Photo-Essays of Death

Though it is nothing she would have wished for, in a relatively short time Nancy Borowick became an expert in photographing death.  Both of her parents had advanced cancer with poor prognoses and she chronicled their lives during their final years and months.

Borowick’s photo essays document a series of progressions toward death, taken by a professional photographer who knew what was coming.  These photos are moving and instructional.

See: A Mother's Illness, a daughter's Duty (NY Times, January 30, 2015) and Side by Side, Battling Cancer and Sending Off the Bride (October 18, 2015)

Photo from the Times Collection

In My Cat's Death, a Human Comfort

by Margo Rabb, NY Times, January 26, 2015

Ms. Rabb’s moving essay addresses a subject that has received press in the past, but she covers it sensitively and well.  It is a keeper.  She begins:

Recently, when I told a friend about my cat’s death from cancer, I found myself saying, “It was such a better experience than when my mom died!” I realized how crazy it sounded — I hadn’t meant to compare their deaths like accommodations on TripAdvisor — but it was true.

Full article
If you want or need a pdf see C2S Blog.

After the diagnosis in the vet’s office, a licensed social worker hugged me. She handed me tissues. We stayed in their office for nearly an hour.

PBS Frontline Program on Gawande's Being Mortal

Karen Gunderscheimer has alerted us to “a PBS (Frontline) MUST-SEE program on BEING MORTAL that features Atul Gawande.  It will be aired on February 10, WGBY, Channel 2 (in Massachusetts)"

Here is the trailer.

Parenting a Dying Child

When we had a child on the way, we said we were expecting. What we expected was a healthy, happy, “normal” baby. When our child was born, we never really stopped expecting. We expected him to crawl, walk, talk, do well in school, get a good job, find a nice spouse, bring us grandchildren, perhaps care for us as we age.

Once we learned my son Lucas’ diagnosis of Menkes syndrome, all those expectations went out the window. It was devastating. But it was also liberating. We had to learn that any disappointment we felt was due to comparing our new reality with our imagined future. It was never hard to see him as the wonderful, shining boy who was full of joy and laughter. What took a bit of work was changing our mindset away from the wonders (or terrors) of the future to the happiness in the here and now.

When we had a child on the way, we said we were expecting. What we expected was a healthy, happy, “normal” baby. When our child was born, we never really stopped expecting. We expected him to crawl, walk, talk, do well in school, get a good job, find a nice spouse, bring us grandchildren, perhaps care for us as we age.

Once we learned my son Lucas’ diagnosis of Menkes syndrome, all those expectations went out the window. It was devastating. But it was also liberating. We had to learn that any disappointment we felt was due to comparing our new reality with our imagined future. It was never hard to see him as the wonderful, shining boy who was full of joy and laughter. What took a bit of work was changing our mindset away from the wonders (or terrors) of the future to the happiness in the here and now.

Dane Wilson has forwarded a link to a blog post, How Parenting a Dying Child Changed All My Expectations by his friend, Daniel DeFabio.

"When we had a child on the way, we said we were expecting. What we expected was a healthy, happy, “normal” baby. When our child was born, we never really stopped expecting. We expected him to crawl, walk, talk, do well in school, get a good job, find a nice spouse, bring us grandchildren, perhaps care for us as we age.

Once we learned my son Lucas’ diagnosis of Menkes syndrome, all those expectations went out the window. It was devastating. But it was also liberating. We had to learn that any disappointment we felt was due to comparing our new reality with our imagined future. It was never hard to see him as the wonderful, shining boy who was full of joy and laughter. What took a bit of work was changing our mindset away from the wonders (or terrors) of the future to the happiness in the here and now."

Am I Dying?

Yu ‘Dolly’ Bai would like to draw your attention to “Am I Dying? An Honest Answer”  a 5 minute TED talk  by  Matthew O’Reilly, a veteran emergency medical technician. In this talk, O’Reilly describes what happens next when a gravely hurt patient asks him: “Am I going to die?”

Donny writes: “In addition to knowing how we want to die - how aggressively we want to pursue treatment, when to switch to hospice care - it may also be important to think about how an actively dying person assesses the value of our her life when time is very short.  O'Reilly speaks about the questions he has heard people ask themselves and him at the end.”

Death Doulas Out From the Shadows

The word doula, Greek for “woman who serves,” is usually associated with those who assist in childbirth. But increasingly, doulas are helping people with leaving the world as well.

Death doulas (aka end-of-life doulas, death midwives or simply companions) appear to have been functioning under the radar for some time.  A recent NYT’s article is a good introduction.  The topic has been explored in other sources, such as the Guardian in May 2014.

“Birth doulas support women and their families through the process of a child being born. And death doulas support people during that other huge event – the one we don't like to talk about. The idea is hardly new, but in the western world, death has become a medical matter, says Hermione Elliott, director of the charity Living Well Dying Well. The organization is pioneering the use of death doulas in the UK. "In other cultures around the globe, and for thousands of years, people have stayed in their homes to die, looked after by their family and local community. We want to see a return to this."

Doulas, Who Usher in New Life, Find Mission in Support for the Dying, NY Times, January 24, 2015

Death doulas: helping people face up to dying, The Guardian, May 4, 2014

Rebecca Green, UK death doula, from the Guardian

The Grim Reaper Stays Fit

Little Green Pill

by Madelyn D. Kamen

He was there every day,
Looking at her from the other side of the window,
Smiling at her as she handed over his little green pill.
He wasn’t that old and she wasn’t that young;
Neither had ever married.
She was a psychiatric nurse’s aide who understood the inmates
Because she had been abused as a child, pulling into herself
To avoid punishment.
He was there because he had been bullied as a little boy,
Making it a habit of staying away from the big guys who could
Beat him up.
Now, they were adults, albeit imperfect ones, who
Occasionally would sit together on her coffee breaks
And tell light-hearted jokes.  And forget their pain for a while.
Their shrink had suggested they might have a lot in common.
And truth be told, it had occurred to both of them.

One day, he was not at the window.
On her break she sought him out.
In his room, the bed was stripped.
His toiletries and clothes were gone.
Where was he, she wondered?
She asked the nurses.
They answered in soft voices with hooded eyes.
They said they didn’t know.
The next day in the obituary column she found his name.
She went to the funeral with the little cup and a pillbox in her purse.  After service was over, she pulled out the familiar little green pill, the one she had given him every day, and dropped it in the coffin.

Author Bio:  Madelyn D. Kamen, D.P.H. is a free-lance writer and the founder of a document development and management-consulting firm.  Prior to establishing this company, she was an associate dean and professor at the University of Texas Health Science Center at Houston. Kamen holds masters and doctorate degrees in public health. She has served on numerous boards in the community, particularly in the areas of women and children’s health and welfare.

No Worst, There is None

G.M. Hopkins sonnet that deals with grief.

No worst, there is none

No worst, there is none. Pitched past pitch of grief,

More pangs will, schooled at forepangs, wilder wring.

Comforter, where, where is your comforting?

Mary, mother of us, where is your relief?

My cries heave, herds-long; huddle in a main, a chief

Woe, wórld-sorrow; on an áge-old anvil wince and sing —

Then lull, then leave off. Fury had shrieked 'No ling-

ering! Let me be fell: force I must be brief."'

    O the mind, mind has mountains; cliffs of fall

Frightful, sheer, no-man-fathomed. Hold them cheap

May who ne'er hung there. Nor does long our small

Durance deal with that steep or deep. Here! creep,

Wretch, under a comfort serves in a whirlwind: all

Life death does end and each day dies with sleep.

Spring and Fall

By Gerard Manley Hopkins

to a young child

Márgarét, áre you gríeving

Over Goldengrove unleaving?

Leáves like the things of man, you

With your fresh thoughts care for, can you?

Ah! ás the heart grows older

It will come to such sights colder

By and by, nor spare a sigh

Though worlds of wanwood leafmeal lie;

And yet you wíll weep and know why.

Now no matter, child, the name:

Sórrow’s spríngs áre the same.

Nor mouth had, no nor mind, expressed

What heart heard of, ghost guessed:

It ís the blight man was born for,

It is Margaret you mourn for.

A Lion in Winter

“Fierce-eyed, 88 year-old Jerome Medalie has seen people close to him die lingering deaths from dementia and has already decided. His pithy motto is: ‘If I’m not me, I don’t want to be.’”

Mr. Medalie’s advanced directive also specifies something more unusual: If he develops Alzheimer’s disease or another form of dementia, he refuses “ordinary means of nutrition and hydration.”

“Some wonder if a directive to hasten death by withholding “ordinary means of nutrition and hydration” should apply to persons who can’t remember it.”

Paula Span’s article in the NY Times, Complexities of Choosing an End Game for Dementia, is worthy of thought and discussion.

"Had we both world enough and time" to discuss this...

Funeral In Her Brain

Emily Dickinson (1830 – 1886)

“The subject of death, including her own death, occurs throughout Emily Dickinson’s poems and letters. Although some find the preoccupation morbid, hers was not an unusual mindset for a time and place where religious attention focused on being prepared to die and where people died of illness and accident more prematurely than they do today. Nor was it an unusual concern for a sensitive young woman who lived fifteen years of her youth next door to the town cemetery.  Full quote.

I felt a Funeral, in my Brain

I felt a Funeral, in my Brain

And Mourners to and fro

Kept treading - treading - till it seemed

That Sense was breaking through -

And when they all were seated,

A Service, like a Drum -

Kept beating - beating - till I thought

My mind was going numb -

And then I heard them lift a Box

And creak across my Soul

With those same Boots of Lead, again,

Then Space - began to toll,

As all the Heavens were a Bell,

And Being, but an Ear,

And I, and Silence, some strange Race,

Wrecked, solitary, here -

And then a Plank in Reason, broke,

And I dropped down, and down -

And hit a World, at every plunge,

And Finished knowing - then -

Because I could not stop for Death

Because I could not stop for Death –

He kindly stopped for me – 

The Carriage held but just Ourselves – 

And Immortality.

We slowly drove – He knew no haste

And I had put away

My labor and my leisure too,

For His Civility –

We passed the School, where Children strove

At Recess – in the Ring – 

We passed the Fields of Gazing Grain – 

We passed the Setting Sun –

Or rather – He passed us –

The Dews drew quivering and chill –

For only Gossamer, my Gown –

My Tippet – only Tulle –

We paused before a House that seemed

A Swelling of the Ground –

The Roof was scarcely visible –

The Cornice – in the Ground –

Since then – ‘tis Centuries – and yet

Feels shorter than the Day

I first surmised the Horses’ Heads

Were toward Eternity –

Marcia Angell's Review of Being Mortal

Karen Gunderscheimer, who is auditing our class, read a recent review of Gawande’s Being Mortal by Marcia Angell in the New York Review of Books.  Karen writes: “This [review] is well worth reading: lucid writing, beautifully developed, and also compelling. Angell is both author and physician.  She was the Executive Editor of the New England Journal of Medicine from 1988 – 2000.  Her very personal experiences with hospice are revelatory, her view on end of life issues is somewhat at odds with current thinking.

Her review: “A Better Way Out” is available free full text online.

Her husband’s Arnold “Bud” Relman’s essay entitled “On Breaking One’s Neck” is a companion piece. It also appeared in The New York Review of Books.

The Relman's were the ultimate "power couple" of American medicine.

The Relmans in Happier Days

Angel and Relman after Breaking His Neck

 

Prescribing the End-of-Life Conversation

by Dr. Angelo Volandes (Boston Globe, January 11, 2015)

Is saving the life of a terminal patient always the best medicine?

Image from The Globe article

"End-of-life care in America is broken at every level. A recent Institute of Medicine report paints a damning picture of end-of-life care in this country: It needs to be entirely overhauled. We live in a city with some of the best hospitals in the world, the “Wall Street” of American health care. I work in one of the best hospitals on earth, and I’ve watched patients die in ways that are protracted, dehumanizing, and far more painful than they needed to be."

"Sometimes, patients and families don’t want to face death. But more often, the problem lies with the medical profession. The principal reason we have gotten death so wrong is because doctors fail to have meaningful discussions with patients and their families about how to live life’s final chapter."

"Americans receive some of the best health care money can buy; they also experience some of the worst deaths in the developed world. By most accounts, the American transformation of death from a natural process occurring at home to a medicalized event taking place outside of the home has been disastrous. The health care system is teeming with brilliant scientists, but there is a dearth of effective communicators and advocates."

"What people need most on this journey is not the promise of the next new technology, but rather a guide to help them navigate this dark forest in which we all will undoubtedly find ourselves. People need doctors who are honest enough and capable of explaining new technologies with the accompanying risks and benefits, and discussing whether those technologies would truly benefit them."

The author has recently published a book on this topic, "The Conversation."

On the Death of a Colleague

I was fortunate to hear Ranjana Srivastava speak at a conference last year.  So, when an essay of hers appeared in the New England Journal of Medicine this week, I eagerly read it.

Dylan Thomas famously intoned. “After the first death there is no other” – but perhaps there are many types of “first deaths.”  That of a child, that of a parent, a lover, sibling, and in Dr. Srivastava’s case – that of a beloved mentor and colleague.

“I marvel that in a hospital that routinely and efficiently deals with life, death, and all the intervening drama, the passing of our colleague has shattered the established structure for coping with loss."

"There seems to be an expiration date to grieving, a point when it becomes

tedious to others.”

If you go to the pdf of On the Death of a Colleague, you will need to scroll down on page one to get to the essay.  NEJM does not make it easy to share its pieces.

Getting Grief Right

A friend, Dr. Brenda Dintiman, suggested I send this essay to our Winter Study class.  I would like to thank her for alerting me to notable piece.

Getting Grief Right 

by Patrick O’Malley

NY Times January 11, 2015

Many people and those around them believe that there is a time limit to their grief. "The truth is that grief is as unique as a fingerprint, conforms to no timetable or societal expectation."

Grief can cause “profound emotional chaos.”

“’All sorrows can be borne if you put them in a story or tell a story about them,’ said the writer Isak Dinesen. When loss is a story, there is no right or wrong way to grieve. There is no pressure to move on. There is no shame in intensity or duration. Sadness, regret, confusion, yearning and all the experiences of grief become part of the narrative of love for the one who died.”

Image from Times article

On Suffering

The poet, W. S. Merwin, wrote: "Everybody understands suffering. It's something that we all share with everybody else. It's at once utterly intimate, and utterly shared. So Buddha says, 'That's a place to begin. That's where we begin.'"

See PBS special on The Buddha.

How To Read A Poem

by Pamela Spiro Wagner

First, forget everything you have learned,

that poetry is difficult,

that it cannot be appreciated by the likes of you,

with your high school equivalency diploma,

your steel-tipped boots,

or your white-collar misunderstandings.

Do not assume meanings hidden from you:

the best poems mean what they say and say it.

To read poetry requires only courage

enough to leap from the edge

and trust. 

Treat a poem like dirt,

humus rich and heavy from the garden.

Later it will become the fat tomatoes

and golden squash piled high upon your kitchen table.

Poetry demands surrender,

language saying what is true,

doing holy things to the ordinary.

Read just one poem a day.

Someday a book of poems may open in your hands

like a daffodil offering its cup

to the sun.

When you can name five poets

without including Bob Dylan,

when you exceed your quota

and don’t even notice,

close this manual.

Congratulations.

You can now read poetry.

From We Mad Climb Shaky Ladders by Pamela Spiro Wagner.

The Diary of an Ebola Doctor

Death Becomes Disturbingly Routine:
The Diary Of An Ebola Doctor

NPR – Sunday, January 11, 2015 

Dr. Selenikio in Sierra Leone

Since early December, American doctor Joel Selanikio has been treating Ebola patients in Lunsar, Sierra Leone, about 60 miles from the capital of Freetown. As he wrapped up his tour with the International Medical Corps, he sent along an audio diary of his time in the epidemic's hot zone. Hear his full diary by clicking this audio link.

AN EARLY AFTERLIFE

by Linda Pastan  Web Site

in the fallacy of perfect health
before whatever is going to happen
happens. We could perfect our parting,
like those characters in On the Beach
who said farewell in the shadow
of the bomb as we sat watching,
young and holding hands at the movies.
We could use the loving words
we otherwise might not have time to say.
We could hold each other for hours
in a quintessential dress rehearsal.

Then we could just continue
for however many years were left.
The ragged things that are coming next—
arteries closing like rivers silting over,
or rampant cells stampeding us to the exit—
would be like postscripts to our lives
and wouldn’t matter. And we would bask
in an early afterlife of ordinary days,
impervious to the inclement weather
already in our long-range forecast.
Nothing could touch us. We’d never
have to say goodbye again.

—Linda Pastan, from An Early Afterlife

On the Seashores of the World

from Gitanjali.  Tagore

There was a scene in “The Suicide Tourist” of the Ewert children playing on the seashore.  It was reminiscent of this selection from Tagore's Gitanjali.

"On the seashore of endless worlds children meet. The infinite sky is motionless overhead and the restless water is boisterous. On the seashore of endless worlds the children meet with shouts and dances.

They build their houses with sand and they play with empty shells. With withered leaves they weave their boats and smilingly float them on the vast deep. Children have their play on the seashore of worlds.

They know not how to swim, they know not how to cast nets. Pearl fishers dive for pearls, merchants sail in their ships, while children gather pebbles and scatter them again. They seek not for hidden treasures, they know not how to cast nets.

The sea surges up with laughter and pale gleams the smile of the sea beach. Death-dealing waves sing meaningless ballads to the children, even like a mother while rocking her baby's cradle. The sea plays with children, and pale gleams the smile of the sea beach.

On the seashore of endless worlds children meet. Tempest roams in the pathless sky, ships get wrecked in the trackless water, death is abroad and children play. On the seashore of endless worlds is the great meeting of children."

NUNC LENTO SONITU DICUNT, MORIERIS.

Devotions Upon Emergent Occasions

John Donne: Meditation XVII

No man is an island, entire of itself; every man is a piece of the continent, a part of the main; if a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend's or of thine own were;  any man's death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls; it tolls for thee.

Full text of Meditation XVII

How to Save Your Life

A Response to Leelah Alcorn's Suicide Note

by Jennifer Finney Boylan

NY Times, January 7, 2015  

"They placed an unlit candle in my hands. Hundreds of people sat quietly in chairs. This was at the L.G.B.T. Community Center in Greenwich Village in November, at an event called the Transgender Day of Remembrance.

It happens every year, people coming together to mourn trans individuals lost to murder or suicide. As a trans woman, I wish that the one day on the calendar that recognizes transgender experience was about celebrating the successes of our diverse community, rather than counting the lives we’ve lost. But the losses go on, year after year. And so I lit that candle."

Kathy McKnight who is auditing this class alerted me to this essay.  It highlights what we discussed in class on January 6.

Also see Poems 1.8.15