Frederic Raphael - On death and the passage of time

Frederic Raphael is the Oscar-winning screenwriter of "Darling," "Two for the Road," and "The Glittering Prizes".

Doctors should let dying patients make their own decisions - The Washington Post

“Don’t you want to do everything to save your dad?” one doctor asked me. Yes, I loved my father. But he, my mother and I also knew that glioblastoma is invariably fatal. Doing everything was not the only choice.

The next day my dad kept saying that he wanted a “minimally invasive approach,” that he did not want chemo and radiation. He said this to anyone who would listen, but no one seemed to be listening. Instead, he was already scheduled for surgery. When the surgeon finally arrived the night before surgery, we stood in the bustling hall outside my father’s room. I looked up at the imposing doctor, screwed up my courage and asked: “How long will he live without surgery and how long with surgery?” His reply: “Simple. Eight weeks without surgery and eight months with surgery.” ....

This was all exactly what my dad wanted to avoid: pain from surgery, nausea from chemotherapy, the bother of going back and forth to the hospital for care. He preferred eight weeks of being with his family over eight months of disability and unpleasant treatments.

After my dad elected not to have surgery, it felt as if the hospital threw him out. “There is nothing we can do for him,” somebody said as they showed us the door. I am pretty sure the person was a social worker — one who made me feel as though I did not love my dad because I was not doing everything to extend his life.

Once home, however, my dad had six great weeks. He felt fine, and his friends and relatives spent weekends with him. We laughed over old photo albums. He retained enough brain capacity to impart some life wisdom to me....The hardest part about my father’s care was getting his doctors to listen to what he wanted. A bad prognosis doesn’t mean that aggressive treatment involving pain and suffering is the only solution. Most patients don’t know that, because it is easier for a doctor to deliver a message of hope. It is easier for patients and loved ones not to ask the hard questions.

Doctors should let dying patients make their own decisions - The Washington Post:

Tennyson: Love and Grief

Love grasps grief to keep them both from drowning. Tennyson

A Surfer Chooses to End His Life in Peace

Dr. Bob Uslander: “I’m held in this light, as the person who stepped in to give them this final gift."

On the afternoon of October 23rd, in the presence of his family, trailblazing San Diego surfer Bill Andrews ingested medication prescribed to end his life. Within a few minutes the 73-year-old had fallen asleep, and over the next quarter hour his breathing slowed, gradually, until it stopped altogether.

Andrews is often credited as the first to surf the celebrated waves of La Jolla’s Black’s Beach, and a photograph of him doing so appeared on a 1965 cover of Surfer magazine. By all accounts, Bill Andrews enjoyed a vigorous life as an action sports enthusiast, entrepreneur, engineer, photographer, father, and grandfather.

However, in 2016 he was diagnosed with amyotrophic lateral sclerosis, more commonly known as ALS, or Lou Gehrig’s disease. The neurodegenerative disorder destroys nerve cells....Facing paralysis and suffering in the imminent future, Andrews chose instead to schedule the end of his own life, with the assistance of a physician.

After decades of controversy and public debate, the legal ability to do so has been available in California since mid-2016. Advocates have used several names to describe it: physician assisted suicide, medical aid in dying, death with dignity, the right to die.

Whatever the terms used, the California Department of Public Health reports 191 people acquired prescriptions to end their lives in the last seven months of 2016. At least 111 are confirmed to have taken the medication and perished.

...

First of all, the patient must be deemed of sound mind, and not expected to survive a specified illness for more than six months. The patient must first make an oral request for life-ending care to his or her attending physician — alone; that is, without any loved ones or caregivers present to exert influence or duress. The physician must make the patient aware of all alternative treatment options, including hospice care. After a mandatory 15-day waiting period, a second oral request must be made under the same conditions, followed by a written request, signed in the presence of two witnesses.

The patient must also consult with a second physician to confirm the terminal diagnosis, and independently corroborate the patient’s mental state. Due to the soundness-of-mind requirement, Alzheimer’s patients or anyone affected by dementia are disqualified.

Once the medication is secured, a patient must ingest it him- or herself. The preferred prescription, used by Bill Andrews, is for a controlled overdose of the barbiturate seconal, a powerful sleeping agent. One hundred capsules are prepared into a liquid solution for the patient to drink.

A doctor cannot pour it down a patient’s throat, nor a family member. In some cases, the end of life option may boil down to whether a person can suck the medication down a straw and swallow it. At any time, even at the last moment, a patient may simply decide not to take the medication, choose to take it later, or simply keep the medication on hand while allowing a disease to take its course.

A few days prior to taking his fatal last drink, Bill Andrews frankly discussed his illness, and his decision to die on a podcast recorded by his doctor. “Just a year and a half ago I was in Peru surfing,” he said from inside his room at a San Marcos assisted living facility. By contrast, he characterized his present-day life as “horrible” and sedentary. “I get fed. I wear diapers. I’m kind of confined to my bed.”

With the support of his family, he planned how his death would go. “The thing that’s the most incredible thing to me,” Andrews said, “is being able to choose when you’re going to die… I’m choosing the time. I’m choosing the place. I’m choosing the environment. I’m choosing the company. And for me…” he added, “I can’t think of anything better.”

...

The doctor assisting Bill Andrews with his death was Bob Uslander, known to his patients as Dr. Bob.

BBC RemArc - how our archives can help people with dementia - BBC R&D

"Triggering intact memories and stimulating conversations about them can improve the relationship between people with dementia and their families and carers, which in turn can improve the level of care they receive and their quality of life. A few years ago, we were approached by Dr. Norman Alm from the Computing department of the University Of Dundee.  Dr. Alm’s team had spent years researching how technology could be used to support people with dementia.  As Dr Alm explained the concept of reminiscence work and its benefits, we realised that the BBC’s archives could be put to good use in this area, if delivered through an appropriate medium. We agreed to work with Dr. Alm to design and build an online reminiscence archive, using material from the our archives. My team in BBC Archive Development wanted to achieve a number of things with RemArc. Firstly, and most importantly, to use archive material to benefit those of our audience members who have dementia, their families and their carers. We are confident that amongst the 1500 items from our archives that are available on RemArc, there will be something that triggers a reminiscence for everyone."

What did we learn from our test users?

Firstly, we learned that using archive material to trigger memories and reminiscences really does work. During the sessions many memories were triggered, sparking great reminiscences and conversations, and seemingly enhancing the relationships between people with dementia, others in the groups and their carers. It was also notable that a large number of people said that they remembered more about their past than they thought they would.

Secondly, we learned that the online, tablet based approach and the interaction design we used seems to work well for people with dementia. However, several improvements were suggested, which are outlined in more detail later in this blog.

Thirdly, we learned that reminiscence can be very enjoyable, engaging and, quite simply, fun. During most of the testing sessions, which were supposed to last around 20 minutes, I had to ask the groups to return the tablets after an hour, as they were so engaged with RemArc, and having so many great reminiscences!

BBC RemArc - how our archives can help people with dementia - BBC R&D

‘Death is not a failure’: Medical schools adapt end-of-life lessons | Boston Herald

"Local medical schools are in the process of a curricula revamp that will train students to focus more on end-of-life care, making Massachusetts the first in the nation to reach a statewide commitment to quality of life. ...It’s an important shift, he said, from the fix-it mentality that many doctors are taught to possess. He said the extent of his end-of-life training amounted to an hour of discussion in the first two years of medical school. “You go in focusing on wanting to be a hero and fix things,” Gawande said. “Teaching people in med school what it means to be an effective clinician for giving people cutting-edge care for quality of life — as opposed to quantity of life — is a neglected skill.” "

‘Death is not a failure’: Medical schools adapt end-of-life lessons | Boston Herald

Why undertakers are worried - Making the reaper cheaper

In North America the modern undertaker’s job is increasingly one of event-planning, says Sherri Tovell, an undertaker in Windsor, Canada. Among the requirements at her recent funerals have been a tiki hut, margaritas, karaoke and pizza delivery. Some people want to hire an officiant to lead a “life celebration”, others to shoot ashes into the skies with fireworks. Old-fashioned undertakers are hard put to find their place in such antics. Another trend—known as “direct cremation”—has no role for them at all. Besides having to offer more diverse services, the trade also faces increased competition in its products. Its roots are in carpentry. “You’d buy an expensive casket and the funeral would be included in the price,” remembers Dan Isard, a funeral consultant in Phoenix, Arizona. The unwritten agreement was that the dead would be treated with dignity and that families would not ask if there was an alternative to the $1,000 or $2,000 coffin, or whether embalming was really needed. The business has something in common with prostitution, reflects Dominic Akyel of the University of Cologne. It is legal (as prostitution is in some places) but taboo, “and certainly not to be discussed or haggled over”. The undertaker used to be able to rely on a steady stream of customers who asked few questions and of whom he (and it was usually a he) would ask few in return. Protestant or Catholic? Open coffin or closed? And, in some parts of the world, burial or cremation? A new generation of customers, though, no longer unthinkingly hands over its dead to the nearest funeral director. They are looking elsewhere, be it to a new breed of undertaker, to hotel chains that “do” funerals, or—for their coffin or urn—to Amazon or Walmart.

Why undertakers are worried - Making the reaper cheaper

27 Headstones That Defied Expectations - Atlas Obscura

"A grave marker is people will remember you long after everyone you know has passed, so you’d better make it good. When done well, it can provide a sense of one’s style in life. The epitaph should be pithy, the shape and style memorable. You could go for the classic granite slab, or, like these deceased, opt for something a little more memorable."  This article has some remarkable examples, including one with eleven statues, one of the grieving widower seated next to an empty chair, Jules Verne's grave with his own figure (the face from a death mask) breaking free of the ground), and one shaped like a circus tent in memory of performers who died in a train accident.

27 Headstones That Defied Expectations - Atlas Obscura

Remembering When Americans Picnicked in Cemeteries - Gastro Obscura

Within the iron-wrought walls of American cemeteries—beneath the shade of oak trees and tombs’ stoic penumbras—you could say many people “rest in peace.” However, not so long ago, people of the still-breathing sort gathered in graveyards to rest, and dine, in peace. During the 19th century, and especially in its later years, snacking in cemeteries happened across the United States. It wasn’t just apple-munching alongside the winding avenues of graveyards. Since many municipalities still lacked proper recreational areas, many people had full-blown picnics in their local cemeteries. The tombstone-laden fields were the closest things, then, to modern-day public parks....Death was a constant visitor for many families, and in cemeteries, people could “talk” and break bread with family and friends, both living and deceased...Death was a constant visitor for many families, and in cemeteries, people could “talk” and break bread with family and friends, both living and deceased. “We are going to keep Thanksgivin’ with our father as [though he] was live and hearty this day last year,” explained a young man, in 1884, on why his family—mother, brothers, sisters—chose to eat in the cemetery. “We’ve brought somethin’ to eat and a spirit-lamp to boil coffee.”

Remembering When Americans Picnicked in Cemeteries - Gastro Obscura:

Barbara Bush in Palliative Care

The Bush family sets an example for us all with this graceful statement about the former First Lady's decision to stop medical treatment and rely on palliative care.

Baby Boomers Reach the End of Their To-Do List - The New York Times

"The postwar hope and determination of our Depression-era parents was piled upon us, the fossil fuel of earlier generations we burned up without a care. We had a preposterously long sense of our own youthfulness. But now the boomers are approaching the other side. Not death necessarily (though the time has begun when no one will say we were cut down too early). We’re reaching the other side of striving."

Opinion | Baby Boomers Reach the End of Their To-Do List - The New York Times

Yoko Sen: What’s the last sound you want to hear before you die?

Dementia as a Process of Death | Psychology Today

"First we will close down recent memories
 Make it easier to detach
 I am worried, will it change me?
 Yes. You are dying. You will no longer be."

Dementia as a Process of Death | Psychology Today:

Barbara Ehrenreich: Why I'm Giving Up on Preventative Care | Literary Hub

"Once I realized I was old enough to die, I decided that I was also old enough not to incur any more suffering, annoyance, or boredom in the pursuit of a longer life. I eat well, meaning I choose foods that taste good and that will stave off hunger for as long as possible, like protein, fiber, and fats. I exercise—not because it will make me live longer but because it feels good when I do. As for medical care: I will seek help for an urgent problem, but I am no longer interested in looking for problems that remain undetectable to me. Ideally, the determination of when one is old enough to die should be a personal decision, based on a judgment of the likely benefits, if any, of medical care and—just as important at a certain age—how we choose to spend the time that remains to us."


Barbara Ehrenreich: Why I'm Giving Up on Preventative Care | Literary Hub

The Mistake I Made With My Grieving Friend | HuffPost

I had totally failed my friend. I had wanted to comfort her, and instead, I’d made her feel worse. At that point, I still felt she misunderstood me. I thought she was in a fragile state and had lashed out at me unfairly when I was only trying to help.

But the truth is, she didn’t misunderstand me at all. She understood what was happening perhaps better than I did. When she began to share her raw emotions, I felt uncomfortable. I didn’t know what to say, so I defaulted to a subject with which I was comfortable: myself.

I may have been trying to empathize, at least on a conscious level, but what I really did was draw focus away from her anguish and turn the attention to me. She wanted to talk to me about her father, to tell me about the kind of man he was, so I could fully appreciate the magnitude of her loss. Instead, I asked her to stop for a moment and listen to my story about my dad’s tragic death.

From that day forward, I started to notice how often I responded to stories of loss and struggle with stories of my own experiences. My son would tell me about clashing with a kid in Boy Scouts, and I would talk about a girl I fell out with in college. When a co-worker got laid off, I told her about how much I struggled to find a job after I had been laid off years earlier. But when I began to pay a little more attention to how people responded to my attempts to empathize, I realized the effect of sharing my experiences was never as I intended. What all of these people needed was for me to hear them and acknowledge what they were going through. Instead, I forced them to listen to me and acknowledge me.

Sociologist Charles Derber describes this tendency to insert oneself into a conversation as “conversational narcissism.” It’s the desire to take over a conversation, to do most of the talking and to turn the focus of the exchange to yourself. It is often subtle and unconscious. Derber writes that conversational narcissism “is the key manifestation of the dominant attention-getting psychology in America. It occurs in informal conversations among friends, family and co-workers. The profusion of popular literature about listening and the etiquette of managing those who talk constantly about themselves suggests its pervasiveness in everyday life.” Derber describes two kinds of responses in conversations: a shift response and a support response. The first shifts attention back to yourself, and the second supports the other person’s comment. Here is a simple illustration:

Shift Response
Mary: I’m so busy right now.
Tim: Me too. I’m totally overwhelmed.

Support Response
Mary: I’m so busy right now.
Tim: Why? What do you have to get done?

Here’s another example:

Shift Response
Karen: I need new shoes.
Mark: Me too. These things are falling apart.

Support Response
Karen: I need new shoes.
Mark: Oh yeah? What kind are you thinking about?


The Mistake I Made With My Grieving Friend | HuffPost

Death by Design's Kimberly Paul on the Death Elephant in the Room

My late husband once interviewed Trump for a golf magazine, and to process my grief, I went looking for the tape.

"It’s very strange to feel angry at someone who has died. It seems unkind. Grief has felt so draining and passive, but anger is a kick. Why in the hell did my perfectly healthy husband get cancer and leave us alone? There are so many ways he could have hurt us, but dying? I’m in a rage at him for missing our daughter’s high school graduation by five days. Really? I’m in a rage at him for missing that she majored in English just like he did. I’m in a rage at him for missing that our son now runs cross-country in college just like he did. "

My late husband once interviewed Trump for a golf magazine, and to process my grief, I went looking for the tape.

Kodachrome With Ed Harris and Jason Sudeikis

An estranged father and son make a pilgrimage to the last place that can develop some photos taken on film in his movie based on a true story.

Acknowledging Our Grief Anniversaries

"As only those who mourn the loss of someone they love deeply understand, sunny Saturday mornings have never been the same for me. They are now a Grief Anniversary; a perpetual, involuntary holiday where my heart marks its injury over and over and over again without me getting a say in the matter. Since that terrible day there has rarely been a Saturday morning regardless of what I’ve been in the middle of, when I have not found myself reliving it in some way, my mind jarred from its routine to momentarily eulogize my father once again. I wish it was the only such occasion, as I could probably handle feeling this horrible once a week, but that’s not how this works."

Acknowledging Our Grief Anniversaries

Kimberly Gladman Jackson's Poem on Mourning Her Father

I felt my father’s death in aisle six
His favorite ice cream stared me in the eye
He’s gone, the freezer whispered, you can’t fix
The pain between you. It’s too late to try

He isn’t eating thickly buttered toast
Or watching Mets play baseball on TV
Not reading headlines in the New York Post
Not cursed or blessed by any thoughts of me.

His socks and gloves and belt are empty, left
His hammer’s still, his nails, his roofing truck
And I, his child, estranged, heartsore, bereft
Remember him and wonder how the fuck
It’s possible that he does not exist:
This man so deeply feared, and loved, and missed.

For more of Kimberly Gladman Jackson's work, see Materfamilias

All That Remains: Why I Haven't Laid My Daughter To Rest - Still Standing

"Maybe someday, we will choose a spot where she can stay. Or perhaps we will bring her with us when we leave this Earth.  It is a decision we are not yet ready for and we may never be. But, I do know this: wherever her remains end up, she will forever live on in the hearts of those who love and remember her."


All That Remains: Why I Haven't Laid My Daughter To Rest - Still Standing

This is How I Want to Die -- John Pavlovitz

John Pavolvitz says he wants to be as alive as possible until the end.  An excerpt:

Death is usually like that; it arrives as a rude interruption—leaving work undone, conversations unresolved, plans unfinished, dreams unfulfilled. It rarely lets you wait until you’re fully ready to go. Death leaves permanent ellipses where we’d have placed periods. We will all be in the middle of something, of many somethings, when we are taken from here to hereafter. As much as I can, I want to be prepared. Given this, I’ve been thinking a lot lately about how I want to die:   

I want to die helping people; being a place of refuge and rest and encouragement for those who find far too little of it here. 

I want to die giving a damn about more than me; pushing past the selfishness and apathy that so many seem afflicted with, that I am so prone to defaulting to. 

I want to die being a dissenting voice of kindness; letting the harried, exhausted, beleaguered people around me know that they are worth more than the world often tells them. 

I want to die seeing and hearing; having my eyes and ears turned toward the invisible and the unheard, knowing that some people spend their whole lives in the shadows.
I want to die speaking love; using my words to bring healing, to cultivate hope, to confront enmity, to warmly embrace those pushed to the periphery of this life. 

I want to die laughing; releasing a combustible joy that explodes from deep within my belly and gives life to someone else. 

I want to die feeling deeply; caring more than I should, loving lavishly, being moved by the beauty hidden in the ordinary that too many people miss. 

I want to die being clear; about what matters to me, about the world I wanted to build—and clear to the people I love so that they never doubt it after I’m gone. 

I want to die believing; in the goodness of people, in our shared humanity, in the stuff that makes us the same, in the mystery outside of my senses, of the wonder that this life deserves. 

I want to die reaching; straining toward meaning and purpose—and a better version of myself than I was yesterday. 

And if this is how I want to die, it’s also the way I need to live—so that when death does come, I’ll be in the middle of something redemptive and beautiful and worth spending those last moments doing—I’ll be in the middle of really living. 

This is How I Want to Die

Real Life Can Be Raw, in Marriage and Death - The New York Times

 “Romeo and Juliet never had to grow older together or put their kids through college,” said Ms. Mead-Armor, now 67, in a phone interview from her home in Waynesboro, Va., on the southern fork of the Shenandoah River. “Juliet never went through menopause. You don’t live happily ever after.”

Real Life Can Be Raw, in Marriage and Death - The New York Times:

How to Speak Grief - The New York Times

 "Grief has a language all its own, but even the best therapists can get tongue-tied around the tricky stuff. Our grief vocabulary isn’t clinical, and you probably won’t find it in the self-help books that friends hand you after the memorial service. But this does come from some hard-earned experience: We both lost parents as young adults. Loss is messy, melancholic and often darkly hilarious. It also lingers forever. Here’s a glossary that takes all that into account. Use it well."

How to Speak Grief - The New York Times

A widow’s food guide to grief - The Washington Post

"There are food guides for everything: the patisseries of Paris, Philly B.Y.O.B.s, farmers markets of California, even cat cafes around the world. But when my husband died a few years ago, and I lost my appetite and my ability to eat in a restaurant without sobbing, I realized there are none for the time when you need the most guidance: bereavement."

A widow’s food guide to grief - The Washington Post