Friday, August 25, 2017

Every Third Thought by Robert McCrum review – how to think about death | Books | The Guardian

Is stoicism the best way to cope with the “miasma of melancholy” (Nora Ephron’s phrase) that can shroud the declining years? William Hazlitt thought so: since there has already been, for each of us, “a time when we were not”, and this “gives us no concern”, why be afraid of death? Julian Barnes saw off such arguments in his book Nothing to Be Frightened Of, as did Larkin in his poem “Aubade”.  
McCrum is more patient with those who find reasons to be cheerful. “If you have religion,” Sally Vickers (a Christian) says, “it gives the drama of death a place in the theatre of things.” As to ageing, Adam Phillips argues that “Every stage of the life cycle is interesting”, and there are “more possibilities when we are 70”.  
Denial is another coping mechanism (William Empson considered death a topic “people should be prepared to be blank upon”). It doesn’t let you off the grave but may ease your passing. When McCrum visits a friend who is dying from leukaemia, he’s troubled by his deluded talk of recovery. But he accepts that it would be cruel to disenchant him. I had a similar experience with my father. Having been told the worst (inoperable cancer, just weeks to live), and having made sure I knew it too, he chose not to discuss it again.  
“The dying have a right to their decease,” McCrum says, though in the UK the law is stacked against them. What terrifies most of us is the prospect of dependency. We had it before, as infants, but have no memory of that; this time we’ll be conscious of it, with the knowledge that our dependency will only get worse. Interventions that prolong life can also impair it; as the neurosurgeon and author Marsh says, death is often a preferable outcome. McCrum himself hopes for a quick death, in his sleep; better that than a decade of incontinence in institutional care. Yes, the will to live persists, even in those with no quality of life. But if their brains were fully functional, would they choose to go on?

Every Third Thought by Robert McCrum review – how to think about death | Books | The Guardian:

The Sacred Silence of Visiting the Dying - The Manifest-Station

"Some dread spending time with a loved one who is dying or grieving because they don’t know what to say. So I say, say nothing. Enter the room. Enter into their day and let them know by a caress, a nod, a grin, or a tear, that you are there. And so are they."

The Sacred Silence of Visiting the Dying - The Manifest-Station

New Japanese augmented-reality service lets you meet with deceased loved ones at their graves | SoraNews24

The Japanese tombstone-engraving company Ryoshin Sekizai has released a new augmented-reality service that is sure to change lives… and deaths. They’re offering to set up a virtual “gravesite” for your deceased loved ones, where you can visit them as if they were really there.

New Japanese augmented-reality service lets you meet with deceased loved ones at their graves | SoraNews24:

Are You There, Dad? It’s Me, Alice - The New York Times

Jessie Glenn wrote about writing to her 10-year-old niece after her father, Glenn's brother, died by suicide.
But his email account lived on. I would leave it logged in and up on my computer on the tab to the left of my own email. (I still do.) He wasn’t getting many emails, mostly junk or notices from various lists he had been on — notifications from Alice’s school and alerts about lost neighborhood dogs. Then one day a new message popped up: “hi dad” I stared for a while at Alice’s message, so plaintive and weightless, without even the anchor of punctuation. I wondered if I should reply. I asked a therapist friend, who said: “Don’t answer as her father unless you ask Alice and she agrees to it.” It took me a few days to figure out how to ask Alice casually. During that time, I searched and read every email and text he had sent her. I studied his punctuation, his cadence, his vocabulary and his endearments. So many exclamation points. And then I texted her: “I’m on your dads email. can i write you from it?” She replied: “wait what? oh ok” “i guess i want to pretend,” I explained."

Are You There, Dad? It’s Me, Alice - The New York Times

Thursday, August 24, 2017

Makeup artist's magic helps cheer his mom after his brother's death - TODAY.com

A Hollywood makeup artist visits his mother in an assisted living home to make her feel glamorous and beautiful.

ABC Breaking News | Latest News Videos
"When you don't look like yourself, you don't feel like yourself, and your personality changes,'' he said. "When she's glammed back up, her personality shines." Christine, who suffers from mild dementia, has become a bit of a star and earned the nickname "Glams" since Quinn began livestreaming the makeup sessions on Facebook. "With the elderly, they can really start to become isolated when their friends move away or pass away,'' Quinn said. "The Facebook videos allow her to interact, and she loves it." Initially Quinn could only get away with putting some foundation and lipstick on his mother, but now he says she's open to brighter colors and more glamorous looks. "She gets a kick out of it now,'' he said. "Sometimes when people are on medication, it kind of squishes their personality. I tell the nurses, 'Give me 20 minutes with my mom to do her makeup, and you will see an entirely different person.'''

Makeup artist's magic helps cheer his mom after his brother's death - TODAY.com

Tuesday, August 22, 2017

Most hospices fare well in first public release of Medicare quality scores

"For the first time, Medicare officials Wednesday posted quality scores for some 3,800 hospice providers on its new website, Hospice Compare, aimed at helping people select hospice facilities for themselves or others. In a press briefing Wednesday, Kate Goodrich of the Centers for Medicare & Medicaid Services said the effort will provide a 'snapshot on the quality of care delivered by each provider' that will 'help consumers make informed decisions.' Scores for the vast majority of hospices were near the top end of the quality range — so good, in fact, that some observers questioned whether consumers will find the data useful for comparison shopping."

Most hospices fare well in first public release of Medicare quality scores

Sunday, August 20, 2017

Death Doula Diary: Working At The Bookends of Life

I'm so often asked what it's like working with death, both those who are aware they're nearing the end of days, accompanying them through their death vigil, and working with families caring for their own dead....Something almost magical happens for many who are dying. Once they get through the initial shock of a diagnosis, once they've processed where they are, and what this means, and made some decisions, and begun to get some of their ducks in a row, there is a shift...to something incredibly powerful.They nearly always reach this stage where more than anything, they want to squeeze every drop of living out of every day that remains. And doing this work? You get to be a part of that journey, a part of that beauty and magic and wonder. Yes, there's a bittersweet element to it, but oh, the sweet parts? Are so very sweet!And no, it isn't this way every time; it's far more likely to happen for clients who transitioned to or have a plan in place for palliative care. If they're yet fighting to survive, and if that fight involves an endless merry-go-round of treatment, they're likely caught up in that rig-a-ma-roll - and all too often folks aren't transitioned to palliative care when they should have been - but that will be a different diary entry, one all about cure versus care.But oh, when someone reaches this space; when they've come to terms with the reality of their mortality, and they're free to look at what remains, from a deeply authentic place? These folks are oftentimes some of the most fully present, deeply alive people you will ever encounter. Time and again I am told something like, "Cancer gave me a gift, a gift I wish I'd long ago been smart enough to realize I'd always had: It helped me realize what really matters. Oh, if only I'd realized this sooner. But at least I have now, and I'm going to make every last minute count."Being around these folks, yes, it can be bittersweet, yes, but oh, how beautiful it can be, and how glorious to engage so frequently with folks who are living from a place of such depth, such authenticity.





Death Doula Diary: Working At The Bookends of Life

Sunday, August 13, 2017

In Barbara Cook’s Final Days, Her Friends Came to Sing at Her Bedside - The New York Times

"In the days before Ms. Cook’s death on Tuesday, friends from her legendary career delivered a fitting farewell: More music. Vanessa Williams and Norm Lewis, who starred with Ms. Cook in the 2010 Broadway revue “Sondheim on Sondheim,” were among those who came by her Upper West Side apartment and sang to her. Josh Groban, Hugh Jackman, Audra McDonald, Kelli O’Hara and others sent audio and video recordings full of memories and melodies. "

In Barbara Cook’s Final Days, Her Friends Came to Sing at Her Bedside - The New York Times:

Friday, August 11, 2017

"Flunking" Hospice

To qualify for hospice care, two doctors must certify that a patient is expected to live no more than six months. But patient James B. Nelson discovered that sometimes the doctors are wrong.

"It was decided that I was not dying fast enough," he told Arizona Public Media in 2015. "And so, to put it most succinctly, I flunked the hospice program."

Nelson died a few months after giving that interview, but his situation isn't all that unusual.

Government reports show that the median rate of hospice patients discharged before death has climbed steadily since at least 2000, peaking in 2012 and 2013 at almost one patient in five, though more recently the percentage has declined somewhat. But the rate actually varies widely from one care organization to another. Some hospices discharge less than 2 percent of their patients prior to death, while others discharge more than 80 percent. Non-profits have lower rates of live discharge than for-profit hospices. Regionally, live discharge rates are highest in the South.

It's important to understand, though, that when patients are discharged from hospice, they don't necessarily go anywhere. Hospice agencies, whether they are independent or affiliated with an institution like a hospital, usually deliver services to patients in their homes.

1 in 5 hospice patients discharged

Thursday, August 10, 2017

A Smile at the End of Life

When a dying man wants new front teeth, what do you do?

I told Dr. Monaco we have a terminally ill patient who needs to eat and that cosmetically, replacing the front teeth would do a lot to lift his spirits. Dr. Monaco didn’t hesitate; he told me to bring Mr. Sacchetin in and that there would be no charge for his services. When I told Mr. Sacchetin, he was deeply moved.”
Rager’s husband came to the Center first thing that Tuesday morning to bring Sacchetin to his appointment. Monaco took the dental impression and fitted Sacchetin with a “flipper,” an appliance that is commonly used for patients who require something the same day, whether due to trauma or extraction. It was ready that afternoon.
“My heart really went out to him. As soon as I saw him, I knew it was the right thing to do,” said Monaco, who not only waived his fee but also covered the lab costs out of his own pocket. “I was eager to help out in any way I could for someone in need like that,” he added.
When he got his teeth back that afternoon, Sacchetin turned to Monaco with a huge smile of thanks and said, “Beautiful.”
Monaco said the experience nearly brought him to tears. “It really showed that human part of all of us that says ‘I want to leave this world with a smile, looking the best that I can.’ He was so happy when the flipper went right in with a perfect fit, and it was so important to me that he was happy.

A Smile at the End of Life

Monday, August 7, 2017

Rules for Social Media Posts on Death -- Let the Family Take the Lead

 "When someone dies  — whether suddenly or after a prolonged illness, via natural causes or an unnatural fate, a young person in their prime or an elderly person with more memories behind them than ahead — there is one universal truth : The ripples of people who are affected is vast and, at times, largely unknown to all other parties. A death is always a gut punch with varying degrees of force and a reminder of our own mortality. Most people are moved to express their love for the deceased by showing their support to the family and friends left behind....This isn’t breaking news, and you’re not trying to scoop TMZ. Listen, I know you’re hurt. Guess what? Me too. I know you’re shocked. Guess what? Me too. Your social media is an extension of who you are. I get it. You “need” to express your pain, acknowledge your relationship with the deceased, and pray for the family. Yes. However... Please give us a minute. We are shocked. We are heartbroken. Give the immediate family or circle a little time to handle the immediate and time-sensitive “business” related to death. In the minutes and early hours after someone passes away, social media is most likely the last thing on their minds....I caution you to wait and then wait a little longer before posting anything. This may seem trivial, silly, and not worth talking about, but I promise you it isn’t. If the person is married, let the spouse post first. If the person is “young” and single, let the partner, parents, or siblings post first. If the person is “old” and single, let the children post first. If you can’t identify the family/inner circle of the person, you probably shouldn’t be posting at all."

Please read this before you post another RIP on social media.:

Sunday, August 6, 2017

CONFESSIONS OF A FUNERAL DIRECTOR » 10 Pieces of Advice for Picking Up a Dead Body

"Never, ever rush the family.  I always tell the family, “You have as much time as you need.”  Permission is so key.  But word’s aren’t enough.  Your body language has to say the same thing.  So, if the family is waiting on a relative to arrive from an hour away, or if they just need an extra half an hour with the deceased, take a deep breath, relax, find a seat on the sofa, and let grief run its course."

CONFESSIONS OF A FUNERAL DIRECTOR » 10 Pieces of Advice for Picking Up a Dead Body

The doctors who assist in suicide on what it's like to end a life

Building a system for assisted death from scratch, Li found, was a daunting task. To protect doctors who wanted nothing to do with the practice, she created a specific MAID team for UHN: 18 people to do the assessments and 13 to do the procedure itself. When a patient requests a medically assisted death, the front line doctor alerts the team, which takes over the end-of-life process. Two doctors perform the assessments. A third performs the procedure.
Figuring out the best method for death was also complicated. In Oregon, where assisted death is legal, doctors can write patients a prescription for a lethal oral medication and then walk away. Canadian physicians were surprised to learn that the barbiturates used in that protocol weren’t available here. Instead, doctors and nurses deliver a series of drugs intravenously, a process that is far more intimate than writing a prescription. Assisted death, the polite euphemism used to describe the act, is really a misnomer. Doctors don’t “assist” in a death; they are the active agents. “We are doing euthanasia,” says Li. “We are actively ending a life. And it’s very new to us.”


The doctors who assist in suicide on what it's like to end a life

Saturday, August 5, 2017

Rural Doctor Launches Startup To Ease Pain Of Dying Patients : Shots - Health News : NPR

This is a great story about Dr. Michael Fratkin, who has developed an independently funded end of life practice.

"Fratkin is an internist and specialist in palliative medicine. He's the guy who comes in when the cancer doctors first deliver a serious diagnosis. He manages medications to control symptoms like pain, nausea and breathlessness. And he helps people manage their fears about dying, and make choices about what treatments they're willing — and not willing — to undergo."


Rural Doctor Launches Startup To Ease Pain Of Dying Patients : Shots - Health News : NPR

A woman’s dying wish was a milkshake. So a restaurant 3 states away made sure she got it. - The Washington Post

From her hospice bed in Arlington, Emily Pomeranz said she wanted two last things — a Cleveland Indians hat and a mocha milkshake from a restaurant back home in northeastern Ohio. Pomeranz, 50, was dying of pancreatic cancer, and an old friend, Sam Klein, wanted to make her wishes come true. The first was simple. The second would require some ingenuity. Klein said in a Facebook post this week that he contacted Tommy’s Restaurant in Cleveland Heights and inquired about a long-distance milkshake delivery. “’Yes. We will figure out a way to do this,’” Klein quoted the popular restaurant’s owner, Tommy Fello, as saying. Within days, Klein said, that mocha milkshake had made it some 375 miles, across several states, to Pomeranz’s bedside.


A woman’s dying wish was a milkshake. So a restaurant 3 states away made sure she got it. - The Washington Post

Friday, August 4, 2017

A Quaker Approach to Living with Dying

"My formative experience with regard to the Quaker way of dying was by accompanying a Friend through her decline and death. Her final illness, dying process, and death were Quaker community and meeting experiences. Her experience wasn’t a private or family-only affair. When she couldn’t come to meeting, small groups of Friends were dispatched to her home, hospital, or nursing facility to have meeting for worship with her. Friends from meeting stayed with her overnight in the hospital when she had to be on the breathing machine and was so uncomfortable and scared. She had a committee of trusted Friends who arranged for her practical needs when she was still able to live independently, including staying with her 24/7 when just home from the hospital and at times of extreme debility. These Friends helped with discernment regarding transition from independent living to a skilled nursing facility. In what turned out to be her final hospitalization, these Friends helped her discern her choice to decline heroic life-sustaining treatment and allow herself a natural death. Friends reflected with her about her desire for integrity and living in alignment with the testimonies, her beliefs about an afterlife. She was afforded the opportunity, though her Quaker way of living, to proceed to a Quaker way of dying. One First Day, as we knew death was approaching, our meeting of about 80 Friends decided to meet in a hospital conference room for worship. About halfway into the worship hour, a Friend came downstairs to announce our Friend’s death. It was a gathered meeting. Our Friend died the way she had lived."


A Quaker Approach to Living with Dying

Medicine has become a service industry, and it's making doctors unable to confront death | Seamus O'Mahony | Pulse | LinkedIn

"[Doctors] increasingly see themselves as service-providers, a role that does not encourage Difficult Conversations, or a willingness to be brave. Consumerism, fear of litigation and overregulation have conspired to create the customer-friendly doctor, who emerged when the doctor–patient relationship became recast in a quasi-commercial mould. This type of doctor, well trained in communication skills, eminently biddable, is not what Kieran Sweeney or Atul Gawande had in mind. Doctors, by the nature of their selection and training, are conformist, and the now dominant ethos of customer-friendliness has all but silenced other, dissenting, voices. There is now an insatiable appetite for medicine: for scans, for drugs, for tests, for screening. This appetite benefits many professional groups, industries and institutions. It is difficult to call ‘enough’, but a good doctor sometimes has to tell patients things they do not want to hear. Regrettably, it is much easier, in the middle of a busy clinic, to order another scan than to have the Difficult Conversation."


Medicine has become a service industry, and it's making doctors unable to confront death | Seamus O'Mahony | Pulse | LinkedIn:

Senate approves ‘Right to Try’ bill to allow terminally ill patients access to unapproved drugs - MarketWatch

"The U.S. Senate on Thursday approved a measure known as Right to Try, which would give terminally ill patients nearly automatic access to experimental drugs that haven’t yet been approved by the Food and Drug Administration. A similar bill has strong support in the House of Representatives and the overall concept has been endorsed by the White House, so the legislation seems likely to become law. "

Senate approves ‘Right to Try’ bill to allow terminally ill patients access to unapproved drugs - MarketWatch:

Senate approves ‘Right to Try’ bill to allow terminally ill patients access to unapproved drugs - MarketWatch

"The U.S. Senate on Thursday approved a measure known as Right to Try, which would give terminally ill patients nearly automatic access to experimental drugs that haven’t yet been approved by the Food and Drug Administration. A similar bill has strong support in the House of Representatives and the overall concept has been endorsed by the White House, so the legislation seems likely to become law. "

Senate approves ‘Right to Try’ bill to allow terminally ill patients access to unapproved drugs - MarketWatch:

Questions for Me About Dying | The New Yorker

Cory Taylor writes in the New Yorker:

In taking part in “You Can’t Ask That,” I wanted to do my bit to change things around, to win back some dignity for the dying, because I don’t think silence serves the interests of any of us. The questions, as it turned out, were unsurprising. Did I have a bucket list, had I considered suicide, had I become religious, was I scared, was there anything good about dying, did I have any regrets, did I believe in an afterlife, had I changed my priorities in life, was I unhappy or depressed, was I likely to take more risks given that I was dying anyway, what would I miss the most, how would I like to be remembered? These were the same questions I’d been asking myself ever since I was diagnosed with cancer, back in 2005. And my answers haven’t changed since then....Yes, I have considered suicide, and it remains a constant temptation. If the law in Australia permitted assisted dying I would be putting plans into place right now to take my own life. Once the day came, I’d invite my family and closest friends to come over and we’d have a farewell drink. I’d thank them all for everything they’ve done for me. I’d tell them how much I love them. I imagine there would be copious tears. I’d hope there would be some laughter. There would be music playing in the background, something from the soundtrack of my youth. And then, when the time was right, I’d say goodbye and take my medicine, knowing that the party would go on without me, that everyone would stay a while, talk some more, be there for each other for as long as they wished. As someone who knows my end is coming, I can’t think of a better way to go out. Nor can I fathom why this kind of humane and dignified death is outlawed....Yes, I’m scared, but not all the time. When I was first diagnosed, I was terrified. I had no idea that the body could turn against itself and incubate its own enemy. I had never been seriously ill in my life before; now suddenly I was face to face with my own mortality. There was a moment when I saw my body in the mirror as if for the first time. Overnight my own flesh had become alien to me, the saboteur of all my hopes and dreams. It was incomprehensible, and so frightening, I cried. “I can’t die,” I sobbed. “Not me. Not now.” But I’m used to dying now. It’s become ordinary and unremarkable, something everybody, without exception, does at one time or another. If I’m afraid of anything it’s of dying badly, of getting caught up in some process that prolongs my life unnecessarily.

Questions for Me About Dying | The New Yorker

Grief is Not a Competitive Sport -- But Sometimes It Feels That Way

Cheryl Strayd: "Your tragedy doesn’t obliterate her sorrow. Your experience doesn’t erase hers. "

Grief’s 7 Stages Don’t Include Envy and Resentment - The New York Times:

Thursday, August 3, 2017

Coping with a spouse who has advanced cancer, in this week’s Dear Prudie extra.

From a letter to Slate's Dear Prudence:

My wife of 30 years has stage 4 metastatic breast cancer that has invaded her spine. She lives in constant pain, using heavy narcotics (such as fentanyl and oxycodone) to get through the day. Although the cancer has spread to quite a few places in her bones, there is no cancer in any major organs....Am I a terrible person for just wanting this to be over? "


Coping with a spouse who has advanced cancer

Tuesday, August 1, 2017

On Closing the Apartment of my Grandparents of Blessed Memory 

by Robyn Sarah

And then I stood for the last time in that room.
The key was in my hand. I held my ground,
and listened to the quiet that was like a sound,
and saw how the long sun of winter afternoon
fell slantwise on the floorboards, making bloom
the grain in the blond wood. (All that they owned
was once contained here.) At the window moaned
a splinter of wind. I would be going soon.
I would be going soon; but first I stood,
hearing the years turn in that emptied place
whose fullness echoed. Whose familiar smell,
of a tranquil life, lived simply, clung like a mood
or a long-loved melody there. A lingering grace.
Then I locked up, and rang the janitor’s bell.