weekly visits, and those of his niece and others, are important to ensure that he socializes.

Mobility can also be an inhibiting factor to maintaining social ties and physical health. Although he is still able to take the bus to doctors’ appointments across town, he tires easily. Some taxis can’t accommodate his walker, and his swollen feet and fading eyesight put him at risk for falling. The National Council on Aging notes that falls are the leading cause of fatal and nonfatal hospital admissions among the elderly. A misplaced step could lead to depression, feelings of helplessness and increased isolation during recovery. Still, it’s important to him that he remain independent as long as possible, which means he’s learning to balance mobility with safety.

Unlike many of his peers, my friend owns his home and has adequate finances to last until the end of his life, even if he increases the visiting hours of his home health aide. But in New York City alone, 20 percent of those over 65 live below the poverty line. Because the federal poverty rate is so low — $11,770 a year for a single person — many elderly people don’t qualify for the benefits they need, particularly in urban areas where housing and insurance rates can be higher.

According to a recent study by the University of California, Los Angeles’s Center for Health Policy Research, an increased number of senior citizens in California are experiencing “worse health, more depression and less access to care.” Because widowhood can decrease household income and other resources, those who have recently lost a spouse are particularly susceptible to this trend.

He will turn 91 this month. His older daughter is coming up from Virginia to host a party in his honor. I’ll pick up a cake, ordered by his younger daughter in Colorado, from his favorite bakery on the Upper East Side. We’ll drink champagne to toast his health, and we’ll miss his wife on this first birthday without her.

Marking family and personal occasions in this way has become increasingly important to all of us; these events intersect long, quiet weeks with laughter and company. And here’s the often unacknowledged benefit to keeping watch on a widower: With my grandparents dead and my friends all around my age, he diversifies my social life as much as I do his. He gives me a perspective on the city we live in that my peers simply don’t have. We spend our time together talking about our dissimilar lives and the things that matter to us, reminiscing about his many rich years, and looking up old poems in the vast library that lines the walls of his house. He is my friend and I miss him when I am away. As it turns out, nonagenarians are good company.

Complete Article HERE!