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Vocapedia > Life / Health > Death > The terminally ill

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Before I die: a day with the terminally ill | Death Land        G        14 November 2019

 

 

 

 

Before I die: a day with the terminally ill        Video        Death Land        The Guardian        14 November 2019

 

What does it feel like to know you’re dying?

 

In episode two of Death Land,

Leah Green meets people

who are facing up to the end of their lives.

 

She follows palliative care doctor Sunita Puri

as she helps her patients

come to terms with their own mortality

 

YouTube

https://www.youtube.com/
watch?v=aZdDXNmD9wk

 

 

 

 

 

 

 

 

 

 

 

 

 

 

USA > terminally ill        UK / USA

 

https://www.npr.org/2020/06/26/
883280686/for-hospice-physician-patient-care-means-walking-the-path-with-them

 

 

 

 

https://www.youtube.com/
watch?v=aZdDXNmD9wk - G - 14 November 2019

 

https://www.theguardian.com/lifeandstyle/video/2019/nov/14/
before-i-die-a-day-with-the-terminally-ill-death-land-video

 

 

 

 

https://www.npr.org/sections/health-shots/2018/02/08/
583774624/what-not-to-say-to-the-terminally-ill-everything-happens-for-a-reason

 

 

 

 

http://www.nytimes.com/2015/01/24/
your-money/death-doulas-help-the-terminally-ill-and-their-families-cope.html

 

 

 

 

 

 

 

the terminally ill        USA

 

http://www.nytimes.com/2015/03/23/
opinion/easing-death-for-the-terminally-ill.html

 

http://www.nytimes.com/2015/03/15/
opinion/sunday/offering-a-choice-to-the-terminally-ill.html

 

 

 

 

 

 

 

terminal cancer        USA

 

http://www.nytimes.com/2015/02/19/
opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html

 

 

 

 

 

 

 

terminal cases

 

 

 

 

 

 

 

 

 

Bequeathing

the Keys to Your Digital Afterlife

 

May 25, 2013

The New York Times

By ANNE EISENBERG

 

IT’S tough enough to write an ordinary will, deciding how to pass along worldly goods like your savings, your real estate and that treasured rocking chair from Aunt Martha in the living room.

But you may want to provide for your virtual goods, too. Who gets the photographs and the e-mail stored online, the contents of a Facebook account, or that digital sword won in an online game?

These things can be important to the people you leave behind.

“Digital assets have value, sometimes sentimental, and sometimes commercial, just like a boxful of jewelry,” said John M. Riccione, a lawyer at Aronberg Goldgehn Davis & Garmisa in Chicago. “There can be painful legal and emotional issues for relatives unless you decide how to handle your electronic possessions in your estate planning.”

Many services and programs have sprung up to help people prepare for what happens after their last login.

Google has a program called Inactive Account Manager, introduced in April, that lets those who use Google services decide exactly how they want to deal with the data they’ve stored online with the company — from Gmail and Picasa photo albums to publicly shared data like YouTube videos and blogs.

The process is straightforward. First go to google.com/settings/account. Then look for “account management” and then “control what happens to your account when you stop using Google.” Click on “Learn more and go to setup.” Then let Google know the people you want to be notified when the company deactivates the account; you’re allowed up to 10 names. You choose when you want Google to end your account — for example, after three, six or nine months of electronic silence (or even 12 months, if you’ve decided to take a yearlong trip down the Amazon).

Google has ways to make sure that your electronic pulse has really gone silent; it checks for traces of your online self, for example, by way of Android check-ins, Gmail activity and Web history. Then, a month before it pulls the plug, Google alerts you by text and e-mail, just in case you’re still there. If silence has indeed fallen, Google notifies your beneficiaries and provides links they can follow to download the photographs, videos, documents or other data left to them, said Nadja Blagojevic, a Google manager.

And if you just want to say goodbye to everything, with no bequests, you can instruct Google to delete all of the information in your account.

Naomi R. Cahn, a professor of law at George Washington University Law School in Washington, says Google’s new program is a step forward in digital estate planning. “People should carefully consider the fate of their online presences once they are no longer able to manage them,” she said.

Other companies may also be of help in planning your digital legacy. Many services offer online safe deposit boxes, for example, where you can stow away the passwords to e-mail accounts and other data. Accounts like this at SecureSafe, are free for up to 50 passwords, 10 megabytes of storage and one beneficiary, said Andreas Jacob, a co-founder. Accounts can be accessed from a browser, or from free iPhone, iPad and Android apps. The company also offers premium services for those who need a larger storage space, more passwords or more beneficiaries.

There is always your sock drawer or another physical repository to store a list of your user ID’s, should you be deterred from online lockboxes by fear of cyberattacks or the risk that computer servers that may not be there in a few decades, said Alexandra Gerson, a lawyer at Helsell Fetterman in Seattle.

“Make a private list of all your user names and passwords for all the accounts in which you have a digital presence, and make sure you update the list if you change login information” Ms. Gerson said. “Don’t put user names and passwords in your will, though, as it becomes a public record when you die.”

Make sure that your executor or personal representative understands the importance of preserving these digital assets, and knows how to find them, said Laura Hoexter, a lawyer at Helsell who also works on inheritance issues. “Preferably the person should be tech-savvy,” she said, and know about your online game accounts, your PayPal account, your online presence on photo storage sites, social media accounts and blogs, and even your online shopping accounts where your credit card information is stored so that the information can be deleted.

AFTER you die, an executor or agent can contact Facebook and other social media sites, establish his or her authority to administer the estate, and request the contents of the account.

“Most accounts won’t give you the user name and password, but they will release the contents of the account such as photographs and posts” to an executor, Ms. Hoexter said.

Transfer at death can depend on the company’s terms of service, copyright law and whether the file is encrypted in ways that limit the ability to freely copy and transfer it. Rights to digital contents bought on Google Play, for example, end upon the person’s death. “There is currently no way of assigning them to others after the user’s death,” Ms. Blagojevic said.

Encryption is a common constraint, but there are exceptions. Apple’s iTunes store, for example, has long removed its anti-copying restrictions on the songs sold there, and Ms. Gerson advises people to take advantage of this in their digital planning. “Get your music backed up on your computer,” she said.

Up to five computers can be authorized to play purchases made with one iTunes account, and a company support representative advises that users make sure that their heirs have access. At Kindle, too, family members with user ID information for the account can access the digital content.

Professor Cahn in Washington says the time to prepare for the digital hereafter is now, particularly if serious illness is a factor. “If someone is terminally ill,” she said, “in addition to getting emotional and financial issues in order, you need to get your Internet house in order.”

Bequeathing the Keys to Your Digital Afterlife,
NYT,
25.5.2013,
http://www.nytimes.com/2013/05/26/
technology/estate-planning-is-important-for-your-online-assets-too.html

 

 

 

 

 

You Are Going to Die

 

January 20, 2013

9:00 pm

The New York Times

By TIM KREIDER

 

My sister and I recently toured the retirement community where my mother has announced she'll be moving. I have been in some bleak clinical facilities for the elderly where not one person was compos mentis and I had to politely suppress the urge to flee, but this was nothing like that. It was a very cushy modern complex housed in what used to be a seminary, with individual condominiums with big kitchens and sun rooms, equipped with fancy restaurants, grills and snack bars, a fitness center, a concert hall, a library, an art room, a couple of beauty salons, a bank and an ornate chapel of Italian marble. You could walk from any building in the complex to another without ever going outside, through underground corridors and glass-enclosed walkways through the woods. Mom described it as "like a college dorm, except the boys aren't as good-looking." Nonetheless I spent much of my day trying not to cry.

At all times of major life crisis, friends and family will crowd around and press upon you the false emotions appropriate to the occasion. "That's so great!" everyone said of my mother's decision to move to an assisted-living facility. "It's really impressive that she decided to do that herself." They cited their own stories of 90-year-old parents grimly clinging to drafty dilapidated houses, refusing to move until forced out by strokes or broken hips. "You should be really relieved and grateful." "She'll be much happier there." The overbearing unanimity of this chorus suggests to me that its real purpose is less to reassure than to suppress, to deny the most obvious and natural emotion that attends this occasion, which is sadness.

My sadness is purely selfish, I know. My friends are right; this was all Mom's idea, she's looking forward to it, and she really will be happier there. But it also means losing the farm my father bought in 1976, where my sister and I grew up, where Dad died in 1991. We're losing our old phone number, the one we've had since the Ford administration, a number I know as well as my own middle name. However infrequently I go there, it is the place on earth that feels like home to me, the place I'll always have to go back to in case adulthood falls through. I hadn't realized, until I was forcibly divested of it, that I'd been harboring the idea that someday, when this whole crazy adventure was over, I would at some point be nine again, sitting around the dinner table with Mom and Dad and my sister. And beneath it all, even at age 45, there is the irrational, little-kid fear: Who's going to take care of me? I remember my mother telling me that when her own mother died, when Mom was in her 40s, her first thought was: I'm an orphan.

Plenty of people before me have lamented the way that we in industrialized countries regard our elderly as unproductive workers or obsolete products, and lock them away in institutions instead of taking them into our own homes out of devotion and duty. Most of these critiques are directed at the indifference and cruelty thus displayed to the elderly; what I wonder about is what it's doing to the rest of us.

Segregating the old and the sick enables a fantasy, as baseless as the fantasy of capitalism's endless expansion, of youth and health as eternal, in which old age can seem to be an inexplicably bad lifestyle choice, like eating junk food or buying a minivan, that you can avoid if you're well-educated or hip enough. So that when through absolutely no fault of your own your eyesight begins to blur and you can no longer eat whatever you want without consequence and the hangovers start lasting for days, you feel somehow ripped off, lied to. Aging feels grotesquely unfair. As if there ought to be someone to sue.

We don't see old or infirm people much in movies or on TV. We love explosive gory death onscreen, but we're not so enamored of the creeping, gray, incontinent kind. Aging and death are embarrassing medical conditions, like hemorrhoids or eczema, best kept out of sight. Survivors of serious illness or injuries have written that, once they were sick or disabled, they found themselves confined to a different world, a world of sick people, invisible to the rest of us. Denis Johnson writes in his novel "Jesus' Son": "You and I don't know about these diseases until we get them, in which case we also will be put out of sight."

My own father died at home, in what was once my childhood bedroom. He was, in this respect at least, a lucky man. Almost everyone dies in a hospital now, even though absolutely nobody wants to, because by the time we're dying all the decisions have been taken out of our hands by the well, and the well are without mercy. Of course we hospitalize the sick and the old for some good reasons (better care, pain relief), but I think we also segregate the elderly from the rest of society because we're afraid of them, as if age might be contagious. Which, it turns out, it is.

Because of all the stories we've absorbed, we vaguely imagine that our lives will take the shape of a narrative - the classic Aristotelian ramp diagram of gradual rising action (struggle and setbacks), climax (happy marriage, professional success), and a brief, cozy denoument (kicking back with family and friends, remembering the good times on a porch someplace pretty). But life is not shaped like a story; it's an elongate and flattened bell curve, with an attenuated, anticlimactic decline as long as its beginning. Friends have described seeing their parents lose their faculties one by one, in more or less the reverse order that their young children are acquiring them.

Another illusion we can't seem to relinquish, partly because large and moneyed industries thrive on sustaining it, is that with enough money and information we'll be able to control how we age and die. But one of the main aspects of aging is the loss of control. Even people with the money to arrange to age in comfort can die in agony and indignity, gabbling like infants, forgetting their own children, sans everything. Death is a lot like birth (which people also gird themselves for with books and courses and experts) - everyone's is different, some are relatively quick and painless and some are prolonged and traumatic, but they're all pretty messy and unpleasant and there's not a lot you can do to prepare yourself.

I'm not trying to romanticize the beauty of osteoporosis, the wisdom of Alzheimer's or the dignity of incontinence. More than one old person has ordered me, "Do not get old." They did not appear to be kidding. I'm not talking about Learning from the Invaluable Life Experience of Our Elders, or even suggesting we need to accept the inevitable with grace. I am all for raging against the dying of the light, and if they ever develop DNA rejuvenation or some other longevity technique I will personally claw, throttle and gouge my way through Warren Buffett, Rupert Murdoch and any number of other decrepit billionaires in order to be first in line.

But we don't have a choice. You are older at this moment than you've ever been before, and it's the youngest you're ever going to get. The mortality rate is holding at a scandalous 100 percent. Pretending death can be indefinitely evaded with hot yoga or a gluten-free diet or antioxidants or just by refusing to look is craven denial. "Facing it, always facing it, that's the way to get through," Conrad wrote in "Typhoon." "Face it." He was talking about more than storms. The sheltered prince Siddartha Gautama was supposedly set on the path to becoming the Buddha when he was out riding and happened to see an old man, a sick man and a dead man. Today he'd be spared the discomfiture, and the enlightenment, unless he were riding mass transit.

Just yesterday my mother sent me a poem she first read in college - Langston Hughes's "Mother to Son." She said she could still remember where she was, in her dorm room at Goshen College, when she came across it in her American Lit book. The title notwithstanding, it does not make for Hallmark-card copy. Life for me ain't been no crystal stair. It tells us that this life is not a story or an adventure or a journey of spiritual self-discovery; it's a slog. And it orders us to keep going, don't you dare give up, no matter what. Because I'm your mother, that's why.

 

Tim Kreider is the author of "We Learn Nothing,"

a collection of essays and cartoons.

His cartoon, "The Pain - When Will It End?"

has been collected in three books by Fantagraphics.

 

 

This post has been revised to reflect the following correction:

Correction: January 21, 2013

An earlier version of this article misspelled

Warren Buffett's surname.

You Are Going to Die,
NYT,
20.1.2013,
http://opinionator.blogs.nytimes.com/2013/01/20/
you-are-going-to-die/

 

 

 

 

 

And at the End,

All the Comforts of the Carlyle

 

October 22, 2008
The New York Times
By COREY KILGANNON

 

Marie-Dennett McDill loved the Carlyle Hotel.

She stayed there whenever she was in New York, and adored the regular entertainers like Bobby Short and Eartha Kitt at the Café Carlyle, and the pianist Loston Harris in the lively Bemelmans Bar. She loved the uniformed elevator men and bellmen and the family of longtime staff. She loved that Central Park was only a short block away.

So when Mrs. McDill, who grew up in society in Washington and was enjoying an outdoors life in South Woodstock, Vt., learned she had terminal cancer this summer, her family immediately booked her a suite on the eighth floor for an open-ended stay, but one they sadly knew would not be open-ended enough.

“The family came to me and said, ‘We want to check her in till the very end,’ ” said Alexandra E. Tscherne, director of residences at the Carlyle. “It was a unique request, one I’ve never had previously. They wanted her set up in one of her favorite places, and they didn’t know how long it would last.”

It lasted 10 weeks. Mrs. McDill died in her sleep in the Carlyle last Wednesday.

Mrs. McDill was youthful and full of energy at 71 and spent her days outdoors gardening and painting, so it was shocking to her three children when she learned at the beginning of August that she had a fast-spreading cancer.

“It wasn’t a fight for life anymore, but a matter of time,” said her son Thomas Gardner.

The family hired 24-hour hospice care, but Mrs. McDill, at least until the very end, was in sufficient mental and physical shape to enjoy her final stay at the Carlyle. The hotel, at Madison Avenue and 76th Street, is one of New York’s most luxurious, with a long list of celebrities, presidents and royalty who have stayed or lived there.

Even as she was dying, she would take walks in Central Park in the daytime, and in the evening sit in a back booth in Bemelmans Bar, looking at the whimsical illustrations of New York City on the wall by the artist Ludwig Bemelmans, best known for the Madeline children’s books, and listening to Mr. Harris play. She loved Cole Porter, and she would pass requests to the waiter.

The family hired Mr. Harris to play Mrs. McDill’s favorite songs at her memorial service at St. Bartholomew’s Church on Park Avenue on Saturday. It was a sophisticated, poignant and kick-up-your-heels affair, almost like something out of a Cole Porter song. Mr. Harris played “Just One of Those Things” and “I’ve Got You Under My Skin.”

Month-to-month suites at the Carlyle are always expensive, but less so during the summer months, when they cost about $17,000 a month.

“It wasn’t a search for extravagance, but a search for comfort. It wasn’t the inexpensive option, but it was the greatest comfort we could afford, so of course we would do that for her,” said Mr. Gardner, chief executive of the Motley Fool, a financial information company he founded with his brother, David Gardner.

Staffers helped her with chores related to her impending death, said Ms. Tscherne, who agreed to sign as a witness to Mrs. McDill’s will and even ran across the street to get a notary public.

The family hired two attendants from Brooklyn to care for Mrs. McDill: Rose Marie Moore and her sister Shirley Innis. In the evenings, Ms. Moore would sing spirituals for Mrs. McDill.

“She would put her head back and close her eyes and ask me to sing ‘Swing Low, Sweet Chariot.’ She’d say, ‘Give me the long version, Rose,’ ” said Ms. Moore, who took the subway from East New York to stay in the Carlyle with Mrs. McDill.

“It was like low class to high class, going in there,” she said. “I would call her my queen, my majesty, and she called me her princess, and treated me like one.”

Ms. Moore sang “Swing Low” again at the memorial service on Saturday, and family members recalled Mrs. McDill as hardly the demure society type, but more like a Katharine Hepburn character.

After graduating from Georgetown Visitation Preparatory School in Washington, she dreamed of art school, but wound up going to Manhattanville College in Purchase, N.Y., obeying the wishes of her father, H. Gabriel Murphy, part-owner of the Washington Senators baseball team, which later moved to Minnesota and became the Twins.

Mrs. McDill’s first husband was Paul Gardner Jr., a lawyer. After a divorce, she married Jonathan McDill, formerly in charge of cataloging for the Dartmouth libraries. He died in 1998. As a gardener, she took design cues from formal French and Italian gardens and added her own resourceful touches.

She loved the paintings of Henri Matisse and the writing of Mark Twain and Robert Frost. She sold a few paintings but gave away many more. She rarely bothered with computers or cooking.

“It was not that she could not cook, but that she did not,” David Gardner said.

After the memorial service, some of her friends said they were rethinking their own send-offs.

“People came up to me and said, ‘We’re changing our plans for our funeral — we want it to be fun,” Thomas Gardner said. “The only sad thing was that Mom wanted to keep living.”

    And at the End, All the Comforts of the Carlyle, NYT, 22.10.2008,
    http://www.nytimes.com/2008/10/22/nyregion/22carlyle.html

 

 

 

 

A living message

from the valley

of the shadow of death

 

23 July 2005

The Daily Telegraph

By Charles Moore

 

There has been a great deal of death in the news, so I apologise to readers for what might look like an entire column on the subject. In fact, though, it is about life.

In 1949, a Jew from the Warsaw ghetto, called David Tasma, lay dying of cancer in London. He had no family, but he was comforted by a tall, shy, young woman almoner (hospital social worker), who was more than half in love with him. He left her everything he had, which was £500, and told her that this would make "a window in your home".

In 1967, that home took the form of St Christopher's Hospice in Sydenham. There are now more than 200 hospices based on its model in Britain, and the hospice movement is active in more than 120 countries. The woman almoner was called Cicely Saunders.

She died last week, of a cancer from which she had suffered for several years, in the home that Tasma's bequest inspired. Dame Cicely has attracted admiring obituaries, of course, but I am not sure that people have quite noticed the scale of her achievement.

To the dying Tasma, Cicely recited the 23rd Psalm, the favourite for funerals. It says, "Yea, though I walk through the valley of the shadow of death, I will fear no evil." Almost all of us, when our time comes to take that walk, fear evil very much indeed. She observed this, and worked out how to minister to that fear.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Jas

 

A living message from the valley of the shadow of death

The Daily Telegraph

23 July 2005

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Dame Cicely's gift was to unite the physical with the spiritual. She started as a nurse and had to give that up because of back trouble and become an almoner. Then, in her thirties, she returned to school to become a doctor.

She was therefore an entire professional health care team in one. When she was a nurse during the war, she was horrified by how patients had to "earn their morphine" by exhibiting unmanageable levels of pain. Doctors shunned it, because of fear of addiction and because they thought it did not work by mouth.

In research which she began in the late 1950s, Cicely Saunders discovered that pain could be managed by oral drugs, and that if, in terminal cases, people were given strong analgesia before the onset of pain, they could be relieved with relatively small doses, and without addiction.

This was a purely medical discovery. But with it, she developed the concept of "total pain". She saw that people's suffering as they approached death might involve everything about their lives - their fear of extinction or punishment, their anxiety for the family they were leaving, their remorse, their sense of meaninglessness.

This was real pain, which heightened the physical agony, just as the physical agony heightened the other fears. Her answer was to listen to the dying, on the grounds that each death, like each life, was unique: "You matter because you are you, and you matter to the end of your life."

Common sense, you might say, common humanity. Yet it went against the prevailing medical view. When he set up the National Health Service, Aneurin Bevan declared that he would "rather be kept alive in the efficient if cold altruism of a large hospital than expire in a gush of sympathy in a small one".

That coldness was seen by many as a virtue in itself. Death was a form of inefficiency and, for a doctor, a sort of failure, since it could never be "cured". Dying was not part of the vision of the NHS. Recent evidence about what happens to old people in so many hospitals today (see Panorama's programme this week) suggests that it still isn't. This is a great moral, human disaster.

Dame Cicely understood that the "gush of sympathy" or, rather, the calm, steady flow of the stuff was just as much a part of the ministry of health (as opposed to the Ministry of Health) as was technical expertise. She sought "the match between heart and mind - research, training, understanding, had to be matched with the vulnerable friendship of the heart".

Almost as bad as sheer neglect of the dying was the belief - convenient for professionals, and also for those families who didn't want the difficult conversations - that the approach of death, particularly in the form of cancer, should be concealed from the patient because it was unbearable.

It wasn't the kindest thing to jolly people along, Dame Cicely thought: it was a failure to confront the truth, to acquire "the full understanding of what is happening". Again and again she found (and she went on personally ministering to the dying right into her seventies) that if people had the chance to work through their perplexities, they could face what was coming.

She particularly remembered one man who had been in great agony of mind, but had at last resolved it, about an hour before he died: "Suddenly he looked amused." Talk mattered a great deal, she believed, but so did silence, and she emphasised how important it was that people should have the right things to look upon - art by their beds, design that soothed, a chapel to pray in.

The phrase "being there for someone" is now a cliché of pop-psychology, but it means something, and Dame Cicely thought of it. She derived it from Jesus's request to his disciples in the Garden of Gethsemane the night before his death: "Watch with me" (an injunction which they disobeyed).

I did not know Cicely Saunders. I gather from people who did that she had the mental toughness which is to human goodness what physical fitness is to athletes. You and I read thrillers in the bath: she read spiritual classics.

She said that her favourite pastime was "a sacred cow shoot". She was formidable, could even be forbidding. She stared at you, unblinking. People who disagreed with her sometimes got short shrift. She fitted the Florence Nightingale, Mother Teresa model of fierce devotion to the great task.

But when she spoke of the "vulnerability of the heart", she knew what that meant, too. She had loved David Tasma, and it was his loss that inspired her. When doing her research into pain control at St Joseph's Hackney, she fell in love with a second Pole, who died there. She eventually married a third Pole, Marian Bohusz-Szyszko, an artist, who died in 1995. "Total pain" was something she had seen, had felt. People who watched her die testified that she had overcome it.

Because of demography and medical advance, there has never been a time in our civilisation when death has come so stealthily and so late to so many. Compared with our forebears, we are privileged. But as is often the case with the privileged, we are also frightened.

So we more and more seek euthanasia, which in turn only increases fear. We think that we can take some bypass which avoids the valley of the shadow of death. No, says Cicely Saunders: we're all on the same journey; let us make it together, to the very end.

Information appearing on telegraph.co.uk is the copyright of Telegraph Group Limited and must not be reproduced in any medium without licence.

A living message from the valley of the shadow of death,
DT,
23.7.2005,
http://www.telegraph.co.uk/opinion/main.jhtml
xml=/opinion/2005/07/23/do2301.xml&sSheet=/opinion/2005/07/23/ixopinion.html

 

 

 

 

 

 

 

 

 

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